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Quality of Life Research
Gepubliceerd in: Quality of Life Research 2/2022

12-07-2021 | Review

The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force

Auteurs: Jessica K. Roydhouse, Matthew L. Cohen, Henrik R. Eshoj, Nadia Corsini, Emre Yucel, Claudia Rutherford, Katarzyna Wac, Allan Berrocal, Alyssa Lanzi, Cindy Nowinski, Natasha Roberts, Angelos P. Kassianos, Veronique Sebille, Madeleine T. King, Rebecca Mercieca-Bebber, the ISOQOL Proxy Task Force and the ISOQOL Board of Directors

Gepubliceerd in: Quality of Life Research | Uitgave 2/2022

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Abstract

Aims

Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations.

Methods

We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use.

Results

The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures.

Discussion

Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies.

Systematic review registration

PROSPERO No. CRD42018103179
volgende artikel Self-reported quality of life following stroke: a systematic review of instruments with a focus on their psychometric properties
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Literatuur
1.
2.
Jones, J. M., McPherson, C. J., Zimmermann, C., Rodin, G., Le, L. W., & Cohen, S. R. (2011). Assessing agreement between terminally ill cancer patients’ reports of their quality of life and family caregiver and palliative care physician proxy ratings. Journal of Pain and Symptom Management, 42(3), 354–365.PubMedCrossRef
3.
Cohen, M. L., & Hula, W. D. (2020). Patient-reported outcomes and evidence-based practice in speech-language pathology. American Journal of Speech-Language Pathology, 29(1), 357–370.PubMedCrossRef
4.
Food and Drug Administration. (2009). Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Silver Spring, MD: Food and Drug Administration. Retrieved December 1, 2020, from https://​www.​fda.​gov/​media/​77832/​download
5.
6.
Powers, J. H., 3rd., Patrick, D. L., Walton, M. K., Marquis, P., Cano, S., Hobart, J., Isaac, M., Vamvakas, S., Slagle, A., Molsen, E., & Burke, L. B. (2017). Clinician-reported outcome assessments of treatment benefit: Report of the ISPOR clinical outcome assessment emerging good practices task force. Value in Health, 20(1), 2–14.PubMedPubMedCentralCrossRef
7.
Food and Drug Administration. (2018). Attachment to discussion document for patient-focused drug development public workshop on guidance 3: Select, develop or modify fit-for-purpose clinical outcome assessments—Appendices 2018. Silver Spring, MD: Food and Drug Administration. Retrieved August 4, 2020, from https://​www.​fda.​gov/​media/​116281/​download
8.
Hanson, L. C., Bennett, A. V., Jonsson, M., Kelley, A., Ritchie, C., Saliba, D., Teno, J., & Zimmerman, S. (2020). Selecting outcomes to ensure pragmatic trials are relevant to people living with dementia. Jounal of American Geriatrics Society, 68(Suppl 2), S55–S61.
9.
Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care, 43(5), 493–499.PubMedPubMedCentralCrossRef
10.
Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Rajmil, L., Pleil, A. M., & Bullinger, M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in Health, 16(4), 461–479.PubMedCrossRef
11.
De Los Reyes, A., Thomas, S. A., Goodman, K. L., & Kundey, S. M. (2013). Principles underlying the use of multiple informants’ reports. Annual Review of Clinical Psychology, 9, 123–149.PubMedCrossRef
12.
Grill, J. D., Zhou, Y., Karlawish, J., & Elashoff, D. (2015). Frequency and impact of informant replacement in Alzheimer disease research. Alzheimer Disease and Associated Disorders, 29(3), 242–248.PubMedPubMedCentralCrossRef
13.
Gruber-Baldini, A. L., Shardell, M., Lloyd, K. D., & Magaziner, J. (2012). Use of proxies and informants. In A. B. Newman & J. A. Cauley (Eds.), The epidemiology of aging (pp. 81–90). Springer.CrossRef
14.
Mercieca-Bebber, R., Williams, D., Tait, M. A., Rutherford, C., Busija, L., Roberts, N., Wilson, M., Sundaram, C. S., & Roydhouse, J. (2019). Trials with proxy-reported outcomes registered on the Australian New Zealand clinical trials registry (ANZCTR). Quality of Life Research, 28(4), 955–962.PubMedCrossRef
15.
Evans, C. J., Benalia, H., Preston, N. J., Grande, G., Gysels, M., Short, V., Daveson, B. A., Bausewein, C., Todd, C., & Higginson, I. J. (2013). The selection and use of outcome measures in palliative and end-of-life care research: the MORECare international consensus workshop. Journal of Pain and Symptom Management, 46(6), 925–937.PubMedPubMedCentralCrossRef
16.
Graham, C. (2016). Incidence and impact of proxy response in measuring patient experience: Secondary analysis of a large postal survey using propensity score matching. International Journal for Quality in Health Care, 28(2), 246–252.PubMedCrossRef
17.
Bjertnaes, O. (2014). Patient-reported experiences with hospitals: Comparison of proxy and patient scores using propensity-score matching. International Journal for Quality in Health Care, 26(1), 34–40.PubMedCrossRef
18.
Todorov, A., & Kirchner, C. (2000). Bias in proxies’ reports of disability: Data from the National Health Interview Survey on disability. American Journal of Public Health, 90(8), 1248–1253.PubMedPubMedCentralCrossRef
19.
Chawla, N., Urato, M., Ambs, A., Schussler, N., Hays, R. D., Clauser, S. B., Zaslavsky, A. M., Walsh, K., Schwartz, M., Halpern, M., Gaillot, S., Goldstein, E. H., & Arora, N. H. (2015). Unveiling SEER-CAHPS(R): a new data resource for quality of care research. Jounal of General Internal Medicine, 30(5), 641–650.CrossRef
20.
Sneeuw, K. C., Aaronson, N. K., Sprangers, M. A., Detmar, S. B., Wever, L. D., & Schornagel, J. H. (1998). Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. Journal of Clinical Epidemiology, 51(7), 617–631.PubMedCrossRef
21.
Sneeuw, K. C., Aaronson, N. K., de Haan, R. J., & Limburg, M. (1997). Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke, 28(8), 1541–1549.PubMedCrossRef
22.
Sneeuw, K. C., Aaronson, N. K., Osoba, D., Muller, M. J., Hsu, M. A., Yung, W. K. A., Brada, M., & Newlands, E. S. (1997). The use of significant others as proxy raters of the quality of life of patients with brain cancer. Medical Care, 35(5), 490–506.PubMedCrossRef
23.
Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and health utilities index. Stroke, 35(2), 607–612.PubMedCrossRef
24.
Moher, D., Shamseer, L., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., & Stewart, L. A. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews, 4, 1.PubMedPubMedCentralCrossRef
25.
Lobchuk, M. M., & Degner, L. F. (2002). Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: Trends and measurement issues. Cancer Nursing, 25(5), 358–374.PubMedCrossRef
26.
McPherson, C. J., & Addington-Hall, J. M. (2003). Judging the quality of care at the end of life: Can proxies provide reliable information? Social Science and Medicine, 56(1), 95–109.PubMedCrossRef
27.
Sneeuw, K. C., Sprangers, M. A., & Aaronson, N. K. (2002). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. Journal of Clinical Epidemiology, 55(11), 1130–1143.PubMedCrossRef
28.
Sprangers, M. A., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45(7), 743–760.PubMedCrossRef
29.
Tang, S. T., & McCorkle, R. (2002). Use of family proxies in quality of life research for cancer patients at the end of life: A literature review. Cancer Investigation, 20(7–8), 1086–1104.PubMedCrossRef
30.
von Essen, L. (2004). Proxy ratings of patient quality of life–factors related to patient-proxy agreement. Acta Oncologica, 43(3), 229–234.CrossRef
31.
Roydhouse, J. K., & Wilson, I. B. (2017). Systematic review of caregiver responses for patient health-related quality of life in adult cancer care. Quality of Life Research, 26(8), 1925–1954.PubMedPubMedCentralCrossRef
32.
Liebzeit, D., King, B., & Bratzke, L. (2018). Measurement of function in older adults transitioning from hospital to home: An integrative review. Geriatric Nursing, 39(3), 336–343.PubMedCrossRef
33.
Mayo, N. E., Figueiredo, S., Ahmed, S., & Bartlett, S. J. (2017). Montreal accord on patient-reported outcomes (PROs) use series—Paper 2: Terminology proposed to measure what matters in health. Journal of Clinical Epidemiology, 89, 119–124.PubMedCrossRef
34.
McKown, S., Acquadro, C., Anfray, C., Arnold, B., Eremenco, S., Giroudet, C., Martin, M., & Weiss, D. (2020). Good practices for the translation, cultural adaptation, and linguistic validation of clinician-reported outcome, observer-reported outcome, and performance outcome measures. Journal of Patient Reported Outcomes, 4(1), 89.PubMedPubMedCentralCrossRef
35.
Mayo, N. E. (Ed.). (2015). Dictionary of quality of life and health outcomes measurement. ISOQOL.
36.
Cappelleri, J. C., Zou, K. H., Bushmakin, A. G., Alvir, J. M. J., Alemayehu, D., & Symonds, T. (2014). Patient-reported outcomes: measurement, implementation and interpretation. CRC Press.
37.
Caiels, J., Rand, S., Crowther, T., Collins, G., & Forder, J. (2019). Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: Developing a proxy version of the adult social care outcomes toolkit (ASCOT). BMC Health Services Research, 19, 201.PubMedPubMedCentralCrossRef
38.
Moher, D., Pham, B., Klassen, T. P., Schulz, K. F., Berlin, J. A., Jadad, A. R., & Liberati, A. (2000). What contributions do languages other than English make on the results of meta-analyses? Journal of Clinical Epidemiology, 53(9), 964–972.PubMedCrossRef
39.
Kinghorn, P., & Afentou, N. (2020). Proxy responses to ICECAP-A: exploring variation across multiple proxy assessments of capability well-being for the same individuals. PLoS ONE, 15(7), e0236584.PubMedPubMedCentralCrossRef
40.
Roydhouse, J. K., Gutman, R., Keating, N. L., Mor, V., & Wilson, I. B. (2018). Differences between proxy and patient assessments of cancer care experiences and quality ratings. Health Services Research, 53(2), 919–943.PubMedCrossRef
41.
Roydhouse, J. K., Gutman, R., Keating, N. L., Mor, V., & Wilson, I. B. (2018). Proxy and patient reports of health-related quality of life in a national cancer survey. Health and Quality of Life Outcomes, 16(1), 6.PubMedPubMedCentralCrossRef
42.
Roydhouse, J. K., Gutman, R., Wilson, I. B., Kehl, K. L., & Keating, N. L. (2020). Patient and proxy reports regarding the experience of treatment decision-making in cancer care. Psycho-Oncology, 29(11), 1943–1950.PubMedPubMedCentralCrossRef
43.
Smith, G. E., & Bondi, M. W. (2013). Mild cognitive impairment and dementia: definitions, diagnosis, and treatment. Oxford University Press.
44.
Alzheimers Association. (2020). 2020 Alzheimer’s disease facts and figures. Alzheimers Dement.
45.
Aarsland, D., Zaccai, J., & Brayne, C. (2005). A systematic review of prevalence studies of dementia in Parkinson’s disease. Movement Disorders, 20(10), 1255–1263.PubMedCrossRef
Metagegevens
Titel
The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force
Auteurs
Jessica K. Roydhouse
Matthew L. Cohen
Henrik R. Eshoj
Nadia Corsini
Emre Yucel
Claudia Rutherford
Katarzyna Wac
Allan Berrocal
Alyssa Lanzi
Cindy Nowinski
Natasha Roberts
Angelos P. Kassianos
Veronique Sebille
Madeleine T. King
Rebecca Mercieca-Bebber
the ISOQOL Proxy Task Force and the ISOQOL Board of Directors
Publicatiedatum
12-07-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 2/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02937-8

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