Health-related quality of life of patients with sickle cell disease aged 8-17 years at Kamuzu Central Hospital, Malawi.

BACKGROUND: Sickle cell disease (SCD) is characterized by both acute and chronic complications that affect the daily lives of patients and lower their quality of life. OBJECTIVE: To describe the health-related quality of life (HRQoL) and the associated factors in children aged 8-17 years with SCD attending the pediatric hematology clinic at Kamuzu Central Hospital (KCH) in Lilongwe, Malawi. METHODS: A mixed-methods cross-sectional study was conducted at KCH. Patient data were collected with the aid of a standardized case report form. HRQoL was assessed using PedsQL™ Sickle Cell Disease Module by the child's report. Associations between HRQoL scores and independent variables were evaluated by a linear regression model. In-depth interviews were then carried out and the qualitative data were analyzed using content thematic analysis. RESULTS: A hundred and sixty-three children with SCD were enrolled and 52.1% were females. Their median age was 11.2 ± 2.7 years. The mean global HRQoL score of the children was 62 ± 17.3. The highest scores were in the treatment domain (72.5 ± 15.1) while the lowest scores were in the emotions domain (55.2 ± 28.7). The mean pain score was 58.8 ± 16.3. The factors associated with low HRQoL scores were pain (ß-coefficient -6.97 CI (-3.07,-15.58); p value .034) and low hemoglobin levels (ß-coefficient 2.29 CI (.65-3.91); p value .006). CONCLUSION: The HRQoL of this population is low. Pain and low hemoglobin were significantly associated with low HRQoL scores. Adequate treatment to control pain and increase the steady-state hemoglobin may improve the HRQoL of children with SCD. Interventions to address low emotional scores are recommended.

Thinness among children aged 5-17 years living in Nakivale refugee settlement, South Western Uganda: a cross-sectional study.

BACKGROUND: Hunger and malnutrition are rampant among refugees and displaced populations, many of whom are infants and children. We sought to determine the prevalence and factors associated with thinness among children aged 5-17 years living in Nakivale refugee settlement, Isingiro district, southwestern Uganda. METHODS: This was a cross sectional study that enrolled 420 children aged 5 to 17 years. The World Health Organization cluster sampling was used to select 30 villages from which 14 households were selected by consecutive sampling and participants were then chosen per household by simple random sampling. Data were collected on the participant socio-demographic, family, dietary, medical, hygiene and refugee status factors. Thinness was defined as having a z-score < -2 standard deviations of Body Mass Index-for-age from the median WHO growth standards. The prevalence of thinness was determined by ascertaining the total number of children with thinness over the total number of children studied. Multivariable logistic regression model was used to determine the factors independently associated with thinness with p < 0.05 level of significance. RESULTS: A total of 420 children aged 5-17 years were enrolled into the study. The median age (IQR) was 8.6 (6.8-11.8) and majority 248 (59.1%) were female. The prevalence of thinness was 5.5% (95% CI: 3.7-8.1%). The factors independently associated with thinness were; living with a chronic disease (aOR 6.47, 95%CI; 1.63-24.64, p = 0.008), use of water from natural sources (aOR 3.32, 95%CI; 1.27-8.71, p = 0.015), and duration of stay in the settlement of less or equal to 10 years (aOR 3.19, 95%CI; 1.15-8.83, p = 0.025). CONCLUSION: Five in every 100 children aged 5-17 years in Nakivale refugee settlement have thinness. Thinness was more likely among children who are living with a chronic disease, used water from natural sources and those whose families had stayed shorter in the settlement. Our findings suggest that children with chronic disease should receive extra food supplementation and have routine growth monitoring as part of their chronic care. The study reiterates a need to have clean and safe water supply and close nutrition assessment and monitoring, especially for newly registered refugee children.