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

Autor: Stella Wachepa, Ruth Bvalani, Teddy Namubiru, Shamim Namugerwa, Gloria Kaudha, Atupele Mpasa, Deogratias Munube, Joseph Rujumba, Nmazuo Ozuah, Sarah Kiguli
Rok vydání: 2022
Předmět:
Zdroj: Pediatric bloodcancerREFERENCES. 69(10)
ISSN: 1545-5017
Popis: 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.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.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.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 (β-coefficient -6.97 CI (-3.07,-15.58); p value .034) and low hemoglobin levels (β-coefficient 2.29 CI (.65-3.91); p value .006).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.
Databáze: OpenAIRE