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Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study

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....

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Main Authors: Ahmed Meelad, Ruwaydah, Abd Hamid, Intan Juliana, Zainudeen, Zarina Thasneem, Hashim, Ilie Fadzilah, Azizuddin, Muhd Nur Akmal, Mangantig, Ernest, Taib, Fahisham, Mohamad, Norsarwany, Ismail, Intan Hakimah, Abdul Latiff, Amir Hamzah, Mohd Noh, Lokman
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Published: Springer Nature 2023
Online Access:http://psasir.upm.edu.my/id/eprint/108154/
https://link.springer.com/article/10.1007/s10875-023-01463-1?error=cookies_not_supported&code=dde7a775-a9f4-4be3-bb37-c8020bbeb4fa
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spelling my.upm.eprints.1081542024-09-23T03:35:29Z http://psasir.upm.edu.my/id/eprint/108154/ Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study Ahmed Meelad, Ruwaydah Abd Hamid, Intan Juliana Zainudeen, Zarina Thasneem Hashim, Ilie Fadzilah Azizuddin, Muhd Nur Akmal Mangantig, Ernest Taib, Fahisham Mohamad, Norsarwany Ismail, Intan Hakimah Abdul Latiff, Amir Hamzah Mohd Noh, Lokman 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. Springer Nature 2023 Article PeerReviewed Ahmed Meelad, Ruwaydah and Abd Hamid, Intan Juliana and Zainudeen, Zarina Thasneem and Hashim, Ilie Fadzilah and Azizuddin, Muhd Nur Akmal and Mangantig, Ernest and Taib, Fahisham and Mohamad, Norsarwany and Ismail, Intan Hakimah and Abdul Latiff, Amir Hamzah and Mohd Noh, Lokman (2023) Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study. Journal of Clinical Immunology, 43 (5). pp. 999-1006. ISSN 0271-9142; ESSN: 1573-2592 https://link.springer.com/article/10.1007/s10875-023-01463-1?error=cookies_not_supported&code=dde7a775-a9f4-4be3-bb37-c8020bbeb4fa 10.1007/s10875-023-01463-1
institution Universiti Putra Malaysia
building UPM Library
collection Institutional Repository
continent Asia
country Malaysia
content_provider Universiti Putra Malaysia
content_source UPM Institutional Repository
url_provider http://psasir.upm.edu.my/
description 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.
format Article
author Ahmed Meelad, Ruwaydah
Abd Hamid, Intan Juliana
Zainudeen, Zarina Thasneem
Hashim, Ilie Fadzilah
Azizuddin, Muhd Nur Akmal
Mangantig, Ernest
Taib, Fahisham
Mohamad, Norsarwany
Ismail, Intan Hakimah
Abdul Latiff, Amir Hamzah
Mohd Noh, Lokman
spellingShingle Ahmed Meelad, Ruwaydah
Abd Hamid, Intan Juliana
Zainudeen, Zarina Thasneem
Hashim, Ilie Fadzilah
Azizuddin, Muhd Nur Akmal
Mangantig, Ernest
Taib, Fahisham
Mohamad, Norsarwany
Ismail, Intan Hakimah
Abdul Latiff, Amir Hamzah
Mohd Noh, Lokman
Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
author_facet Ahmed Meelad, Ruwaydah
Abd Hamid, Intan Juliana
Zainudeen, Zarina Thasneem
Hashim, Ilie Fadzilah
Azizuddin, Muhd Nur Akmal
Mangantig, Ernest
Taib, Fahisham
Mohamad, Norsarwany
Ismail, Intan Hakimah
Abdul Latiff, Amir Hamzah
Mohd Noh, Lokman
author_sort Ahmed Meelad, Ruwaydah
title Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
title_short Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
title_full Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
title_fullStr Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
title_full_unstemmed Health-related quality of life of patients and families with primary immunodeficiency in Malaysia: a cross-sectional study
title_sort health-related quality of life of patients and families with primary immunodeficiency in malaysia: a cross-sectional study
publisher Springer Nature
publishDate 2023
url http://psasir.upm.edu.my/id/eprint/108154/
https://link.springer.com/article/10.1007/s10875-023-01463-1?error=cookies_not_supported&code=dde7a775-a9f4-4be3-bb37-c8020bbeb4fa
_version_ 1811686001125359616
score 13.211869

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