Knowledge, Attitude and Acceptance regarding Bone marrow transplantation in caregivers of beta-thalassemia major patients

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Their knowledge, attitude and acceptance regarding bone marrow transplantation was assessed using a validated questionnaire. The study aimed to identify factors that influence care givers’ decision about bone marrow transplantation. Results The knowledge, attitude and acceptance of the caregivers towards bone marrow transplantation is shown to depend on gender, education and socio-economic status. The results of this study reveal that male caregivers generally exhibited higher levels of knowledge and had a better attitude towards it as compared to their female counterparts. Higher education and socio-economic status were associated with better knowledge, more favourable attitudes and a higher acceptance towards the procedure as well. Thalassemia Bone marrow transplantation Pediatric anemia Blood transfusion Introduction Thalassemia is an inherited blood disorders characterized by mutations in the DNA of Red blood cells resulting in reduced production of either the alpha or beta globin chains resulting in either alpha-thalassemia or beta-thalassemia respectively. Beta Thalassemia major patients are born with two defective beta hemoglobin genes and usually are healthy at birth but develop signs and symptoms within the first two years of life. The hemoglobin of these patients is abnormal therefore reducing its oxygen carrying capacity. The infant is asymptomatic during the first few months of life due to the presence of HbF. Anemia, repeated infections, failure to thrive and facial deformities are the common clinical features seen in children with thalassemia. [ 1 , 2 ] The worldwise prevalence of thalassemia is approximately 300,000. And the prevalence of β-thalassemia trait in Central India is around 1.4–3.4%, with 0.94% β-thalassemia major. South Indian states have a higher prevalence of β-thalassemia trait ranging from 8.50–37.90%, and that of β-thalassemia major ranging from 2.30–7.47%. [ 3 ] Possible complications of thalassemia are increased risk of infections, bone deformities, enlarged spleen, slowed growth rates, delayed puberty and congestive cardiac failure. Neurological complications of thalassemia have been attributed to various factors such as chronic hypoxia, bone marrow expansion, iron overload, and desferrioxamine neurotoxicity which may cause neurodegeneration and a decline in cognitive functioning.[ 4 ] Thalassemia major can be managed through a combination of treatments. Regular blood transfusions are essential to maintain adequate hemoglobin levels. The frequency of these can vary between 2–4 weeks. Iron chelation therapy, by removing excess iron, prevents iron overload from these frequent transfusions and protects vital organs. Bone marrow transplantation (BMT) offers as a potential cure by replacing defective marrow with healthy cells from a compatible donor, very often a family member. This enables normal blood cell production. Additionally, methods to stimulate fetal hemoglobin production and advanced gene therapy techniques are being explored to treat and potentially cure thalassemia major. [ 5 , 6 ] However, bone marrow transplantation is still not a widely used treatment for beta-Thalassemia major in India. This study aims to assess the knowledge, attitudes, and acceptance of bone marrow transplantation among caregivers of pediatric patients with beta-thalassemia major. Methods Study design and location: This cross-sectional study was conducted in the Department of Pediatrics, Vani Vilas Hospital Bangalore and Rashtrotthana Blood Centre, Bangalore. The study was done between July 2023- October 2023. Ethical approval was obtained from the Ethics Committee, Bangalore Medical College and Research Institute. [No: BMCRI/EC/05/23–24]. Questionnaire development: A structured questionnaire was developed to collect data for this study. To ensure its accuracy and reliability, the questionnaire underwent a validation process through a pilot study involving 25 participants. Relevance, Clarity and utility of the questions was collected and analysed. Necessary corrections were made after this analysis which helped to identify biases, and other issues. Through this meticulous process, the questionnaire was refined and validated. Written consent was taken from all the participants. The authors conducted interviews with the caregivers of the patients and recorded their responses using the questionnaire formatted in Google Forms. The questions could be answered as “yes”, “no” or “maybe”. The questionnaire consisted of four segments. The first segment(Table 1 )was based on the demographic status of the family, the education and socioeconomic status of the caregiver and the age and gender of the child. The second segment(Table 2 ) assessed the caregiver’s knowledge regarding bone marrow transplantation, including their sources of information, awareness of potential side effects and mortality rates, and additional information that is necessary for making well- informed decisions. Table 1 Demographics Demographics: Age of child Gender of child Thalassemia ID (as given by transfusion centre) Education of parent/guardian Socio-economic status of family (According to Modified Kuppuswamy classification) Table 2 Knowledge Knowledge: 1.Do you know about the treatments that are available for thalassemia? 2. Do you know about bone marrow transplantation? 3. How did you get to know about bone marrow transplantation? 4. Do you know about the side effects of bone marrow transplantation? 5. Do you know about any fatalities post bone marrow transplantation? 6. Do you know of a bone marrow transplantation donor? The third segment (Table 3 ) was based on the caregiver’s attitudes toward bone marrow transplantation. It examined their willingness to undergo the transplantation for their child, their readiness to be a donor, and whether the observed side effects and mortality rates influenced their decision-making process regarding the same procedure for their child. The last segment (Table 4 ) evaluated any prior history of transplantation and its success. It examined the caregiver’s acceptance of transplantation. It accounted for elements such as economic feasibility, fear of pain, concerns about failure or fatality, and the challenges of finding a suitable donor. Table 3 Attitude Attitude: 8. Are you willing to get a bone marrow transplantation for your child? 9. Are you willing to be a donor for your child? 10. Do the side effects seen post-transplant affect your decision? 11. Does the fatality rate post transplantation affect your decision? Table 4 Acceptance Acceptance: 12. Has your child received a bone marrow transplantation before? 13. If yes, has the transplantation in your child been successful? 14. Has any other family member received bone marrow transplantation? 15. Will the transplantation be economically feasible? 16. I refuse bone marrow transplantation for my child as it might be painful. 17. I refuse bone marrow transplantation for my child as I have not found a match yet. 18. I refuse bone marrow transplantation for my child due to fear of death. 19. I refuse bone marrow transplantation for my child due to fear of failure. Sample size: The sample size was calculated using \(\:n=\frac{{z}^{2}P\left(1-P\right)}{{d}^{2}}\) . n = Sample size Z = 1.98 (at 95% confidence interval) P = Prevalence of the disease d = Absolute error The sample size was calculated to be 500 Inclusion and exclusion criteria: Caregivers of beta-thalassemia major patients who gave informed consent were included in the study. Those who refused to give consent or caregivers of children with any other bleeding disorder were excluded from the study. Data collection: The data was collected by the two investigators. Caregivers of patients with beta-thalassemia major who came for regular transfusion of blood were interviewed after explaining the study to them and obtaining their consent. Responses to the questions were collected via the questionnaire formatted on Google forms. Those who did not meet inclusion criteria or refused to give informed consent were excluded from the study. Statistical analysis: The data was cleaned to investigate missing values and incorrect data entry. The statistical analyses that were performed included descriptive analysis and binary logistic regression analysis by using Statistical Product and Service Solution (SPSS) version 27. A simple logistic regression was initially performed to obtain the crude odds ratio (COR) of the predictors such as socio-economic status, knowledge, attitudes and acceptance regarding bone marrow transplantation. Those with p -values less than 0.05 were included in the multiple logistic regression analysis to calculate their adjusted odds ratio (AOR). The model’s fitness was evaluated by examining the interaction between the variables, the Hosmer and Lemeshow test, classification accuracy, and the area under the receiver operating characteristic curve (AUC). Results Among 500 participants (caregivers of patients with beta-thalassemia major) available for the study, 449 completed the questionnaire (response rate 89.9%). The predominant portion of participants were male (n = 269, 60.4%). Majority of whom had either a high school degree (32.4%) or Undergraduate degrees (33.9%). A little more than half the participants belonged to below the poverty line (45.6%). Knowledge: Table 5 illustrates the association between various demographic factors including gender, socio-economic status and education and knowledge levels. All the caregivers were familiar with bone marrow transplantation who were informed by their doctor. Most (98.42%) of the male caregivers had good knowledge. On the contrary only 24.77% of the female caregivers had good knowledge.72.63% of caregivers with undergraduate degrees and 12.63% of them with postgraduate degrees had good knowledge. More than three-fourths of the caregivers above the poverty line had good knowledge but only 13.16% of those from below the poverty line had good knowledge. The doctor served as the primary source of information for all the caregivers regarding BMT as a treatment option. Of the caregivers, 70.9% were aware about the potential side effects the possibility of fatality associated with BMT. Furthermore, 34% knew of donors that cross matched the patient. Table 5 Association between Knowledge and Demographics Knowledge Poor knowledge Moderate knowledge Good knowledge chi p Gender Male 0 82 187 347.692 < 0.05 Female 146 27 3 Education Illiterate 95 3 0 536.639 < 0.05 Primary 27 1 0 High School 24 92 28 Undergraduate 0 13 138 Postgraduate 0 0 24 Poverty Line Above Poverty Line 0 38 165 257.71 < 0.05 Below Poverty Line 146 71 25 Attitude: The results in Table 6 show the association between attitude levels and various demographic factors. A great attitude signifies that the parents are willing to get a bone marrow transplantation for their child and even be donors if favourable circumstances arise. And a poor attitude means that the parents are not willing to go ahead with the procedure due to various reasons. Among male parents, 80.92% had a good attitude while only 19.08% females had a good attitude, and none exhibited a great attitude level. 65.08% of caregivers with no formal education reported a poor attitude. Contrarily, 42.11% of Postgraduates showed a great attitude. No caregiver above the poverty line reported a poor attitude. 55.73% had a good attitude and the rest had a great attitude. However, only 44.27% of caregivers below the poverty line reported a good attitude. The willingness to undergo organ transplantation is influenced by multiple factors. Only 41.64% were willing to get a transplantation done for their children. This suggests an apprehension among the caregivers towards BMT. Additionally, 41% of the caregivers mentioned that the side effects and fatalities seen post transplantation effected their decision, causing them to opt against the procedure. Table 6 Association between Attitude and Demographics Attitude Poor Good Great chi p Gender Male 0 212 57 275.777 < 0.05 Female 126 50 0 Education Illiterate 82 16 0 491.39 < 0.05 Primary 27 1 0 High School 17 127 0 Undergraduate 0 118 33 Postgraduate 0 0 24 Poverty Line Above Poverty Line 0 146 57 184.434 < 0.05 Below Poverty Line 126 116 0 Acceptance: The results in Table 7 depict the association between acceptance levels and the various demographic factors. Among males 2.59% had low acceptance, 73.97% had moderate acceptance. Majority of females, that is 97.41% had low acceptance and 26.03% had moderate acceptance, and none had high acceptance. Among illiterate individuals nobody had high acceptance. In those with primary education 11.21% had low acceptance, 6.2% had moderate acceptance. Majority of High school graduates had a moderate acceptance. 71.26% of undergraduates and postgraduates had high acceptance. 85.06% of caregivers above the poverty line had high acceptance. However, for those below the poverty line only 14.94% had high acceptance. The side effects and fatalities seen post transplantation influenced the decision of 67% of caregivers. In 65.4% of the caregivers, the primary reasons for the poor acceptance were fear of failure, fear of fatality and the pain associated with the procedure. Furthermore, 67.4% caregivers had not found a match yet for the patient and the procedure was not economically feasible for 59.6% of the caregivers. Table 7 Association between Acceptance and Demographics Acceptance Low Moderate High chi p Gender Male 3 179 87 237.867 < 0.05 Female 113 63 0 Education Illiterate 66 32 0 190.01 < 0.05 Primary 13 15 0 High School 37 88 19 Undergraduate 0 89 62 Postgraduate 0 18 6 Poverty Line Above Poverty Line 0 129 74 157.621 < 0.05 Below Poverty Line 116 113 13 The chi-square values in this study indicate a highly significant association between the Knowledge, attitude and acceptance with various parameters such as gender, education and socio-economic status of the caregiver Discussion Thalassemia can be managed by a number of treatment modalities. Blood transfusion, iron chelation therapy, bone marrow and gene therapy are a few of them. After confirmation of diagnosis, patients of thalassemia begin regular blood transfusions as early as possible to reduces the risk of anemia, splenomegaly and other related complications such as recurrent infections and failure to thrive. These patients receive leukoreduced packed red blood cells with a minimum hemoglobin content of 40g. Reducing the number of leukocytes to 1* 10 6 or less per unit is recommended to eliminate the risks of post transfusion adverse reactions such as transfusion associated acute lung injury (TRALI). [7-10] The patients must be transfusion with ABO and Rh compatible blood. It is recommended that the blood is also cross matched for Kell, C and E antigens before transfusion. A full cross match screen must be performed before each transfusion to screen for new antibodies. [11] Chronic blood transfusion could lead to iron overload which can be prevented using iron chelators such as desferrioxamine and deferiprone which are given orally in doses of 75-100 mg/kg/day in two-three divided doses. Vitamin C given with this helps in the conversion of iron into the ferritin form which makes the chelation process easier. [12-14] Bone marrow transplantation is the only definitive therapy for beta thalassemia major at the moment. Based on early clinical trials by Giardini et al. on children <16 years, 3 classes have been identified in patients based on the following criteria: (a) hepatomegaly, (b) liver fibrosis and (c) quality of chelation given before transplantation. Patients with none of these criteria were assigned to class 1; those with one or two were in class 2 and those with all the three criteria were in class 3. The probability of survival in class 1, 2 and 3 are 95%, 86% and 63% respectively. The survival rate among those >16 years was shown to be 78%. [15,16] Another study by Gaziev et al. updates the transplant outcomes for Group-A: 107 patients with a median age of 22 years (range, 17-35 years), who underwent bone marrow transplantation (BMT) from human leukocyte antigen (HLA)-identical related donors. It also reports the results for Group B:15 adult patients, median age 21 years (range, 17-31 years), treated with a new protocol (Protocol 26). For group A, the overall survival rate was 66% and 4% rejection, with a median follow-up of 12 years (range, 8.3-16.2 years). Group B saw improvements with a thalassemia-free survival rate of 67% and a reduced transplant-related mortality rate of 27% compared to previous protocols.[17] Baronciani et al in their study on 1493 patients between 2000 to 2010 demonstrated that the best outcomes were observed in patients receiving transplants from human leukocyte antigen-identical siblings, with overall survival (OS) and event-free survival (EFS) rates of 91±1% and 83±1%, respectively. Survival rates showed no significant differences between countries. Optimal transplant outcomes were seen in patients under the age of 14, with OS rates between 90-96% and EFS rates between 83-93%.[18] A HLA matched donor is required for bone marrow transplantation. Busulfan with cyclophosphamide prior to the transplantation has shown to improve clinical outcome by acting as myeloablative agents. [19] Allogenic transplantation has been disappointing in patients older than 16 years. Graft versus host disease, infection, and recurrent thalassemia were the causes of these poor success rates in these patients. However newer clinical trials and protocols which classifies the patients based on risk factors and then appropriately allots treatment has shown better success rates in these patients. [20-23] Researchers are exploring newer gene therapy techniques that inhibit the BCL11A gene. Additionally, an erythroid specific approach to knock down the BCL11A gene using microRNA-adapted short hair pin molecule to reactivate the gamma globin gene is in the early stages of clinical development. However, the two major obstacles to gene therapy are the careful collection of adequate numbers of CD34+ hematopoietic cells and their therapeutic transduction. [24-26] Conclusion This study has demonstrated that despite the extensive availability of information, a large section of the caregivers have poor knowledge about bone marrow transplantation. This is more prevalent among the female caretakers, those with lower educational qualification and belonging to lower socioeconomic statuses. The side effects and fatalities seen post transplantation contribute to the reluctance among the caregivers. Economic difficulties and inability to find a suitable match are other note-worthy barriers. Therefore, we recommend that an appropriate counselling and support system should be installed in transfusion centres, which will help in providing accurate information about the procedure and guiding the caregivers through this process. Declarations Author’s contribution: Conceptualization: Purva Reddy Jayaram Data collection: Purva Reddy Jayaram and Paridhi Jain Writing - original draft: Purva Reddy Jayaram. Writing - review & editing: Purva Reddy Jayaram, Dr. Sahana Devadas, Paridhi Jain, Dr. Gayathri Devi. Compliance with Ethics Guidelines: Ethical clearance was obtained. Approved by IEC- BMCRI- No: BMCRI/EC.05/23-24 Conflic of Interest: Purva Reddy Jayaram, Dr. Sahana Devadas, Paridhi Jain, Dr. Gayathri Devi declare that they have no conflict of interest. Funding Declaration: There is no funding. Competing interests: None References Vento S, Cainelli F, Cesario F. Infections and thalassaemia. The Lancet Infectious Diseases . 2006;6(4):226-233. doi:https://doi.org/10.1016/s1473-3099(06)70437-6 Zafeiriou DI, Economou M, Athanasiou-Metaxa M. Neurological complications in β-thalassemia. Brain and Development . 2006;28(8):477-481. doi:https://doi.org/10.1016/j.braindev.2006.02.005 Yadav SS, Panchal P, Menon KC. Prevalence and Management of β-Thalassemia in India. Hemoglobin . Published online February 7, 2022:1-6. doi:https://doi.org/10.1080/03630269.2021.2001346 Mayo Clinic. 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Exagamglogene Autotemcel: First Approval. Mol Diagn Ther . 2024;28(2):133-139. doi:10.1007/s40291-024-00696-z Wang J, Lu BM, Li R, et al. Karyomapping in preimplantation genetic testing for β-thalassemia combined with HLA matching: a systematic summary. J Assist Reprod Genet . 2019;36(12):2515-2523. doi:10.1007/s10815-019-01595-7 Motta I, Bou-Fakhredin R, Taher AT, Cappellini MD. Beta Thalassemia: New Therapeutic Options Beyond Transfusion and Iron Chelation. Drugs . 2020;80(11):1053-1063. doi:10.1007/s40265-020-01341-9 Brendel C, Negre O, Rothe M, et al. Preclinical Evaluation of a Novel Lentiviral Vector Driving Lineage-Specific BCL11A Knockdown for Sickle Cell Gene Therapy. Mol Ther Methods Clin Dev . 2020;17:589-600. Published 2020 Mar 17. doi:10.1016/j.omtm.2020.03.015 Badawy SM, Beg U, Liem RI, Chaudhury S, Thompson AA. A systematic review of quality of life in sickle cell disease and thalassemia after stem cell transplant or gene therapy. Blood Adv . 2021;5(2):570-583. doi:10.1182/bloodadvances.2020002948 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 11 Oct, 2024 Read the published version in Journal of Community Genetics → Version 1 posted Editorial decision: Revision requested 18 Sep, 2024 Reviews received at journal 18 Sep, 2024 Reviews received at journal 14 Sep, 2024 Reviewers agreed at journal 13 Sep, 2024 Reviewers agreed at journal 06 Sep, 2024 Reviewers invited by journal 06 Sep, 2024 Editor assigned by journal 05 Sep, 2024 Submission checks completed at journal 05 Sep, 2024 First submitted to journal 02 Sep, 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-5020338","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":355925698,"identity":"bd713a7c-4d65-45f7-8c6d-b9fddbd887af","order_by":0,"name":"Purva Reddy Jayaram","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA50lEQVRIiWNgGAWjYBAC+wYwJSHHxt6Q+ADI4uEjpMXgAJiyMObnOfDYAKSFjUgtFYkzZyQ+kwAxCWu5kftM4geDhLHBmcNplV9z7GTYGJgfPrqBR4v9jHQzyR6gXwyOt6Xdlt2WDHQYm7FxDj5bJNKYDXjAtpxJuy25jRmohYdNmpAWwz8MEokbbuR/K5bcVk+UFsbHQFuA3k9IY/y47TARWnieMT6WMZAABXKyNOO24zxszIT8wp7GcPBNRR04Kj/+3FZtz8/e/PAxPi1QjRCKmQdMElSOBBh/kKJ6FIyCUTAKRgwAAEebQxX70ML7AAAAAElFTkSuQmCC","orcid":"","institution":"Bangalore Medical College and Research Institute","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Purva","middleName":"Reddy","lastName":"Jayaram","suffix":""},{"id":355925699,"identity":"181926a9-f0b1-416f-8dde-b4daa1752bac","order_by":1,"name":"Sahana Devadas","email":"","orcid":"","institution":"Vani Vilas Hospital","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Sahana","middleName":"","lastName":"Devadas","suffix":""},{"id":355925700,"identity":"9013484f-4a42-4bb3-ba96-9a8cd3dd109f","order_by":2,"name":"Paridhi Jain","email":"","orcid":"","institution":"Bangalore Medical College and Research Institute","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Paridhi","middleName":"","lastName":"Jain","suffix":""},{"id":355925701,"identity":"390ddd22-148a-45ee-9331-518e29c89096","order_by":3,"name":"Gayathri Devi C","email":"","orcid":"","institution":"Vani Vilas Hospital","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Gayathri","middleName":"Devi","lastName":"C","suffix":""}],"badges":[],"createdAt":"2024-09-02 19:02:43","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5020338/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5020338/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s12687-024-00739-2","type":"published","date":"2024-10-11T15:57:18+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":66597548,"identity":"1f11cf34-3890-44d6-9f98-e62fba674d0b","added_by":"auto","created_at":"2024-10-14 16:10:59","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":496503,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5020338/v1/437c429d-9bd6-45db-b0c2-cefae65fda2e.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Knowledge, Attitude and Acceptance regarding Bone marrow transplantation in caregivers of beta-thalassemia major patients","fulltext":[{"header":"Introduction","content":"\u003cp\u003eThalassemia is an inherited blood disorders characterized by mutations in the DNA of Red blood cells resulting in reduced production of either the alpha or beta globin chains resulting in either alpha-thalassemia or beta-thalassemia respectively. Beta Thalassemia major patients are born with two defective beta hemoglobin genes and usually are healthy at birth but develop signs and symptoms within the first two years of life. The hemoglobin of these patients is abnormal therefore reducing its oxygen carrying capacity.\u003c/p\u003e \u003cp\u003eThe infant is asymptomatic during the first few months of life due to the presence of HbF. Anemia, repeated infections, failure to thrive and facial deformities are the common clinical features seen in children with thalassemia. [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThe worldwise prevalence of thalassemia is approximately 300,000. And the prevalence of β-thalassemia trait in Central India is around 1.4\u0026ndash;3.4%, with 0.94% β-thalassemia major. South Indian states have a higher prevalence of β-thalassemia trait ranging from 8.50\u0026ndash;37.90%, and that of β-thalassemia major ranging from 2.30\u0026ndash;7.47%. [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]\u003c/p\u003e \u003cp\u003ePossible complications of thalassemia are increased risk of infections, bone deformities, enlarged spleen, slowed growth rates, delayed puberty and congestive cardiac failure. Neurological complications of thalassemia have been attributed to various factors such as chronic hypoxia, bone marrow expansion, iron overload, and desferrioxamine neurotoxicity which may cause neurodegeneration and a decline in cognitive functioning.[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThalassemia major can be managed through a combination of treatments. Regular blood transfusions are essential to maintain adequate hemoglobin levels. The frequency of these can vary between 2\u0026ndash;4 weeks. Iron chelation therapy, by removing excess iron, prevents iron overload from these frequent transfusions and protects vital organs. Bone marrow transplantation (BMT) offers as a potential cure by replacing defective marrow with healthy cells from a compatible donor, very often a family member. This enables normal blood cell production. Additionally, methods to stimulate fetal hemoglobin production and advanced gene therapy techniques are being explored to treat and potentially cure thalassemia major. [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eHowever, bone marrow transplantation is still not a widely used treatment for beta-Thalassemia major in India. This study aims to assess the knowledge, attitudes, and acceptance of bone marrow transplantation among caregivers of pediatric patients with beta-thalassemia major.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and location:\u003c/h2\u003e \u003cp\u003eThis cross-sectional study was conducted in the Department of Pediatrics, Vani Vilas Hospital Bangalore and Rashtrotthana Blood Centre, Bangalore. The study was done between July 2023- October 2023. Ethical approval was obtained from the Ethics Committee, Bangalore Medical College and Research Institute. [No: BMCRI/EC/05/23\u0026ndash;24].\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eQuestionnaire development:\u003c/h3\u003e\n\u003cp\u003eA structured questionnaire was developed to collect data for this study. To ensure its accuracy and reliability, the questionnaire underwent a validation process through a pilot study involving 25 participants. Relevance, Clarity and utility of the questions was collected and analysed. Necessary corrections were made after this analysis which helped to identify biases, and other issues. Through this meticulous process, the questionnaire was refined and validated. Written consent was taken from all the participants. The authors conducted interviews with the caregivers of the patients and recorded their responses using the questionnaire formatted in Google Forms. The questions could be answered as \u0026ldquo;yes\u0026rdquo;, \u0026ldquo;no\u0026rdquo; or \u0026ldquo;maybe\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe questionnaire consisted of four segments. The first segment(Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e)was based on the demographic status of the family, the education and socioeconomic status of the caregiver and the age and gender of the child. The second segment(Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e) assessed the caregiver\u0026rsquo;s knowledge regarding bone marrow transplantation, including their sources of information, awareness of potential side effects and mortality rates, and additional information that is necessary for making well- informed decisions.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDemographics:\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge of child\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender of child\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThalassemia ID (as given by transfusion centre)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEducation of parent/guardian\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocio-economic status of family (According to Modified Kuppuswamy classification)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eKnowledge\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eKnowledge:\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1.Do you know about the treatments that are available for thalassemia?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2. Do you know about bone marrow transplantation?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3. How did you get to know about bone marrow transplantation?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4. Do you know about the side effects of bone marrow transplantation?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5. Do you know about any fatalities post bone marrow transplantation?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6. Do you know of a bone marrow transplantation donor?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe third segment (Table \u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e) was based on the caregiver\u0026rsquo;s attitudes toward bone marrow transplantation. It examined their willingness to undergo the transplantation for their child, their readiness to be a donor, and whether the observed side effects and mortality rates influenced their decision-making process regarding the same procedure for their child. The last segment (Table \u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e) evaluated any prior history of transplantation and its success. It examined the caregiver\u0026rsquo;s acceptance of transplantation. It accounted for elements such as economic feasibility, fear of pain, concerns about failure or fatality, and the challenges of finding a suitable donor.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAttitude\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAttitude:\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8. Are you willing to get a bone marrow transplantation for your child?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e9. Are you willing to be a donor for your child?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e10. Do the side effects seen post-transplant affect your decision?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11. Does the fatality rate post transplantation affect your decision?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAcceptance\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAcceptance:\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e12. Has your child received a bone marrow transplantation before?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e13. If yes, has the transplantation in your child been successful?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e14. Has any other family member received bone marrow transplantation?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e15. Will the transplantation be economically feasible?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e16. I refuse bone marrow transplantation for my child as it might be painful.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e17. I refuse bone marrow transplantation for my child as I have not found a match yet.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18. I refuse bone marrow transplantation for my child due to fear of death.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e19. I refuse bone marrow transplantation for my child\u0026nbsp;due to fear of failure.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eSample size:\u003c/h3\u003e\n\u003cp\u003eThe sample size was calculated using \u003cspan class=\"InlineEquation\"\u003e\u003cspan class=\"mathinline\"\u003e\\(\\:n=\\frac{{z}^{2}P\\left(1-P\\right)}{{d}^{2}}\\)\u003c/span\u003e\u003c/span\u003e.\u003c/p\u003e \u003cp\u003en\u0026thinsp;=\u0026thinsp;Sample size\u003c/p\u003e \u003cp\u003eZ\u0026thinsp;=\u0026thinsp;1.98 (at 95% confidence interval)\u003c/p\u003e \u003cp\u003eP\u0026thinsp;=\u0026thinsp;Prevalence of the disease\u003c/p\u003e \u003cp\u003ed\u0026thinsp;=\u0026thinsp;Absolute error\u003c/p\u003e \u003cp\u003eThe sample size was calculated to be 500\u003c/p\u003e\n\u003ch3\u003eInclusion and exclusion criteria:\u003c/h3\u003e\n\u003cp\u003eCaregivers of beta-thalassemia major patients who gave informed consent were included in the study. Those who refused to give consent or caregivers of children with any other bleeding disorder were excluded from the study.\u003c/p\u003e\n\u003ch3\u003eData collection:\u003c/h3\u003e\n\u003cp\u003eThe data was collected by the two investigators. Caregivers of patients with beta-thalassemia major who came for regular transfusion of blood were interviewed after explaining the study to them and obtaining their consent. Responses to the questions were collected via the questionnaire formatted on Google forms. Those who did not meet inclusion criteria or refused to give informed consent were excluded from the study.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis:\u003c/h2\u003e \u003cp\u003eThe data was cleaned to investigate missing values and incorrect data entry. The statistical analyses that were performed included descriptive analysis and binary logistic regression analysis by using Statistical Product and Service Solution (SPSS) version 27. A simple logistic regression was initially performed to obtain the crude odds ratio (COR) of the predictors such as socio-economic status, knowledge, attitudes and acceptance regarding bone marrow transplantation. Those with \u003cem\u003ep\u003c/em\u003e-values less than 0.05 were included in the multiple logistic regression analysis to calculate their adjusted odds ratio (AOR). The model\u0026rsquo;s fitness was evaluated by examining the interaction between the variables, the Hosmer and Lemeshow test, classification accuracy, and the area under the receiver operating characteristic curve (AUC).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eAmong 500 participants (caregivers of patients with beta-thalassemia major) available for the study, 449 completed the questionnaire (response rate 89.9%). The predominant portion of participants were male (n\u0026thinsp;=\u0026thinsp;269, 60.4%).\u003c/p\u003e \u003cp\u003eMajority of whom had either a high school degree (32.4%) or Undergraduate degrees (33.9%). A little more than half the participants belonged to below the poverty line (45.6%).\u003c/p\u003e\n\u003ch3\u003eKnowledge:\u003c/h3\u003e\n\u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e illustrates the association between various demographic factors including gender, socio-economic status and education and knowledge levels. All the caregivers were familiar with bone marrow transplantation who were informed by their doctor.\u003c/p\u003e \u003cp\u003eMost (98.42%) of the male caregivers had good knowledge. On the contrary only 24.77% of the female caregivers had good knowledge.72.63% of caregivers with undergraduate degrees and 12.63% of them with postgraduate degrees had good knowledge. More than three-fourths of the caregivers above the poverty line had good knowledge but only 13.16% of those from below the poverty line had good knowledge.\u003c/p\u003e \u003cp\u003eThe doctor served as the primary source of information for all the caregivers regarding BMT as a treatment option. Of the caregivers, 70.9% were aware about the potential side effects the possibility of fatality associated with BMT. Furthermore, 34% knew of donors that cross matched the patient.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAssociation between Knowledge and Demographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eKnowledge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePoor knowledge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eModerate knowledge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eGood knowledge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003echi\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003ep\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e82\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e187\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e347.692\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e146\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIlliterate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e95\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e536.639\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrimary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHigh School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e92\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUndergraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e138\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePostgraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003ePoverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAbove Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e165\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e257.71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBelow Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e146\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e71\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e25\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eAttitude:\u003c/h2\u003e \u003cp\u003eThe results in Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e show the association between attitude levels and various demographic factors. A great attitude signifies that the parents are willing to get a bone marrow transplantation for their child and even be donors if favourable circumstances arise. And a poor attitude means that the parents are not willing to go ahead with the procedure due to various reasons. Among male parents, 80.92% had a good attitude while only 19.08% females had a good attitude, and none exhibited a great attitude level.\u003c/p\u003e \u003cp\u003e65.08% of caregivers with no formal education reported a poor attitude. Contrarily, 42.11% of Postgraduates showed a great attitude. No caregiver above the poverty line reported a poor attitude. 55.73% had a good attitude and the rest had a great attitude. However, only 44.27% of caregivers below the poverty line reported a good attitude.\u003c/p\u003e \u003cp\u003eThe willingness to undergo organ transplantation is influenced by multiple factors. Only 41.64% were willing to get a transplantation done for their children. This suggests an apprehension among the caregivers towards BMT. Additionally, 41% of the caregivers mentioned that the side effects and fatalities seen post transplantation effected their decision, causing them to opt against the procedure.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAssociation between Attitude and Demographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eAttitude\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePoor\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eGood\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eGreat\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003echi\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003ep\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e212\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e275.777\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e126\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIlliterate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e82\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e491.39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrimary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHigh School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e127\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUndergraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e118\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePostgraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003ePoverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAbove Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e146\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e57\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e184.434\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBelow Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e126\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e116\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAcceptance:\u003c/h2\u003e \u003cp\u003eThe results in Table\u0026nbsp;\u003cspan refid=\"Tab7\" class=\"InternalRef\"\u003e7\u003c/span\u003e depict the association between acceptance levels and the various demographic factors. Among males 2.59% had low acceptance, 73.97% had moderate acceptance. Majority of females, that is 97.41% had low acceptance and 26.03% had moderate acceptance, and none had high acceptance.\u003c/p\u003e \u003cp\u003eAmong illiterate individuals nobody had high acceptance. In those with primary education 11.21% had low acceptance, 6.2% had moderate acceptance. Majority of High school graduates had a moderate acceptance. 71.26% of undergraduates and postgraduates had high acceptance. 85.06% of caregivers above the poverty line had high acceptance. However, for those below the poverty line only 14.94% had high acceptance.\u003c/p\u003e \u003cp\u003eThe side effects and fatalities seen post transplantation influenced the decision of 67% of caregivers. In 65.4% of the caregivers, the primary reasons for the poor acceptance were fear of failure, fear of fatality and the pain associated with the procedure. Furthermore, 67.4% caregivers had not found a match yet for the patient and the procedure was not economically feasible for 59.6% of the caregivers.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab7\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 7\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eAssociation between Acceptance and Demographics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eAcceptance\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eLow\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eModerate\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eHigh\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003echi\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003ep\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e179\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e87\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e237.867\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e113\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e63\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIlliterate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e66\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e190.01\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrimary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHigh School\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e37\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e88\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUndergraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e89\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e62\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePostgraduate\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003ePoverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAbove Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e129\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c6\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e157.621\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c7\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;0.05\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBelow Poverty Line\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e116\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e113\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe chi-square values in this study indicate a highly significant association between the Knowledge, attitude and acceptance with various parameters such as gender, education and socio-economic status of the caregiver\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThalassemia can be managed by a number of treatment modalities. Blood transfusion, iron chelation therapy, bone marrow and gene therapy are a few of them.\u003c/p\u003e\n\u003cp\u003eAfter confirmation of diagnosis, patients of thalassemia begin regular blood transfusions as early as possible to reduces the risk of anemia, splenomegaly and other related complications such as recurrent infections and failure to thrive. These patients receive leukoreduced packed red blood cells with a minimum hemoglobin content of 40g. Reducing the number of leukocytes to 1* 10\u003csup\u003e6\u003c/sup\u003e or less per unit is recommended to eliminate the risks of post transfusion adverse reactions such as transfusion associated acute lung injury (TRALI). [7-10]\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;The patients must be transfusion with ABO and Rh compatible blood. It is recommended that the blood is also cross matched for Kell, C and E antigens before transfusion. A full cross match screen must be performed before each transfusion to screen for new antibodies. [11] Chronic blood transfusion could lead to iron overload which can be prevented using iron chelators such as desferrioxamine and deferiprone which are given orally in doses of 75-100 mg/kg/day in two-three divided doses. Vitamin C given with this helps in the conversion of iron into the ferritin form which makes the chelation process easier. [12-14]\u003c/p\u003e\n\u003cp\u003eBone marrow transplantation is the only definitive therapy for beta thalassemia major at the moment. Based on early clinical trials by Giardini et al. on children \u0026lt;16 years, 3 classes have been identified in patients based on the following criteria: (a) hepatomegaly, (b) liver fibrosis and (c) quality of chelation given before transplantation. Patients with none of these criteria were assigned to class 1; those with one or two were in class 2 and those with all the three criteria were in class 3. The probability of survival in class 1, 2 and 3 are 95%, 86% and 63% respectively. The survival rate among those \u0026gt;16 years was shown to be 78%. [15,16]\u003c/p\u003e\n\u003cp\u003eAnother study by Gaziev et al. updates the transplant outcomes for Group-A: 107 patients with a median age of 22 years (range, 17-35 years), who underwent bone marrow transplantation (BMT) from human leukocyte antigen (HLA)-identical related donors. It also reports the results for Group B:15 adult patients, median age 21 years (range, 17-31 years), treated with a new protocol (Protocol 26). For group A, the overall survival rate was 66% and 4% rejection, with a median follow-up of 12 years (range, 8.3-16.2 years). Group B saw improvements with a thalassemia-free survival rate of 67% and a reduced transplant-related mortality rate of 27% compared to previous protocols.[17]\u003c/p\u003e\n\u003cp\u003eBaronciani et al in their study on 1493 patients between 2000 to 2010 demonstrated that the best outcomes were observed in patients receiving transplants from human leukocyte antigen-identical siblings, with overall survival (OS) and event-free survival (EFS) rates of 91\u0026plusmn;1% and 83\u0026plusmn;1%, respectively. Survival rates showed no significant differences between countries. Optimal transplant outcomes were seen in patients under the age of 14, with OS rates between 90-96% and EFS rates between 83-93%.[18]\u003c/p\u003e\n\u003cp\u003eA HLA matched donor is required for bone marrow transplantation. Busulfan with cyclophosphamide prior to the transplantation has shown to improve clinical outcome by acting as myeloablative agents. \u0026nbsp; [19] Allogenic transplantation has been disappointing in patients older than 16 years. Graft versus host disease, infection, and recurrent thalassemia were the causes of these poor success rates in these patients. However newer clinical trials and protocols which classifies the patients based on risk factors and then appropriately allots treatment has shown better success rates in these patients. [20-23]\u003c/p\u003e\n\u003cp\u003eResearchers are exploring newer gene therapy techniques that inhibit the BCL11A gene. Additionally, an erythroid specific approach to knock down the BCL11A gene using microRNA-adapted short hair pin molecule to reactivate the gamma globin gene is in the early stages of clinical development. However, the two major obstacles to gene therapy are the careful collection of adequate numbers of CD34+ hematopoietic cells and their therapeutic transduction. [24-26]\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study has demonstrated that despite the extensive availability of information, a large section of the caregivers have poor knowledge about bone marrow transplantation. This is more prevalent among the female caretakers, those with lower educational qualification and belonging to lower socioeconomic statuses. The side effects and fatalities seen post transplantation contribute to the reluctance among the caregivers. Economic difficulties and inability to find a suitable match are other note-worthy barriers. Therefore, we recommend that an appropriate counselling and support system should be installed in transfusion centres, which will help in providing accurate information about the procedure and guiding the caregivers through this process.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAuthor\u0026rsquo;s contribution:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConceptualization: Purva Reddy Jayaram\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eData collection: Purva Reddy Jayaram and Paridhi Jain\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWriting - original draft: Purva Reddy Jayaram.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWriting - review \u0026amp; editing: Purva Reddy Jayaram, Dr. Sahana Devadas, Paridhi Jain, Dr. Gayathri Devi.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompliance with Ethics Guidelines:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical clearance was obtained.\u003c/p\u003e\n\u003cp\u003eApproved by IEC- BMCRI- No: BMCRI/EC.05/23-24\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflic of Interest:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003ePurva Reddy Jayaram, Dr. Sahana Devadas, Paridhi Jain, Dr. Gayathri Devi declare that they have no conflict of interest.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding Declaration:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere is no funding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u003c/strong\u003e None\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eVento S, Cainelli F, Cesario F. Infections and thalassaemia. \u003cem\u003eThe Lancet Infectious Diseases\u003c/em\u003e. 2006;6(4):226-233. doi:https://doi.org/10.1016/s1473-3099(06)70437-6\u003c/li\u003e\n \u003cli\u003eZafeiriou DI, Economou M, Athanasiou-Metaxa M. Neurological complications in \u0026beta;-thalassemia. \u003cem\u003eBrain and Development\u003c/em\u003e. 2006;28(8):477-481. doi:https://doi.org/10.1016/j.braindev.2006.02.005\u003c/li\u003e\n \u003cli\u003eYadav SS, Panchal P, Menon KC. Prevalence and Management of \u0026beta;-Thalassemia in India. \u003cem\u003eHemoglobin\u003c/em\u003e. Published online February 7, 2022:1-6. doi:https://doi.org/10.1080/03630269.2021.2001346\u003c/li\u003e\n \u003cli\u003eMayo Clinic. Thalassemia - Symptoms and causes. Mayo Clinic. Published November 17, 2021. https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995\u003c/li\u003e\n \u003cli\u003eAli S, Mumtaz S, Shakir HA, et al. Current status of beta‐thalassemia and its treatment strategies. \u003cem\u003eMolecular Genetics \u0026amp; Genomic Medicine\u003c/em\u003e. 2021;9(12). doi:https://doi.org/10.1002/mgg3.1788\u003c/li\u003e\n \u003cli\u003eAgarwal RK, Dhanya R, Sedai A, et al. Bone Marrow Quality Index: A Predictor of Acute Graft-versus-Host Disease in Hematopoietic Stem Cell Transplantation for Thalassemia. \u003cem\u003eTransplantation and Cellular Therapy\u003c/em\u003e. 2023;29(11):711.e1-711.e6. doi:https://doi.org/10.1016/j.jtct.2023.07.014\u003c/li\u003e\n \u003cli\u003eAnurogo D, Yuli Prasetyo Budi N, Thi Ngo MH, Huang YH, Pawitan JA. Cell and Gene Therapy for Anemia: Hematopoietic Stem Cells and Gene Editing. \u003cem\u003eInt J Mol Sci\u003c/em\u003e. 2021;22(12):6275. Published 2021 Jun 10. doi:10.3390/ijms22126275\u003c/li\u003e\n \u003cli\u003eSemple JW, Rebetz J, Kapur R. 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Clinical Challenges with Iron Chelation in Beta Thalassemia. \u003cem\u003eHematol Oncol Clin North Am\u003c/em\u003e. 2023;37(2):379-391. doi:10.1016/j.hoc.2022.12.013\u003c/li\u003e\n \u003cli\u003eCrisponi G, Nurchi VM, Lachowicz JI. Iron Chelation for Iron Overload in Thalassemia. \u003cem\u003eMet Ions Life Sci\u003c/em\u003e. 2019;19:/books/9783110527872/9783110527872-009/9783110527872-009.xml. doi:10.1515/9783110527872-009\u003c/li\u003e\n \u003cli\u003eDarvishi Khezri H, Emami Zeydi A, Sharifi H, Jalali H. Is Vitamin C Supplementation in Patients with \u0026beta;-Thalassemia Major Beneficial or Detrimental?. \u003cem\u003eHemoglobin\u003c/em\u003e. 2016;40(4):293-294. doi:10.1080/03630269.2016.1190373\u003c/li\u003e\n \u003cli\u003eCao A, Galanello R. Beta-thalassemia. \u003cem\u003eGenet Med\u003c/em\u003e. 2010;12(2):61-76. doi:10.1097/GIM.0b013e3181cd68ed\u003c/li\u003e\n \u003cli\u003eGiardini C, Galimberti M, Lucarelli G. Bone marrow transplantation in thalassemia. \u003cem\u003eAnnu Rev Med\u003c/em\u003e. 1995;46:319-330. doi:10.1146/annurev.med.46.1.319\u003c/li\u003e\n \u003cli\u003eGaziev J, Sodani P, Polchi P, Andreani M, Lucarelli G. Bone marrow transplantation in adults with thalassemia: Treatment and long-term follow-up. \u003cem\u003eAnn N Y Acad Sci\u003c/em\u003e. 2005;1054:196-205. doi:10.1196/annals.1345.024\u003c/li\u003e\n \u003cli\u003eBaronciani D, Angelucci E, Potschger U, et al. Hemopoietic stem cell transplantation in thalassemia: a report from the European Society for Blood and Bone Marrow Transplantation Hemoglobinopathy Registry, 2000-2010. \u003cem\u003eBone Marrow Transplant\u003c/em\u003e. 2016;51(4):536-541. doi:10.1038/bmt.2015.293\u003c/li\u003e\n \u003cli\u003eXian Y, Xie Y, Song B, et al. The safety and effectiveness of genetically corrected iPSCs derived from \u0026beta;-thalassaemia patients in nonmyeloablative \u0026beta;-thalassaemic mice. \u003cem\u003eStem Cell Res Ther\u003c/em\u003e. 2020;11(1):288. Published 2020 Jul 16. doi:10.1186/s13287-020-01765-w\u003c/li\u003e\n \u003cli\u003eAnurathapan U, Hongeng S, Pakakasama S, et al. Hematopoietic Stem Cell Transplantation for Severe Thalassemia Patients from Haploidentical Donors Using a Novel Conditioning Regimen. \u003cem\u003eBiol Blood Marrow Transplant\u003c/em\u003e. 2020;26(6):1106-1112. doi:10.1016/j.bbmt.2020.01.002\u003c/li\u003e\n \u003cli\u003eZeng S, Lei S, Qu C, Wang Y, Teng S, Huang P. CRISPR/Cas-based gene editing in therapeutic strategies for beta-thalassemia. \u003cem\u003eHum Genet\u003c/em\u003e. 2023;142(12):1677-1703. doi:10.1007/s00439-023-02610-9\u003c/li\u003e\n \u003cli\u003eHoy SM. 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Published 2020 Mar 17. doi:10.1016/j.omtm.2020.03.015\u003c/li\u003e\n \u003cli\u003eBadawy SM, Beg U, Liem RI, Chaudhury S, Thompson AA. A systematic review of quality of life in sickle cell disease and thalassemia after stem cell transplant or gene therapy. \u003cem\u003eBlood Adv\u003c/em\u003e. 2021;5(2):570-583. doi:10.1182/bloodadvances.2020002948\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":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Thalassemia , Bone marrow transplantation, Pediatric anemia, Blood transfusion","lastPublishedDoi":"10.21203/rs.3.rs-5020338/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5020338/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eObjective\u003c/b\u003e\u003c/p\u003e \u003cp\u003eKnowledge, Attitude and Acceptance regarding Bone marrow transplantation in caregivers of beta-thalassemia major patients\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003e A cross-sectional study was conducted among the caregivers of pediatric patients with beta thalassemia major in blood transfusion centres in Bangalore, India. Their knowledge, attitude and acceptance regarding bone marrow transplantation was assessed using a validated questionnaire. The study aimed to identify factors that influence care givers\u0026rsquo; decision about bone marrow transplantation.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003eThe knowledge, attitude and acceptance of the caregivers towards bone marrow transplantation is shown to depend on gender, education and socio-economic status. The results of this study reveal that male caregivers generally exhibited higher levels of knowledge and had a better attitude towards it as compared to their female counterparts. Higher education and socio-economic status were associated with better knowledge, more favourable attitudes and a higher acceptance towards the procedure as well.\u003c/p\u003e","manuscriptTitle":"Knowledge, Attitude and Acceptance regarding Bone marrow transplantation in caregivers of beta-thalassemia major patients","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-10-08 07:51:24","doi":"10.21203/rs.3.rs-5020338/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-09-18T18:32:32+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-09-18T15:57:44+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-09-14T06:31:50+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"82976381860860487275810539531704922210","date":"2024-09-13T16:35:32+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"251786105903135788804745274070880283613","date":"2024-09-07T00:02:36+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-09-06T14:52:30+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-09-05T10:00:16+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-09-05T09:59:19+00:00","index":"","fulltext":""},{"type":"submitted","content":"Journal of Community Genetics","date":"2024-09-02T19:01:29+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"journal-of-community-genetics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jocg","sideBox":"Learn more about [Journal of Community Genetics](http://link.springer.com/journal/12685)","snPcode":"12687","submissionUrl":"https://submission.nature.com/new-submission/12687/3","title":"Journal of Community Genetics","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"80056c85-7393-4322-b29a-fe321a6b23b7","owner":[],"postedDate":"October 8th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-10-14T16:07:06+00:00","versionOfRecord":{"articleIdentity":"rs-5020338","link":"https://doi.org/10.1007/s12687-024-00739-2","journal":{"identity":"journal-of-community-genetics","isVorOnly":false,"title":"Journal of Community Genetics"},"publishedOn":"2024-10-11 15:57:18","publishedOnDateReadable":"October 11th, 2024"},"versionCreatedAt":"2024-10-08 07:51:24","video":"","vorDoi":"10.1007/s12687-024-00739-2","vorDoiUrl":"https://doi.org/10.1007/s12687-024-00739-2","workflowStages":[]},"version":"v1","identity":"rs-5020338","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5020338","identity":"rs-5020338","version":["v1"]},"buildId":"FbvkV6FR0MCFSLy54lSbu","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}