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dc.contributor.authorMuthahi, David Kambasu
dc.date.accessioned2019-09-11T09:01:59Z
dc.date.available2019-09-11T09:01:59Z
dc.date.issued2018
dc.identifier.citationMuthahi, D. K. (2018). Health related quality of life and associated factors in children with Sickle Cell disease aged 8-17 years, attending Sickle Cell Clinic, Mulago Hospital. Unpublished master’s thesis, Makerere University, Kampala, Uganda.en_US
dc.identifier.urihttp://hdl.handle.net/10570/7387
dc.descriptionA dissertation submitted in partial fulfilment of the requirements for the award of the Degree of Master of Medicine in Paediatrics and Child Health of Makerere University.en_US
dc.description.abstractIntroduction: Childhood sickle cell disease is a significant cause of morbidity and mortality and most of the deaths occur in resource-limited settings. Sickle cell is associated with some complications such as stroke, short stature, delayed puberty, acute chest syndrome, severe pain and severe anemia, thus likely to compromise children’s Health-Related Quality of Life (HRQoL). However, recent advances in treatment have created better prospects for children with sickle cell, thus likely to improve their HRQoL. The sickle cell clinic at Mulago Hospital, effort is being made to improve HRQoL of these children, by organizing clinic activities, managing pain, providing malaria prophylaxis, penicillin prophylaxis and giving Hydroxyurea. However, the HRQoL of children with sickle cell disease in Uganda, a country with a high sickle cell burden is not known. This study, therefore, sought to determine the HRQoL of children with sickle cell disease aged 8 17years, and associated factors, at Mulago National Referral Hospital. General Objective: To determine the Health-related Quality of life and describe the associated factors among children with sickle cell disease attending Mulago National Referral Hospital. Methods: This was a cross-sectional study with qualitative and quantitative components. One hundred and forty children with SCD and their caretakers were enrolled from the sickle cell clinic at the Mulago National Referral Hospital. Written informed consent and assent were obtained from caretakers and children. Quantitative methods were used to determine the HRQoL and factors associated while qualitative data helped to better understand the factors that influence health-related quality of life of children with sickle cell disease. Systematic random sampling was done. The health-related quality of life in children with sickle cell disease was assessed using the Pediatric inventory Quality of Life Questionnaire (PedQLTM). The factors associated were assessed by using a questionnaire. Qualitative data was obtained by conducting focus group discussion (FGDs) with caretakers and children. The quantitative data were entered into Epidata version 3.1. It was exported to STATA for analysis purpose. A linear regression at bi-variate and multivariate analysis was used to look for the association of HRQoL and factors such as socio-demographic factors. For P - Value of less than 0.05 (p <0.05) was considered significant. Qualitative data was analyzed manually using the content thematic approach. Results: One hundred and forty children with SCD aged 8-17 years and their caretakers/parents were enrolled in this study. The mean age was14.2 years. Females were 60% and 26% came from Kampala. Majority (91.4%) of the caretakers were females, 89% were married and 84% earn less than 57 US $ per month. Children with SCD had low HRQoL as assessed by participating children and their caretakers. The total mean score was 62.98 for children and 63.24 for caretakers. The mean physical 7.5(20.3), emotional 61.4 (19.0), school 58.4 (19.9) and psychosocial64.8 (15.9) functioning were below the recommended cut off for the appropriate HRQoL as assessed by children with SCD. However, the mean social functioning was high as assessed by children 74.6 (21.5) and their caretakers 73.4 (24.4). Factors found to be associated with high Physical functioning as assessed by both children and caretakers included: single caretakers ( p-value 0.008 for children and p-value <0.001 for caretakers), high household income ( p-value 0.040 for children and p-value <0.001 for caretakers), having malaria (p-value <0.001 for both children and caretakers), getting pneumococcal vaccine ( p-value < 0.001 as assessed by both ), having fever (p-value < 0.001 for both children and caretakers ) and getting more than 3 blood transfusions ( p-value 0.002 for both children and caretakers ). It was found in this study that female caretaker (p-value 0.009 for children and p-value < 0.001 for caretakers) and taking folic acid (p-value 0.001 for children and p-value < 0.001 for caretakers) impacted negatively the physical functioning. Other religion than Muslim ( p-value <0.001 for both children and caretakers ), taking Hydroxyurea ( p-value 0.001 for both children and caretakers), having stroke ( p-value 0.029 for children and p-value < 0.001 for caretakers) and getting more than 3 blood transfusions ( p-value 0.001 for both children and caretakers) negatively influenced the psychosocial functioning of children with SCD. Children with SCD experienced regular pain, problems with growth, stigma and missed school which negatively affected their HRQoL. Improvements in health due to treatment and resuming school led to high quality of life for children with SCD. Conclusion: 1. Children with SCD had low HRQoL as assessed by participating children and their caretakers. The mean physical, emotional school and psychosocial functioning were below the cut off as assessed by children with SCD. 2. The factors found to be positively associated with Physical functioning as assessed by both children and caretakers included: single caretakers, high household income, having malaria, getting pneumococcal vaccine, having fever and getting more than 3 blood transfusions. Having a female caretaker and taking folic acid impacted negatively on the physical functioning. Other religion than Muslim, taking Hydroxyurea, having stroke and getting more than 3 blood transfusions negatively influenced the psychosocial functioning. 3. Children with SCD experienced regular pain, problems with growth, stigma and missed school which negatively affected their HRQoL. Improvements in health due to treatment and resuming school led to high quality of life for children with SCD. Recommendations: Assessment of HRQoL should be included in the guidelines of management of children with SCD as it will help to identify those who need psychosocial support and behavior intervention to promote appropriate functioning and to minimize activity restrictions in order to improve their quality of lifeen_US
dc.description.sponsorshipOicha Hospital, and Les Amis du Nord Kivuen_US
dc.language.isoenen_US
dc.subjectQuality of lifeen_US
dc.subjectChildren aged 8-17 yearsen_US
dc.subjectSickle Cell diseaseen_US
dc.subjectMulago Hospitalen_US
dc.titleHealth related quality of life and associated factors in children with Sickle Cell disease aged 8-17 years, attending Sickle Cell Clinic, Mulago Hospitalen_US
dc.typeThesisen_US


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