Development of a Culturally Appropriate Health-related Quality of Life Measure for Human Immunodeficiency Virus-infected Children in Thailand

Overview

Journal J Paediatr Child Health

Specialty Pediatrics

Date 2010 Oct 27

PMID 20973862

Citations 4

Authors

Warunee Punpanich

Ron D Hays

Roger Detels

Kulkanya Chokephaibulkit

Umaporn Chantbuddhiwet

Pimsiri Leowsrisook

Wasana Prasitsuebsai

Affiliations

Soon will be listed here.

Abstract

Aim: Develop a reliable and valid self-report health-related quality of life (HRQOL) instrument for human immunodeficiency virus (HIV)-infected children in Thailand.

Methods: The Thai Quality of Life for HIV-infected Children instrument, the ThQLHC (an HRQOL measure that uses the Pediatric Quality of Life Inventory as a generic core and a 17-item HIV-targeted scale), was developed and administered cross-sectionally to 292 HIV-infected children in Thailand. The disease-targeted scale included HIV-related symptoms, ability to adhere with their treatment regimens and self-image. The internal consistency reliability (Cronbach's α) and construct validity of the ThQLHC scales were then evaluated.

Results: Internal consistency reliability coefficients ranged from 0.57 to 0.82, with four of five scales reaching the minimal acceptable level (>0.70). Significant associations were found between poor HRQOL and poor self-rated disease severity, care giver's rated overall quality of life, cluster of differentiation (CD) 4 percent and plasma HIV ribonucleic acid level.

Conclusion: Reliable and valid disease-targeted HRQOL measures for HIV-infected children are essential in the assessment of therapeutic effectiveness. The findings of this cross-sectional survey provide support for the reliability and validity of the ThQLHC as an HRQOL outcome measure for HIV-infected Thai children.

Citing Articles

Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.

McNeill M, Noyek S, Engeda E, Fayed N Qual Life Res. 2020; 30(4):983-995.

PMID: 33156433 DOI: 10.1007/s11136-020-02690-4.

Das A, Detels R, Afifi A, Javanbakht M, Sorvillo F, Panda S Qual Life Res. 2017; 26(8):2171-2180.

PMID: 28343351 PMC: 5511072. DOI: 10.1007/s11136-017-1557-x.

Formation and psychometric evaluation of a health-related quality of life instrument for children living with HIV in India.

Das A, Detels R, Afifi A, Javanbakht M, Sorvillo F, Panda S J Health Psychol. 2016; 23(4):577-587.

PMID: 27703079 PMC: 5562529. DOI: 10.1177/1359105316671022.

From transmission to transition: lessons learnt from the Thai paediatric antiretroviral programme.

Tulloch O, Theobald S, Ananworanich J, Chasombat S, Kosalaraksa P, Jirawattanapisal T PLoS One. 2014; 9(6):e99061.

PMID: 24893160 PMC: 4043947. DOI: 10.1371/journal.pone.0099061.

References

Palumbo P, Raskino C, Fiscus S, Pahwa S, Fowler M, Spector S . Predictive value of quantitative plasma HIV RNA and CD4+ lymphocyte count in HIV-infected infants and children. JAMA. 1998; 279(10):756-61. DOI: 10.1001/jama.279.10.756. View

Varni J, Seid M, Kurtin P . PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001; 39(8):800-12. DOI: 10.1097/00005650-200108000-00006. View

Stanton D, Wu A, Moore R, Rucker S, Piazza M, Abrams J . Functional status of persons with HIV infection in an ambulatory setting. J Acquir Immune Defic Syndr (1988). 1994; 7(10):1050-6. View

Seage 3rd G, Buchacz K, Weinberg G, Patel K, McIntosh K, Dankner W . The Pediatric AIDS Severity Score (PASS): a multidimensional AIDS-severity adjustment for pediatric HIV infection. J Acquir Immune Defic Syndr. 2006; 43(5):603-10. DOI: 10.1097/01.qai.0000242453.20521.4f. View

Ichikawa M, Natpratan C . Quality of life among people living with HIV/AIDS in northern Thailand: MOS-HIV Health Survey. Qual Life Res. 2004; 13(3):601-10. DOI: 10.1023/B:QURE.0000021319.73865.5a. View

SCOTT G, Hutto C, Makuch R, Mastrucci M, OConnor T, Mitchell C . Survival in children with perinatally acquired human immunodeficiency virus type 1 infection. N Engl J Med. 1989; 321(26):1791-6. DOI: 10.1056/NEJM198912283212604. View

Guyatt G, Feeny D, Patrick D . Issues in quality-of-life measurement in clinical trials. Control Clin Trials. 1991; 12(4 Suppl):81S-90S. DOI: 10.1016/s0197-2456(05)80014-5. View

Smith K, Avis N, Mayer K, Swislow L . Use of the MQoL-HIV with asymptomatic HIV-positive patients. Qual Life Res. 1997; 6(6):555-60. DOI: 10.1023/a:1018412216638. View

Mofenson L, Harris D, Rich K, Meyer 3rd W, Read J, Moye Jr J . Serum HIV-1 p24 antibody, HIV-1 RNA copy number and CD4 lymphocyte percentage are independently associated with risk of mortality in HIV-1-infected children. National Institute of Child Health and Human Development Intravenous Immunoglobulin.... AIDS. 1999; 13(1):31-9. DOI: 10.1097/00002030-199901140-00005. View

10.

Hays R, Hadorn D . Responsiveness to change: an aspect of validity, not a separate dimension. Qual Life Res. 1992; 1(1):73-5. DOI: 10.1007/BF00435438. View

11.

Steenhoff A, Wood S, Shah S, Rutstein R . Cutaneous Mycobacterium avium complex infection as a manifestation of the immune reconstitution syndrome in a human immunodeficiency virus-infected child. Pediatr Infect Dis J. 2007; 26(8):755-7. DOI: 10.1097/INF.0b013e3180618c2d. View

12.

Hjortswang H, Almer S, Strom M . The network: a strategy to describe the relationship between quality of life and disease activity. The case of inflammatory bowel disease. Eur J Gastroenterol Hepatol. 1999; 11(10):1099-104. View

13.

Lenderking W, Testa M, Katzenstein D, Hammer S . Measuring quality of life in early HIV disease: the modular approach. Qual Life Res. 1997; 6(6):515-30. DOI: 10.1023/a:1018408115729. View

14.

Kanwal F, Hays R, Kilbourne A, Dulai G, Gralnek I . Are physician-derived disease severity indices associated with health-related quality of life in patients with end-stage liver disease?. Am J Gastroenterol. 2004; 99(9):1726-32. DOI: 10.1111/j.1572-0241.2004.30300.x. View

15.

Leplege A, Rude N, Ecosse E, Ceinos R, Dohin E, Pouchot J . Measuring quality of life from the point of view of HIV-positive subjects: the HIV-QL31. Qual Life Res. 1997; 6(6):585-94. DOI: 10.1023/a:1018468301617. View

16.

Nicolas J, Dazord A, Manificat S . Evaluation of life quality for children infected by HIV: validation of a method and preliminary results. Pediatr AIDS HIV Infect. 1996; 7(4):254-60. View

17.

Holmes W, Shea J . Performance of a new, HIV/AIDS-targeted quality of life (HAT-QoL) instrument in asymptomatic seropositive individuals. Qual Life Res. 1997; 6(6):561-71. DOI: 10.1023/a:1018464200708. View

18.

Varni J, Seid M, Knight T, Uzark K, Szer I . The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002; 25(2):175-93. DOI: 10.1023/a:1014836921812. View

19.

Varni J, Seid M, Rode C . The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999; 37(2):126-39. DOI: 10.1097/00005650-199902000-00003. View

20.

Ganz P, Coscarelli Schag C, Kahn B, Petersen L, Hirji K . Describing the health-related quality of life impact of HIV infection: findings from a study using the HIV Overview of Problems--Evaluation System (HOPES). Qual Life Res. 1993; 2(2):109-19. DOI: 10.1007/BF00435730. View