View Article |
Quality of Life Among Thalassaemia Children, Adolescent and Their Caregivers
Munirah Ismail1, Choong Yin Chun2, Noor Aini Mohd Yusoff3, Suzana Shahar4, Zahara Abdul Manaf5, Roslee Rajikan6, Zarina Abdul Latiff7, Hishamshah Mohd Ibrahim8, A. Rahman A. Jamal9.
In thalassaemic patients, the impact of the disease especially on quality of life (QOL) of the caregivers in Malaysia has not been established. This study was conducted to assess the health-related quality of life (HRQOL) of thalassaemia patients and their caregivers in order to explore factors affecting their QOL. A cross-sectional study was conducted on 75 thalassaemic children and adolescents aged between 7 and 18 years old and their caregivers. The PedsQLTM 4.0
generic core scales questionnaire was administered to both thalassaemic children and their caregivers while the health questionnaire EQ 5D was given to caregivers only. The subjects were recruited from Hospital Kuala Lumpur (HKL) and Universiti Kebangsaan Malaysia Medical Centre (UKMMC). The results revealed that the mean of psychosocial HRQOL score in patients (63.91±14.65) was significantly lower than parent proxy reports (67.14±10.48) (p=0.008). The
school functioning score (50.59±15.31) was the lowest of the psychosocial measure, followed by emotional functioning (59.92±16.83) and social functioning (78.01±13.92) score. The patients’ pre-transfusion haemoglobin concentration was significantly associated with their QOL (p=0.02). Having more children, higher numbers of thalassaemic children and lower educational level of caregivers were associated with poorer QOL. In conclusion, caregivers underestimated
the QOL of their thalassaemic children. The school functioning domain was affected the most domain. There is a need to improve the QOL of thalassaemic children and their caregivers.
Affiliation:
- Universiti Kebangsaan Malaysia, Malaysia
- Universiti Kebangsaan Malaysia, Malaysia
- ASIA Metropolitan University, Malaysia
- Universiti Kebangsaan Malaysia, Malaysia
- Universiti Kebangsaan Malaysia, Malaysia
- Universiti Kebangsaan Malaysia, Malaysia
- Universiti Kebangsaan Malaysia, Malaysia
- Paediatric Institute, Malaysia
- Medical MolecularBiology Institute (UMBI) , Malaysia
Toggle translation
|
|
Indexation |
Indexed by |
MyJurnal (2021) |
H-Index
|
6 |
Immediacy Index
|
0.000 |
Rank |
0 |
Indexed by |
Web of Science (SCIE - Science Citation Index Expanded) |
Impact Factor
|
JCR (1.009) |
Rank |
Q4 (Multidisciplinary Sciences) |
Additional Information |
JCI (0.15) |
Indexed by |
Scopus 2020 |
Impact Factor
|
CiteScore (1.4) |
Rank |
Q2 (Multidisciplinary) |
Additional Information |
SJR (0.251) |
|
|
|