Abstract
Purpose
Indigenous conceptions of health have been shown to differ from that of their non-Indigenous counterparts. As a result, there remains uncertainty over the appropriateness and value of using existing health-related quality-of-life (HRQoL) instruments in Indigenous communities. The objective of this review was to identify studies that either measure the HRQoL of an Indigenous population or validated a measure used to elicit the HRQoL in an Indigenous population.
Methods
A systematic review of the published literature was conducted to (1) investigate the extent to which HRQoL instruments are used in Indigenous populations; (2) to identify which instruments have been validated in which populations; and (3) to identify which instruments have been tailored for use with Indigenous populations.
Results
Forty-one studies were included in the review. Only three of the 41 studies utilised Indigenous-specific instruments. The remainder (38 studies) utilised generic population or disease-specific instruments. Four studies found specific HRQoL instruments to be valid in these populations and 32 estimated the HRQoL of an Indigenous population. The limited examples of Indigenous-specific instruments highlighted the potential importance to the HRQoL of these populations of domains that lie outside of traditional measures including social and community domains as well as domains relating to culture, diet and land use on top of more traditional HRQoL domains.
Conclusion
Ensuring that the HRQoL of Indigenous populations is being appropriately measured is vital to prioritising available resources to the most effective interventions. HRQoL instruments present an opportunity to directly elicit and incorporate Indigenous preferences and conceptions of health into these decisions. Further work is required in the field to ensure that this potential is realised.
Similar content being viewed by others
References
Gracey, M., & King, M. (2009). Indigenous health part 1: Determinants and disease patterns. The Lancet, 374(9683), 65–75.
World Health Organisation (2014). Indigenous populations. 12 November 2014. http://www.who.int/topics/health_services_indigenous/en/.
Mooney, G. H. (2009). Challenging health economics (pp. 1–250). Oxford: Oxford University Press.
Kunitz, S. J. (2007). The health of populations: General theories and particular realities. New York: Oxford University Press.
Maher, E., et al. (2005). Health-related quality of life of overweight and obese children. JAMA, 293(1), 70–76.
Chenhall, R. D., et al. (2010). Individual quality of life among at risk indigenous youth in Australia. Applied Research in Quality of Life, 5(3), 171–183.
Ring, L., et al. (2007). Individual quality of life: Can it be accounted for by psychological or subjective well-being? Social Indicators Research, 82(3), 443–461.
Nagel, T., Hinton, R., & Griffin, C. (2012). Yarning about Indigenous mental health: Translation of a recovery paradigm to practice. Advances in Mental Health, 10(3), 216–223.
Carson, B. (2007). Social determinants of indigenous health. Crows Nest, NSW: Allen & Unwin.
Senior, K. (2000). Testing the ICIDH-2 with indigenous Australians: Results of field work in two aboriginal communities in the northern territory., AIHW, ICIDH Collaborating Centre, and Department of Health and Family Services, Editors. Canberra.
Al Sayah, F., et al. (2013). Health related quality of life measures in Arabic speaking populations: A systematic review on cross-cultural adaptation and measurement properties. Quality of Life Research, 22(1), 213–229.
Alghadeer, A., Newton, T., & Dunne, S. (2010). Cross cultural adaptation of oral health-related quality of life measures. Dental Update, 37(10), 706.
Guillemin, F., Bombardier, C., & Beaton, D. (1993). Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. Journal of Clinical Epidemiology, 46(12), 1417–1432.
Serhier, Z., et al. (2012). Cross-cultural adaptation and validation of the knee and hip health-related quality of life (OAKHQoL) in a Moroccan Arabic-speaking population. Rheumatology International, 32(4), 1015–1023.
Chow, M. Y. K., et al. (2013). Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: A systematic review. Quality of Life Research, 22(8), 2183–2200.
Jardine, J., et al. (2014). Self-reported quality of life of young children with conditions from early infancy: A systematic review. Pediatrics, 134(4), e1129–e1148.
Stevens, K., & Ratcliffe, J. (2012). Measuring and valuing health benefits for economic evaluation in adolescence: An assessment of the practicality and validity of the child health utility 9D in the Australian adolescent population. Value in Health, 15(8), 1092.
Bakas, T., et al. (2012). Systematic review of health-related quality of life models. Health and Quality of Life Outcomes, 10, 134.
Angell, B. J., et al. (2014). Global systematic review of the cost-effectiveness of indigenous health interventions. PLoS One, 9(11), e111249.
Allan, C. L., Flett, B., & Dean, H. J. (2008). Quality of life in first nation youth with type 2 diabetes. Maternal and Child Health Journal, 12(Suppl1), S103–S109.
Barton, S. S., et al. (2005). Health and quality of life of aboriginal residential school survivors, bella Coola valley, 2001. Social Indicators Research, 73(2), 295–312.
Beals, J., et al. (2006). Different factor loadings for SF36: the strong heart study and the national survey of functional health status. Journal of Clinical Epidemiology, 59(2), 208–215.
Braun, P., et al. (2014). Caregiver reported oral health-related quality of life in young American Indian children. Journal of Immigrant and Minority Health, 16(5), 951–958.
Broughton, J. R., et al. (2012). Self-reported oral health and dental service-use of rangatahi within the rohe of Tainui. New Zealand Dental Journal, 108(3), 90–94.
Burhansstipanov, L., et al. (2012). Comparison of quality of life between native and non-native cancer survivors: Native and non-native cancer survivors’ QOL. Journal of Cancer Education, 27(1 Suppl), S106–S113.
Chenhall, R., & Senior, K. (2012). Treating indigenous Australians with alcohol/drug problems: Assessing quality of life. Alcoholism Treatment Quarterly, 30(2), 130–145.
Chenhall, R. D., et al. (2010). Individual quality of life among at risk indigenous youth in Australia. Applied Research in Quality of Life, 5(3), 171–183.
Chowdhury, P. P., Balluz, L., & Strine, T. W. (2008). Health-related quality of life among minority populations in the United States, BRFSS 2001–2002. Ethnicity and Disease, 18(4), 483–487.
Daubs, M. D., et al. (2014). Scoliosis research society-22 results in 3052 healthy adolescents aged 10 to 19 years. Spine, 39(10), 826–832.
Divaris, K., et al. (2011). The relationship of oral health literacy with oral health-related quality of life in a multi-racial sample of low-income female caregivers. Health and Quality of Life Outcomes, 9, 108.
Dyall, L., et al. (2014). Cultural and social factors and quality of life of Maori in advanced age. Te puawaitanga o nga tapuwae kia ora tonu: Life and living in advanced age: A cohort study in New Zealand (LiLACS NZ). New Zealand Medical Journal, 127(1393), 62–79.
Dyrbye, L. N., et al. (2007). Race, ethnicity, and medical student well-being in the United States. Archives of Internal Medicine, 167(19), 2103–2109.
Edwards, S. L., et al. (2012). Construct validity of the SF-12 among American Indian and Alaska Native people using two known scoring methods. Journal of Health Care for the Poor and Underserved, 23(3), 1123–1136.
Gupchup, G., et al. (2001). Developing a community-specific health-related quality of life (HRQOL) questionnaire for asthma: The asthma-specific quality of life questionnaire for native American adults (AQLQ-NAA). Journal of Asthma, 38(2), 169–178.
Harwood, M., et al. (2012). An assessment of the Hua Oranga outcome instrument and comparison to other outcome measures in an intervention study with Maori and Pacific people following stroke. New Zealand Medical Journal, 125(1364), 57–67.
Henderson, J. A., Buchwald, D., & Manson, S. M. (2006). Relationship of medication use to health-related quality of life among a group of older American Indians. Journal of Applied Gerontology, 25(1, Suppl), 89S–104S.
Holtz, C., et al. (2014). A quantitative study of factors influencing quality of life in rural Mexican women diagnosed with HIV. JANAC: Journal of the Association of Nurses in AIDS Care, 25(6), 555–567.
Jiang, L., et al. (2009). Health-related quality of life and help seeking among American Indians with diabetes and hypertension. Quality of Life Research, 18(6), 709–718.
Johnson, J. A., Nowatzki, T. E., & Coons, S. J. (1996). Health-related quality of life of diabetic Pima Indians. Medical Care, 34(2), 97–102.
Kaholokula, J. K., et al. (2006). Ethnic differences in the relationship between depressive symptoms and health-related quality of life in people with type 2 diabetes. Ethnicity and Health, 11(1), 59–80.
Kant, S., et al. (2013). Social, cultural, and land use determinants of the health and well-being of Aboriginal peoples of Canada: A path analysis. Journal of Public Health Policy, 34(3), 461–476.
Kit, J. A., et al. (2003). Chronic disease self-management in Aboriginal communities: Towards a sustainable program of care in rural communities. Australian Journal of Primary Health, 9(2–3), 168–176.
Lix, L. M., Metge, C., & Leslie, W. D. (2009). Measurement equivalence of osteoporosis-specific and general quality-of-life instruments in aboriginal and non-aboriginal women. Quality of Life Research, 18(5), 619–627.
Lopes, A. A., et al. (2003). Health-related quality of life and associated outcomes among hemodialysis patients of different ethnicities in the United States: The dialysis outcomes and practice patterns study (DOPPS). American Journal of Kidney Diseases, 41(3), 605–615.
Martin, L. J., et al. (2013). Poorer physical health-related quality of life among aboriginals and injection drug users treated with highly active antiretroviral therapy. Canadian Journal of Public Health, 104(1), e33–e38.
McClure, T. M., et al. (2009). The effect of visual impairment on vision-related quality of life in American Indian/Alaska Natives. Ophthalmic Epidemiology, 16(2), 128–135.
McClure, T. M., et al. (2011). The impact of eyeglasses on vision-related quality of life in American Indian/Alaska natives. American Journal of Ophthalmology., 151(1), 175–182.e2.
McFall, S. L., Solomon, T. G., & Smith, D. W. (2000). Health-related quality of life of older native American primary care patients. Research on Aging, 22(6), 692–714.
Naughton, M. J., et al. (2008). Health-related quality of life of children and adolescents with type 1 or type 2 diabetes mellitus: SEARCH for diabetes in youth study. Archives of Pediatrics and Adolescent Medicine, 162(7), 649–657.
Perkins, M., Devlin, N., & Hansen, P. (2004). The validity and reliability of EQ-5D health state valuations in a survey of Maori. Quality of Life Research, 13(1), 271–274.
Poole, J. L., et al. (2007). Quality of life in American Indian and White women with and without rheumatoid arthritis. The American Journal of Occupational Therapy, 61(3), 280–289.
Poole, J. L., et al. (2010). Quality of life in American Indian women with arthritis or diabetes. American Journal of Occupational Therapy, 64(3), 496–505.
Scott, K. M., et al. (2000). A challenge to the cross-cultural validity of the SF-36 health survey: Factor structure in Maori, Pacific and New Zealand European ethnic groups. Social Science and Medicine, 51(11), 1655–1664.
Spencer, S., et al. (2013). Influence of caregiving on health-related quality of life among American Indians. Journal of the American Geriatrics Society, 61(9), 1615–1620.
Syed Alwi, S. A. R., et al. (2009). The menopausal experience among indigenous women of Sarawak, Malaysia. Climacteric, 12(6), 548–556.
Thommasen, H. V., et al. (2005). Understanding relationships between diabetes mellitus and health-related quality of life in a rural community. Rural and Remote Health, 5(3), 441.
Traebert, J., et al. (2010). Differential item functioning related to ethnicity in an oral health-related quality of life measure. International Journal of Paediatric Dentistry, 20(6), 435–441.
Ukra, A., et al. (2013). Impact of malocclusion on quality of life among New Zealand adolescents. The New Zealand Dental Journal, 109(1), 18–23.
Wells, P. L., et al. (2010). An oral health survey of the Lumbee tribe in southeastern North Carolina. Journal of Dental Hygiene: JDH/American Dental Hygienists’ Association, 84(3), 137–144.
Williams, S. D., Parker, E. D., & Jamieson, L. M. (2010). Oral health-related quality of life among rural-dwelling indigenous Australians. Australian Dental Journal, 55(2), 170–176.
Devlin, N., Hansen, P., & Herbison, P. (2000). Variations in self-reported health status: Results from a New Zealand survey. The New Zealand Medical Journal, 113(1123), 517.
Ware, J. E., & Kosinski, M. (2001). Interpreting SF-36 summary health measures: A response. Quality of Life Research, 10(5), 405–413.
Ware, J. E., & Gandek, B. (1998). Overview of the SF-36 health survey and the international quality of life assessment (IQOLA) project. Journal of Clinical Epidemiology, 51(11), 903–912.
Gao, Y., et al. (2014). A cost-consequences analysis of a midwifery group practice for Aboriginal mothers and infants in the top end of the Northern Territory, Australia. Midwifery, 30(4), 447.
Jan, S., et al. (2004). An holistic economic evaluation of an aboriginal community-controlled midwifery programme in Western Sydney. Journal of Health Services Research and Policy, 9(1), 14–21.
Brazier, J., McCabe, C., & Edlin, R. (2004). Health economics and cost consequences analysis: A step back in time. BMJ, 329, 1233.
Cantril, H. (1965). Patterns of human concerns. New Brunswick: Rutgers University Press.
Ferrell, B. R., Grant, M. M., Funk, B., OtisGreen, S., & Garcia, N. (1997). Quality of life in breast cancer survivors as identified by focus groups. Psychooncology, 6(1), 13–23.
Huntington NL, et al. (2011). Development and validation of a measure of pediatric oral health-related quality of life: The POQL. Journal of Public Health Dentistry 71(3), 185–193.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Angell, B., Muhunthan, J., Eades, AM. et al. The health-related quality of life of Indigenous populations: a global systematic review. Qual Life Res 25, 2161–2178 (2016). https://doi.org/10.1007/s11136-016-1311-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-016-1311-9