Health related quality of life of patients with sickle cell disease aged 8-17 years at Kamuzu central hospital, Malawi.
Wachepa, Stella Alinafe
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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. Interventions aim to reduce the incidence and prevalence of complications in order to improve their health-related quality of life (HRQoL). Objective: To describe the HRQoL and the associated factors in children aged 8 to 17 with SCD attending the paediatric haematology clinic at Kamuzu Central Hospital (KCH) in Lilongwe, Malawi. Methods: A mixed methods cross sectional study was conducted at KCH paediatric haematology clinic. Data was collected with the aid of a standardized case report form that was administered after seeking informed consent from caretakers and assent from the children as appropriate. Afterwards, HRQoL was assessed using PedsQL™ Sickle Cell Disease Module by child’s report. Poor quality of life was regarded as scores of 60 or below on the PedsQL™ SCD Pain and Hurt and Pain Impact scales since they are associated with severe disease. Associations between QOL scores and independent variables were evaluated by a linear regression model. In-depth interviews were then carried out in the qualitative arm of the study among the patients, their caretakers and health care workers. The qualitative data was analysed using content thematic analysis. Results: A total of 163 children with SCD were enrolled, 52.1% (85/163) were females. Their median age was 11.2±2.7 IQR (8-14) years. Using the PedsQL™ Sickle Cell Disease Module the mean global score of quality of life of patients in this study was 62±17.3 with an inter quantile range of (51.5-71.9). The mean scores in the domains of treatment, worry, pain, communication and emotions were 72.5±15.1, 69.6±45.5, 58.8±16.3, 57.4±19 and 55.2±28.7 respectively. The highest scores were in the treatment domains while the lowest scores were in the emotion domain. The factors associated with low HRQoL scores were pain (β-coefficient -6.97 CI (3.07,15.58); p value 0.034) and low haemoglobin levels (β-coefficient 2.29 CI (0.65-3.91); p value 0.006 ). The qualitative findings indicate that the participants understood QoL in terms of physical fitness, infrequent illnesses, physical appearance and happiness. Chronic care, good diet and good home care were the factors that were positively associated with QoL while stigma, frequent illnesses and shortages on medication were negatively associated with QoL. Conclusion and recommendations: The mean score indicated that this population has a poor quality of life as indicated by the pain scales. The highest domain scores were in the treatment domain while the lowest scores were in the emotions domain. Having pain and low hemoglobin levels was associated with a poor low HRQoL scores (P-values 0.034, 0.004 respectively) while having bossing was associated with higher scores (P-value 0.006). Low family income and longer distance of travel to hospital were associated with low HRQoL scores though this was not statistically significant (p-values 0.897, 0.09 respectively). This study suggests that adequate treatment to reduce number of vasooclusive crises and to improve the steady state hemoglobin will improve the HRQoL of the children. A biopsychosocial model of health delivery and health compains may help improve quality of life by addressing the emotional needs of the patients.