Top

Quality of Life Research

Gepubliceerd in:

28-01-2021

The validity of proxy responses on patient-reported outcome measures: Are proxies a reliable alternative to stroke patients’ self-report?

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

Gepubliceerd in: Quality of Life Research | Uitgave 6/2021

Abstract

Purpose

Caregivers, or proxies, often complete patient-reported outcome measures (PROMs) on behalf of patients with stroke. The objective of our study was to assess the validity and responsiveness of proxy-responses compared to patient-responses across multiple domains of health.

Methods

Stroke patients and their proxies were recruited to complete PROMs between 7/2018–11/2019. PROMs included Neuro-QoL cognitive function, PROMIS physical function, satisfaction with social roles, anxiety, fatigue, pain interference, sleep disturbance, Global Health, and PHQ-9. Internal consistency and convergent validity were compared between patient- and proxy-reported measures. Known-groups validity was assessed across levels of stroke disability. Internal responsiveness was evaluated using paired t-tests for a subset of patients who attended rehabilitation following stroke. Analyses were stratified by patients ≤ 3 vs > 3 months from stroke.

Results

This cross-sectional study included 200 stroke patients (age 62.2 ± 13.3, 41.5% female) and their proxies (age 56.5 ± 13.9, 70% female, 72% spouses). PROMs had high internal consistency and were significantly correlated for patients and proxies. Patient- and proxy-reported measures worsened with increasing stroke disability. For 34 (17%) patients who attended rehabilitation, patients self-reported improvement on 5 domains whereas proxies reported no improvement. Compared to patient self-reports, validity was worse for proxy-reports on patients ≤ 3 months but better > 3 months from stroke.

Conclusions

Both patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients ≤ 3 months from stroke but better validity for patients > 3 months from stroke. These findings justify the utilization of proxy responses in stroke patients > 3 months from stroke.

vorige artikel Identifying the minimal important difference in patient-reported outcome measures in the field of people with severe mental illness: a pre–post-analysis of the Illness Management and Recovery Programme

volgende artikel The longitudinal validity of proxy-reported CHU9D

Alleen toegankelijk voor geautoriseerde gebruikers

Mayo, N. E., Wood-Dauphinee, S., Cote, R., Durcan, L., & Carlton, J. (2002). Activity, participation, and quality of life 6 months poststroke. Archives of Physical Medicine and Rehabilitation, 83(8), 1035–1042.CrossRef

Choi-Kwon, S., & Kim, J. S. (2011). Poststroke fatigue: an emerging, critical issue in stroke medicine. International Journal of Stroke, 6(4), 328–336. https://doi.org/10.1111/j.1747-4949.2011.00624.x.CrossRefPubMed

De Wit, L., Putman, K., Baert, I., Lincoln, N. B., Angst, F., Beyens, H., et al. (2008). Anxiety and depression in the first six months after stroke. A longitudinal multicentre study. Disability and Rehabilitation, 30(24), 1858–1866. https://doi.org/10.1080/09638280701708736.CrossRefPubMed

Jonsson, A. C., Lindgren, I., Hallstrom, B., Norrving, B., & Lindgren, A. (2006). Prevalence and intensity of pain after stroke: A population based study focusing on patients’ perspectives. Journal of Neurology, Neurosurgery and Psychiatry, 77(5), 590–595. https://doi.org/10.1136/jnnp.2005.079145.CrossRefPubMed

Katzan, I. L., Thompson, N. R., Uchino, K., & Lapin, B. (2018). The most affected health domains after ischemic stroke. Neurology, 90(16), e1364–e1371. https://doi.org/10.1212/WNL.0000000000005327.CrossRefPubMed

Stewart, J. C., & Cramer, S. C. (2013). Patient-reported measures provide unique insights into motor function after stroke. Stroke, 44(4), 1111–1116. https://doi.org/10.1161/STROKEAHA.111.674671.CrossRefPubMedPubMedCentral

Ali, M., Fulton, R., Quinn, T., Brady, M., & Collaboration, V. (2013). How well do standard stroke outcome measures reflect quality of life? A retrospective analysis of clinical trial data. Stroke, 44(11), 3161–3165. https://doi.org/10.1161/STROKEAHA.113.001126.CrossRefPubMed

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, 6(7), e005356. https://doi.org/10.1161/JAHA.116.005356.CrossRefPubMedPubMedCentral

Reeves, M., Lisabeth, L., Williams, L., Katzan, I., Kapral, M., Deutsch, A., et al. (2018). Patient-Reported Outcome Measures (PROMs) for acute stroke: rationale, methods and future directions. Stroke, 49(6), 1549–1556. https://doi.org/10.1161/STROKEAHA.117.018912.CrossRefPubMed

10.

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.CrossRefPubMedPubMedCentral

11.

Cella, D., Lai, J. S., Nowinski, C. J., Victorson, D., Peterman, A., Miller, D., et al. (2012). Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology, 78(23), 1860–1867. https://doi.org/10.1212/WNL.0b013e318258f744.CrossRefPubMedPubMedCentral

12.

Katzan, I. L., Thompson, N., & Uchino, K. (2016). Innovations in stroke: the use of PROMIS and NeuroQoL scales in clinical stroke trials. Stroke, 47(2), e27-30. https://doi.org/10.1161/STROKEAHA.115.011377.CrossRefPubMed

13.

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.CrossRefPubMed

14.

Lapin, B., Thompson, N. R., Schuster, A., & Katzan, I. L. (2019). Clinical utility of patient-reported outcome measurement information system domain scales. Circulation: Cardiovascular Quality and Outcomes, 12(1), e004753. https://doi.org/10.1161/CIRCOUTCOMES.118.004753.CrossRef

15.

Katzan, I. L., Schuster, A., Bain, M., & Lapin, B. (2019). Clinical symptom profiles after mild-moderate stroke. Journal of the American Heart Association, 8(11), e012421. https://doi.org/10.1161/JAHA.119.012421.CrossRefPubMedPubMedCentral

16.

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.CrossRefPubMed

17.

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.CrossRef

18.

Carod-Artal, F. J., Ferreira Coral, L., StievenTrizotto, D., & Menezes Moreira, 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.CrossRefPubMed

19.

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.CrossRefPubMed

20.

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.CrossRefPubMedPubMedCentral

21.

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 and Psychiatry, 78(10), 1072–1075. https://doi.org/10.1136/jnnp.2006.111476.CrossRefPubMed

22.

Oczkowski, C., & O’Donnell, M. (2010). Reliability of proxy respondents for patients with stroke: A systematic review. The Journal of Stroke & Cerebrovascular Diseases, 19(5), 410–416. https://doi.org/10.1016/j.jstrokecerebrovasdis.2009.08.002.CrossRef

23.

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.CrossRef

24.

Lapin, B. R., Thompson, N. R., Schuster, A., & Katzan, I. L. (2020). Magnitude and variability of stroke patient-proxy disagreement across multiple health domains. Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2020.09.378.CrossRefPubMed

25.

Quinn, T. J., Dawson, J., & Walters, M. (2008). Dr John Rankin; his life, legacy and the 50th anniversary of the Rankin Stroke Scale. Scottish Medical Journal, 53(1), 44–47. https://doi.org/10.1258/RSMSMJ.53.1.44.CrossRefPubMed

26.

Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ-9: validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613.CrossRef

27.

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.CrossRefPubMedPubMedCentral

28.

HealthMeasures. (2020). PROMIS. Retrieved December 3, 2020, from www.healthmeasures.net.

29.

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.CrossRef

30.

Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010.CrossRefPubMed

31.

Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012.CrossRefPubMed

32.

Kline, R. (2011). Principles and practice of structural equation modeling (3rd ed.). New York: Guilford Press.

33.

Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., et al. (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.CrossRefPubMed

34.

Cicchetti, D. V., & Sparrow, S. A. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86(2), 127–137.PubMed

35.

R Core Team. (2016). R: a language and environment for statistical computing. www.R-project.org. Vienna: R Foundation for Statistical Computing.

36.

Qiu, W., Guan, H., Chen, Z., Yu, Y., Wu, H., Yu, W. S., et al. (2019). Psychometric properties of the Chinese-version Stroke and Aphasia Quality of Life Scale 39-generic version (SAQOL-39g). Topics in Stroke Rehabilitation, 26(2), 106–112. https://doi.org/10.1080/10749357.2018.1544842.CrossRefPubMed

37.

Muus, I., Petzold, M., & Ringsberg, K. C. (2009). Health-related quality of life after stroke: Reliability of proxy responses. Clinical Nursing Research, 18(2), 103–118. https://doi.org/10.1177/1054773809334912.CrossRefPubMed

38.

Schlote, A., Richter, M., Wunderlich, M. T., Poppendick, U., Moller, C., Schwelm, K., et al. (2009). WHODAS II with people after stroke and their relatives. Disability and Rehabilitation, 31(11), 855–864. https://doi.org/10.1080/09638280802355262.CrossRefPubMed

39.

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), 1986–1992e1914. https://doi.org/10.1016/j.apmr.2015.07.005.

40.

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.CrossRef

41.

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. https://doi.org/10.1016/s0895-4356(02)00479-1.CrossRefPubMed

42.

Katzan, I. L., Schuster, A., Newey, C., Uchino, K., & Lapin, B. (2018). Patient-reported outcomes across cerebrovascular event types: More similar than different. Neurology, 91(23), e2182–e2191. https://doi.org/10.1212/WNL.0000000000006626.CrossRefPubMed

43.

Dhand, A., Lang, C. E., Luke, D. A., Kim, A., Li, K., McCafferty, L., et al. (2019). Social network mapping and functional recovery within 6 months of ischemic stroke. Neurorehabilitation and Neural Repair, 33(11), 922–932. https://doi.org/10.1177/1545968319872994.CrossRefPubMedPubMedCentral

44.

Rhudy, L. M., Wells-Pittman, J., & Flemming, K. D. (2020). Psychosocial sequelae of stroke in working-age adults: A pilot study. Journal of Neuroscience Nursing. https://doi.org/10.1097/JNN.0000000000000523.CrossRef

45.

Tran, P. L., Leigh Blizzard, C., Srikanth, V., Hanh, V. T., Lien, N. T., Thang, N. H., et al. (2015). Health-related quality of life after stroke: Reliability and validity of the Duke Health Profile for use in Vietnam. Quality of Life Research, 24(11), 2807–2814. https://doi.org/10.1007/s11136-015-1016-5.CrossRefPubMed

46.

Gershon, R. C., Lai, J. S., Bode, R., Choi, S., Moy, C., Bleck, T., et al. (2012). Neuro-QOL: quality of life item banks for adults with neurological disorders: Item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21(3), 475–486. https://doi.org/10.1007/s11136-011-9958-8.CrossRefPubMed

47.

Buysse, D. J., Yu, L., Moul, D. E., Germain, A., Stover, A., Dodds, N. E., et al. (2010). Development and validation of patient-reported outcome measures for sleep disturbance and sleep-related impairments. Sleep, 33(6), 781–792. https://doi.org/10.1093/sleep/33.6.781.CrossRefPubMedPubMedCentral

48.

Kim, J., Chung, H., Amtmann, D., Revicki, D. A., & Cook, K. F. (2013). Measurement invariance of the PROMIS pain interference item bank across community and clinical samples. Quality of Life Research, 22(3), 501–507. https://doi.org/10.1007/s11136-012-0191-x.CrossRefPubMed

Titel: The validity of proxy responses on patient-reported outcome measures: Are proxies a reliable alternative to stroke patients’ self-report?
Auteurs: Brittany R. Lapin
Nicolas R. Thompson
Andrew Schuster
Ryan Honomichl
Irene L. Katzan
Publicatiedatum: 28-01-2021
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 6/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-021-02758-9

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Methods

Results

Conclusions

Log in om toegang te krijgen

Andere artikelen Uitgave 6/2021

Constructing arguments for the interpretation and use of patient-reported outcome measures in research: an application of modern validity theory

Demographic and functional differences among social security disability claimants

Translation and psychometric validation of the traditional Chinese version of patient-reported outcomes measurement information system Pediatric-25 Profile version 2.0 (PROMIS-25) in Chinese Children with Cancer in Hong Kong

The longitudinal validity of proxy-reported CHU9D

Life experiences of adult heart transplant recipients: a new life, challenges, and coping

COVID-19 pandemic reduces the negative perception of oral health-related quality of life in adolescents