Stella Wachepa

and 9 more

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 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. Patient data was collected with the aid of a standardized case report form. HRQoL was assessed using PedsQL™ Sickle Cell Disease Module by 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 was analyzed using content thematic analysis. Results: A hundred and sixty-three children with SCD were enrolled, 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 (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 ). Conclusion: The HRQoL of this population is low. Pain and low hemoglobin were significantly associated with low HRQoL scores. A biopsychosocial model of heath care delivery and health campaigns are recommended to improve the HRQoL of the children.

Grace Ellis

and 16 more

Background: Patient-reported outcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that have been infrequently used in sub-Saharan Africa (SSA). We aimed to longitudinally measure HRQoL among pediatric lymphoma patients in Malawi. Methods: We administered the Chichewa Pediatric Patient-Reported Outcome Measurement Information System Pediatric (PROMIS)-25 at diagnosis, active treatment, and follow-up among pediatric lymphoma patients in Lilongwe, Malawi. Mean scores were calculated for the six PROMIS-25 HRQoL domains (Mobility, Anxiety, Depressive Symptoms, Fatigue, Peer Relationships, and Pain Interference) using the PROMIS scoring manual. Results: Seventy-five children completed PROMIS-25 surveys at diagnosis, 35 (47%) during active treatment, and 24 (32%) at follow-up. The majority of patients died (n= 37, 49%) or were lost-to-follow-up (n=8, 11%). Most (n=51, 68%) were male, median age was 10 (IQR 8-12), 48 (66%) presented with advanced Stage III/IV, 61 (81%) were diagnosed with Burkitt lymphoma and 14 (19%) had Hodgkin lymphoma. At diagnosis, HRQoL was poor across all domains, except for Peer Relationships. Improvements in HRQoL during active treatment and follow-up exceeded the minimally important difference. Poor Lanksy performance status ≤ 70 and Pain Intensity = 10 at diagnosis were associated with increased mortality risk and worse survival. Conclusions: Our experience suggests incorporating assessments of HRQoL via PROs in oncology care is feasible in SSA, can provide prognostic information, and generates clinically meaningful data to inform supportive care interventions. Further, PROs offer an opportunity to include patient voices and prioritize holistic patient-centered care even in low-resource settings.