The transition process for adolescents with an endocrine pathology: quality of life, drop-out, and self-management skills

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Methods 70 patients with nine different chronic endocrinopathies were included in this study. Clinical data have been collected through the consultation of medical records. Moreover, subjects have been offered an online, anonymous questionnaire. Adherence to follow-up visits was assessed by detecting the last control visit. A Numerical Rating Scale (NRS) measured satisfaction with the transition process. Evaluation of the perception of one’s self-management skills and quality of life was carried out through the “On Your Own Feet–Self-Efficacy Scale” (OYOF-SES) and SF-36®, respectively. Results We found a drop-out rate from follow up of 28.6%, which is in line with the data in the literature, with significant variability among the individual endocrinological diseases. 82% of the subjects were satisfied with their experience at the Transition Clinic. There was a good capacity for self-management, with high scores obtained at OYOF-SES. The perceived quality of life is also overall good, except for mental health, which was lower than the reference healthy population. Conclusions Despite the improvement in the drop-out rate and the results in terms of self-management and quality of life obtained by our Transition Clinic in Verona, constant analysis and implementation of individualized transition processes are necessary to ensure their optimum effectiveness, paying greater attention to the quality of mental health. transition chronic endocrinopathies drop-out quality-of-life self-management skills Figures Figure 1 Figure 2 Figure 3 Introduction The transition process is “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems”[ 1 ]. This is the first definition, dating back to 1993, but this concept is evolving and other essential features have been added over the years. Ensuring quality care and avoiding care gaps is vital [ 2 ]. It should be a “gradual process of empowerment that equips young people with the skills and knowledge necessary to manage their healthcare in pediatric and adult services” [ 3 ]. The transition is a complex process that should be managed by a multi-disciplinary team that handles the medical, psychological, educational, and social necessities of patients with chronic conditions during adolescence [ 4 ]. The multi-disciplinary team aims to provide coordinated, uninterrupted healthcare to help young patients develop communication, decision-making, assertiveness, and self-care skills to manage their condition and social, educational, and employment opportunities and challenges [ 5 ]. The need to develop transition programs has been revealed in the last few years for two main reasons. Firstly, the increased prevalence of the most typical chronic conditions and increased survival of children with congenital conditions that only a few years ago were fatal in infancy or childhood, such as cystic fibrosis, have produced cohorts of young adults with diseases previously unseen by adult services. Secondly, poorly planned transitions can be associated with an increased risk of non-adherence to treatment and lack of follow-up, with subsequent measurable adverse consequences in morbidity and mortality and social and educational outcomes [ 4 ], [ 5 ]. For several prevalent chronic diseases (i.e., type 1 diabetes, chronic kidney failure, and cystic fibrosis), transition programs have been demonstrated to be effective in improving compliance of young patients in adult care services since it occurs throughout social adaptation (i.e., leaving home, job challenges or having a partner) when the acceptance of care could be poor [ 6 ], [ 7 ], [ 8 ]. Nevertheless, many factors can hinder transition: barriers to transition include preexisting factors (sociodemographic and culture, health care access/insurance, health status/risk) and interrelated components (development, knowledge, skills/efficacy, beliefs/expectations, goals, relationships, and psychosocial functioning) [ 9 ]. Many different models of transition have been described to date. The models include 1) a dedicated follow-up service within the adult setting, which is the simplest model, but there is no continuity from pediatric services; 2) a “seamless” clinic, which begins in adolescence and continues into adulthood, allowing patients to benefit both from child and adult professionals; 3) Life-long follow-up within the pediatric setting; 4) a generic “transition team” within a children’s hospital, involving 1–2 dedicated nurse specialists who can ensure that all young people in the different specialties go through appropriate transitions. These different models have been studied to identify the best, but not a single approach has been proved superior [ 5 ]. The common points between the different proposed models are essentially three, regardless of the disorder: transition preparation and planning, transfer of care, and successful intake and integration into adult-centered healthcare [ 4 ], [ 10 ]. Unfortunately, in most cases, the transition is instead a transfer of young people to what looks like the most relevant adult clinic or discharge from the children’s clinic with instructions to ask the general practitioner for a referral to adult services [ 5 ]. This often results in nonadherence: missed medical appointments and poor health outcomes [ 9 ]. Unfortunately, this might be the consequence of the absence of specific international transition guidelines for each chronic disease, and the transversal application of existing programs and policies has not been established. At the University Hospital of Verona, the Transition Clinic was born in 2010 for adolescents and young adults with endocrine disorders who need to continue to follow up with an adult endocrinologist. The Transition Clinic is based on the diabetes joint-clinic model and is conjointly managed by child and adult endocrinologists. Visits to the Transition Clinic begin at 12 years old and continue until the young patient has acquired the necessary maturity to manage his condition. Transition timing should not be based on a rigid age threshold because chronological age and developmental maturation do not always match up [ 11 ], [ 12 ]. Our transition clinic was established with the intent of ensuring an appropriate transition of care for adolescents with chronic endocrinological pathology, seeking to provide the best possible support to youth and their families with the help of the general practitioner who is fully involved in the transition process and is responsible for the continuity of home care. With this study, we want to evaluate what critical issues young patients face so that we can ensure an increasingly better transition process and suggest possible strategies to implement in specific categories of patients who turn out to be more fragile than others. All this is to provide medicine that is increasingly personalized to the needs of the patient and that takes into consideration not only the purely clinical point of view but also the quality of life and psychological aspects that are often underestimated but can be the key to a better transition process. This study aims to assess 1) the effectiveness of the transition process in terms of adherence to follow-up visits, 2) the experience and satisfaction in the transition process, 3) the perception of one’s self-management abilities, and 4) the quality of life of these patients. Methods 2.1 Inclusion criteria We included patients transferred between 2010 and 2023 in our Transition Clinic for Endocrine Disorders who were over 15 years old and indicated adult endocrine follow-up. The indication for endocrine follow-up depends on the type of endocrine disorder and the clinical evaluation of the pediatric endocrinologist. The only exclusion criterion was the refusal to continue the treatment. 2.2 Data collection We analyzed medical records and collected data on the subjects' conditions, the transition process, and phone numbers. Patients were contacted by phone, informed of the study, and asked to complete a questionnaire on the objectives of this study. All contacted patients responded affirmatively, providing an e-mail address to send the online questionnaire. A single Google Module has been created to simplify the collection of answers, divided into several sections, with the questions of the different tests administered. In addition, each patient was asked about his age and his disease. Informed consent was obtained when the patient completed the questionnaire. This work has been carried out according to the criteria of the Helsinki Declaration. 2.3 Outcomes measurements To assess the adherence to follow-up visits with an adult endocrinologist, we have asked patients, “When did you have the last check-up?”. Adherence to follow-up visits was defined as patients who had the last check-up within the previous 24 months, while drop-out was defined as subjects who did not attend any follow-up appointment for more than 24 months. Satisfaction with transition was measured by the Numerical Rating Scale (NRS). The NRS is a one-dimensional question asking: “How satisfied are you with your experience with the Transition Clinic?” on a Likert scale ranging from 1 to 10 (1 = completely unsatisfied to 10 = completely satisfied). The patients’ abilities for self-management were measured with the “On Your Own Feet–Self-Efficacy Scale” (OYOF-SES). It is a self-reported questionnaire comprising 29 items with a Likert scale from 1 to 4 (1 = no, indeed not – 4 = yes, indeed). The achievable total score is between 29 and 116. Then, items are grouped into three subscales representing participants’ perceptions of their self-efficacy in coping with the condition (score between 8 and 32), their self-efficacy in the knowledge of the condition (score between 10 and 40), and their self-efficacy in skills for independent hospital visits (score between 11 and 44). A higher score on the OYOF-SES expresses the perception that patients have more self-reliance to manage the disease alone [ 13 ]. Patients’ quality of life was measured by the Short Form-36 Health Survey (SF-36®), the official Italian version of Apolone et al. 1997 (IQOLA project), from the original English of Ware and Sherbourne, 1992 [ 14 ]. SF-36® consists of 36 multiple-choice questions measuring different domains of quality of life. The data are aggregated into eight scales on Physical functioning (PF), Role-physical (RP), Bodily pain (BP), General health (GH), Vitality (VT), Social functioning (SF), Role-emotional (RE) and Mental health (MH). Then, the scales are grouped into two summarizing scores: Physical Component Summary (PCS), including PF, RP, BP, and GH scales, and Mental Component Summary (MCS), including SF, RE, MH, and VT scales. 2.4 Statistical analysis Statistical analysis was performed with the IBM SPSS Statistics program for Windows, version 26. The comparison between the variables analyzed, on self-management of the disease and quality of life, in the different groups subdivided according to the pathologies was performed through the Mann-Whitney Test. The analysis of the different variables of SF-36® was carried out using a reference database, with normative data on a sample of 2031 subjects representative of the Italian population dated 1995 [ 15 ]. The distribution of variables has been described with counts and percentages. The level of statistical significance has been set for p < 0.05. Results Between 2010 and 2023, 95 patients were transferred to the adult service: 51 males (54%) and 44 females (46%). The average age at diagnosis is 8,7 years (± 5,7 SD). The transition occurred on average at 18,8 years (± 1,7 SD). Figure 1 is the flowchart that resumes the inclusion process of the patients in this study: 70 responses out of 95 were analyzed. The primary pathology amongst the enrolled patients is hypothyroidism with 23 patients (32.9%), followed by growth hormone (GH) deficiency (13 patients, 18.6%). Concerning chromosomopathies, we enrolled ten patients with Turner syndrome (14.3%) and six with Klinefelter syndrome (8.6%). Moreover, we recruited five patients each (7.1%) for hypogonadotropic hypogonadism, panhypopituitarism, and congenital adrenal hyperplasia (CAH). Finally, two patients with pituitary adenoma still receiving endocrinological treatments (2.9%) and one patient with hypoparathyroidism (1.4%). 3.1 Drop-out As shown in Figure 2 , 71.4% of the patients stated that they had their last check-up within the previous 24 months. In contrast, 28.6% had their last follow-up visit before two years ago. Further analyzing the drop-out rate for each disease, as summarized in Table 1, shows that patients with chromosomopathies have excellent adherence; on the contrary, patients with hypoparathyroidism and pituitary adenoma have the highest drop-out rates (100%). The drop-out rates for the other conditions range from 20% to 53.8%. 3.2 Satisfaction with the transition process Satisfaction was measured by the Numerical Rating Scale (NRS), rating 1 to 10 their experience with the transition process. 82% of the subjects were delighted, rating the activity of the Transition Outpatient Clinic with a grade greater than or equal to 6. In comparison, 18% were unsatisfied (grade less than or equal to 5). The mean of the grades is 7.8 ± 2.4 SD. In particular, 83% of patients with hypothyroidism, 80% of patients with Turner syndrome, and 80% of patients with hypogonadotropic hypogonadism gave a grade of 6 or higher. Additionally, all patients with panhypopituitarism, GH deficiency, Klinefelter's syndrome, and adrenogenital syndrome expressed positive satisfaction with a score of 7 or higher. 50% of patients with pituitary adenoma gave positive feedback about the transition. Only the patient with hypoparathyroidism gave a rating of 5. 3.3 OYOF-SES evaluation Concerning the perception of one’s self-management capabilities, Figure 3 shows the distribution of the total score obtained from the answers to the OYOF-SES questionnaire. We also analyzed the results according to the different pathology, as summarized in Table 2, with an average total score of 94,3 ± 15,7 SD. The total score of OYOF-SES is composed of three subscales summarized in Tables 3, 4, and 5, representing participants’ perceptions of their self-efficacy in coping with the condition, their self-efficacy in the knowledge of the condition, and their self-efficacy in skills for independent hospital visits. 3.4 SF-36® results Table 6 clarifies for each pathology the specific component of the SF-36®: PF, RP, RE, VT, MH, SF, BP, and GH. The items are expressed as percentages and compared to the Italian media [15]. Finally, SF-36® also provides synthetic indices of Physical Component Summary (PCS) and Mental Component Summary (MCS) that are shown in Table 7 , compared to the Italian average [16]. In particular, the MCS for Klinefelter syndrome is significantly lower than the Italian media, whereas the other values are more significant or not different. Discussion Our study is the first to assess patients' quality of life in the transition process of chronic endocrinological diseases and to simultaneously analyze patient satisfaction, dropout, and self-management. The mean age of our patients at the transition is 18.8 ± 1.7 years, in line with what the literature reports: 19.4 ± 2.0 years [ 11 ], 19.7 ± 2.3 years [ 17 ], and 18.4 ± 4 years [ 18 ]. It has also been reported that a delayed age of transfer into early adulthood can improve transition outcomes and patient satisfaction [ 12 ]. Transition planning and preparation should begin during early adolescence (age 12–14 years), and the time needed to prepare young adults for transfer to adult-centered care adequately is variable [ 19 ]The transition should start when the adolescent has become aware of their condition and has the necessary tools to cope with life as an adult. Therefore, there should be no defined age, but one should adapt to the patient's needs and try to personalize the process as much as possible [ 11 ], [ 12 ]. Integration into adult-centered healthcare can be challenging for adolescents, their families, and healthcare professionals. Previous studies have shown that up to 25–34% of young adults with endocrine disorders are lost to follow-up in the adult clinic [ 21 ], [ 22 ]. In particular, Downing et al. [ 23 ] found a drop-out rate of 27%, which was stated as the failure to attend the visits within the first year. In a retrospective study published by Davidse et al. [ 24 ], 75% of young adults with endocrine conditions successfully made it to their first endocrinology visit. However, 34% were ultimately lost to follow-up in the first 2 years after transferring to adult care. A more recent study carried out by Prodam et al. [ 18 ] demonstrated a drop-out rate of up to 35.3% with a difference according to the endocrinologic disorder: thyroid disorders predicted a better adherence to the follow-up and the presence of more than one comorbidity was also predictive of good compliance. This poses young adults at risk: it can lead to serious and expensive medical acute and long-term complications with an increase in comorbidity and even mortality and a worsening of their quality of life [ 25 ]. The overall drop-out in our study was 28.6%, which aligns with the best results found in the literature.. Interestingly, 100% of our patients with Turner and Klinefelter syndromes have stayed within the limited sample size for the Klinefelter patients. Full adherence to adult endocrinologist visits of patients with chromosomopathies may indicate that these subjects are strongly sensitized to continuing controls. The drop-out rates in literature for Turner syndrome vary from 30% [ 26 ] to 36.8% [ 27 ]. The patients were generally satisfied with their experience in the pediatric endocrine pathology Transition Clinic in Verona, with 82% of the subjects having a grade greater than or equal to 6. Godbout et al.[ 11 ] reported that over 80% of patients were pleased about their first clinical visit, and their main concern was the change in their treating endocrinologist. Satisfaction is an important parameter that allows us to understand patients’ perceptions of the process and get their point of view, so we believe it should always be evaluated and interpreted as relevant feedback. To date, no work has assessed the effectiveness of the self-management of one’s disease in subjects with chronic endocrinopathies through OYOF-SES. Self-evaluation of care allowed for identifying aspects of transition that must be stressed to improve the transition process and meet patients’ expectations. The data we collected show a good capacity for self-management in the subjects analyzed, with an average score of 94.3 (± 15.7 SD) out of 116. Our patients also have a fair knowledge of their disease with an average score of 33.1 (± 6 SD) (maximum score of 40). Moreover, no significant differences were found between the different diseases. However, the average score on the “self-efficacy in skills for independent hospital visits” scale is 35.7 (± 7.3 SD), with a maximum score of 44. This indicates that these subjects have not yet reached an optimal capacity to manage their follow-up, and some of them might still needthe presence of their parents during checkups.. Until now, no study conducted on transition programs has comprehensively investigated patients' quality of life. Quality of life was defined by the World Health Organization (WHO) as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and about their goals, expectations, standards, and concerns”[ 28 ]. It is a broad-ranging concept that incorporates individuals’ physical health, psychological state, level of independence, social relationships, personal beliefs, and relationships into salient environmental features [ 28 ]. The results of the SF-36® showed overall good perceived quality of life, with scores equal to or higher than the Italian average in all variables [ 15 ], [ 16 ], except for the Mental Component Summary (MCS). The MCS average score is lower than the Italian average, although statistical significance (p < 0.05) was achieved only for patients with Klinefelter syndrome. Those patients also show a relevant impairment in Mental Health and Social Functioning, a feature that underscores the fragility of this category of patients. Nevertheless, this outcome remark how the presence of a chronic disease can affect the quality of life perceived by patients, regardless of the diagnosis. This stresses the need for psychological support for these young people. Patients with hypothyroidism have a statistically significant reduction of the Vitality score compared to the Italian population, although their Physical Component Summary is statistically higher. This may indicate that inadequate replacement therapy needs to be investigated. Finally, it is an interesting feature that almost all our patients have a better score on Bodily Pain compared to the Italian media. This finding suggests that these individuals may develop a higher pain tolerance due to the ongoing management of their condition, which could be particularly accurate for the treatment of GHD and panhypopituitarism that requires daily injections of GH. A similar statement can be made for male patients with hypogonadotropic hypogonadism on subcutaneous Follicle follicle-stimulating hormone (FSH) and human Chorionic Gonadotropin (hCG) therapy. As a result, these adolescents may exhibit a different response to pain, often perceiving it as less intense than their peers. The limitations of this study are primarily methodological. The self-evaluation and questionnaires remain subjective. However, these are questionnaires that investigate very subjective aspects of these patients' daily lives, such as perceptions of their abilities and quality of life, and therefore not investigable by more objective scales. Also, the questionnaires were given only to patients who had completed their transfer to an adult clinic. All patients lost to follow-up or who didn’t transit successfully were excluded Even the limited number of patients can be a limit, especially for some diseases, even if rare, such as hypoparathyroidism and pituitary adenoma In light of these methodological limitations, it is clear that while the study provides important insights into the quality of life of adolescents with chronic endocrine disorders, there is a need for future research with larger, more diverse cohorts and comparison groups. Addressing these limitations would improve the generalizability and validity of the findings and further our understanding of the challenges faced by this population. Conclusions This study represents an important step in understanding the quality of life, self-management, and patient satisfaction during the transition from pediatric to adult care for adolescents with chronic endocrinological conditions. The findings underscore the complexity of this transition process, which requires medical but also psychological and social support. The structured transition process at the Verona Clinic for the Transition of Chronic Endocrine Diseases has proved effective, achieving a good capacity for self-management and quality of life, especially regarding physical health, in patients transited to the adult endocrinologist. Nevertheless, the need for these patients to continue accompanying their parents to follow-up visits has emerged, highlighting the need to strengthen autonomy in managing the disease. In addition, mental health was found to be below the average of the Italian reference population. This confirms the need to reinforce the mental health analysis of young patients with chronic endocrinological diseases and give psychological support when needed. We recommend analyzing the quality of life of these patients as an integral part of the transition process in order to highlight possible frailties to be corrected before the transition to adult service. The overall drop-out rate of 28.6% is consistent with previous studies, highlighting the challenges in ensuring sustained follow-up in this vulnerable population. Notably, patients with Klinefelter and Turner syndromes showed strong adherence to adult care, suggesting that heightened awareness and regular monitoring may improve transition outcomes. Future studies would benefit from larger, more diverse cohorts and the inclusion of a healthy control group to better contextualize the findings. Despite these limitations, the study contributes valuable insights into the transition process for adolescents with chronic endocrine disorders and emphasizes the need for tailored, individualized care to optimize outcomes during this critical period of healthcare transition. Declarations Informed consent: Written informed consent was obtained from each patient. Ethics approval and consent to participate : The Institutional Ethics Committee of the provinces of Verona and Rovigo, Italy, noted the study's retrospective design and approved the results for publication, the study was conducted in accordance with the most recent World Medical Association (WMA) Declaration of Helsinki. Conflict of interest: The authors declare that the research was conducted without any commercial or financial relationships that could be construed as a potential conflict of interest. Authors contribution All the authors had full access to all of the data in the study and took responsibility for the integrity of the data and the accuracy of the data analysis. Moreover, all the authors read and approved the final manuscript. In particular, RG conceived the study and contributed to the preparation and critical review of the manuscript; SM collected the data, wrote the manuscript, and performed the statistical analysis; TZ and SV collected the data; FA, RC, AP, and RG conceived the study and participated in its coordination. Acknowledgement : Not applicable. Funding This research did not receive any specific grant from any public, commercial, or not-for-profit funding agency. Data availability The data is available in our university hospital, without difficulty. We have tried to report as much data as possible in the tables and supplementary files. 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Tables Tables 1 to 7 are available in the supplementary files section Supplementary Files Tables.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviewers invited by journal 04 Feb, 2026 Editor assigned by journal 11 Dec, 2025 First submitted to journal 09 Dec, 2025 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. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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-8261248","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":585496778,"identity":"220e4b75-d83c-48ce-b500-d5ee9e21257f","order_by":0,"name":"Stefania Munari","email":"","orcid":"","institution":"University of Verona Department of Surgery Dentistry Paediatrics and Gynaecology: Universita degli Studi di Verona Dipartimento di Scienze Chirurgiche Odontostomatologiche e 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Materno-Infantili","correspondingAuthor":false,"prefix":"","firstName":"Rossella","middleName":"","lastName":"Gaudino","suffix":""}],"badges":[],"createdAt":"2025-12-02 13:48:35","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8261248/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8261248/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102209935,"identity":"64b331be-c209-46e0-b6ca-cead1117c702","added_by":"auto","created_at":"2026-02-09 12:15:11","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":78278,"visible":true,"origin":"","legend":"\u003cp\u003eDescriptive flowchart of patients included in the study\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-8261248/v1/e7ea33b598a708dbd068ccac.png"},{"id":102209936,"identity":"f0895e15-0691-4f24-a40e-60aac43df80a","added_by":"auto","created_at":"2026-02-09 12:15:12","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":125763,"visible":true,"origin":"","legend":"\u003cp\u003eDrop-out rate\u003c/p\u003e","description":"","filename":"2.png","url":"https://assets-eu.researchsquare.com/files/rs-8261248/v1/ba00f2ea3611be6a2b16fb71.png"},{"id":102209937,"identity":"77caa2bb-bdc2-4852-bc46-6fb42562f054","added_by":"auto","created_at":"2026-02-09 12:15:12","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":22950,"visible":true,"origin":"","legend":"\u003cp\u003eTotal score OYOF-SES of all patients\u003c/p\u003e","description":"","filename":"3.png","url":"https://assets-eu.researchsquare.com/files/rs-8261248/v1/853582c01c1b831832af5e35.png"},{"id":102297319,"identity":"07094c96-3dfd-4074-80ed-dc3d4a509266","added_by":"auto","created_at":"2026-02-10 10:27:00","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":774214,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8261248/v1/9e20107f-3362-4b28-9995-6633f6c7a642.pdf"},{"id":102209933,"identity":"fdb1f5f0-7cf9-4e52-98cd-5e3c89ad2cdb","added_by":"auto","created_at":"2026-02-09 12:15:11","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":29980,"visible":true,"origin":"","legend":"","description":"","filename":"Tables.docx","url":"https://assets-eu.researchsquare.com/files/rs-8261248/v1/898831a0120ba18eab0cc66d.docx"}],"financialInterests":"","formattedTitle":"The transition process for adolescents with an endocrine pathology: quality of life, drop-out, and self-management skills","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThe transition process is \u0026ldquo;the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems\u0026rdquo;[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. This is the first definition, dating back to 1993, but this concept is evolving and other essential features have been added over the years. Ensuring quality care and avoiding care gaps is vital [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. It should be a \u0026ldquo;gradual process of empowerment that equips young people with the skills and knowledge necessary to manage their healthcare in pediatric and adult services\u0026rdquo; [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. The transition is a complex process that should be managed by a multi-disciplinary team that handles the medical, psychological, educational, and social necessities of patients with chronic conditions during adolescence [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. The multi-disciplinary team aims to provide coordinated, uninterrupted healthcare to help young patients develop communication, decision-making, assertiveness, and self-care skills to manage their condition and social, educational, and employment opportunities and challenges [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe need to develop transition programs has been revealed in the last few years for two main reasons. Firstly, the increased prevalence of the most typical chronic conditions and increased survival of children with congenital conditions that only a few years ago were fatal in infancy or childhood, such as cystic fibrosis, have produced cohorts of young adults with diseases previously unseen by adult services. Secondly, poorly planned transitions can be associated with an increased risk of non-adherence to treatment and lack of follow-up, with subsequent measurable adverse consequences in morbidity and mortality and social and educational outcomes [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. For several prevalent chronic diseases (i.e., type 1 diabetes, chronic kidney failure, and cystic fibrosis), transition programs have been demonstrated to be effective in improving compliance of young patients in adult care services since it occurs throughout social adaptation (i.e., leaving home, job challenges or having a partner) when the acceptance of care could be poor [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e], [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e], [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Nevertheless, many factors can hinder transition: barriers to transition include preexisting factors (sociodemographic and culture, health care access/insurance, health status/risk) and interrelated components (development, knowledge, skills/efficacy, beliefs/expectations, goals, relationships, and psychosocial functioning) [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eMany different models of transition have been described to date. The models include 1) a dedicated follow-up service within the adult setting, which is the simplest model, but there is no continuity from pediatric services; 2) a \u0026ldquo;seamless\u0026rdquo; clinic, which begins in adolescence and continues into adulthood, allowing patients to benefit both from child and adult professionals; 3) Life-long follow-up within the pediatric setting; 4) a generic \u0026ldquo;transition team\u0026rdquo; within a children\u0026rsquo;s hospital, involving 1\u0026ndash;2 dedicated nurse specialists who can ensure that all young people in the different specialties go through appropriate transitions. These different models have been studied to identify the best, but not a single approach has been proved superior [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The common points between the different proposed models are essentially three, regardless of the disorder: transition preparation and planning, transfer of care, and successful intake and integration into adult-centered healthcare [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e], [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eUnfortunately, in most cases, the transition is instead a transfer of young people to what looks like the most relevant adult clinic or discharge from the children\u0026rsquo;s clinic with instructions to ask the general practitioner for a referral to adult services [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. This often results in nonadherence: missed medical appointments and poor health outcomes [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Unfortunately, this might be the consequence of the absence of specific international transition guidelines for each chronic disease, and the transversal application of existing programs and policies has not been established.\u003c/p\u003e \u003cp\u003eAt the University Hospital of Verona, the Transition Clinic was born in 2010 for adolescents and young adults with endocrine disorders who need to continue to follow up with an adult endocrinologist. The Transition Clinic is based on the diabetes joint-clinic model and is conjointly managed by child and adult endocrinologists. Visits to the Transition Clinic begin at 12 years old and continue until the young patient has acquired the necessary maturity to manage his condition. Transition timing should not be based on a rigid age threshold because chronological age and developmental maturation do not always match up [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Our transition clinic was established with the intent of ensuring an appropriate transition of care for adolescents with chronic endocrinological pathology, seeking to provide the best possible support to youth and their families with the help of the general practitioner who is fully involved in the transition process and is responsible for the continuity of home care.\u003c/p\u003e \u003cp\u003eWith this study, we want to evaluate what critical issues young patients face so that we can ensure an increasingly better transition process and suggest possible strategies to implement in specific categories of patients who turn out to be more fragile than others. All this is to provide medicine that is increasingly personalized to the needs of the patient and that takes into consideration not only the purely clinical point of view but also the quality of life and psychological aspects that are often underestimated but can be the key to a better transition process.\u003c/p\u003e \u003cp\u003eThis study aims to assess 1) the effectiveness of the transition process in terms of adherence to follow-up visits, 2) the experience and satisfaction in the transition process, 3) the perception of one\u0026rsquo;s self-management abilities, and 4) the quality of life of these patients.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 Inclusion criteria\u003c/h2\u003e \u003cp\u003eWe included patients transferred between 2010 and 2023 in our Transition Clinic for Endocrine Disorders who were over 15 years old and indicated adult endocrine follow-up. The indication for endocrine follow-up depends on the type of endocrine disorder and the clinical evaluation of the pediatric endocrinologist.\u003c/p\u003e \u003cp\u003eThe only exclusion criterion was the refusal to continue the treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 Data collection\u003c/h2\u003e \u003cp\u003eWe analyzed medical records and collected data on the subjects' conditions, the transition process, and phone numbers. Patients were contacted by phone, informed of the study, and asked to complete a questionnaire on the objectives of this study. All contacted patients responded affirmatively, providing an e-mail address to send the online questionnaire. A single Google Module has been created to simplify the collection of answers, divided into several sections, with the questions of the different tests administered. In addition, each patient was asked about his age and his disease. Informed consent was obtained when the patient completed the questionnaire. This work has been carried out according to the criteria of the Helsinki Declaration.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3 Outcomes measurements\u003c/h2\u003e \u003cp\u003eTo assess the adherence to follow-up visits with an adult endocrinologist, we have asked patients, \u0026ldquo;When did you have the last check-up?\u0026rdquo;. Adherence to follow-up visits was defined as patients who had the last check-up within the previous 24 months, while drop-out was defined as subjects who did not attend any follow-up appointment for more than 24 months.\u003c/p\u003e \u003cp\u003eSatisfaction with transition was measured by the Numerical Rating Scale (NRS). The NRS is a one-dimensional question asking: \u0026ldquo;How satisfied are you with your experience with the Transition Clinic?\u0026rdquo; on a Likert scale ranging from 1 to 10 (1\u0026thinsp;=\u0026thinsp;completely unsatisfied to 10\u0026thinsp;=\u0026thinsp;completely satisfied).\u003c/p\u003e \u003cp\u003eThe patients\u0026rsquo; abilities for self-management were measured with the \u0026ldquo;On Your Own Feet\u0026ndash;Self-Efficacy Scale\u0026rdquo; (OYOF-SES). It is a self-reported questionnaire comprising 29 items with a Likert scale from 1 to 4 (1\u0026thinsp;=\u0026thinsp;no, indeed not \u0026ndash; 4\u0026thinsp;=\u0026thinsp;yes, indeed). The achievable total score is between 29 and 116. Then, items are grouped into three subscales representing participants\u0026rsquo; perceptions of their self-efficacy in coping with the condition (score between 8 and 32), their self-efficacy in the knowledge of the condition (score between 10 and 40), and their self-efficacy in skills for independent hospital visits (score between 11 and 44). A higher score on the OYOF-SES expresses the perception that patients have more self-reliance to manage the disease alone [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePatients\u0026rsquo; quality of life was measured by the Short Form-36 Health Survey (SF-36\u0026reg;), the official Italian version of Apolone et al. 1997 (IQOLA project), from the original English of Ware and Sherbourne, 1992 [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. SF-36\u0026reg; consists of 36 multiple-choice questions measuring different domains of quality of life. The data are aggregated into eight scales on Physical functioning (PF), Role-physical (RP), Bodily pain (BP), General health (GH), Vitality (VT), Social functioning (SF), Role-emotional (RE) and Mental health (MH). Then, the scales are grouped into two summarizing scores: Physical Component Summary (PCS), including PF, RP, BP, and GH scales, and Mental Component Summary (MCS), including SF, RE, MH, and VT scales.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4 Statistical analysis\u003c/h2\u003e \u003cp\u003eStatistical analysis was performed with the IBM SPSS Statistics program for Windows, version 26. The comparison between the variables analyzed, on self-management of the disease and quality of life, in the different groups subdivided according to the pathologies was performed through the Mann-Whitney Test.\u003c/p\u003e \u003cp\u003eThe analysis of the different variables of SF-36\u0026reg; was carried out using a reference database, with normative data on a sample of 2031 subjects representative of the Italian population dated 1995 [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe distribution of variables has been described with counts and percentages. The level of statistical significance has been set for p\u0026thinsp;\u0026lt;\u0026thinsp;0.05.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eBetween 2010 and 2023, 95 patients were transferred to the adult service: 51 males (54%) and 44 females (46%). The average age at diagnosis is 8,7 years (\u0026plusmn; 5,7 SD). The transition occurred on average at 18,8 years (\u0026plusmn; 1,7 SD). \u003cstrong\u003eFigure 1\u003c/strong\u003e is the flowchart that resumes the inclusion process of the patients in this study: 70 responses out of 95 were analyzed.\u003c/p\u003e\n\u003cp\u003eThe primary pathology amongst the enrolled patients is hypothyroidism with 23 patients (32.9%), followed by growth hormone (GH) deficiency (13 patients, 18.6%). Concerning chromosomopathies, we enrolled ten patients with Turner syndrome (14.3%) and six with Klinefelter syndrome (8.6%). Moreover, we recruited five patients each (7.1%) for hypogonadotropic hypogonadism, panhypopituitarism, and congenital adrenal hyperplasia (CAH). Finally, two patients with pituitary adenoma still receiving endocrinological treatments (2.9%) and one patient with hypoparathyroidism (1.4%).\u0026nbsp;\u003c/p\u003e\n\u003cp id=\"_Toc179707280\"\u003e\u003cstrong\u003e3.1 Drop-out\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs shown in \u003cstrong\u003eFigure 2\u003c/strong\u003e, 71.4% of the patients stated that they had their last check-up within the previous 24 months. In contrast, 28.6% had their last follow-up visit before two years ago.\u003c/p\u003e\n\u003cp\u003eFurther analyzing the drop-out rate for each disease, as summarized in \u003cstrong\u003eTable 1,\u003c/strong\u003e shows that patients with chromosomopathies have excellent adherence; on the contrary, patients with hypoparathyroidism and pituitary adenoma have the highest drop-out rates (100%). The drop-out rates for the other conditions range from 20% to 53.8%.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.2 Satisfaction with the transition process\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSatisfaction was measured by the Numerical Rating Scale (NRS), rating 1 to 10 their experience with the transition process. 82% of the subjects were delighted, rating the activity of the Transition Outpatient Clinic with a grade greater than or equal to 6. In comparison, 18% were unsatisfied (grade less than or equal to 5). The mean of the grades is 7.8 \u0026plusmn; 2.4 SD.\u003c/p\u003e\n\u003cp\u003eIn particular, 83% of patients with hypothyroidism, 80% of patients with Turner syndrome, and 80% of patients with hypogonadotropic hypogonadism gave a grade of 6 or higher. Additionally, all patients with panhypopituitarism, GH deficiency, Klinefelter\u0026apos;s syndrome, and adrenogenital syndrome expressed positive satisfaction with a score of 7 or higher. 50% of patients with pituitary adenoma gave positive feedback about the transition. Only the patient with hypoparathyroidism gave a rating of 5.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.3 OYOF-SES evaluation\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConcerning the perception of one\u0026rsquo;s self-management capabilities, \u003cstrong\u003eFigure 3\u0026nbsp;\u003c/strong\u003eshows the distribution of the total score obtained from the answers to the OYOF-SES questionnaire.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe also analyzed the results according to the different pathology, as summarized in \u003cstrong\u003eTable 2,\u0026nbsp;\u003c/strong\u003ewith an average total score of 94,3 \u0026plusmn; 15,7 SD.\u003c/p\u003e\n\u003cp\u003eThe total score of OYOF-SES is composed of three subscales summarized in Tables 3, 4, and 5, representing participants\u0026rsquo; perceptions of their self-efficacy in coping with the condition, their self-efficacy in the knowledge of the condition, and their self-efficacy in skills for independent hospital visits.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3.4\u003cem\u003e\u0026nbsp;\u003c/em\u003eSF-36\u0026reg; results\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 6\u003c/strong\u003e clarifies for each pathology the specific component of the SF-36\u0026reg;: PF, RP, RE, VT, MH, SF, BP, and GH. The items are expressed as percentages and compared to the Italian media [15].\u003c/p\u003e\n\u003cp\u003eFinally, SF-36\u0026reg; also provides synthetic indices of Physical Component Summary (PCS) and Mental Component Summary (MCS) that are shown in \u003cstrong\u003eTable 7\u003c/strong\u003e, compared to the Italian average [16]. In particular, the MCS for Klinefelter syndrome is significantly lower than the Italian media, whereas the other values are more significant or not different.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study is the first to assess patients' quality of life in the transition process of chronic endocrinological diseases and to simultaneously analyze patient satisfaction, dropout, and self-management.\u003c/p\u003e \u003cp\u003eThe mean age of our patients at the transition is 18.8\u0026thinsp;\u0026plusmn;\u0026thinsp;1.7 years, in line with what the literature reports: 19.4\u0026thinsp;\u0026plusmn;\u0026thinsp;2.0 years [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], 19.7\u0026thinsp;\u0026plusmn;\u0026thinsp;2.3 years [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e], and 18.4\u0026thinsp;\u0026plusmn;\u0026thinsp;4 years [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. It has also been reported that a delayed age of transfer into early adulthood can improve transition outcomes and patient satisfaction [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Transition planning and preparation should begin during early adolescence (age 12\u0026ndash;14 years), and the time needed to prepare young adults for transfer to adult-centered care adequately is variable [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]The transition should start when the adolescent has become aware of their condition and has the necessary tools to cope with life as an adult. Therefore, there should be no defined age, but one should adapt to the patient's needs and try to personalize the process as much as possible [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIntegration into adult-centered healthcare can be challenging for adolescents, their families, and healthcare professionals. Previous studies have shown that up to 25\u0026ndash;34% of young adults with endocrine disorders are lost to follow-up in the adult clinic [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e], [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. In particular, Downing et al. [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] found a drop-out rate of 27%, which was stated as the failure to attend the visits within the first year. In a retrospective study published by Davidse et al. [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], 75% of young adults with endocrine conditions successfully made it to their first endocrinology visit. However, 34% were ultimately lost to follow-up in the first 2 years after transferring to adult care. A more recent study carried out by Prodam et al. [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] demonstrated a drop-out rate of up to 35.3% with a difference according to the endocrinologic disorder: thyroid disorders predicted a better adherence to the follow-up and the presence of more than one comorbidity was also predictive of good compliance.\u003c/p\u003e \u003cp\u003eThis poses young adults at risk: it can lead to serious and expensive medical acute and long-term complications with an increase in comorbidity and even mortality and a worsening of their quality of life [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe overall drop-out in our study was 28.6%, which aligns with the best results found in the literature.. Interestingly, 100% of our patients with Turner and Klinefelter syndromes have stayed within the limited sample size for the Klinefelter patients. Full adherence to adult endocrinologist visits of patients with chromosomopathies may indicate that these subjects are strongly sensitized to continuing controls. The drop-out rates in literature for Turner syndrome vary from 30% [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e] to 36.8% [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe patients were generally satisfied with their experience in the pediatric endocrine pathology Transition Clinic in Verona, with 82% of the subjects having a grade greater than or equal to 6. Godbout et al.[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e] reported that over 80% of patients were pleased about their first clinical visit, and their main concern was the change in their treating endocrinologist. Satisfaction is an important parameter that allows us to understand patients\u0026rsquo; perceptions of the process and get their point of view, so we believe it should always be evaluated and interpreted as relevant feedback.\u003c/p\u003e \u003cp\u003eTo date, no work has assessed the effectiveness of the self-management of one\u0026rsquo;s disease in subjects with chronic endocrinopathies through OYOF-SES. Self-evaluation of care allowed for identifying aspects of transition that must be stressed to improve the transition process and meet patients\u0026rsquo; expectations. The data we collected show a good capacity for self-management in the subjects analyzed, with an average score of 94.3 (\u0026plusmn;\u0026thinsp;15.7 SD) out of 116. Our patients also have a fair knowledge of their disease with an average score of 33.1 (\u0026plusmn;\u0026thinsp;6 SD) (maximum score of 40). Moreover, no significant differences were found between the different diseases. However, the average score on the \u0026ldquo;self-efficacy in skills for independent hospital visits\u0026rdquo; scale is 35.7 (\u0026plusmn;\u0026thinsp;7.3 SD), with a maximum score of 44. This indicates that these subjects have not yet reached an optimal capacity to manage their follow-up, and some of them might still needthe presence of their parents during checkups..\u003c/p\u003e \u003cp\u003eUntil now, no study conducted on transition programs has comprehensively investigated patients' quality of life. Quality of life was defined by the World Health Organization (WHO) as \u0026ldquo;individuals\u0026rsquo; perception of their position in life in the context of the culture and value systems in which they live and about their goals, expectations, standards, and concerns\u0026rdquo;[\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. It is a broad-ranging concept that incorporates individuals\u0026rsquo; physical health, psychological state, level of independence, social relationships, personal beliefs, and relationships into salient environmental features [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe results of the SF-36\u0026reg; showed overall good perceived quality of life, with scores equal to or higher than the Italian average in all variables [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e], except for the Mental Component Summary (MCS). The MCS average score is lower than the Italian average, although statistical significance (p\u0026thinsp;\u0026lt;\u0026thinsp;0.05) was achieved only for patients with Klinefelter syndrome. Those patients also show a relevant impairment in Mental Health and Social Functioning, a feature that underscores the fragility of this category of patients. Nevertheless, this outcome remark how the presence of a chronic disease can affect the quality of life perceived by patients, regardless of the diagnosis. This stresses the need for psychological support for these young people. Patients with hypothyroidism have a statistically significant reduction of the Vitality score compared to the Italian population, although their Physical Component Summary is statistically higher. This may indicate that inadequate replacement therapy needs to be investigated.\u003c/p\u003e \u003cp\u003eFinally, it is an interesting feature that almost all our patients have a better score on Bodily Pain compared to the Italian media. This finding suggests that these individuals may develop a higher pain tolerance due to the ongoing management of their condition, which could be particularly accurate for the treatment of GHD and panhypopituitarism that requires daily injections of GH. A similar statement can be made for male patients with hypogonadotropic hypogonadism on subcutaneous Follicle follicle-stimulating hormone (FSH) and human Chorionic Gonadotropin (hCG) therapy. As a result, these adolescents may exhibit a different response to pain, often perceiving it as less intense than their peers.\u003c/p\u003e \u003cp\u003eThe limitations of this study are primarily methodological. The self-evaluation and questionnaires remain subjective. However, these are questionnaires that investigate very subjective aspects of these patients' daily lives, such as perceptions of their abilities and quality of life, and therefore not investigable by more objective scales. Also, the questionnaires were given only to patients who had completed their transfer to an adult clinic. All patients lost to follow-up or who didn\u0026rsquo;t transit successfully were excluded Even the limited number of patients can be a limit, especially for some diseases, even if rare, such as hypoparathyroidism and pituitary adenoma In light of these methodological limitations, it is clear that while the study provides important insights into the quality of life of adolescents with chronic endocrine disorders, there is a need for future research with larger, more diverse cohorts and comparison groups. Addressing these limitations would improve the generalizability and validity of the findings and further our understanding of the challenges faced by this population.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThis study represents an important step in understanding the quality of life, self-management, and patient satisfaction during the transition from pediatric to adult care for adolescents with chronic endocrinological conditions. The findings underscore the complexity of this transition process, which requires medical but also psychological and social support.\u003c/p\u003e \u003cp\u003eThe structured transition process at the Verona Clinic for the Transition of Chronic Endocrine Diseases has proved effective, achieving a good capacity for self-management and quality of life, especially regarding physical health, in patients transited to the adult endocrinologist. Nevertheless, the need for these patients to continue accompanying their parents to follow-up visits has emerged, highlighting the need to strengthen autonomy in managing the disease. In addition, mental health was found to be below the average of the Italian reference population. This confirms the need to reinforce the mental health analysis of young patients with chronic endocrinological diseases and give psychological support when needed. We recommend analyzing the quality of life of these patients as an integral part of the transition process in order to highlight possible frailties to be corrected before the transition to adult service.\u003c/p\u003e \u003cp\u003eThe overall drop-out rate of 28.6% is consistent with previous studies, highlighting the challenges in ensuring sustained follow-up in this vulnerable population. Notably, patients with Klinefelter and Turner syndromes showed strong adherence to adult care, suggesting that heightened awareness and regular monitoring may improve transition outcomes.\u003c/p\u003e \u003cp\u003eFuture studies would benefit from larger, more diverse cohorts and the inclusion of a healthy control group to better contextualize the findings. Despite these limitations, the study contributes valuable insights into the transition process for adolescents with chronic endocrine disorders and emphasizes the need for tailored, individualized care to optimize outcomes during this critical period of healthcare transition.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eInformed consent:\u0026nbsp;\u003c/strong\u003eWritten informed consent was obtained from each patient.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003cstrong\u003e:\u0026nbsp;\u003c/strong\u003eThe Institutional Ethics Committee of the provinces of Verona and Rovigo, Italy, noted the study's retrospective design and approved the results for publication, the study was conducted in accordance with the most recent World Medical Association (WMA) Declaration of Helsinki.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest:\u0026nbsp;\u003c/strong\u003eThe authors declare that the research was conducted without any commercial or financial relationships that could be construed as a potential conflict of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors contribution\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll the authors had full access to all of the data in the study and took responsibility for the integrity of the data and the accuracy of the data analysis. Moreover, all the authors read and approved the final manuscript. In particular, RG conceived the study and contributed to the preparation and critical review of the manuscript; SM collected the data, wrote the manuscript, and performed the statistical analysis; TZ and SV collected the data; FA, RC, AP, and RG conceived the study and participated in its coordination.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgement\u003c/strong\u003e: Not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003eThis research did not receive any specific grant from any public, commercial, or not-for-profit funding agency.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u0026nbsp;\u003c/strong\u003eThe data is available in our university hospital, without difficulty. We have tried to report as much data as possible in the tables and supplementary files.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eBlum RW \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;Transition from child-centered to adult health-care systems for adolescents with chronic conditions. a position paper of the society for adolescent medicine. ,\u0026rdquo; \u003cem\u003eJournal of Adolescent Health\u003c/em\u003e, vol. 14, pp. 570\u0026ndash;576, 1993.\u003c/li\u003e\n \u003cli\u003eA. Perino and N. Braida, \u0026ldquo;La transitional care di adolescenti con malattie rare,\u0026rdquo; \u003cem\u003eAdolescentologia\u003c/em\u003e, vol. 5, pp. 101\u0026ndash;111, Jun. 2013.\u003c/li\u003e\n \u003cli\u003eA. Nagra, P. M. Mcginnity, N. Davis, and A. P. Salmon, \u0026ldquo;Implementing transition: Ready Steady Go,\u0026rdquo; 2015, doi: 10.1136/edpract-2015-309204.\u003c/li\u003e\n \u003cli\u003eR. M. Viner, \u0026ldquo;Transition of care from paediatric to adult services: one part of improved health services for adolescents,\u0026rdquo; \u003cem\u003eArch Dis Child\u003c/em\u003e, vol. 93, no. 2, p. 160, Feb. 2008, doi: 10.1136/adc.2006.103721.\u003c/li\u003e\n \u003cli\u003eA. Jordan and J. E. McDonagh, \u0026ldquo;Transition: getting it right for young people,\u0026rdquo; \u003cem\u003eClinical Medicine\u003c/em\u003e, vol. 6, no. 5, pp. 497\u0026ndash;500, 2006, doi: https://doi.org/10.7861/clinmedicine.6-5-497.\u003c/li\u003e\n \u003cli\u003eA. Alassaf, L. Gharaibeh, C. Grant, and Z. Punthakee, \u0026ldquo;Predictors of type 1 diabetes mellitus outcomes in young adults after transition from pediatric care,\u0026rdquo; \u003cem\u003eJ Diabetes\u003c/em\u003e, vol. 9, no. 12, pp. 1058\u0026ndash;1064, Dec. 2017, doi: https://doi.org/10.1111/1753-0407.12536.\u003c/li\u003e\n \u003cli\u003eR. Crowley, I. Wolfe, K. Lock, and M. McKee, \u0026ldquo;Improving the transition between paediatric and adult healthcare: a systematic review,\u0026rdquo; \u003cem\u003eArch Dis Child\u003c/em\u003e, vol. 96, no. 6, p. 548, Jun. 2011, doi: 10.1136/adc.2010.202473.\u003c/li\u003e\n \u003cli\u003eJ. Becker, E. Ravens, L. Pape, and G. Ernst, \u0026ldquo;Somatic outcomes of young people with chronic diseases participating in transition programs: a systematic review,\u0026rdquo; vol. 2, no. 1, 2020, doi: doi:10.1515/jtm-2020-0003.\u003c/li\u003e\n \u003cli\u003eW. N. Gray, M. R. Schaefer, A. Resmini-Rawlinson, and S. T. Wagoner, \u0026ldquo;Barriers to Transition From Pediatric to Adult Care: A Systematic Review,\u0026rdquo; \u003cem\u003eJ Pediatr Psychol\u003c/em\u003e, vol. 43, no. 5, pp. 488\u0026ndash;502, Jun. 2018, doi: 10.1093/jpepsy/jsx142.\u003c/li\u003e\n \u003cli\u003eJ. D. Vakharia and T. L. Stanley, \u0026ldquo;Facilitating the transition from paediatric to adult care in endocrinology: A focus on growth disorders,\u0026rdquo; Feb. 01, 2023, \u003cem\u003eLippincott Williams and Wilkins\u003c/em\u003e. doi: 10.1097/MED.0000000000000785.\u003c/li\u003e\n \u003cli\u003eA. Godbout, I. Tejedor, S. Malivoir, M. Polak, and P. Touraine, \u0026ldquo;Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions,\u0026rdquo; \u003cem\u003eHorm Res Paediatr\u003c/em\u003e, vol. 78, no. 4, pp. 247\u0026ndash;255, Nov. 2012, doi: 10.1159/000343818.\u003c/li\u003e\n \u003cli\u003eA. Yassaee, D. Hale, A. Armitage, and R. Viner, \u0026ldquo;The Impact of Age of Transfer on Outcomes in the Transition From Pediatric to Adult Health Systems: A Systematic Review of Reviews,\u0026rdquo; Jun. 01, 2019, \u003cem\u003eElsevier USA\u003c/em\u003e. doi: 10.1016/j.jadohealth.2018.11.023.\u003c/li\u003e\n \u003cli\u003eA. van Staa and J. N. T. Sattoe, \u0026ldquo;Young Adults\u0026rsquo; Experiences and Satisfaction With the Transfer of Care,\u0026rdquo; \u003cem\u003eJournal of Adolescent Health\u003c/em\u003e, vol. 55, no. 6, pp. 796\u0026ndash;803, Dec. 2014, doi: 10.1016/j.jadohealth.2014.06.008.\u003c/li\u003e\n \u003cli\u003eG. Apolone and P. Mosconi, \u0026ldquo;The Italian SF-36 Health Survey: Translation, Validation and Norming,\u0026rdquo; \u003cem\u003eJ Clin Epidemiol\u003c/em\u003e, vol. 51, no. 11, pp. 1025\u0026ndash;1036, Nov. 1998, doi: 10.1016/S0895-4356(98)00094-8.\u003c/li\u003e\n \u003cli\u003eG. Apolone and P. Mosconi, \u0026ldquo;The Italian SF-36 Health Survey: Translation, Validation and Norming,\u0026rdquo; 1998.\u003c/li\u003e\n \u003cli\u003eS. D\u0026rsquo;Alisa, G. Miscio, S. Baudo, A. Simone, L. Tesio, and A. Mauro, \u0026ldquo;Depression is the main determinant of quality of life in multiple sclerosis: A classification-regression (CART) study,\u0026rdquo; \u003cem\u003eDisabil Rehabil\u003c/em\u003e, vol. 28, no. 5, pp. 307\u0026ndash;314, Mar. 2006, doi: 10.1080/09638280500191753.\u003c/li\u003e\n \u003cli\u003eC. Rutishauser, S. M. Sawyer, and A.-E. Ambresin, \u0026ldquo;Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care,\u0026rdquo; \u003cem\u003eEur J Pediatr\u003c/em\u003e, vol. 173, no. 8, pp. 1067\u0026ndash;1074, 2014, doi: 10.1007/s00431-014-2291-9.\u003c/li\u003e\n \u003cli\u003eF. Prodam \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;Transition in endocrinology: predictors of drop-out of a heterogeneous population on a long-term follow-up,\u0026rdquo; \u003cem\u003eJ Endocrinol Invest\u003c/em\u003e, vol. 46, no. 5, pp. 1009\u0026ndash;1016, May 2023, doi: 10.1007/s40618-022-01975-4.\u003c/li\u003e\n \u003cli\u003eL. F. Davidson and M. H. Doyle, \u0026ldquo;Health-care Transition: A Vital Part of Care, Growth, and Change for Pediatric Patients,\u0026rdquo; \u003cem\u003ePediatr Rev\u003c/em\u003e, vol. 42, no. 12, pp. 684\u0026ndash;693, Dec. 2021, doi: 10.1542/pir.2020-000422.\u003c/li\u003e\n \u003cli\u003eL. van Alewijk \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;Transition readiness among adolescents with rare endocrine conditions,\u0026rdquo; \u003cem\u003eEndocr Connect\u003c/em\u003e, vol. 10, no. 4, pp. 432\u0026ndash;446, 2021, doi: 10.1530/EC-20-0304.\u003c/li\u003e\n \u003cli\u003eH. Gleeson, S. McCartney, and V. Lidstone, \u0026ldquo;\u0026lsquo;Everybody\u0026rsquo;s business\u0026rsquo;: transition and the role of adult physicians,\u0026rdquo; \u003cem\u003eClinical Medicine\u003c/em\u003e, vol. 12, no. 6, pp. 561\u0026ndash;567, 2012, doi: https://doi.org/10.7861/clinmedicine.12-6-561.\u003c/li\u003e\n \u003cli\u003eT. M. Kapellen and W. Kiess, \u0026ldquo;Transition of adolescents and young adults with endocrine diseases to adult health care,\u0026rdquo; \u003cem\u003eBest Pract Res Clin Endocrinol Metab\u003c/em\u003e, vol. 29, no. 3, pp. 505\u0026ndash;513, 2015, doi: https://doi.org/10.1016/j.beem.2015.03.005.\u003c/li\u003e\n \u003cli\u003eJ. Downing, H. K. Gleeson, P. E. Clayton, J. R. E. Davis, J. K. Wales, and P. Callery, \u0026ldquo;Transition in endocrinology: the challenge of maintaining continuity,\u0026rdquo; \u003cem\u003eClin Endocrinol (Oxf)\u003c/em\u003e, vol. 78, no. 1, pp. 29\u0026ndash;35, Jan. 2013, doi: https://doi.org/10.1111/j.1365-2265.2012.04473.x.\u003c/li\u003e\n \u003cli\u003eK. Davidse \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;We mind your step: understanding and preventing drop-out in the transfer from paediatric to adult tertiary endocrine healthcare,\u0026rdquo; \u003cem\u003eEndocr Connect\u003c/em\u003e, vol. 11, no. 5, May 2022, doi: 10.1530/EC-22-0025.\u003c/li\u003e\n \u003cli\u003eKruse B \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;Congenital adrenal hyperplasia-how to improve the transition from adolescence to adult life.,\u0026rdquo; \u003cem\u003eExperimental and Clinical Endocrinology and Diabetes\u0026nbsp;\u003c/em\u003e, vol. 112, pp. 343\u0026ndash;355, 2004.\u003c/li\u003e\n \u003cli\u003eK. Freriks \u003cem\u003eet al.\u003c/em\u003e, \u0026ldquo;Standardized multidisciplinary evaluation yields significant previously undiagnosed morbidity in adult women with turner syndrome,\u0026rdquo; \u003cem\u003eJournal of Clinical Endocrinology and Metabolism\u003c/em\u003e, vol. 96, no. 9, Sep. 2011, doi: 10.1210/jc.2011-0346.\u003c/li\u003e\n \u003cli\u003eC. C. Pedreira, R. Hameed, S. Kanumakala, and M. Zacharin, \u0026ldquo;Health-care problems of Turner syndrome in the adult woman: a cross sectional study of a Victorian cohort and a case for transition,\u0026rdquo; \u003cem\u003eIntern Med J\u003c/em\u003e, vol. 36, no. 1, pp. 54\u0026ndash;57, Jan. 2006, doi: https://doi.org/10.1111/j.1445-5994.2005.00990.x.\u003c/li\u003e\n \u003cli\u003eS. Kim, \u0026ldquo;World Health Organization Quality of Life (WHOQOL) Assessment,\u0026rdquo; in \u003cem\u003eEncyclopedia of Quality of Life and Well-Being Research\u003c/em\u003e, A. C. Michalos, Ed., Dordrecht: Springer Netherlands, 2014, pp. 7260\u0026ndash;7261. doi: 10.1007/978-94-007-0753-5_3282.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTables 1 to 7 are available in the supplementary files section\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"italian-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"itjp","sideBox":"Learn more about [Italian Journal of Pediatrics](http://ijponline.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/ITJP/default.aspx","title":"Italian Journal of Pediatrics","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"transition, chronic endocrinopathies, drop-out, quality-of-life, self-management skills","lastPublishedDoi":"10.21203/rs.3.rs-8261248/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8261248/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eWe analyzed patients with chronic endocrinopathies who transited in our clinic in Verona from 2010 to 2023 to assess the effectiveness of the transition process by measuring adherence to follow-up visits, experience and satisfaction with the transition process, the perception of their self-management skills and the assessment of the quality of life of these patients.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003e70 patients with nine different chronic endocrinopathies were included in this study. Clinical data have been collected through the consultation of medical records. Moreover, subjects have been offered an online, anonymous questionnaire. Adherence to follow-up visits was assessed by detecting the last control visit. A Numerical Rating Scale (NRS) measured satisfaction with the transition process. Evaluation of the perception of one\u0026rsquo;s self-management skills and quality of life was carried out through the \u0026ldquo;On Your Own Feet\u0026ndash;Self-Efficacy Scale\u0026rdquo; (OYOF-SES) and SF-36\u0026reg;, respectively.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eWe found a drop-out rate from follow up of 28.6%, which is in line with the data in the literature, with significant variability among the individual endocrinological diseases. 82% of the subjects were satisfied with their experience at the Transition Clinic. There was a good capacity for self-management, with high scores obtained at OYOF-SES. The perceived quality of life is also overall good, except for mental health, which was lower than the reference healthy population.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eDespite the improvement in the drop-out rate and the results in terms of self-management and quality of life obtained by our Transition Clinic in Verona, constant analysis and implementation of individualized transition processes are necessary to ensure their optimum effectiveness, paying greater attention to the quality of mental health.\u003c/p\u003e","manuscriptTitle":"The transition process for adolescents with an endocrine pathology: quality of life, drop-out, and self-management skills","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-02-09 12:15:06","doi":"10.21203/rs.3.rs-8261248/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"reviewersInvited","content":"","date":"2026-02-04T07:30:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-12-12T00:14:52+00:00","index":"","fulltext":""},{"type":"submitted","content":"Italian Journal of Pediatrics","date":"2025-12-09T07:02:06+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"italian-journal-of-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"itjp","sideBox":"Learn more about [Italian Journal of Pediatrics](http://ijponline.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/ITJP/default.aspx","title":"Italian Journal of Pediatrics","twitterHandle":"@BioMedCentral","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"64241a89-270c-4d67-9852-b34a2f702580","owner":[],"postedDate":"February 9th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-02-09T12:15:06+00:00","versionOfRecord":[],"versionCreatedAt":"2026-02-09 12:15:06","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8261248","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8261248","identity":"rs-8261248","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}