Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 6/2019

13-02-2019

Patient versus proxy response on global health scales: no meaningful DIFference

Auteurs: Brittany R. Lapin, Nicolas R. Thompson, Andrew Schuster, Irene L. Katzan

Gepubliceerd in: Quality of Life Research | Uitgave 6/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

Assessment of outcomes from a proxy is often substituted for the patient’s self-report when the patient is unable or unwilling to report their status. Research has indicated that proxies over-report symptoms on the patient’s behalf. This study aimed to quantify the extent of proxy-introduced bias on the Patient-Reported Outcomes Measurement Information System Global Health (PROMIS GH) scale for mental (GMH) and physical (GPH) scores.

Methods

This retrospective cohort study included incident stroke patients seen in a cerebrovascular clinic who completed PROMIS GH between 10/12/15 and 6/6/18. Differential item functioning (DIF) evaluated measurement invariance of patient versus proxy responses. DIF impact was assessed by comparing the initial score to the DIF-adjusted score. Subgroup analyses evaluated DIF within strata of stroke severity, measured by modified Rankin Scale (≤ 1, 2, 3+), and time since stroke (≤ 30, 31–90, > 90 days).

Results

Of 1351 stroke patients (age 60.5 ± 14.9, 45.1% female), proxy help completing PROMIS GH was required by 406 patients (30.1%). Proxies indicated significantly worse response to all items. No items for GMH or GPH were identified as having meaningful DIF. In subgroup analyses, no DIF was found by severity or 31–90 days post-stroke. In patients within 30 and > 90 days of stroke, DIF was detected for 2 items. Accounting for DIF had negligible effects on scores.

Conclusions

Our findings revealed the overestimation of symptoms by proxies is a real difference and not the result of measurement non-invariance. PROMIS GH items do not perform differently or have spuriously inflated severity estimates when administered to proxies instead of patients.

Literatuur
  1. Williams, L. S., Bakas, T., Brizendine, E., Plue, L., Tu, W., Hendrie, H., et al. (2006). How valid are family proxy assessments of stroke patients’ health-related quality of life? Stroke, 37(8), 2081–2085. https://​doi.​org/​10.​1161/​01.​STR.​0000230583.​10311.​9f.View ArticlePubMed
  2. Pedersen, P. M., Jorgensen, H. S., Nakayama, H., Raaschou, H. O., & Olsen, T. S. (1995). Aphasia in acute stroke: Incidence, determinants, and recovery. Annals of Neurology, 38(4), 659–666. https://​doi.​org/​10.​1002/​ana.​410380416.View ArticlePubMed
  3. Duncan, P. W., Lai, S. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the Stroke Impact Scale. Stroke, 33(11), 2593–2599.View ArticlePubMed
  4. Epstein, A. M., Hall, J. A., Tognetti, J., Son, L. H., & Conant, L. Jr. (1989). Using proxies to evaluate quality of life. Can they provide valid information about patients’ health status and satisfaction with medical care? Medical Care, 27(3 Suppl), S91–S98.View ArticlePubMed
  5. Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., & Sandercock, P. (1997). Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke, 28(10), 1883–1887.View ArticlePubMed
  6. Kozlowski, A. J., Singh, R., Victorson, D., Miskovic, A., Lai, J. S., Harvey, R. L., et al. (2015). Agreement between responses from community-dwelling persons with stroke and their proxies on the NIH neurological quality of life (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation, 96(11), 1986–1992 e1914. https://​doi.​org/​10.​1016/​j.​apmr.​2015.​07.​005.View ArticlePubMedPubMed Central
  7. Hays, R. D., Vickrey, B. G., Hermann, B. P., Perrine, K., Cramer, J., Meador, K., et al. (1995). Agreement between self reports and proxy reports of quality of life in epilepsy patients. Quality of Life Research, 4(2), 159–168.View ArticlePubMed
  8. 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.View ArticlePubMedPubMed Central
  9. Oczkowski, C., & O’Donnell, M. (2010). Reliability of proxy respondents for patients with stroke: A systematic review. Journal of Stroke and Cerebrovascular Diseases, 19(5), 410–416. https://​doi.​org/​10.​1016/​j.​jstrokecerebrova​sdis.​2009.​08.​002.View ArticlePubMed
  10. Brandon, T. G., Becker, B. D., Bevans, K. B., & Weiss, P. F. (2017). Patient-reported outcomes measurement information system tools for collecting patient-reported outcomes in children with Juvenile Arthritis. Arthritis Care & Research, 69(3), 393–402. https://​doi.​org/​10.​1002/​acr.​22937.View Article
  11. Carod-Artal, F. J., Coral, F., Trizotto, L. Stieven, D., & Moreira, M., C (2009). Self- and proxy-report agreement on the Stroke Impact Scale. Stroke, 40(10), 3308–3314. https://​doi.​org/​10.​1161/​STROKEAHA.​109.​558031.View ArticlePubMed
  12. 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. https://​doi.​org/​10.​1161/​01.​STR.​0000110984.​91157.​BD.View ArticlePubMed
  13. Hilari, K., Owen, S., & Farrelly, S. J. (2007). Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39. Journal of Neurology, Neurosurgery & Psychiatry, 78(10), 1072–1075. https://​doi.​org/​10.​1136/​jnnp.​2006.​111476.View Article
  14. Sangha, R. S., Caprio, F. Z., Askew, R., Corado, C., Bernstein, R., Curran, Y., et al. (2015). Quality of life in patients with TIA and minor ischemic stroke. Neurology, 85(22), 1957–1963. https://​doi.​org/​10.​1212/​WNL.​0000000000002164​.View ArticlePubMedPubMed Central
  15. Skolarus, L. E., Sanchez, B. N., Morgenstern, L. B., Garcia, N. M., Smith, M. A., Brown, D. L., et al. (2010). Validity of proxies and correction for proxy use when evaluating social determinants of health in stroke patients. Stroke, 41(3), 510–515. https://​doi.​org/​10.​1161/​STROKEAHA.​109.​571703.View ArticlePubMedPubMed Central
  16. Weinfurt, K. P., Trucco, S. M., Willke, R. J., & Schulman, K. A. (2002). Measuring agreement between patient and proxy responses to multidimensional health-related quality-of-life measures in clinical trials. An application of psychometric profile analysis. Journal of Clinical Epidemiology, 55(6), 608–618.View ArticlePubMed
  17. Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194. https://​doi.​org/​10.​1016/​j.​jclinepi.​2010.​04.​011.View ArticlePubMedPubMed Central
  18. Katzan, I. L., Thompson, N. R., Lapin, B., & Uchino, K. (2017). Added value of patient-reported outcome measures in stroke clinical practice. Journal of the American Heart Association. https://​doi.​org/​10.​1161/​JAHA.​116.​005356.View ArticlePubMedPubMed Central
  19. Basch, E. (2014). New frontiers in patient-reported outcomes: Adverse event reporting, comparative effectiveness, and quality assessment. Annual Review of Medicine, 65, 307–317. https://​doi.​org/​10.​1146/​annurev-med-010713-141500.View ArticlePubMed
  20. Salinas, J., Sprinkhuizen, S. M., Ackerson, T., Bernhardt, J., Davie, C., George, M. G., et al. (2016). An international standard set of patient-centered outcome measures after stroke. Stroke, 47(1), 180–186. https://​doi.​org/​10.​1161/​STROKEAHA.​115.​010898.View ArticlePubMed
  21. Katzan, I. L., & Lapin, B. (2018). PROMIS GH (Patient-Reported Outcomes Measurement Information System Global Health) scale in stroke: A validation study. Stroke, 49(1), 147–154. https://​doi.​org/​10.​1161/​STROKEAHA.​117.​018766.View ArticlePubMed
  22. Katzan, I., Speck, M., Dopler, C., Urchek, J., Bielawski, K., Dunphy, C., et al. (2011). The Knowledge Program: An innovative, comprehensive electronic data capture system and warehouse. In: AMIA Annual Symposium Proceedings, 2011, p. 683–692.
  23. Hays, R. D., Bjorner, J. B., Revicki, D. A., Spritzer, K. L., & Cella, D. (2009). Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Quality of Life Research, 18(7), 873–880. https://​doi.​org/​10.​1007/​s11136-009-9496-9.View ArticlePubMedPubMed Central
  24. Liu, H., Cella, D., Gershon, R., Shen, J., Morales, L. S., Riley, W., et al. (2010). Representativeness of the patient-reported outcomes measurement information system internet panel. Journal of Clinical Epidemiology, 63(11), 1169–1178. https://​doi.​org/​10.​1016/​j.​jclinepi.​2009.​11.​021.View ArticlePubMedPubMed Central
  25. Husted, J. A., Cook, R. J., Farewell, V. T., & Gladman, D. D. (2000). Methods for assessing responsiveness: A critical review and recommendations. Journal of Clinical Epidemiology, 53(5), 459–468.View ArticlePubMed
  26. Choi, S. W., Gibbons, L. E., & Crane, P. K. (2011). Lordif: An R package for detecting differential item functioning using iterative hybrid ordinal logistic regression/item response theory and Monte Carlo simulations. Journal of Statistical Software, 39(8), 1–30.View ArticlePubMedPubMed Central
  27. Crane, P. K., Gibbons, L. E., Jolley, L., & van Belle, G. (2006). Differential item functioning analysis with ordinal logistic regression techniques. DIFdetect and difwithpar. Medical Care, 44(11 Suppl 3), S115–S123. https://​doi.​org/​10.​1097/​01.​mlr.​0000245183.​28384.​ed.View ArticlePubMed
  28. Kline, R. (2011). Principles and practice of structural equation modeling (3rd edn.). New York: Guilford Press.
  29. Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Medical Care, 45(5 Suppl 1), S22–S31. https://​doi.​org/​10.​1097/​01.​mlr.​0000250483.​85507.​04.View ArticlePubMed
  30. Rosseel, Y. (2012). lavaan: An R Package for Structural Equation Modeling. Journal of Statistical Software, 48(2), 1–36.View Article
  31. Crins, M. H. P., Terwee, C. B., Ogreden, O., Schuller, W., Dekker, P., Flens, G., et al. (2019). Differential item functioning of the PROMIS physical function, pain interference, and pain behavior item banks across patients with different musculoskeletal disorders and persons from the general population. Quality of Life Research. https://​doi.​org/​10.​1007/​s11136-018-2087-x.View ArticlePubMed
  32. Hays, R. D., Calderon, J. L., Spritzer, K. L., Reise, S. P., & Paz, S. H. (2018). Differential item functioning by language on the PROMIS((R)) physical functioning items for children and adolescents. Quality of Life Research, 27(1), 235–247. https://​doi.​org/​10.​1007/​s11136-017-1691-5.View ArticlePubMed
  33. Wanders, R. B., Wardenaar, K. J., Kessler, R. C., Penninx, B. W., Meijer, R. R., & de Jonge, P. (2015). Differential reporting of depressive symptoms across distinct clinical subpopulations: What DIFference does it make? Journal of Psychosomatic Research, 78(2), 130–136. https://​doi.​org/​10.​1016/​j.​jpsychores.​2014.​08.​014.View ArticlePubMed
  34. 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.View ArticlePubMed
  35. Ellis, B. H., Bannister, W. M., Cox, J. K., Fowler, B. M., Shannon, E. D., Drachman, D., et al. (2003). Utilization of the propensity score method: An exploratory comparison of proxy-completed to self-completed responses in the Medicare Health Outcomes Survey. Health and Quality of Life Outcomes, 1, 47. https://​doi.​org/​10.​1186/​1477-7525-1-47.View ArticlePubMedPubMed Central
  36. Howland, M., Allan, K. C., Carlton, C. E., Tatsuoka, C., Smyth, K. A., & Sajatovic, M. (2017). Patient-rated versus proxy-rated cognitive and functional measures in older adults. Patient Related Outcome Measures, 8, 33–42. https://​doi.​org/​10.​2147/​PROM.​S126919.View ArticlePubMedPubMed Central
  37. 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.View ArticlePubMedPubMed Central
Metagegevens
Titel
Patient versus proxy response on global health scales: no meaningful DIFference
Auteurs
Brittany R. Lapin
Nicolas R. Thompson
Andrew Schuster
Irene L. Katzan
Publicatiedatum
13-02-2019
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02130-y

Andere artikelen Uitgave 6/2019

Quality of Life Research 6/2019 Naar de uitgave