Health-related quality of life of patients with sickle cell disease aged 8-17 years at Kamuzu Central Hospital, Malawi.
Pediatr Blood Cancer
; 69(10): e29876, 2022 10.
Article
in En
| MEDLINE
| ID: mdl-35856744
ABSTRACT
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.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Quality of Life
/
Anemia, Sickle Cell
Type of study:
Etiology_studies
/
Observational_studies
/
Prevalence_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspects:
Patient_preference
Limits:
Adolescent
/
Child
/
Female
/
Humans
/
Male
Country/Region as subject:
Africa
Language:
En
Journal:
Pediatr Blood Cancer
Journal subject:
HEMATOLOGIA
/
NEOPLASIAS
/
PEDIATRIA
Year:
2022
Document type:
Article
Affiliation country:
Uganda
Publication country:
EEUU
/
ESTADOS UNIDOS
/
ESTADOS UNIDOS DA AMERICA
/
EUA
/
UNITED STATES
/
UNITED STATES OF AMERICA
/
US
/
USA