Health-Related Quality of Life of Patients and Families with Primary Immunodeficiency in Malaysia: a Cross-Sectional Study.

Autor: Ahmed Meelad R; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia., Abd Hamid IJ; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia. intanj@usm.my., Zainudeen ZT; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia., Hashim IF; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia., Azizuddin MNA; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia., Mangantig E; Primary Immunodeficiency Diseases Group, Department of Clinical Medicine, Institut Perubatan & Pergigian Termaju, Universiti Sains Malaysia, 13200, Kepala Batas, Pulau Pinang, Malaysia., Taib F; Paediatric Department, School of Medical Sciences, Universiti Sains Malaysia, 16150, Kubang Kerian, Kelantan, Malaysia., Mohamad N; Paediatric Department, School of Medical Sciences, Universiti Sains Malaysia, 16150, Kubang Kerian, Kelantan, Malaysia., Ismail IH; Department of Paediatrics, Faculty of Medicine and Health Sciences, Universiti Putra Malaysia, 43400, Serdang, Selangor, Malaysia., Abdul Latiff AH; Pantai Hospital, Kuala Lumpur, Malaysia., Mohd Noh L; Hospital Tunku Azizah, Ministry of Health Malaysia, Kuala Lumpur, Malaysia.
Jazyk: angličtina
Zdroj: Journal of clinical immunology [J Clin Immunol] 2023 Jul; Vol. 43 (5), pp. 999-1006. Date of Electronic Publication: 2023 Mar 07.
DOI: 10.1007/s10875-023-01463-1
Abstrakt: Purpose: Primary immunodeficiency disease (PID) affects various aspects of a patient's life. However, the health-related quality of life (HRQOL) of PID among Malaysian patients is poorly described. This study aimed to determine the quality of life of PID patients and their respective parents.
Method: This cross-sectional study was performed from August 2020 to November 2020. Patients with PID and their families were invited to answer the PedsQL Malay version (4.0) questionnaire, the tool used to assess the HRQOL. A total of 41 families and 33 patients with PID answered the questionnaire. A comparison was performed with the previously published value of healthy Malaysian children.
Result: Parents of respondents recorded a lower mean of total score than the parents of healthy children (67.26 ± 16.73 vs. 79.51 ± 11.90, p-value = 0.001, respectively). PID patients reported lower mean total score to healthy children (73.68 ± 16.38 vs. 79.51 ± 11.90, p-value = 0.04), including the psychosocial domain (71.67 ± 16.82 vs. 77.58 ± 12.63, p-value = 0.05) and school functioning (63.94 ± 20.87 vs. 80.00 ± 14.40, p-value = 0.007). No significant difference of reported HRQOL when comparing between subgroup of PID on immunoglobulin replacement therapy and those without immunoglobulin replacement (56.96 ± 23.58 vs. 65.83 ± 23.82, p-value 0.28). Socioeconomic status was found to be predictive of the lower total score of PedsQL in both parent and children reports.
Conclusion: Parents and children with PID, especially those from middle socioeconomic status, have lower HRQOL and school function impairment than healthy children.
(© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
Databáze: MEDLINE
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