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Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study

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Abstract

Objectives

No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable.

Methods

Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to ‘think aloud’) format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades.

Results

Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade.

Conclusions

Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.

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References

  1. United Nations Department of Economic and Social Affairs, Population Division (2020). World population ageing 2020 highlights: living arrangements of older persons (ST/ESA/SER. A/451)

  2. Australian Institute of Health and Welfare. Admitted patient care 2017–18: Australian hospital statistics. Canberra: Australian Government; 2019.

    Google Scholar 

  3. World Health Organisation. Integrated care for older people. Geneva: World Health Organisation; 2018.

    Google Scholar 

  4. Australian Institute of Health and Welfare. Gen aged care data: government spending on aged care. Canberra: Australian Government; 2020.

    Google Scholar 

  5. Department of Health and Aged Care. New residential aged care quality indicators. Australian Government, Canberra, 21 Sept. 2021.

  6. Agarwal A, Pain T, Levesque J, et al. Patient-reported outcome measures (PROMs) to guide clinical care: recommendations and challenges. Med J Aust. 2022;216(1):9–11.

    Article  PubMed  Google Scholar 

  7. Sabah S, Knight R, Alvand A, Beard D, Price A. Early patient-reported outcomes from primary hip and knee arthroplasty have improved over the past seven years: an analysis of the NHS PROMs dataset. Bone Jt J. 2022;104-B(6):687–95.

    Article  Google Scholar 

  8. Organisation for Economic Cooperation and Development (OECD). All hands on deck: Co-developing the first international survey of people living with chronic conditions - Stakeholder engagement in the design, development, and field trial implementation of the PaRIS survey, OECD Health Working Paper No. 149, Jan. 2023.

  9. Ernstsson O, Janssen M, Heintz A. Collection and use of EQ-5D for follow-up, decision-making, and quality improvement in health care-the case of the Swedish National Quality Registries. J Patient Report Outcomes. 2020;4:78.

    Article  Google Scholar 

  10. Dean S, Al Sayah F, Johnson J. Measuring value in healthcare from a patients' perspective. J Patient Report Outcomes. 2021;5(Suppl 2):88.

    Article  Google Scholar 

  11. Timmons S, Manning E, Barrett A, et al. Dementia in older people admitted to hospital: a regional multi-hospital observational study of prevalence, associations and case recognition. Age Ageing. 2015;44(6):993–9.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Australian Institute of Health and Welfare. Dementia in Australia. Canberra: Australian Government; 2023.

    Google Scholar 

  13. O’Shea E, Hopper L, Marques M, et al. A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study. Aging Ment Health. 2020;24(1):162–70.

    Article  PubMed  Google Scholar 

  14. Sousa M, Santos R, Simoes P, Conde-Sala J, Dourado M. Discrepancies between Alzheimer’s disease patients’ and caregivers’ ratings about patients’ quality of life. Alzheimer Dis Assoc Disord. 2018;32(3):240–6.

    Article  PubMed  Google Scholar 

  15. Hutchinson C, Worley A, Khadka J, Milte R, Cleland J, Ratcliffe J. Do we agree or disagree? A systematic review of the application of preference-based instruments in self and proxy reporting of quality of life in older people. Soc Sci Med. 2022;305: 115046.

    Article  PubMed  Google Scholar 

  16. Ayton D, Gardam M, Pritchard E, et al. Patient-reported outcome measures to inform care of people with dementia-a systematic scoping review. The Gerontologist. 2021;61(5):e185–94.

    Article  PubMed  Google Scholar 

  17. Brazier J, Ratcliffe J, Salomon J, Tsuchiya A. Measuring and valuing health benefits for economic evaluation. 2nd ed. Oxford: Oxford University Press; 2017.

    Google Scholar 

  18. Herdman M, Gudex C, Llloyd A, Janssen M, Kind P, Parkin D, Bonszel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20:1727–36.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  19. Lay K, Crocker M, Engel L, Ratcliffe J, Charlton S, Hutchinson C. How do older adults receiving aged care services understand and respond to the EQ-5D-5L? A think aloud study in residential care. Qual Health Res. 2023;32(11):3161–70.

    Google Scholar 

  20. Milte R, Crocker M, Lay K, Ratcliffe J, Mulhern B, Norman R, Viney R, Khadka J. Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology. Qual Life Res. 2023;32(12):3557–69.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Hennink M, Kaiser B, Marconi V. Code saturation versus meaning saturation: how many interviews are enough? Qual Health Res. 2017;27(4):591–608.

    Article  PubMed  Google Scholar 

  22. Wang K, Barr C, Norman R, George S, Whitehead C, Ratcliffe J. Using eye tracking technology with older people in memory clinics to investigate the impact of mild cognitive impairment on choices for EQ-5D-5L health states preferences. Appl Health Econ Health Policy. 2021;19(1):111–21.

    Article  PubMed  Google Scholar 

  23. Cullen B, Evans J, Coen R, et al. A review of screening tests for cognitive impairment. J Neurol Neurosurg Psychiatry. 2007;78:790–9.

    Article  PubMed  Google Scholar 

  24. Kahle-Wrobleski K, Corrada M, Li B, Kawas C. Sensitivity and specificity of the Mini-Mental State Examination for identifying dementia in the oldest-old: the 90+ Study. J Am Geriatr Soc. 2007;55(2):284–9.

    Article  PubMed  PubMed Central  Google Scholar 

  25. National Institute for Health and Care Excellence. Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. Technology appraisal guidance June 2018.

  26. Van den Haak M, De Jong M, Schellnes P. Retrospective vs concurrent think aloud protocols: testing the usability of an online library catalogue. Behav Inform Technol. 2003;22(5):339–51.

    Article  Google Scholar 

  27. Whitty J, Walker R, Golenko X, Ratcliffe J. A think aloud study comparing the validity and acceptability of discrete choice and best worst scaling methods. PLoS ONE. 2014;9(4):e90635.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Tobii Pro. Tobii Pro Eye Tracker Manager. 2017. https://www.tobiipro.com/product-listing/eye-tracker-manager/. Accessed 12 July 2023.

  29. Staub A, Rayner K. Eye movements and on-line comprehension processes. In: Gaskill G, editor. the Oxford Handbook of psycholinguistics. Oxford University Press; 2007. p. 327–42.

    Google Scholar 

  30. Guerriero C, Abrines Jaume N, Diaz-Ordaz K, Brown K, Wray J, Ashworth J, Abbiss M, Cairns J. Using animation to self-report health: a randomized experiment with children. The Patient. 2020;13:175–88.

    Article  PubMed  Google Scholar 

  31. Hutchinson C, Ratcliffe J, Cleland J, Walker R, Milte R, McBain C, Corlis M, Cornell V, Khadka J. The integration of mixed methods data to develop the quality of life-aged care consumers (QOL-ACC) instrument. BMC Geriatr. 2021;21(1):702.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Keetharuth A, Taylor Buck E, Acquadro C, Conway K, Connell J, Barkham M, Carlton J, Ricketts T, Barber R, Brazier J. Integrating qualitative and quantitative data in the development of outcome measures: the case of the recovering quality of life (ReQoL) measures in mental health populations. Int J Environ Res Public Health. 2018;15(7):1342.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Tourangeau R, Bradburn N. The psychology of survey response. In: Marsden P, Wright J, editors. Handbook of survey research. 2nd ed. Emerald publishing group; 2009. p. 315–46.

    Google Scholar 

  34. Beer C, Flicker L, Horner B, et al. Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: a cross sectional study. PLoS ONE. 2010;5(12): e15621.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  35. Burks H, des Bordes J, Chadha R, Holmes H, Rianon N. Quality of life assessment in older adults with dementia: a systematic review. Dement Geriatr Cognit Disord. 2021;50:103–10.

    Article  Google Scholar 

  36. Neumann P, Sander G, Russell L, Seigel J, Ganiats T. Cost-effectiveness in health and medicine. Oxford, UK: Oxford University Press; 2016.

    Book  Google Scholar 

  37. Basch E. New frontiers in patient-reported outcomes: adverse event reporting, comparative effectiveness, and quality assessment. Annu Rev Med. 2014;65:307–17.

    Article  CAS  PubMed  Google Scholar 

  38. Lavallee D, Chenok K, Love R, Petersen C, et al. Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Aff. 2016;35:575–82.

    Article  Google Scholar 

  39. US Preventive Services Task Force. Screening for cognitive impairment in older adults. US Preventive Services Task Force Recommendation Statement. JAMA. 2020;323(8):757–63.

    Article  Google Scholar 

  40. World Health Organisation and Alzheimers Diseases International. Dementia: a public health priority. Berlin: World Health Organisation; 2012.

    Google Scholar 

  41. Griffiths A, Smith S, Martin A, Meads D, Kelley R, Surr C. Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes. Qual Life Res. 2020;29:463–72.

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank all the older people who generously gave up their time to participate in this study.

Author information

Authors and Affiliations

  1. Health and Social Care Economics Group, Caring Futures Institute, Flinders University, Bedford Park, Australia

    Julie Ratcliffe, Kiri Lay, Matthew Crocker, Rachel Milte, Claire Hutchinson & Jyoti Khadka

  2. Monash University Health Economics Group (MUHEG), School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia

    Lidia Engel

  3. Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada

    David G. T. Whitehurst

  4. Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, Australia

    Brendan Mulhern & Rosalie Viney

  5. School of Population Health, Curtin University, Perth, Australia

    Richard Norman

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  1. Julie Ratcliffe
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  2. Kiri Lay
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  3. Matthew Crocker
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  4. Lidia Engel
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  5. Rachel Milte
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Corresponding author

Correspondence to Julie Ratcliffe.

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Funding

This work was supported by a research grant awarded by the EuroQoL Foundation.

Contributors

JR, LE, RM, CH, JK, DW, BM, RV and RN conceptualised this study. KL and MC led the study design and analysis with contributions from JR, LE, RM, CH, JK, DW, BM, RV and RN. JR wrote the first draft. All authors provided feedback on the first draft and agreed on the final draft. All authors reviewed and approved the final amendments. JR acts as guarantor.

Competing Interests

All authors declare no conflicts of interest.

Ethical Approval

This study was approved by the Social and Behavioural Research Ethics Committee at Flinders University (approval no: 6732).

Data Availability Statement

The dataset underpinning this research is available upon request from the study authors.

Supplementary Information

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Supplementary file1 (DOCX 713 KB)

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Ratcliffe, J., Lay, K., Crocker, M. et al. Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study. Patient 17, 53–64 (2024). https://doi.org/10.1007/s40271-023-00655-6

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