Assessing the quality of life of adolescents with sickle cell disease and their transition to adult medicine: experience in a remote area of the Democratic Republic of Congo

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It causes high morbidity and mortality rates and is a real public health problem in the Democratic Republic of the Congo. Regular medical follow-up improves the quality of life of patients, especially adolescents, and raises the issue of their transition to adult medicine. This study aims to assess the quality of life and transition of sickle-cell adolescents, identifying key factors influencing their well-being. Method This was a cross-sectional descriptive and observational study conducted in the form of interviews with 106 sickle cell adolescents in Mbujimayi. The SF-36 short questionnaire was used to assess quality of life. A closed questionnaire (dichotomous or nominal) was used to assess the transition period. Results The results revealed an overall optimal quality of life, with an average SF-36 score of 60.6 ± 8. Improvement in pain management (75,21 ± 23,49) and misperception of role limitations related to emotional issues (47,79 ± 27,53). Pain is the main factor affecting quality of life. It is significantly associated with physical functioning (p 0.014), energy/fatigue (p 0.014), functional/physical role (p 0.001), emotional well-being (p 0.000), social functioning (p 0.000) and pain itself (p 0.000). The majority, 92% of the adolescents, were unaware of the transition, and 68% did not feel ready to move from pediatric care to adult care. Conclusion These findings highlight the importance of considering the quality of life of sickle cell adolescents and their transition to adult medicine in Mbujimayi, highlighting the challenges they face and the factors that affect their well-being in general. Sickle cell disease Quality of life Adolescent Transition Adult medicine Figures Figure 1 1. Background Sickle cell disease (SCD) is a hematological genetic disorder characterized by the presence of abnormal hemoglobin and hemoglobin S. This disease affects mainly red blood cells, leading to complications such as vaso-occlusive seizures, chronic pain, neurological infections and complications[1]. The world’s first genetic disease, sickle cell disease, was declared a public health priority by the United Nations in 2008 at the 63rd session of the UN General Assembly. According to a study by Piel et al. in 2017, there were more than 250,000 births of children with a severe form of this disease in Africa.. Without early and appropriate care, 50 to 90% of these newborns die before the age of five [3]. In Central Africa, the incidence of sickle cell disease at birth is estimated to be 1–2%, the highest in the world. In sub-Saharan Africa, the largest number of sickle cell births after Nigeria is in the Democratic Republic of the Congo (DRC). In high-income countries, the increased survival and improved quality of life of sickle cell patients are limited due to the use of sophisticated therapies such as stem cell transplantation; however, more support systems organized with early and adequate patient management are needed [5,6]. Simple, accessible and less costly measures, with regular medical follow-up, would improve the health of SCD patients in sub-Saharan Africa if rigorously applied [7]. Since 2016, a medical follow-up programme for sickle cell children has been set up in Mbujimayi at a treatment centre in the DRC. The establishment of a sickle cell referral centre and regular medical monitoring of sickle cell children in a remote town in sub-Saharan Africa demonstrated a reduction in sickle cell morbidity and mortality. Regular medical follow-up consists of the strict application of simple management measures, such as the administration of folic acid and oral penicillin, and a regular medical visit with a biological balance check-up, which contributes to a reduction in mortality related to the disease [8]. To date, the centre has a cohort of more than 650 sickle cell children who have been followed for 8 years, the majority of whom have reached adolescence and need to be transferred to adult medicine. This situation creates new challenges for adult physician training on sickle cell disease and the establishment of a transition clinic. Adolescents with sickle cell disease may face particular challenges in terms of their quality of life and psychological and social well-being. Addressing the specific needs of sickle adolescents is essential for improving their quality of life. This implies a holistic approach that takes into account not only the medical aspects of the disease but also its psychosocial and emotional dimensions [9]. Sickle cell adolescents often need psychological support to cope with the challenges of their disease, such as managing pain, adapting to lifestyle restrictions and managing stress [10,11]. This anxiety may be exacerbated by a lack of preparation and support during the transition [12]. This highlights the importance of well-structured transition programs to ensure continuity of care and appropriate management for adolescents with sickle cell disease. The transition of sickle cell adolescents to adult medicine has never been studied in Mbujimayi, DRC, and no data have been found in the literature on this subject. This study aims to assess the quality of life of sickle cell adolescents during their transition to adult medicine and identify the main factors that influence quality of life and transition in the context of a remote city in the DRC. 2. Method 2.1. Context of the study This study was conducted in Mbujimayi, the capital of Kasai Province in the DRC [8]. It is the third largest city in terms of population. Mbujimayi’s population in 2024 is now estimated at 3,000,000 (Mbujimayi demographic data in 2024), covering an area of 135.12 km 2 and corresponding to a population density of 12441 inhabitants/km 2 [13]. In the DRC, sickle cell disease management is covered by the national sickle cell control programme (PNLCD). In line with the health system strengthening strategy, PNLCD recommendations do not integrate primary health care activities. The study was conducted at the Mbujimayi Pediatric Clinic, one of the largest specialized pediatric facilities in Mbujimayi. This clinic represents a vertical program that is a private philanthropic program that is integrated into the primary health care of the DRC health system. This clinic has been providing up-to-date sickle cell disease management since 2016, with regular follow-ups at no cost to patients. It includes a pediatric ward with a capacity of 35 beds that are constantly occupied, a care unit room with a hospital room dedicated only to sickle cell patients and a center for research and training on sickle cell disease. There is also a neonatal unit, a maternity ward and a semiautomated laboratory. 2.2. Study type and inclusion criteria Descriptive observational study conducted from 01 February to 30 May 2024 at the Mbujimayi Pediatric Clinic in DRC. It affects all adolescents with homozygous sickle cell disease (aged between 10 and 25 years), followed for 8 years at the pediatric clinic of Mbujimayi. Sickle cell adolescents accounted for 21% (136/650) of all sickle cell patients. Regular medical follow-up at no cost to patients was provided by pediatricians assisted by resident doctors with a university degree in sickle cell disease. 2.3 Study parameters and operational definitions Adolescents are defined as young people aged between 10–24 years; this is derived from the consideration of the age of adolescents who can reach 24 years, although according to the WHO, it is between 10–19 years [14]. Gender: with the characteristics of “male” and “female”; Age: assessed according to the last date of birth; Schooling: with the characteristics of “yes” and “no”, determining whether the adolescent is in school; Persons with whom the adolescents live: determining the primary guardianship of each adolescent; Reason for finding the disease: indicates the main sign or symptom that led to the first diagnosis of sickle cell disease; Drinking alcohol; determining the habit of drinking alcohol; General health status: determining the state of health taken as a whole, that is, mental, physical and socioeconomic well-being on assessment by the respondent; Chronic complication of sickle cell disease: determining chronic complications such as osteoarticular or other conditions. Significant or unusual physical effort: determining the threshold for limiting unusual activities as per patient’s assessment; Having stopped doing certain activities: determining the fact that the teenager felt obliged to stop doing a usual activity such as walking, studying, etc.; Having had difficulty performing certain activities: determining the degree of discomfort felt by the adolescent to begin certain usual activities; Have sought counselling: determining whether the young person has had to seek counselling from a pastor, parents, paediatrician or any adult; Lack of concentration: Whether the teenager has experienced a lack of concentration in the last 4 weeks; Mental health: determining well-being to achieve potential to cope with life difficulties; Physical pain (seizures): Determining whether the adolescent had vaso-occlusive seizures within 4 weeks prior to the study; The intensity of pain, with "low", "medium" and "high" characteristics, determines the degree of pain intensity felt by the adolescent; Desire to have a child: determining whether the teenager would want to have a child in the future and that despite his or her illness; Have heard about transition: determining the threshold of knowledge for adolescents on the transition (steps to leave paediatrics and move to adult medicine); Having the means to pay the fees: determining the financial level of adolescents to pay for treatment in adult medicine. 2.4. Collection of data Data collection was performed by the same investigator on a survey form during follow-up consultations. The interviews were conducted in French, but the use of the vernacular (Tshiluba) was sometimes necessary. The questionnaire was developed in collaboration with the Mashi research and training centre (Sickle cell disease research and training centre in Kasai) and the team at the Mbujimayi Pediatric Clinic. It was previously tested in 10 sickle cell adolescents. The answers to this test were used to improve the questionnaire and, in particular, the aspects related to the transition to adult medicine. The SF-36 questionnaire [16] was used for quality of life assessment. The SF-36 is derived from the Medical Outcomes Study (MOS) questionnaire. It is a robust and reliable questionnaire intended to provide a generic measure of perceptual health [17]. The SF-36 consists of 36 questions to assess quality of life related to general health. The 36 questions are divided into eight dimensions, each corresponding to a different aspect of health. These dimensions are physical functioning, role limitations due to physical problems, role limitations resulting from emotional problems, vitality (energy/fatigue), emotional well-being, social functioning, bodily pain, and perceptions of general and mental health. The score of each dimension of the SF-36 is the dependent variable of our study. These are discrete, finite quantitative variables whose measurement scale is ordinal. Finally, a score ranging from 0 to 100 was calculated for each dimension of the SF-36. A low score reflects a perception of poor health, loss of function, and the presence of pain. A high score reflects a perception of good health, no functional deficit and no pain [17,18]. The health status of the participants was assessed by referring to the patient’s medical records after the participant agreed. The presence or absence of general health problems and a history of transfusion, hospitalization, painful seizures and febrile episodes were evaluated. The questions were either closed (dichotomous or nominal) or answered on a Likert scale for self-assessment [19]. 2.5. Statistical analysis of data The data were recorded with Excel 2007 software and finally analysed with EPI INFO 7.1.3.0 (USA, CDC Atlanta, 2008) and SPSS (version 20, Chicago, IL). The descriptive statistics allowed us to present data in the form of tables of frequencies and confidence intervals at the 95% threshold for comparison of proportions. Simple descriptive statistics were used to define the following study variables: the numbers and percentages for categorical and nominal variables and the means and constant (SD) deviations for continuous variables. To establish a relationship between patient characteristics and health outcomes, a chi-square test was used for categorical variables, and an independent t test was used for continuous variables. P < 0.05 was considered statistically significant. Linear regression analysis To identify factors associated with physical and mental health and to control for confounding factors, we constructed multivariate linear regression models. The dependent variables in the first and second models were the summary of physical components and the summary of mental components, respectively. We used reverse elimination to select variables from each regression model. We estimated the regression coefficients (β) and their confidence intervals at 95%. For all the statistical tests, P < 0.05 was defined as the significance level. 3. Results Of a total of 650 sickle cell syndrome patients followed since 2016. Among these patients, 21% (136/650) had reached adolescence at the time of the study. Among the 136 selected files, data analysis was conducted on 106 adolescents who responded to the invitation. The mortality rate in adolescence after regular medical follow-up was 5%, with 7 patients dying by the time of the study. The flow diagram is shown in Fig. 1. 3.1. Sociodemographic data The sociodemographic data are included in Table 1 . The average age was 18 ± 3 years, with a sex ratio of 1.3 in favour of boys. Table 1 Socio-demographic characteristics of adolescents with sickle cell disease Parameter Numbers Percentage Confidence interval Age of adolescents (year) - 14–17 68 64 54,26–73,23 - ≥ 18 38 36 26,77 − 45,74 Sex of adolescents (sex ratio = 1,3) - Male 60 57 46,63–66,20 - Female 46 43 33,80 − 53,37 Schoolchildren - Yes 95 90 82,19–94,70 - No 11 10 5,30 − 17,81 People with whom the adolescents live - Alone/ Friends 13 12 6,69 − 20,06 - Parents / others relatives 93 88 79,94 − 93,31 Alcohol consumption - Yes 33 31 22,49 − 40,86 - No 73 69 59,14–77,51s 3.2. Assessment of the transition period of sickle cell adolescents to adult medicine The results revealed that 92% of sickle cell adolescents had never heard about the transition to adult medicine in the past and that 68% were not ready to integrate into adult medical care. Among those surveyed, 96% expressed a desire to have a child or pregnancy; of these, 78% wanted to have a natural birth, and the vast majority (81%) were not in favour of therapeutic abortion if the diagnosis was utero positive for a homozygous SS fetus. From the school point of view, the majority of sickle cell adolescents were in school (90%), with an almost equal distribution of boys and girls. On the social front, data reported that 12% (13/106) lived alone or with friends outside of the family roof and that 31% (33/106) consumed alcohol. Analysis of these data revealed that the majority of sickle cell adolescents living alone or with friends consumed alcohol, 77% (10/13), whereas 25% (23/93) still lived with their parents or relatives (odds ratio 10.14, p value 0.000). The remaining data for the transition period are included in Table 2 . Table 2 Assessment of the transition period for adolescents with sickle cell disease Parameters Frequency Percentage Confidence interval Have heard about the transition - Yes 8 8 3,31 − 14,33 - No 98 92 85,67–96,69 Being ready to move into adult medicine - Yes 34 32 23,34–41,84 - No 72 68 58,16–76,66 Feel ready to adapt adult medicine - Yes 81 76,4 59,38–88,63 - No 25 23,6 17,37–40,62 Be prepared enough for the transition - Yes 25 24 15,88 − 32,82 - No 81 76 67,18–84,12 Have the means to pay for adult medicine treatment - Yes 21 20 12,70 − 28,68 - No 85 80 71,31–87,30 3.3. Quality of life assessment The Table 3 describes the rating of the quality of life scale (SF-36). This assessment covers 8 dimensions: physical functioning, role limitations due to physical problems, role limitations resulting from emotional problems, vitality (energy/fatigue), emotional well-being, social functioning, physical pain, and perceptions of general and mental health. A score for each dimension of the SF-36 was calculated, ranging from 0 to 100. A low score reflects a perception of poor health, loss of function, and the presence of pain. A high score reflects a perception of good health, no functional deficit and no pain. The overall average 8-dimensional score is 60.6 8, indicating an optimal health status for sickle adolescents during the transition period. However, there is a better perception of pain with a rating of 75 out of 100 and a poor perception of role limitations due to emotional problems with a rating average of 48 out of 100. Table 3 Rating of the quality of life scale (SF-36) Parameters Average* SD - Physical operation 59,10 18,67 - Role limitations due to physical health 60,66 36,65 - Role limitations due to emotional issues 47,79 27,53 - Energy/Fatigue 67,68 13,70 - Emotional well-being 61,20 18,15 - Social functioning 60,37 27,52 - Pain 75,21 23,49 - General health 52,70 6,82 * Overall average 60,6 8. SD : Standard deviation Comparison of the mean scores of different dimensions. Table 4 a and Table 4 b show that sickle cell adolescents over 18 years of age had better perceptions of emotional well-being, pain and general health than did those under 18 years of age (p values of 0.003, 0.015 and 0.03, respectively). In contrast, those who were not educated had better perceptions of functional/emotional roles (p value 0.025), emotional well-being (p value 0.03) and social functioning (p value 0.000) than those who were educated. Those who consumed alcohol had a better perception of the functional/physical role (69 vs 56) than did those who did not consume alcohol (p value 0.05). Sickle cell adolescents who did not have painful seizures had good average scores for the dimensions of social functioning and pain, with p values of 0.04 and 0.005, respectively. Sickle adolescents at regular medical visits with regular intake of folic acid and those who did not appear to be tired from treatment had better scores, with p values less than 0.05, in the following dimensions: physical function, functional and emotional role, emotional well-being and pain. The results of the multiple linear regression analysis of factors associated with the quality of life score are presented in Table 5 . We included only those factors whose p value was significantly associated with either dimension of the SF-36 assessment. Table 4 a. Comparison of mean scores for different domains of quality of life in adolescents with sickle cell disease (Average and standard deviation) Parameter Physical operation Functional/ physical role Functional/ emotional role Energy/fatigue Emotional well being Social functioning Pain General health Age 14–17 58,61(19,38) 46,40(27,61) 46,40(27,61) 66,18(14,407) 59,94(18,67) 60,294(25,54) 73,45(21,57) 51,844(7,61) ≥18 60,00(17,12) 49,12(27,65) 49,12(27,65) 70,26(12,07) 63,47(17,17) 60,526(31,10) 78,35(26,60) 53,71(5,00) p-value 0,237 0,955 0,955 0,217 0,003 0,181 0,015 0,031 Sex Male 58,59(19,56) 64,17(35,46) 48,33(25,61) 67,58(13,85) 61,20(18,46) 61,04(28,56) 76,22(24,94) 51,68(7,51) Female 59,78(17,63) 55,43(37,97) 46,13(30,08) 67,72(13,65) 61,22(17,94) 59,51(26,37) 73,80(21,63) 53,59(5,71) p-value 0,340 0,454 0,151 0,430 0,462 0,226 0,108 0,142 Schoolchildren Yes 59,00(18,80) 58,16(36,72) 46,19(27,99) 66,84(13,56) 59,49(17,65) 58,158(27,75) 73,39(23,60) 52,48(6,37) No 60,00(18,30) 79,54(31,26) 57,57(21,55) 74,55(13,50) 76,00(16,19) 79,545(16,07) 90,90(15,94) 52,72(10,33) p-value 0,971 0,232 0,025 0,318 0,032 0,000 0,009 0,187 Persons with whom the adolescents live Alone/Friends 58,46(14,19) 94,23(14,97) 56,41(25,03) 78,08(8,30) 72,31(17,39) 79,80(19,45) 94,03(14,77) 55,00(5,00) Parents/Other relatives 59,19(19,27) 55,64(36,32) 46,11(27,75) 66,18(13,70) 59,66(17,79) 57,66(27,46) 72,58(23,33) 52,16(6,99) p-value 0,215 0,000 0,092 0,030 0,173 0,000 0,002 0,204 Alcohol consumption Yes 59,09(19,01) 68,93(31,26) 51,51(26,47) 67,73(12,56) 59,15(19,28) 59,09(28,34) 76,59(23,98) 52,75(8,00) No 59,11(18,64) 56,51(38,42) 45,50(27,97) 67,60(14,26) 62,14(17,67) 60,95(27,31) 74,58(23,40) 52,40(6,28) p-value 0,912 0,051 0,429 0,496 0,169 0,451 0,720 0,234 Chronic complication of sickle cell disease Yes 52,91(20,37) 36,46(33,77) 39,81(30,72) 60,42(14,73) 53,83(15,24) 48,438(27,90) 60,83(22,76) 51,08(5,50) No 60,92(17,87) 67,37(34,62) 49,59(26,31) 69,76(12,71) 63,37(18,44) 63,872(26,57) 79,42(22,11) 52,93(7,14) p-value 0,180 0,682 0,241 0,535 0,038 0,579 0,501 0,122 Table 4 b. Comparison of mean scores for different domains of quality of life in adolescents with sickle cell disease (Average and standard deviation) (continued Table 4 a) Parameter Physical operation Functional/ physical role Functional/ emotional role Energy/fatigue Emotional well being Social functioning Pain General health Have experienced physical pain (Crisis) Yes 60,00(18,63) 41,81(30,06) 38,58(28,35) 60,82(12,27) 51,13(13,34) 46,13(24,98) 56,90(16,014) 51,10(6,57) No 58,14(18,84) 80,39(32,51) 56,86(23,37) 75,00(11,18) 72,08(16,34) 75,73(21,27) 94,95(10,77) 54,02(6,83) p-value 0,685 0,740 0,053 0,637 0,394 0,044 0,005 0,757 Keep up to date with medical check-ups Yes 59,31(19,04) 62,93(37,52) 48,53(28,15) 69,71(12,72) 64,23(17,88) 65,230(26,85) 79,28(22,15) 52,66(7,04) No 58,15(17,33) 48,68(30,58) 42,10(24,44) 58,16(14,35) 47,37(12,16) 38,158(18,38) 56,57(20,66) 51,84(5,82) p-value 0,754 0,011 0,264 0,008 0,002 0,000 0,031 0,520 Be able to pay for the treatment costs Yes 59,28(19,44) 62,65(37,52) 50,06(27,18) 70,00(13,02) 63,90(18,29) 65,06(26,89) 78,91(22,04) 52,36(6,94) No 58,48(15,92) 52,17(32,781) 37,68(27,16) 59,13(12,93) 51,48(14,08) 43,47(23,19) 61,84(24,18) 53,04(6,52) p-value 0,188 0,059 0,839 0,354 0,012 0,063 0,717 0,655 Being tired from regular treatment Yes 54,34(21,03) 44,33(35,23) 38,78(31,01) 64,81(12,20) 56,08(14,64) 52,12(27,26) 65,75(20,79) 51,81(7,34) No 63,87(14,67) 76,41(30,77) 55,97(20,43) 70,47(14,61) 66,34(19,93) 68,63(25,43) 84,67(22,35) 53,21(6,26) p-value 0,001 0,274 0,001 0,079 0,002 0,279 0,003 0,382 Feeling ready to adapt to adult medicine Yes 58,64(19,96) 60,18(35,74) 43,89(27,71) 66,23(13,31) 58,72(17,89) 58,02(27,69) 72,68(24,19) 52,10(7,27) No 60,60(13,94) 61,00(40,23) 58,66(24,11) 72,20(14,22) 69,28(16,88) 68,00(26,04) 83,40(19,26) 53,84(5,03) p-value 0,016 0,298 0,029 0,511 0,357 0,157 0,026 0,089 Table 5 Multiple linear regression analysis of factors associated with the quality of life score Parameter Coeff β Std. Error Beta t p Physical operation - Have experienced physical pain (Crisis) -11,071 4,436 -0,298 -2,496 0,014 - Being tired from regular treatment 13,936 4,208 0,375 3,312 0,001 Functional/physical role - People with whom the adolescents live -23,008 10,930 -0,207 -2,105 0,038 - Chronic complications of sickle cell disease 15,539 7,508 0,178 2,070 0,041 - Have experienced physical pain (Crisis) 23,945 7,294 0,328 3,283 0,001 - Being tired from regular treatment 14,403 6,920 0,197 2,082 0,040 Functional/emotional role - Feeling ready to adapt to adult medicine 15,248 6,117 0,236 2,493 0,014 Energy/fatigue - People with whom the adolescents live -9,303 3,962 -0,224 -2,348 0,021 - Have experienced physical pain (Crisis) 11,431 2,644 0,419 4,324 0,000 - Be able to pay for the treatment -6,607 2,855 -0,200 -2,314 0,023 - Feeling ready to adapt to adult medicine 6,474 2,581 0,202 2,508 0,014 Emotional well-being - Schoolchildren 11,312 4,640 0,191 2,438 0,017 - Have experienced physical pain (Crisis) 17,079 3,268 0,472 5,227 0,000 - Be able to pay for the treatment -7,417 3,529 -0,169 -2,102 0,038 - Feeling ready to adapt to adult medicine 10,448 3,190 0,246 3,275 0,001 Social functioning - Schoolchildren 14,830 7,370 0,165 2,012 0,047 - People with whom the adolescents live -17,306 7,778 -0,207 -2,225 0,028 - Have experienced physical pain (Crisis) 22,575 5,190 0,412 4,349 0,000 - Be able to pay for the treatment -13,259 5,605 -0,200 -2,366 0,020 Pain - People with whom the adolescents live -9,609 4,434 -0,135 -2,167 0,033 - Have experienced physical pain (Crisis) 33,783 2,959 0,722 11,418 0,000 - Be able to pay for the treatment -7,467 3,195 -0,132 -2,337 0,022 - Feeling ready to adapt to adult medicine 9,907 2,888 0,180 3,430 0,001 General health - Sex 3,546 1,486 0,259 2,387 0,019 4. Discussion In the Democratic Republic of the Congo, sickle cell disease is a major public health issue. With improved management, a majority of children with this disease manage to reach adulthood but face many chronic complications, including adolescents. The aim of this study in Mbujimayi was to contribute to a better understanding of the disease and to improve the management of sickle cell adolescents. The results of this study show that men are more affected, with 57% of cases, which corresponds to a sex ratio of 1.3 in favour of men. These data are consistent with those obtained in other studies conducted in different countries, such as Brazil [20], the Congo Brazzaville [21] and Saudi Arabia [22], which also reported a male/female ratio of approximately 1.2 in favour of men. In contrast, a study conducted in France reported a sex ratio of 2.2 in favour of women [23]. This disparity could be explained by the fact that the French study aimed to assess the quality of life of adults with sickle cell disease, whereas the study in Mbujimayi focused on adolescents. In addition, the size of the sample studied in each study, 570 participants for the French study versus 106 for the Mbujimayi study, could also influence the differences observed in the male/female ratios. This study revealed that a significant percentage of 31% of adolescents with sickle cell disease consumed alcohol. In addition, living alone and/or with friends significantly increased the risk of alcohol consumption, with a 10.14-fold increase in risk (p = 0.000). These results are in agreement with those of James Levenson and colleagues [24], however they contradict the findings of the study by Christina and her collaborators, who noted a limitation of alcohol intake among sickle cell adolescents [25]. These results may be explained by the fact that many patients with chronic diseases, including sickle cell disease, use excessive alcohol to relieve their symptoms and cope with stress associated with their illness. In addition, a lack of parental supervision may lead to adolescents feeling more free to consume alcohol, which contributes to the increased risk observed in this study. In summary, these results highlight the importance of taking into account social and psychological factors in managing sickle cell disorders in adolescents, particularly with respect to alcohol consumption and associated risk behaviours. Among the adolescents interviewed for this study, 96% expressed a desire to become pregnant or to start a family in the future. More specifically, among these adolescents, 78% expressed a preference for natural delivery, indicating a strong inclination for a noninterventionist approach to birth. In addition, a large majority of these adolescents, 81%, said that they did not support the idea of therapeutic abortion if a positive prenatal diagnosis for an SS homozygous foetus was made. These findings corroborate those of Leena and her colleagues [26], and 61.1% of the patients interviewed expressed a desire to have biological children in the future. This consistency between the two studies suggests a strong tendency among young people to view biological parenthood as an important aspiration for the future. One possible explanation for these findings could be linked to the widely held perception that the desire to procreate and start a family is a natural and legitimate instinct rooted in human nature. This view of parenthood as an essential element in the creation and continuity of life could influence adolescent attitudes towards complex issues such as therapeutic abortion in specific cases, such as those discussed in the study. 4.1. Transition of sickle cell adolescents The results of the study revealed that 92% of the adolescents with sickle cell disease interviewed were previously unaware of the need for a transition to adult medical care. Furthermore, an overwhelming majority of these adolescents (68%) did not feel ready to integrate this type of medical management. These findings contrast with the findings of other studies, notably those of Wally R. Smith [27], who reported that 50% of sickle cell syndrome patients in the United States were familiar with the transition to adult medicine and had previously consulted an adult sickle cell specialist, and Christelle Dorbon and colleagues [28], who reported that 57% of sickle cell syndrome adolescents were aware of this transition and had adhered to the process. This disparity in outcomes can be explained in part by the socioeconomic context and health system in place. The studies by Wally R. Smith and Christelle Dorbon were conducted in high-income countries, where sickle cell disease management is better organized from birth. However, studies on the transition of sickle cell adolescents in sub-Saharan Africa, where the prevalence of the disease is relatively high and medical resources are relatively limited, remain rare. Importantly, most sickle cell syndrome patients do not reach adolescence because of a lack of regular medical follow-up, the unavailability of treatments such as hydroxyurea and the absence of a marrow transplant. Another crucial aspect of this study is the lack of specialized centers in transition care and the deficit of adult doctors trained to manage sickle cell disease, which compromises the preparation of sickle cell adolescents for adult medicine. This poses a major challenge in terms of the continuity of care for sickle cell syndrome patients after their follow-up in pediatrics. 4.2. Health-related quality of life and associated factors In this study, adolescents with sickle cell disease had an optimal quality of life, as evidenced by the overall SF-36 average rating of 60.6 8, including the eight dimensions of the quality of life assessment mentioned above. These results are in line with previous studies conducted in Saudi Arabia by Nada Ahmed Al Sayigh [29], Mostafa Abdel-Monhem [22], in France by Issifou Yaya [23] and in the Congo Brazza by J.R. Mabiala [21]. The quality of life observed in our study can be explained by the early and regular medical follow-up that sickle-cell adolescents receive from an early age. This approach allows for more effective and early management of their disease, thus promoting a better quality of life. Among the factors related to quality of life in adolescents with sickle cell disease, this study revealed that women scored higher on physical function, energy/fatigue, emotional well-being and overall health. In addition, sex was statistically correlated with a better rating of overall health status (p = 0.019). These findings contradict those of Nada Ahmed Al Sayigh in Saudi Arabia [29], who reported that men had higher quality of life scores and that sex influenced physical function and pain. This disparity can be explained by the fact that Sayigh’s study was conducted with adults and that women were underrepresented. However, a study conducted by J R Mabiala in the Congo Brazzaville [21] did not identify any significant link between gender and quality of life. This lack of association may be because Mabiala did not use scores to assess quality of life. The consideration of gender and quality of life scores may play a crucial role in understanding the impact of sickle cell disease on adolescents' lives. In this study, out-of-school children had higher quality of life scores in several specific areas. Compared with those of school-aged children, scores of functional/emotional role (p 0.025), emotional well-being (p 0.032), physical functioning (p 0.000) and pain management (p 0.009) significantly improved. In contrast, school children showed a statistically significant correlation with quality of life in terms of emotional well-being (p 0.017) and social functioning (p 0.047). These results contrast with those obtained by Nada Ahmed Al and Lemchukwu Amaeshi, who reported a better quality of life in sickle cell syndrome patients with higher scores [29,30]. This disparity can be explained by the challenges that schooling can create, such as the constant stress of school assessments and the stigma and discrimination that adolescents may face in school. Some sickle-celled adolescents may experience feelings of debasement and differences from their peers due to their illness, which can also result in school absenteeism related to sickle-cell complications. Adolescents living alone or with friends had better quality of life in terms of functional/physical role (p 0.000), energy/fatigue (p 0.03) and social functioning (p 0.000). Logistic regression revealed that whether parents live under the roof of their parents is a factor influencing adolescents' quality of life in the areas of social functioning (p 0.028), functional/physical role (p 0.038), energy/fatigue (p 0.021), and pain management (p 0.033). It is undeniable that sickle adolescents living separate from their parents have not been studied enough. This specific population is often overlooked in research, despite the unique challenges it faces. Unaccompanied and isolated adolescents are generally vulnerable to family involvement, as they often have to assume responsibilities normally reserved for adults. Their access to social activities and involvement in activities typical of their age group may be limited, resulting in social and emotional isolation [25,31]. Despite these obstacles, sickle-cell adolescents separated from their parents show a remarkable ability to take charge of their health and develop self-confidence. This resilience can play a crucial role in their quality of life, particularly with respect to their physical functioning, energy levels and ability to manage the pain associated with sickle cell disease. Therefore, more in-depth research is essential to better understand the specific needs of this population and develop tailored interventions to improve their overall well-being. Adolescents who developed chronic complications of sickle cell disease had lower quality of life scores in all dimensions. Chronic complications of sickle cell disease were significantly associated with the functional/physical role dimension (p 0.041). These results are similar to those of Issifou Yaya [23]. The majority of authors did not treat chronic complications in adolescents with sickle cell disease. Adolescents who had vaso-occlusive seizures in the 4 weeks preceding the study had lower quality of life scores in all dimensions except physical functioning. Pain was significantly negatively associated with physical functioning (p = 0.014) and positively associated with energy/fatigue (0.014), functional/physical role (p = 0.001), emotional well-being (p = 0.000), social functioning (p = 0.000) and pain (p = 0.000). These results corroborate those of Rosana Quintella Brandão Vilela [20], Nada Ahmed Al sayigh [29], Issifou Yaya [23] and Lemchukwu Amaeshi [30]. Adolescents who were on regular folic acid treatment had the highest quality of life score in all dimensions assessed by the SF-36. However, regular treatment did not significantly influence the quality of life score. In our series, the patients were not on hydroxyurea treatment, which could explain why regular treatment has no influence on quality of life. Hydroxyurea is the only molecule that has been shown to reduce the frequency of painful seizures, acute chest syndrome and transfusion needs in sickle-cell syndrome patients with severe disease [32]. Studies are unanimous that regular hydroxyurea and is the only treatment to date that improves the quality of life of sickle-cell syndrome patients [33–35]. This study again shows the need for hydroxy-urea treatment in sickle cell patients, especially in sub-Saharan Africa where there is a prevalence of sickle cell disease. Efforts by governments, their multilateral partners and civil society actors are needed to make hydroxyurea available at an affordable cost for sickle cell patients in sub-Saharan Africa [36]. . Adolescents with the ability to pay for disease care had the highest quality of life score in all dimensions. More specifically, there was a statistically significant association with the energy/fatigue dimension (p = 0.023), emotional well-being (p = 0.038), social functioning (p = 0.020) and pain (p = 0.022). This seems logical because a higher socioeconomic family level improves the quality of life of people. These results are consistent with those of Issifou Yaya [23], R Mabiala [21] and Lemchukwu Amaeshi [30], who reported a link between quality of life and family income level. Socioeconomic health disparities within and between low- and middle-income countries are major global public health problems [37]. Several studies have demonstrated the importance of socioeconomic status for health outcomes [37–39]. 5. Conclusions The study of the quality of life and transition of sickle cell adolescents in Mbujimayi was the first in the DRC. These findings highlight the importance of considering the quality of life of sickle cell adolescents and their transition to adult medicine in Mbujimayi, highlighting the challenges they face and the factors that affect their well-being in general. Abbreviations DRC: Democratic Republic of the Congo SCD : Sickle cell disease PNLCD: The national sickle cell control programme : Programme national de lutte contre la drépanocytose MOS : Medical Outcomes Study SF-36 : Short Form 36 questionnaire Declarations Ethics approval and consent to participate : All parents or legal sponsors of patients provided written informed consent to participate in the study. The study protocol was reviewed and approved by the ethics committee of the Research Centre for Mashi-Sickle Cell Disease and Other Red Blood Cell Diseases (N/Ref: 012/CR/CRM/CPM/YMK/2024). The study was conducted in accordance with the principles of the Declaration of Helsinki II. The purpose and procedures of the study were explained to the participants and legal respondents. The participants were informed that they could withdraw at any time without further obligation and would continue to receive care without prejudice. The anonymity of the participants was guaranteed, and no personal data were recorded. Consent for publication : Not applicable Availability of data and materials : The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Competing interests : The authors declare that they have no conflicts of interest. The authors are solely responsible for the content and writing of this article. The study questionnaire was submitted and approved by the ethics committee of the Mashi Research Centre, sickle cell disease and other red blood cell diseases (N/Ref: 012/CR/CRM/CPM/YMK/2024). Written informed consent was obtained from each participant. All the data generated or analysed during this study are available from the author upon request. Funding : This research received no external funding. Author Contributions : B.G. coordinated the study during the publication, correction, and finalization of the manuscript. She provided important criticisms for improving the content and provided guidance and support for publication. B.M.M. is the main author of the study, of the questionnaire design, and of the data collection and interpretation for publication. C.K.M., S.K.M., A.K.M., and S.K.T. contributed to the data collection and reading of the article. All the authors declare that they have read and approved the final version of the manuscript. Acknowledgements: The authors wish to thank all the sickle cell patients who agreed to participate in the survey and for their time allocated to answering the questionnaire. 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What is the evidence that hydroxyurea improves health-related quality of life in patients with sickle cell disease? Hematology Am Soc Hematol Educ Program. 2012;2012:290–1. Mukinayi BM, Cibeyibeyi GK, Tumba GD, Gulbis B. Sickle cell disease in the Democratic Republic of the Congo: what are the obstacles to treatment with hydroxyurea? The Pan African Medical Journal [Internet]. 2021 Jan 15 [cited 2021 Apr 2];38(41). Available from: https://www.panafrican-med-journal.com/content/article/38/41/full Huang X, Pei X, Jian W, Xu M. Socioeconomic Disparities in Individual-Level Quality-Adjusted Life Years throughout Remaining Lifetimes: A National Representative Longitudinal Survey in China. Int J Environ Res Public Health. 2023 Mar 5;20(5):4612. Conley CC, Derry-Vick HM, Ahn J, Xia Y, Lin L, Graves KD, et al. Relationship between area-level socioeconomic status and health-related quality of life among cancer survivors. JNCI Cancer Spectr. 2024 Jan 4;8(1):pkad109. Mason S, Gause E, McMullen K, Murphy S, Sibbett S, Holavanahalli R, et al. Impact of community-level socioeconomic disparities on quality of life after burn injury: A Burn Model Systems Database study. Burns. 2023 Jun;49(4):861–9. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 18 Nov, 2024 Reviews received at journal 15 Nov, 2024 Reviews received at journal 14 Nov, 2024 Reviewers agreed at journal 14 Nov, 2024 Reviewers agreed at journal 10 Nov, 2024 Reviewers agreed at journal 08 Nov, 2024 Reviewers invited by journal 08 Nov, 2024 Editor assigned by journal 01 Nov, 2024 Submission checks completed at journal 29 Oct, 2024 First submitted to journal 17 Oct, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5286004","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":372924869,"identity":"f9a7aa52-a5ed-42cc-8b6e-32dd6d312d93","order_by":0,"name":"Benoît 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Background","content":"\u003cp\u003eSickle cell disease (SCD) is a hematological genetic disorder characterized by the presence of abnormal hemoglobin and hemoglobin S. This disease affects mainly red blood cells, leading to complications such as vaso-occlusive seizures, chronic pain, neurological infections and complications[1].\u003c/p\u003e \u003cp\u003eThe world\u0026rsquo;s first genetic disease, sickle cell disease, was declared a public health priority by the United Nations in 2008 at the 63rd session of the UN General Assembly. According to a study by Piel et al. in 2017, there were more than 250,000 births of children with a severe form of this disease in Africa.. Without early and appropriate care, 50 to 90% of these newborns die before the age of five [3].\u003c/p\u003e \u003cp\u003eIn Central Africa, the incidence of sickle cell disease at birth is estimated to be 1\u0026ndash;2%, the highest in the world. In sub-Saharan Africa, the largest number of sickle cell births after Nigeria is in the Democratic Republic of the Congo (DRC). In high-income countries, the increased survival and improved quality of life of sickle cell patients are limited due to the use of sophisticated therapies such as stem cell transplantation; however, more support systems organized with early and adequate patient management are needed [5,6]. Simple, accessible and less costly measures, with regular medical follow-up, would improve the health of SCD patients in sub-Saharan Africa if rigorously applied [7].\u003c/p\u003e \u003cp\u003eSince 2016, a medical follow-up programme for sickle cell children has been set up in Mbujimayi at a treatment centre in the DRC. The establishment of a sickle cell referral centre and regular medical monitoring of sickle cell children in a remote town in sub-Saharan Africa demonstrated a reduction in sickle cell morbidity and mortality. Regular medical follow-up consists of the strict application of simple management measures, such as the administration of folic acid and oral penicillin, and a regular medical visit with a biological balance check-up, which contributes to a reduction in mortality related to the disease [8]. To date, the centre has a cohort of more than 650 sickle cell children who have been followed for 8 years, the majority of whom have reached adolescence and need to be transferred to adult medicine. This situation creates new challenges for adult physician training on sickle cell disease and the establishment of a transition clinic. Adolescents with sickle cell disease may face particular challenges in terms of their quality of life and psychological and social well-being. Addressing the specific needs of sickle adolescents is essential for improving their quality of life. This implies a holistic approach that takes into account not only the medical aspects of the disease but also its psychosocial and emotional dimensions [9]. Sickle cell adolescents often need psychological support to cope with the challenges of their disease, such as managing pain, adapting to lifestyle restrictions and managing stress [10,11]. This anxiety may be exacerbated by a lack of preparation and support during the transition [12]. This highlights the importance of well-structured transition programs to ensure continuity of care and appropriate management for adolescents with sickle cell disease. The transition of sickle cell adolescents to adult medicine has never been studied in Mbujimayi, DRC, and no data have been found in the literature on this subject. This study aims to assess the quality of life of sickle cell adolescents during their transition to adult medicine and identify the main factors that influence quality of life and transition in the context of a remote city in the DRC.\u003c/p\u003e"},{"header":"2. Method","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\n \u003ch2\u003e2.1. Context of the study\u003c/h2\u003e\n \u003cp\u003eThis study was conducted in Mbujimayi, the capital of Kasai Province in the DRC [8]. It is the third largest city in terms of population. Mbujimayi\u0026rsquo;s population in 2024 is now estimated at 3,000,000 (Mbujimayi demographic data in 2024), covering an area of 135.12 km\u003csup\u003e2\u003c/sup\u003e and corresponding to a population density of 12441 inhabitants/km\u003csup\u003e2\u003c/sup\u003e[13].\u003c/p\u003e\n \u003cp\u003eIn the DRC, sickle cell disease management is covered by the national sickle cell control programme (PNLCD). In line with the health system strengthening strategy, PNLCD recommendations do not integrate primary health care activities.\u003c/p\u003e\n \u003cp\u003eThe study was conducted at the Mbujimayi Pediatric Clinic, one of the largest specialized pediatric facilities in Mbujimayi. This clinic represents a vertical program that is a private philanthropic program that is integrated into the primary health care of the DRC health system. This clinic has been providing up-to-date sickle cell disease management since 2016, with regular follow-ups at no cost to patients. It includes a pediatric ward with a capacity of 35 beds that are constantly occupied, a care unit room with a hospital room dedicated only to sickle cell patients and a center for research and training on sickle cell disease. There is also a neonatal unit, a maternity ward and a semiautomated laboratory.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\n \u003ch2\u003e2.2. Study type and inclusion criteria\u003c/h2\u003e\n \u003cp\u003eDescriptive observational study conducted from 01 February to 30 May 2024 at the Mbujimayi Pediatric Clinic in DRC. It affects all adolescents with homozygous sickle cell disease (aged between 10 and 25 years), followed for 8 years at the pediatric clinic of Mbujimayi. Sickle cell adolescents accounted for 21% (136/650) of all sickle cell patients. Regular medical follow-up at no cost to patients was provided by pediatricians assisted by resident doctors with a university degree in sickle cell disease.\u003c/p\u003e\u003cspan\u003e\n \u003ch2\u003e\u003cem\u003e2.3 Study parameters and operational definitions\u003c/em\u003e\u003c/h2\u003e\n \u003c/span\u003e\n \u003cul\u003e\n \u003cli\u003e\n \u003cp\u003eAdolescents are defined as young people aged between 10\u0026ndash;24 years; this is derived from the consideration of the age of adolescents who can reach 24 years, although according to the WHO, it is between 10\u0026ndash;19 years [14].\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eGender: with the characteristics of \u0026ldquo;male\u0026rdquo; and \u0026ldquo;female\u0026rdquo;;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eAge: assessed according to the last date of birth;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eSchooling: with the characteristics of \u0026ldquo;yes\u0026rdquo; and \u0026ldquo;no\u0026rdquo;, determining whether the adolescent is in school;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003ePersons with whom the adolescents live: determining the primary guardianship of each adolescent;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eReason for finding the disease: indicates the main sign or symptom that led to the first diagnosis of sickle cell disease;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eDrinking alcohol; determining the habit of drinking alcohol;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eGeneral health status: determining the state of health taken as a whole, that is, mental, physical and socioeconomic well-being on assessment by the respondent;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eChronic complication of sickle cell disease: determining chronic complications such as osteoarticular or other conditions.\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eSignificant or unusual physical effort: determining the threshold for limiting unusual activities as per patient\u0026rsquo;s assessment;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eHaving stopped doing certain activities: determining the fact that the teenager felt obliged to stop doing a usual activity such as walking, studying, etc.;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eHaving had difficulty performing certain activities: determining the degree of discomfort felt by the adolescent to begin certain usual activities;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eHave sought counselling: determining whether the young person has had to seek counselling from a pastor, parents, paediatrician or any adult;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eLack of concentration: Whether the teenager has experienced a lack of concentration in the last 4 weeks;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eMental health: determining well-being to achieve potential to cope with life difficulties;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003ePhysical pain (seizures): Determining whether the adolescent had vaso-occlusive seizures within 4 weeks prior to the study;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eThe intensity of pain, with \u0026quot;low\u0026quot;, \u0026quot;medium\u0026quot; and \u0026quot;high\u0026quot; characteristics, determines the degree of pain intensity felt by the adolescent;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eDesire to have a child: determining whether the teenager would want to have a child in the future and that despite his or her illness;\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eHave heard about transition: determining the threshold of knowledge for adolescents on the transition (steps to leave paediatrics and move to adult medicine);\u003c/p\u003e\n \u003c/li\u003e\n \u003cli\u003e\n \u003cp\u003eHaving the means to pay the fees: determining the financial level of adolescents to pay for treatment in adult medicine.\u003c/p\u003e\n \u003c/li\u003e\n \u003c/ul\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\n \u003ch2\u003e2.4. Collection of data\u003c/h2\u003e\n \u003cp\u003eData collection was performed by the same investigator on a survey form during follow-up consultations. The interviews were conducted in French, but the use of the vernacular (Tshiluba) was sometimes necessary.\u003c/p\u003e\n \u003cp\u003eThe questionnaire was developed in collaboration with the Mashi research and training centre (Sickle cell disease research and training centre in Kasai) and the team at the Mbujimayi Pediatric Clinic. It was previously tested in 10 sickle cell adolescents. The answers to this test were used to improve the questionnaire and, in particular, the aspects related to the transition to adult medicine. The SF-36 questionnaire [16] was used for quality of life assessment.\u003c/p\u003e\n \u003cp\u003eThe SF-36 is derived from the Medical Outcomes Study (MOS) questionnaire. It is a robust and reliable questionnaire intended to provide a generic measure of perceptual health [17].\u003c/p\u003e\n \u003cp\u003eThe SF-36 consists of 36 questions to assess quality of life related to general health. The 36 questions are divided into eight dimensions, each corresponding to a different aspect of health. These dimensions are physical functioning, role limitations due to physical problems, role limitations resulting from emotional problems, vitality (energy/fatigue), emotional well-being, social functioning, bodily pain, and perceptions of general and mental health. The score of each dimension of the SF-36 is the dependent variable of our study.\u003c/p\u003e\n \u003cp\u003eThese are discrete, finite quantitative variables whose measurement scale is ordinal. Finally, a score ranging from 0 to 100 was calculated for each dimension of the SF-36. A low score reflects a perception of poor health, loss of function, and the presence of pain. A high score reflects a perception of good health, no functional deficit and no pain [17,18]. The health status of the participants was assessed by referring to the patient\u0026rsquo;s medical records after the participant agreed. The presence or absence of general health problems and a history of transfusion, hospitalization, painful seizures and febrile episodes were evaluated. The questions were either closed (dichotomous or nominal) or answered on a Likert scale for self-assessment [19].\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\n \u003ch2\u003e2.5. Statistical analysis of data\u003c/h2\u003e\n \u003cp\u003eThe data were recorded with Excel 2007 software and finally analysed with EPI INFO 7.1.3.0 (USA, CDC Atlanta, 2008) and SPSS (version 20, Chicago, IL). The descriptive statistics allowed us to present data in the form of tables of frequencies and confidence intervals at the 95% threshold for comparison of proportions.\u003c/p\u003e\n \u003cp\u003eSimple descriptive statistics were used to define the following study variables: the numbers and percentages for categorical and nominal variables and the means and constant (SD) deviations for continuous variables. To establish a relationship between patient characteristics and health outcomes, a chi-square test was used for categorical variables, and an independent t test was used for continuous variables. P\u0026thinsp;\u0026lt;\u0026thinsp;0.05 was considered statistically significant.\u003c/p\u003e\n \u003cul\u003e\n \u003cli\u003e\n \u003ch3\u003eLinear regression analysis\u003c/h3\u003e\n \u003c/li\u003e\n \u003c/ul\u003e\n \u003cp\u003eTo identify factors associated with physical and mental health and to control for confounding factors, we constructed multivariate linear regression models. The dependent variables in the first and second models were the summary of physical components and the summary of mental components, respectively. We used reverse elimination to select variables from each regression model. We estimated the regression coefficients (\u0026beta;) and their confidence intervals at 95%. For all the statistical tests, P\u0026thinsp;\u0026lt;\u0026thinsp;0.05 was defined as the significance level.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"3. Results","content":"\u003cp\u003eOf a total of 650 sickle cell syndrome patients followed since 2016. Among these patients, 21% (136/650) had reached adolescence at the time of the study. Among the 136 selected files, data analysis was conducted on 106 adolescents who responded to the invitation. The mortality rate in adolescence after regular medical follow-up was 5%, with 7 patients dying by the time of the study. The flow diagram is shown in Fig.\u0026nbsp;1.\u003c/p\u003e\n\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\n \u003ch2\u003e3.1. Sociodemographic data\u003c/h2\u003e\n \u003cp\u003eThe sociodemographic data are included in Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e. The average age was 18\u0026thinsp;\u0026plusmn;\u0026thinsp;3 years, with a sex ratio of 1.3 in favour of boys.\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eSocio-demographic characteristics of adolescents with sickle cell disease\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameter\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eNumbers\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePercentage\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eConfidence interval\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eAge of adolescents (year)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003e14\u0026ndash;17\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e68\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e64\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e54,26\u0026ndash;73,23\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003e\u0026ge;\u0026thinsp;18\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e38\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e36\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e26,77\u0026thinsp;\u0026minus;\u0026thinsp;45,74\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eSex of adolescents (sex ratio\u0026thinsp;=\u0026thinsp;1,3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eMale\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e60\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e57\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e46,63\u0026ndash;66,20\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eFemale\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e46\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e43\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e33,80\u0026thinsp;\u0026minus;\u0026thinsp;53,37\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eSchoolchildren\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e95\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e90\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e82,19\u0026ndash;94,70\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e11\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e10\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e5,30\u0026thinsp;\u0026minus;\u0026thinsp;17,81\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003ePeople with whom the adolescents live\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eAlone/ Friends\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e13\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e12\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e6,69\u0026thinsp;\u0026minus;\u0026thinsp;20,06\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eParents / others relatives\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e93\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e88\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e79,94\u0026thinsp;\u0026minus;\u0026thinsp;93,31\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eAlcohol consumption\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e33\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e31\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e22,49\u0026thinsp;\u0026minus;\u0026thinsp;40,86\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e73\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e69\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e59,14\u0026ndash;77,51s\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\n \u003ch2\u003e3.2. Assessment of the transition period of sickle cell adolescents to adult medicine\u003c/h2\u003e\n \u003cp\u003eThe results revealed that 92% of sickle cell adolescents had never heard about the transition to adult medicine in the past and that 68% were not ready to integrate into adult medical care. Among those surveyed, 96% expressed a desire to have a child or pregnancy; of these, 78% wanted to have a natural birth, and the vast majority (81%) were not in favour of therapeutic abortion if the diagnosis was utero positive for a homozygous SS fetus. From the school point of view, the majority of sickle cell adolescents were in school (90%), with an almost equal distribution of boys and girls. On the social front, data reported that 12% (13/106) lived alone or with friends outside of the family roof and that 31% (33/106) consumed alcohol. Analysis of these data revealed that the majority of sickle cell adolescents living alone or with friends consumed alcohol, 77% (10/13), whereas 25% (23/93) still lived with their parents or relatives (odds ratio 10.14, p value 0.000). The remaining data for the transition period are included in Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab2\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eAssessment of the transition period for adolescents with sickle cell disease\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameters\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFrequency\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePercentage\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eConfidence interval\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eHave heard about the transition\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e8\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e8\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e3,31\u0026thinsp;\u0026minus;\u0026thinsp;14,33\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e98\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e92\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e85,67\u0026ndash;96,69\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eBeing ready to move into adult medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e34\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e32\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e23,34\u0026ndash;41,84\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e72\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e68\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e58,16\u0026ndash;76,66\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eFeel ready to adapt adult medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e81\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e76,4\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e59,38\u0026ndash;88,63\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e25\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e23,6\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e17,37\u0026ndash;40,62\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eBe prepared enough for the transition\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e25\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e24\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e15,88\u0026thinsp;\u0026minus;\u0026thinsp;32,82\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e81\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e76\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e67,18\u0026ndash;84,12\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"4\"\u003e\n \u003cp\u003eHave the means to pay for adult medicine treatment\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eYes\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e21\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e20\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e12,70\u0026thinsp;\u0026minus;\u0026thinsp;28,68\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e- \u003cem\u003eNo\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e85\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e80\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e71,31\u0026ndash;87,30\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\n \u003ch2\u003e3.3. Quality of life assessment\u003c/h2\u003e\n \u003cp\u003eThe Table \u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e describes the rating of the quality of life scale (SF-36). This assessment covers 8 dimensions: physical functioning, role limitations due to physical problems, role limitations resulting from emotional problems, vitality (energy/fatigue), emotional well-being, social functioning, physical pain, and perceptions of general and mental health. A score for each dimension of the SF-36 was calculated, ranging from 0 to 100. A low score reflects a perception of poor health, loss of function, and the presence of pain. A high score reflects a perception of good health, no functional deficit and no pain. The overall average 8-dimensional score is 60.6 8, indicating an optimal health status for sickle adolescents during the transition period. However, there is a better perception of pain with a rating of 75 out of 100 and a poor perception of role limitations due to emotional problems with a rating average of 48 out of 100.\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab3\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eRating of the quality of life scale (SF-36)\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameters\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eAverage*\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSD\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Physical operation\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e59,10\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e18,67\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Role limitations due to physical health\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e60,66\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e36,65\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Role limitations due to emotional issues\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e47,79\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e27,53\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Energy/Fatigue\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e67,68\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e13,70\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Emotional well-being\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e61,20\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e18,15\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Social functioning\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e60,37\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e27,52\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Pain\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e75,21\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e23,49\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- General health\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e52,70\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"char\"\u003e\n \u003cp\u003e\u003cem\u003e6,82\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003ctfoot\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e* Overall average 60,6 8. SD : Standard deviation\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tfoot\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003cp\u003eComparison of the mean scores of different dimensions. Table \u003cspan class=\"InternalRef\"\u003e4\u003c/span\u003ea and Table \u003cspan class=\"InternalRef\"\u003e4\u003c/span\u003eb show that sickle cell adolescents over 18 years of age had better perceptions of emotional well-being, pain and general health than did those under 18 years of age (p values of 0.003, 0.015 and 0.03, respectively). In contrast, those who were not educated had better perceptions of functional/emotional roles (p value 0.025), emotional well-being (p value 0.03) and social functioning (p value 0.000) than those who were educated. Those who consumed alcohol had a better perception of the functional/physical role (69 vs 56) than did those who did not consume alcohol (p value 0.05). Sickle cell adolescents who did not have painful seizures had good average scores for the dimensions of social functioning and pain, with p values of 0.04 and 0.005, respectively. Sickle adolescents at regular medical visits with regular intake of folic acid and those who did not appear to be tired from treatment had better scores, with p values less than 0.05, in the following dimensions: physical function, functional and emotional role, emotional well-being and pain. The results of the multiple linear regression analysis of factors associated with the quality of life score are presented in Table \u003cspan class=\"InternalRef\"\u003e5\u003c/span\u003e. We included only those factors whose p value was significantly associated with either dimension of the SF-36 assessment.\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab4\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003ea. Comparison of mean scores for different domains of quality of life in adolescents with sickle cell disease (Average and standard deviation)\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameter\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePhysical operation\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFunctional/\u003c/p\u003e\n \u003cp\u003ephysical role\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFunctional/\u003c/p\u003e\n \u003cp\u003eemotional role\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEnergy/fatigue\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEmotional well being\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSocial functioning\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePain\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eGeneral health\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eAge\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e14\u0026ndash;17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,61(19,38)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,40(27,61)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,40(27,61)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66,18(14,407)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,94(18,67)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,294(25,54)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e73,45(21,57)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,844(7,61)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026ge;18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,00(17,12)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49,12(27,65)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49,12(27,65)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e70,26(12,07)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63,47(17,17)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,526(31,10)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e78,35(26,60)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,71(5,00)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,237\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,955\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,955\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,217\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,003\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,181\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,015\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,031\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,59(19,56)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e64,17(35,46)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e48,33(25,61)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e67,58(13,85)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e61,20(18,46)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e61,04(28,56)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76,22(24,94)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,68(7,51)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,78(17,63)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e55,43(37,97)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,13(30,08)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e67,72(13,65)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e61,22(17,94)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,51(26,37)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e73,80(21,63)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,59(5,71)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,340\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,454\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,151\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,430\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,462\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,226\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,108\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,142\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eSchoolchildren\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,00(18,80)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,16(36,72)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,19(27,99)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66,84(13,56)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,49(17,65)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,158(27,75)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e73,39(23,60)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,48(6,37)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,00(18,30)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e79,54(31,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e57,57(21,55)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e74,55(13,50)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76,00(16,19)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e79,545(16,07)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e90,90(15,94)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,72(10,33)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,971\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,232\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,025\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,318\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,032\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,009\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,187\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003e\u003cstrong\u003ePersons with whom the adolescents live\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAlone/Friends\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,46(14,19)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e94,23(14,97)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,41(25,03)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e78,08(8,30)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e72,31(17,39)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e79,80(19,45)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e94,03(14,77)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e55,00(5,00)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eParents/Other relatives\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,19(19,27)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e55,64(36,32)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,11(27,75)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66,18(13,70)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,66(17,79)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e57,66(27,46)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e72,58(23,33)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,16(6,99)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,215\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,092\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,030\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,173\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,002\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,204\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eAlcohol consumption\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,09(19,01)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e68,93(31,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,51(26,47)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e67,73(12,56)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,15(19,28)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,09(28,34)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76,59(23,98)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,75(8,00)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,11(18,64)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,51(38,42)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e45,50(27,97)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e67,60(14,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e62,14(17,67)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,95(27,31)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e74,58(23,40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,40(6,28)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,912\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,051\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,429\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,496\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,169\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,451\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,720\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,234\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003e\u003cstrong\u003eChronic complication of sickle cell disease\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,91(20,37)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e36,46(33,77)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e39,81(30,72)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,42(14,73)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,83(15,24)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e48,438(27,90)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,83(22,76)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,08(5,50)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,92(17,87)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e67,37(34,62)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49,59(26,31)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e69,76(12,71)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63,37(18,44)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63,872(26,57)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e79,42(22,11)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,93(7,14)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,180\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,682\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,241\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,535\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,038\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,579\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,501\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,122\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab5\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eb. Comparison of mean scores for different domains of quality of life in adolescents with sickle cell disease (Average and standard deviation) (continued Table \u003cspan class=\"InternalRef\"\u003e4\u003c/span\u003ea)\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameter\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePhysical operation\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFunctional/\u003c/p\u003e\n \u003cp\u003ephysical role\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eFunctional/\u003c/p\u003e\n \u003cp\u003eemotional role\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEnergy/fatigue\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEmotional well being\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSocial functioning\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePain\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eGeneral health\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003eHave experienced physical pain (Crisis)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,00(18,63)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e41,81(30,06)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38,58(28,35)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,82(12,27)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,13(13,34)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46,13(24,98)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,90(16,014)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,10(6,57)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,14(18,84)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e80,39(32,51)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,86(23,37)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e75,00(11,18)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e72,08(16,34)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e75,73(21,27)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e94,95(10,77)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e54,02(6,83)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,685\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,740\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,053\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,637\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,394\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,044\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,005\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,757\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003eKeep up to date with medical check-ups\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,31(19,04)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e62,93(37,52)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e48,53(28,15)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e69,71(12,72)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e64,23(17,88)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e65,230(26,85)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e79,28(22,15)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,66(7,04)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,15(17,33)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e48,68(30,58)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e42,10(24,44)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,16(14,35)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e47,37(12,16)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38,158(18,38)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,57(20,66)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,84(5,82)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,754\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,011\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,264\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,008\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,002\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,000\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,031\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,520\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003eBe able to pay for the treatment costs\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,28(19,44)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e62,65(37,52)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e50,06(27,18)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e70,00(13,02)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63,90(18,29)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e65,06(26,89)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e78,91(22,04)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,36(6,94)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,48(15,92)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,17(32,781)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e37,68(27,16)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e59,13(12,93)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,48(14,08)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e43,47(23,19)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e61,84(24,18)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,04(6,52)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,188\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,059\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,839\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,354\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,012\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,063\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,717\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,655\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003eBeing tired from regular treatment\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e54,34(21,03)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e44,33(35,23)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38,78(31,01)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e64,81(12,20)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56,08(14,64)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,12(27,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e65,75(20,79)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51,81(7,34)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63,87(14,67)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76,41(30,77)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e55,97(20,43)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e70,47(14,61)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66,34(19,93)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e68,63(25,43)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e84,67(22,35)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,21(6,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,001\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,274\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,001\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,079\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,002\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,279\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,003\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,382\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003eFeeling ready to adapt to adult medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,64(19,96)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,18(35,74)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e43,89(27,71)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66,23(13,31)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,72(17,89)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,02(27,69)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e72,68(24,19)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52,10(7,27)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e60,60(13,94)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e61,00(40,23)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58,66(24,11)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e72,20(14,22)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e69,28(16,88)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e68,00(26,04)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e83,40(19,26)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53,84(5,03)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003ep-value\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,016\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,298\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,029\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,511\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,357\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,157\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,026\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e0,089\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003e\u003c/p\u003e\u0026nbsp;\u003ctable id=\"Tab6\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eMultiple linear regression analysis of factors associated with the quality of life score\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eParameter\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eCoeff \u0026beta;\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eStd. Error\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eBeta\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003et\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003ep\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePhysical operation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-11,071\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e4,436\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,298\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,496\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"BoldItalicUnderline\" class=\"BoldItalicUnderline\" name=\"Emphasis\"\u003e0,014\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Being tired from regular treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e13,936\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e4,208\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,375\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e3,312\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"BoldItalicUnderline\" class=\"BoldItalicUnderline\" name=\"Emphasis\"\u003e0,001\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFunctional/physical role\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- People with whom the adolescents live\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-23,008\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e10,930\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,207\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,105\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,038\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Chronic complications of sickle cell disease\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e15,539\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e7,508\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,178\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,070\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,041\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e23,945\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e7,294\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,328\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e3,283\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,001\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Being tired from regular treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e14,403\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e6,920\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,197\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,082\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,040\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eFunctional/emotional role\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Feeling ready to adapt to adult medicine\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e15,248\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e6,117\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,236\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,493\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,014\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEnergy/fatigue\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- People with whom the adolescents live\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-9,303\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e3,962\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,224\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,348\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,021\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e11,431\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e2,644\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,419\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e4,324\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Be able to pay for the treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-6,607\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e2,855\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,200\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,314\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,023\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Feeling ready to adapt to adult medicine\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e6,474\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e2,581\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,202\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,508\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,014\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEmotional well-being\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Schoolchildren\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e11,312\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e4,640\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,191\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,438\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,017\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e17,079\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e3,268\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,472\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e5,227\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Be able to pay for the treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-7,417\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e3,529\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,169\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,102\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,038\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Feeling ready to adapt to adult medicine\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e10,448\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e3,190\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,246\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e3,275\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,001\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSocial functioning\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Schoolchildren\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e14,830\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e7,370\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,165\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e2,012\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,047\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- People with whom the adolescents live\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-17,306\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e7,778\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,207\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,225\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,028\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e22,575\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e5,190\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,412\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e4,349\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Be able to pay for the treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-13,259\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"3\"\u003e\n \u003cp\u003e\u003cem\u003e5,605\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,200\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-2,366\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,020\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- People with whom the adolescents live\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-9,609\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e4,434\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,135\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-2,167\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,033\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Have experienced physical pain (Crisis)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e33,783\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e2,959\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,722\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e11,418\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,000\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Be able to pay for the treatment\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e-7,467\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e3,195\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-0,132\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e-2,337\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,022\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Feeling ready to adapt to adult medicine\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e9,907\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e2,888\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,180\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e3,430\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,001\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eGeneral health\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e- Sex\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e3,546\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e1,486\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e0,259\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003e\u003cem\u003e2,387\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan type=\"ItalicUnderline\" class=\"ItalicUnderline\" name=\"Emphasis\"\u003e0,019\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\" colspan=\"1\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n\u003c/div\u003e"},{"header":"4. Discussion","content":"\u003cp\u003eIn the Democratic Republic of the Congo, sickle cell disease is a major public health issue. With improved management, a majority of children with this disease manage to reach adulthood but face many chronic complications, including adolescents. The aim of this study in Mbujimayi was to contribute to a better understanding of the disease and to improve the management of sickle cell adolescents.\u003c/p\u003e \u003cp\u003eThe results of this study show that men are more affected, with 57% of cases, which corresponds to a sex ratio of 1.3 in favour of men. These data are consistent with those obtained in other studies conducted in different countries, such as Brazil [20], the Congo Brazzaville [21] and Saudi Arabia [22], which also reported a male/female ratio of approximately 1.2 in favour of men. In contrast, a study conducted in France reported a sex ratio of 2.2 in favour of women [23]. This disparity could be explained by the fact that the French study aimed to assess the quality of life of adults with sickle cell disease, whereas the study in Mbujimayi focused on adolescents. In addition, the size of the sample studied in each study, 570 participants for the French study versus 106 for the Mbujimayi study, could also influence the differences observed in the male/female ratios.\u003c/p\u003e \u003cp\u003eThis study revealed that a significant percentage of 31% of adolescents with sickle cell disease consumed alcohol. In addition, living alone and/or with friends significantly increased the risk of alcohol consumption, with a 10.14-fold increase in risk (p\u0026thinsp;=\u0026thinsp;0.000). These results are in agreement with those of James Levenson and colleagues [24], however they contradict the findings of the study by Christina and her collaborators, who noted a limitation of alcohol intake among sickle cell adolescents [25]. These results may be explained by the fact that many patients with chronic diseases, including sickle cell disease, use excessive alcohol to relieve their symptoms and cope with stress associated with their illness. In addition, a lack of parental supervision may lead to adolescents feeling more free to consume alcohol, which contributes to the increased risk observed in this study. In summary, these results highlight the importance of taking into account social and psychological factors in managing sickle cell disorders in adolescents, particularly with respect to alcohol consumption and associated risk behaviours.\u003c/p\u003e \u003cp\u003eAmong the adolescents interviewed for this study, 96% expressed a desire to become pregnant or to start a family in the future. More specifically, among these adolescents, 78% expressed a preference for natural delivery, indicating a strong inclination for a noninterventionist approach to birth. In addition, a large majority of these adolescents, 81%, said that they did not support the idea of therapeutic abortion if a positive prenatal diagnosis for an SS homozygous foetus was made. These findings corroborate those of Leena and her colleagues [26], and 61.1% of the patients interviewed expressed a desire to have biological children in the future. This consistency between the two studies suggests a strong tendency among young people to view biological parenthood as an important aspiration for the future. One possible explanation for these findings could be linked to the widely held perception that the desire to procreate and start a family is a natural and legitimate instinct rooted in human nature. This view of parenthood as an essential element in the creation and continuity of life could influence adolescent attitudes towards complex issues such as therapeutic abortion in specific cases, such as those discussed in the study.\u003c/p\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003e4.1. Transition of sickle cell adolescents\u003c/h2\u003e \u003cp\u003eThe results of the study revealed that 92% of the adolescents with sickle cell disease interviewed were previously unaware of the need for a transition to adult medical care. Furthermore, an overwhelming majority of these adolescents (68%) did not feel ready to integrate this type of medical management. These findings contrast with the findings of other studies, notably those of Wally R. Smith [27], who reported that 50% of sickle cell syndrome patients in the United States were familiar with the transition to adult medicine and had previously consulted an adult sickle cell specialist, and Christelle Dorbon and colleagues [28], who reported that 57% of sickle cell syndrome adolescents were aware of this transition and had adhered to the process. This disparity in outcomes can be explained in part by the socioeconomic context and health system in place. The studies by Wally R. Smith and Christelle Dorbon were conducted in high-income countries, where sickle cell disease management is better organized from birth. However, studies on the transition of sickle cell adolescents in sub-Saharan Africa, where the prevalence of the disease is relatively high and medical resources are relatively limited, remain rare. Importantly, most sickle cell syndrome patients do not reach adolescence because of a lack of regular medical follow-up, the unavailability of treatments such as hydroxyurea and the absence of a marrow transplant. Another crucial aspect of this study is the lack of specialized centers in transition care and the deficit of adult doctors trained to manage sickle cell disease, which compromises the preparation of sickle cell adolescents for adult medicine. This poses a major challenge in terms of the continuity of care for sickle cell syndrome patients after their follow-up in pediatrics.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003e4.2. Health-related quality of life and associated factors\u003c/h2\u003e \u003cp\u003eIn this study, adolescents with sickle cell disease had an optimal quality of life, as evidenced by the overall SF-36 average rating of 60.6 8, including the eight dimensions of the quality of life assessment mentioned above. These results are in line with previous studies conducted in Saudi Arabia by Nada Ahmed Al Sayigh [29], Mostafa Abdel-Monhem [22], in France by Issifou Yaya [23] and in the Congo Brazza by J.R. Mabiala [21]. The quality of life observed in our study can be explained by the early and regular medical follow-up that sickle-cell adolescents receive from an early age. This approach allows for more effective and early management of their disease, thus promoting a better quality of life.\u003c/p\u003e \u003cp\u003eAmong the factors related to quality of life in adolescents with sickle cell disease, this study revealed that women scored higher on physical function, energy/fatigue, emotional well-being and overall health. In addition, sex was statistically correlated with a better rating of overall health status (p\u0026thinsp;=\u0026thinsp;0.019). These findings contradict those of Nada Ahmed Al Sayigh in Saudi Arabia [29], who reported that men had higher quality of life scores and that sex influenced physical function and pain. This disparity can be explained by the fact that Sayigh\u0026rsquo;s study was conducted with adults and that women were underrepresented. However, a study conducted by J R Mabiala in the Congo Brazzaville [21] did not identify any significant link between gender and quality of life. This lack of association may be because Mabiala did not use scores to assess quality of life. The consideration of gender and quality of life scores may play a crucial role in understanding the impact of sickle cell disease on adolescents' lives.\u003c/p\u003e \u003cp\u003eIn this study, out-of-school children had higher quality of life scores in several specific areas. Compared with those of school-aged children, scores of functional/emotional role (p 0.025), emotional well-being (p 0.032), physical functioning (p 0.000) and pain management (p 0.009) significantly improved. In contrast, school children showed a statistically significant correlation with quality of life in terms of emotional well-being (p 0.017) and social functioning (p 0.047). These results contrast with those obtained by Nada Ahmed Al and Lemchukwu Amaeshi, who reported a better quality of life in sickle cell syndrome patients with higher scores [29,30]. This disparity can be explained by the challenges that schooling can create, such as the constant stress of school assessments and the stigma and discrimination that adolescents may face in school. Some sickle-celled adolescents may experience feelings of debasement and differences from their peers due to their illness, which can also result in school absenteeism related to sickle-cell complications.\u003c/p\u003e \u003cp\u003eAdolescents living alone or with friends had better quality of life in terms of functional/physical role (p 0.000), energy/fatigue (p 0.03) and social functioning (p 0.000). Logistic regression revealed that whether parents live under the roof of their parents is a factor influencing adolescents' quality of life in the areas of social functioning (p 0.028), functional/physical role (p 0.038), energy/fatigue (p 0.021), and pain management (p 0.033). It is undeniable that sickle adolescents living separate from their parents have not been studied enough. This specific population is often overlooked in research, despite the unique challenges it faces. Unaccompanied and isolated adolescents are generally vulnerable to family involvement, as they often have to assume responsibilities normally reserved for adults. Their access to social activities and involvement in activities typical of their age group may be limited, resulting in social and emotional isolation [25,31]. Despite these obstacles, sickle-cell adolescents separated from their parents show a remarkable ability to take charge of their health and develop self-confidence. This resilience can play a crucial role in their quality of life, particularly with respect to their physical functioning, energy levels and ability to manage the pain associated with sickle cell disease. Therefore, more in-depth research is essential to better understand the specific needs of this population and develop tailored interventions to improve their overall well-being.\u003c/p\u003e \u003cp\u003eAdolescents who developed chronic complications of sickle cell disease had lower quality of life scores in all dimensions. Chronic complications of sickle cell disease were significantly associated with the functional/physical role dimension (p 0.041). These results are similar to those of Issifou Yaya [23]. The majority of authors did not treat chronic complications in adolescents with sickle cell disease.\u003c/p\u003e \u003cp\u003eAdolescents who had vaso-occlusive seizures in the 4 weeks preceding the study had lower quality of life scores in all dimensions except physical functioning. Pain was significantly negatively associated with physical functioning (p\u0026thinsp;=\u0026thinsp;0.014) and positively associated with energy/fatigue (0.014), functional/physical role (p\u0026thinsp;=\u0026thinsp;0.001), emotional well-being (p\u0026thinsp;=\u0026thinsp;0.000), social functioning (p\u0026thinsp;=\u0026thinsp;0.000) and pain (p\u0026thinsp;=\u0026thinsp;0.000). These results corroborate those of Rosana Quintella Brand\u0026atilde;o Vilela [20], Nada Ahmed Al sayigh [29], Issifou Yaya [23] and Lemchukwu Amaeshi [30].\u003c/p\u003e \u003cp\u003eAdolescents who were on regular folic acid treatment had the highest quality of life score in all dimensions assessed by the SF-36. However, regular treatment did not significantly influence the quality of life score. In our series, the patients were not on hydroxyurea treatment, which could explain why regular treatment has no influence on quality of life. Hydroxyurea is the only molecule that has been shown to reduce the frequency of painful seizures, acute chest syndrome and transfusion needs in sickle-cell syndrome patients with severe disease [32]. Studies are unanimous that regular hydroxyurea and is the only treatment to date that improves the quality of life of sickle-cell syndrome patients [33\u0026ndash;35]. This study again shows the need for hydroxy-urea treatment in sickle cell patients, especially in sub-Saharan Africa where there is a prevalence of sickle cell disease. Efforts by governments, their multilateral partners and civil society actors are needed to make hydroxyurea available at an affordable cost for sickle cell patients in sub-Saharan Africa [36]. .\u003c/p\u003e \u003cp\u003eAdolescents with the ability to pay for disease care had the highest quality of life score in all dimensions. More specifically, there was a statistically significant association with the energy/fatigue dimension (p\u0026thinsp;=\u0026thinsp;0.023), emotional well-being (p\u0026thinsp;=\u0026thinsp;0.038), social functioning (p\u0026thinsp;=\u0026thinsp;0.020) and pain (p\u0026thinsp;=\u0026thinsp;0.022). This seems logical because a higher socioeconomic family level improves the quality of life of people. These results are consistent with those of Issifou Yaya [23], R Mabiala [21] and Lemchukwu Amaeshi [30], who reported a link between quality of life and family income level. Socioeconomic health disparities within and between low- and middle-income countries are major global public health problems [37]. Several studies have demonstrated the importance of socioeconomic status for health outcomes [37\u0026ndash;39].\u003c/p\u003e \u003c/div\u003e"},{"header":"5. Conclusions","content":"\u003cp\u003eThe study of the quality of life and transition of sickle cell adolescents in Mbujimayi was the first in the DRC. These findings highlight the importance of considering the quality of life of sickle cell adolescents and their transition to adult medicine in Mbujimayi, highlighting the challenges they face and the factors that affect their well-being in general.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eDRC: Democratic Republic of the Congo\u003c/p\u003e\n\u003cp\u003eSCD : Sickle cell disease\u003c/p\u003e\n\u003cp\u003ePNLCD: The national sickle cell control programme : Programme national de lutte contre la dr\u0026eacute;panocytose\u003c/p\u003e\n\u003cp\u003eMOS : Medical Outcomes Study\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSF-36 : Short Form 36 questionnaire\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u0026nbsp;: \u0026nbsp;\u003c/strong\u003eAll parents or legal sponsors of patients\u0026nbsp;provided\u0026nbsp;written informed consent to participate in the study. The study protocol was reviewed and approved by the ethics committee of the Research Centre for Mashi-Sickle Cell Disease and Other Red Blood Cell Diseases (N/Ref: 012/CR/CRM/CPM/YMK/2024). The study was conducted in accordance with the principles of the Declaration of Helsinki II. The purpose and procedures of the study were explained to\u0026nbsp;the\u0026nbsp;participants and legal respondents.\u0026nbsp;The participants\u0026nbsp;were informed that they could withdraw at any time without further obligation and\u0026nbsp;would\u0026nbsp;continue to receive care without prejudice. The anonymity of\u0026nbsp;the\u0026nbsp;participants was guaranteed,\u0026nbsp;and no personal data were recorded.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eConsent for publication :\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAvailability of data and materials :\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eCompeting interests :\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eThe authors declare that they have no conflicts of interest. The authors are solely responsible for the content and writing of this article. The study questionnaire was submitted and approved by the ethics committee of the Mashi Research Centre, sickle cell disease and other red blood cell diseases (N/Ref: 012/CR/CRM/CPM/YMK/2024). Written informed consent was obtained from each participant. All the data generated or analysed during this study are available from the author upon request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e:\u0026nbsp;\u003c/strong\u003eThis research received no external funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAuthor Contributions\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e:\u0026nbsp;\u003c/strong\u003eB.G. coordinated the study during the publication, correction, and finalization of the manuscript. She provided important criticisms for improving the content and\u0026nbsp;provided\u0026nbsp;guidance and support for publication. B.M.M. is the main author of the study, of the questionnaire design, and of the data collection and interpretation for publication. C.K.M., S.K.M., A.K.M., and S.K.T. contributed to the data collection and reading of the article. All\u0026nbsp;the\u0026nbsp;authors declare that they have read and approved the final version of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003eThe authors wish to thank all the sickle cell patients who agreed to participate in the survey and for their time allocated to answering the questionnaire. We would like to thank the New Generations DRC fund and the King Baudouin Foundation for their financial support in setting up the Mashi research and training centre. This has made it possible to carry out research and training on sickle cell disease.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eGulbis B, L\u0026ecirc; PQ, Ketelslegers O, Dresse MF, Adam AS, Cotton F, et al. Neonatal Screening for Sickle Cell Disease in Belgium for More than 20 Years: An Experience for Comprehensive Care Improvement. Int J Neonatal Screen. 2018 Dec;4(4):37.\u003c/li\u003e\n\u003cli\u003ePiel FB, Steinberg MH, Rees DC. Sickle Cell Disease. New England Journal of Medicine [Internet]. 2017 Apr 20 [cited 2020 Apr 21];376(16):1561\u0026ndash;73. Available from: https://doi.org/10.1056/NEJMra1510865\u003c/li\u003e\n\u003cli\u003eGrosse SD, Odame I, Atrash HK, Amendah DD, Piel FB, Williams TN. Sickle Cell Disease in Africa. Am J Prev Med [Internet]. 2011 Dec [cited 2019 Mar 3];41(6):S398\u0026ndash;405. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708126/\u003c/li\u003e\n\u003cli\u003ePiel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global burden of sickle cell anaemia in children under five, 2010-2050: modelling based on demographics, excess mortality, and interventions. PLoS Med. 2013;10(7):e1001484.\u003c/li\u003e\n\u003cli\u003eS D, G B, W W. A successful education program for parents of infants with newly diagnosed sickle cell disease. J Pediatr Nurs [Internet]. 1992 Feb 1 [cited 2020 Jan 21];7(1):52\u0026ndash;7. Available from: https://europepmc.org/article/med/1548563\u003c/li\u003e\n\u003cli\u003eLee A, Thomas P, Cupidore L, Serjeant B, Serjeant G. Improved survival in homozygous sickle cell disease: lessons from a cohort study. BMJ. 1995 Dec 16;311(7020):1600\u0026ndash;2.\u003c/li\u003e\n\u003cli\u003eDiallo DA. [Sickle cell disease in Africa: current situation and strategies for improving the quality and duration of survival]. Bull Acad Natl Med. 2008 Oct;192(7):1361\u0026ndash;72; discussion 1372-1373.\u003c/li\u003e\n\u003cli\u003eMbiya BM, Kalombo DK, Mukendi YN, Daubie V, Mpoyi JK, Biboyi PM, et al. Improvement of SCD morbimortality in children: experience in a remote area of an African country. BMC Health Services Research [Internet]. 2021 Apr 1 [cited 2021 Jun 17];21(1):294. Available from: https://doi.org/10.1186/s12913-021-06286-7\u003c/li\u003e\n\u003cli\u003eSalih KMA. 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Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study. J Adv Nurs. 2024 Feb;80(2):756\u0026ndash;64.\u003c/li\u003e\n\u003cli\u003eMbujimayi. In: Wikip\u0026eacute;dia [Internet]. 2024 [cited 2024 Aug 13]. Available from: https://fr.wikipedia.org/w/index.php?title=Mbujimayi\u0026amp;oldid=217650232\u003c/li\u003e\n\u003cli\u003eSant\u0026eacute; des adolescents [Internet]. [cited 2024 Aug 13]. Available from: https://www.who.int/fr/health-topics/adolescent-health\u003c/li\u003e\n\u003cli\u003eKanter J, Kruse-Jarres R. Management of sickle cell disease from childhood through adulthood. Blood Rev. 2013 Nov;27(6):279\u0026ndash;87.\u003c/li\u003e\n\u003cli\u003eBrazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ. 2002 Mar;21(2):271\u0026ndash;92.\u003c/li\u003e\n\u003cli\u003eWare JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992 Jun;30(6):473\u0026ndash;83.\u003c/li\u003e\n\u003cli\u003eSabbah I, Sabbah H, Khamis R, Sabbah S, Droubi N. Health related quality of life of university students in Lebanon: Lifestyles behaviors and sociodemographic predictors. Health [Internet]. 2013 Jul 18 [cited 2024 Aug 14];5(7):1\u0026ndash;12. Available from: https://www.scirp.org/journal/paperinformation?paperid=34199\u003c/li\u003e\n\u003cli\u003eCastleberry A, Peeters MJ. Identifying and analysing likert scales. Curr Pharm Teach Learn. 2023 Aug 22;S1877-1297(23)00209-5.\u003c/li\u003e\n\u003cli\u003eVilela RQB, Cavalcante JC, Cavalcante BF, Ara\u0026uacute;jo DL, L\u0026ocirc;bo M de M, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter. 2012;34(6):442\u0026ndash;6.\u003c/li\u003e\n\u003cli\u003eBABELA J, MBERI F, Ikobo LC, Nika E, NGOULOU B, Missambou Mandilou SV. The quality of life of adolescents with homozygous sickle cell disease followed at the CHU of Brazzaville (Congo). Bulletin of the Exotic Pathology Society. 2018 Feb 28;111:46\u0026ndash;50.\u003c/li\u003e\n\u003cli\u003eAbdel-Monhem Amr M, Tawfik AT, Al-Omair AO. Health related quality of life among adolescents with sickle cell disease in Saudi Arabia. Pan Afr Med J. 2011 Feb 15;8:10.\u003c/li\u003e\n\u003cli\u003eYaya I, Pourageaud A, Derbez B, Odi\u0026egrave;vre MH, Oudin Doglioni D, Podevin M, et al. Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study. Front Public Health. 2024 May 20;12:1374805.\u003c/li\u003e\n\u003cli\u003eLevenson JL, McClish DK, Dahman BA, Penberthy LT, Bovbjerg VE, Aisiku IP, et al. 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Burns. 2023 Jun;49(4):861\u0026ndash;9.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"discover-social-science-and-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"diss","sideBox":"Learn more about [Discover Social Science and Health](https://www.springer.com/journal/44155)","snPcode":"","submissionUrl":"","title":"Discover Social Science and Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Sickle cell disease, Quality of life, Adolescent, Transition, Adult medicine","lastPublishedDoi":"10.21203/rs.3.rs-5286004/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5286004/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eSickle cell disease is the most common genetic disease in the world, affecting mainly populations in sub-Saharan Africa. It causes high morbidity and mortality rates and is a real public health problem in the Democratic Republic of the Congo. Regular medical follow-up improves the quality of life of patients, especially adolescents, and raises the issue of their transition to adult medicine. This study aims to assess the quality of life and transition of sickle-cell adolescents, identifying key factors influencing their well-being.\u003c/p\u003e\u003ch2\u003eMethod\u003c/h2\u003e \u003cp\u003eThis was a cross-sectional descriptive and observational study conducted in the form of interviews with 106 sickle cell adolescents in Mbujimayi. The SF-36 short questionnaire was used to assess quality of life. A closed questionnaire (dichotomous or nominal) was used to assess the transition period.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe results revealed an overall optimal quality of life, with an average SF-36 score of 60.6\u0026thinsp;\u0026plusmn;\u0026thinsp;8. Improvement in pain management (75,21\u0026thinsp;\u0026plusmn;\u0026thinsp;23,49) and misperception of role limitations related to emotional issues (47,79\u0026thinsp;\u0026plusmn;\u0026thinsp;27,53). Pain is the main factor affecting quality of life. It is significantly associated with physical functioning (p 0.014), energy/fatigue (p 0.014), functional/physical role (p 0.001), emotional well-being (p 0.000), social functioning (p 0.000) and pain itself (p 0.000). The majority, 92% of the adolescents, were unaware of the transition, and 68% did not feel ready to move from pediatric care to adult care.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eThese findings highlight the importance of considering the quality of life of sickle cell adolescents and their transition to adult medicine in Mbujimayi, highlighting the challenges they face and the factors that affect their well-being in general.\u003c/p\u003e","manuscriptTitle":"Assessing the quality of life of adolescents with sickle cell disease and their transition to adult medicine: experience in a remote area of the Democratic Republic of Congo","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-11-19 13:47:19","doi":"10.21203/rs.3.rs-5286004/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-11-18T09:20:14+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-11-15T11:59:03+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-11-14T20:01:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"257361557003498854297355288905190107007","date":"2024-11-14T19:42:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"88378447630040875474846536969193468233","date":"2024-11-10T20:23:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"103693334783142911752928860170465549815","date":"2024-11-08T13:14:06+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-11-08T06:03:23+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-11-01T09:24:09+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-10-29T04:31:40+00:00","index":"","fulltext":""},{"type":"submitted","content":"Discover Social Science and Health","date":"2024-10-18T03:06:59+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"discover-social-science-and-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"diss","sideBox":"Learn more about [Discover Social Science and Health](https://www.springer.com/journal/44155)","snPcode":"","submissionUrl":"","title":"Discover Social Science and Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"76656cc8-a78e-4582-a656-7aab41121519","owner":[],"postedDate":"November 19th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-04-23T12:38:47+00:00","versionOfRecord":[],"versionCreatedAt":"2024-11-19 13:47:19","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5286004","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5286004","identity":"rs-5286004","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}