US Department of Health and Human Services, Food and Drug Administration. (2009). Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Silver Spring.
European Medicines Agency. (2016). Appendix 2 to the guideline on the evaluation of anticancer medicinal products in man: The use of patient-reported outcome (PRO) measures in oncology studies. European Medicines Agency.
Fitriana, T. S., Purba, F. D., Stolk, E., & Busschbach, J. J. V. (2022). EQ-5D-Y-3L and EQ-5D-Y-5L proxy report: Psychometric performance and agreement with self-report. Health and Quality of Life Outcomes, 20(1), Article 88. https://doi.org/10.1186/s12955-022-01996-w
Article PubMed PubMed Central Google Scholar
Evans, C. J., Benalia, H., Preston, N. J., Grande, G., Gysels, M., Short, V., Daveson, B. A., Bausewein, C., Todd, C., Higginson, I. J., Morecare. (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. https://doi.org/10.1016/j.jpainsymman.2013.01.010
Article PubMed PubMed Central Google Scholar
Sheehan, B. D., Lall, R., Stinton, C., Mitchell, K., Gage, H., Holland, C., & Katz, J. (2012). Patient and proxy measurement of quality of life among general hospital in-patients with dementia. Aging and Mental Health, 16(5), 603–607. https://doi.org/10.1080/13607863.2011.653955
Roydhouse, J. K., Cohen, M. L., Eshoj, H. R., Corsini, N., Yucel, E., Rutherford, C., Wac, K., Berrocal, A., Lanzi, A., Nowinski, C., Roberts, N., Kassianos, A. P., Sebille, V., King, M. T., & Mercieca-Bebber, R. (2022). The use of proxies and proxy-reported measures: A report of the International Society for quality of life research (ISOQOL) proxy task force. Quality of Life Research, 31(2), 317–327. https://doi.org/10.1007/s11136-021-02937-8
Sebille, V., Dubuy, Y., Feuillet, F., Blanchin, M., Roquilly, A., & Cinotti, R. (2023). Does differential item functioning jeopardize the comparability of health-related quality of life assessment between patients and proxies in patients with moderate-to-severe traumatic brain injury? Neurocritical Care, 39(2), 339–347. https://doi.org/10.1007/s12028-023-01705-5
Hawkins, M., Elsworth, G. R., Nolte, S., & Osborne, R. H. (2021). Validity arguments for patient-reported outcomes: Justifying the intended interpretation and use of data. Journal of Patient-Reported Outcomes, 5(1), Article 64. https://doi.org/10.1186/s41687-021-00332-y
Article PubMed PubMed Central Google Scholar
Lapin, B. R., Thompson, N. R., Schuster, A., & Katzan, I. L. (2019). Patient versus proxy response on global health scales: No meaningful DIFference. Quality of Life Research, 28(6), 1585–1594. https://doi.org/10.1007/s11136-019-02130-y
Whynes, D. K., Sprigg, N., Selby, J., Berge, E., Bath, P. M., & Investigators, E. (2013). Testing for differential item functioning within the EQ-5D. Medical Decision Making, 33(2), 252–260. https://doi.org/10.1177/0272989X12465016
Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H. C. W., & Mokkink, L. B. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: A Delphi study. Quality of Life Research, 27(5), 1159–1170. https://doi.org/10.1007/s11136-018-1829-0
Article CAS PubMed PubMed Central Google Scholar
Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., Schwartz, C., Revicki, D. A., Moinpour, C. M., McLeod, L. D., Lyons, J. C., Lenderking, W. R., Hinds, P. S., Hays, R. D., Greenhalgh, J., Gershon, R., Feeny, D., Fayers, P. M., Cella, D., … Butt, Z. (2013). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research, 22(8), 1889–1905. https://doi.org/10.1007/s11136-012-0344-y
Peipert, J. D., Chapman, R., Shaunfield, S., Kallen, M. A., Schalet, B. D., & Cella, D. (2022). Do you recall?: Results from a within-person recall study of the patient-reported outcomes measurement information system (PROMIS) short form v2.0—Physical function 8c. Value in Health, 25(2), 161–166. https://doi.org/10.1016/j.jval.2021.08.011
Shi, Q., Wang, X. S., Mendoza, T. R., Pandya, K. J., & Cleeland, C. S. (2009). Assessing persistent cancer pain: A comparison of current pain ratings and pain recalled from the past week. Journal of Pain and Symptom Management, 37(2), 168–174. https://doi.org/10.1016/j.jpainsymman.2008.02.009
Mendoza, T. R., Dueck, A. C., Bennett, A. V., Mitchell, S. A., Reeve, B. B., Atkinson, T. M., Li, Y., Castro, K. M., Denicoff, A., Rogak, L. J., Piekarz, R. L., Cleeland, C. S., Sloan, J. A., Schrag, D., & Basch, E. (2017). Evaluation of different recall periods for the US National Cancer Institute’s PRO-CTCAE. Clinical Trials (London, England), 14(3), 255–263. https://doi.org/10.1177/1740774517698645
Article PubMed PubMed Central Google Scholar
Condon, D. M., Chapman, R., Shaunfield, S., Kallen, M. A., Beaumont, J. L., Eek, D., Mitra, D., Benjamin, K. L., McQuarrie, K., Liu, J., Shaw, J. W., Martin Nguyen, A., Keating, K., & Cella, D. (2020). Does recall period matter? Comparing PROMIS((R)) physical function with no recall, 24-hr recall, and 7-day recall. Quality of Life Research, 29(3), 745–753. https://doi.org/10.1007/s11136-019-02344-0
Norquist, J. M., Girman, C., Fehnel, S., DeMuro-Mercon, C., & Santanello, N. (2012). Choice of recall period for patient-reported outcome (PRO) measures: Criteria for consideration. Quality of Life Research, 21(6), 1013–1020. https://doi.org/10.1007/s11136-011-0003-8
Stull, D. E., Leidy, N. K., Parasuraman, B., & Chassany, O. (2009). Optimal recall periods for patient-reported outcomes: Challenges and potential solutions. Current Medical Research and Opinion, 25(4), 929–942. https://doi.org/10.1185/03007990902774765
Mpundu-Kaambwa, C., Bulamu, N., Lines, L., Chen, G., Dalziel, K., Devlin, N., Ratcliffe, J., Quality of Life in Kids: Key Evidence for Decision Makers in Australia Project team. (2022). A systematic review of international guidance for self-report and proxy completion of child-specific utility instruments. Value in Health. https://doi.org/10.1016/j.jval.2022.04.1723
Lynn Snow, A., Cook, K. F., Lin, P. S., Morgan, R. O., & Magaziner, J. (2005). Proxies and other external raters: Methodological considerations. Health Services Research, 40(5 Pt 2), 1676–1693. https://doi.org/10.1111/j.1475-6773.2005.00447.x
Article CAS PubMed PubMed Central Google Scholar
Menon, G., Bickart, B., Sudman, S., & Blair, J. (1995). How well do you know your partner? Strategies for formulating proxy-reports and their effects on convergence to self-reports. Journal of Marketing Research, 32(1), 75–84.
Dashen, M. (2000). The effects of retention intervals on self- and proxy reports of purchases. Memory, 8(3), 129–143. https://doi.org/10.1080/096582100387560
Article CAS PubMed Google Scholar
Overbey, K. N., Schwab, K. J., & Exum, N. G. (2019). Comparison of 1-week and 2-week recall periods for caregiver-reported diarrhoeal illness in children, using nationally representative household surveys. International Journal of Epidemiology, 48(4), 1228–1239. https://doi.org/10.1093/ije/dyz043
Article PubMed PubMed Central Google Scholar
Feikin, D. R., Audi, A., Olack, B., Bigogo, G. M., Polyak, C., Burke, H., Williamson, J., & Breiman, R. F. (2010). Evaluation of the optimal recall period for disease symptoms in home-based morbidity surveillance in rural and urban Kenya. International Journal of Epidemiology, 39(2), 450–458. https://doi.org/10.1093/ije/dyp374
Article PubMed PubMed Central Google Scholar
Arnold, B. F., Galiani, S., Ram, P. K., Hubbard, A. E., Briceno, B., Gertler, P. J., & Colford, J. M., Jr. (2013). Optimal recall period for caregiver-reported illness in risk factor and intervention studies: A multicountry study. American Journal of Epidemiology, 177(4), 361–370. https://doi.org/10.1093/aje/kws281
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. https://doi.org/10.1097/01.mlr.0000160419.27642.a8
Article PubMed PubMed Central Google Scholar
Silarova, B., Rand, S., Towers, A. M., & Jones, K. (2023). Feasibility, validity and reliability of the ASCOT-Proxy and ASCOT-Carer among unpaid carers of people living with dementia in England. Health and Quality of Life Outcomes, 21(1), 54. https://doi.org/10.1186/s12955-023-02122-0
Article PubMed PubMed Central Google Scholar
Cheng, L. J., Engel, L., Chen, L. A., Soh, S. Z. Y., Koh, G. C., & Luo, N. (2024). Using EQ-5D for proxy assessment of health-related quality of life in residential care facilities: A systematic review of feasibility and psychometric properties. Journal of the American Medical Directors Association, 25(6), Article 104870. https://doi.org/10.1016/j.jamda.2023.10.020
Comments (0)