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....
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
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Springer Nature
2023
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| Online Access: | http://psasir.upm.edu.my/id/eprint/108154/ |
| _version_ | 1848865087256788992 |
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| 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 |
| 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 |
| building | UPM Institutional Repository |
| collection | Online Access |
| 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. |
| first_indexed | 2025-11-15T13:59:08Z |
| format | Article |
| id | upm-108154 |
| institution | Universiti Putra Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-15T13:59:08Z |
| publishDate | 2023 |
| publisher | Springer Nature |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | upm-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 |
| 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 |
| title | 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_short | 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 |
| url | http://psasir.upm.edu.my/id/eprint/108154/ http://psasir.upm.edu.my/id/eprint/108154/ http://psasir.upm.edu.my/id/eprint/108154/ |