Top

Gepubliceerd in:

10-11-2020

Patient-reported experience with patient-reported outcome measures in adult patients seen in rheumatology clinics

Auteurs: Brittany R. Lapin, Ryan Honomichl, Nicolas Thompson, Susannah Rose, Abby Abelson, Chad Deal, Irene L. Katzan

Gepubliceerd in: Quality of Life Research | Uitgave 4/2021

Abstract

Objectives

Patient-reported outcome measures (PROMs) are increasingly utilized in the evaluation of patients with rheumatic diseases. The aim of our study was to assess the patient experience with completing PROMs within rheumatology clinics, and identify patient characteristics associated with a more positive experience.

Methods

We conducted a retrospective cross-sectional study of adult patients seen in rheumatology clinics between 1/1/2017 and 6/30/2017. Patients were included in the study if they completed at least one patient-reported experience question following completion of PROMs. Patient characteristics associated with more positive experiences were identified through multivariable proportional odds models.

Results

12,597 adult patients (mean age 59 ± 15; 76% female; 84% white) completed PROMs, as well as questions on their experience completing PROMs. Patients agreed/strongly agreed that PROM questions were easy to understand (97%), useful (84%), helped their physician understand their health (78%), improved communication with their provider (78%) and improved control over their own care (70%). Predictors of better experience with PROMs included being younger, non-white, having lower income, and being a new patient. Worse self-reported health also predicted better experience with PROMs.

Conclusion

Our study found a positive patient experience with PROMs, which is a crucial component of their successful implementation and utilization. Findings from this study suggest PROMs may be particularly beneficial in new patients, minorities, those with lower income, and worse self-reported quality of life. Collecting PROMs could provide opportunities to improve patient–provider communication and enhance control over care for rheumatology patients who could most benefit.

vorige artikel Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan

volgende artikel The elderly living in single-person households in South Korea: a latent profile analysis of self-esteem, life satisfaction, and depression

Alleen toegankelijk voor geautoriseerde gebruikers

Basch, E., Deal, A. M., Dueck, A. C., Scher, H. I., Kris, M. G., Hudis, C., et al. (2017). Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine cancer treatment. JAMA. https://doi.org/10.1001/jama.2017.7156CrossRefPubMedPubMedCentral

Chen, J., Ou, L., & Hollis, S. J. (2013). A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Services Research, 13, 211. https://doi.org/10.1186/1472-6963-13-211CrossRefPubMedPubMedCentral

Lavallee, D. C., Chenok, K. E., Love, R. M., Petersen, C., Holve, E., Segal, C. D., et al. (2016). Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Affairs (Millwood), 35(4), 575–582. https://doi.org/10.1377/hlthaff.2015.1362CrossRef

Mejdahl, C. T., Schougaard, L. M. V., Hjollund, N. H., Riiskjaer, E., Thorne, S., & Lomborg, K. (2017). PRO-based follow-up as a means of self-management support—An interpretive description of the patient perspective. The Journal of Patient-Reported Outcomes, 2, 38. https://doi.org/10.1186/s41687-018-0067-0CrossRefPubMed

Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288(23), 3027–3034.CrossRef

Takeuchi, E. E., Keding, A., Awad, N., Hofmann, U., Campbell, L. J., Selby, P. J., et al. (2011). Impact of patient-reported outcomes in oncology: A longitudinal analysis of patient-physician communication. Journal of Clinical Oncology, 29(21), 2910–2917. https://doi.org/10.1200/JCO.2010.32.2453CrossRefPubMed

Greenhalgh, J., Gooding, K., Gibbons, E., Dalkin, S., Wright, J., Valderas, J., et al. (2018). How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. The Journal of Patient-Reported Outcomes, 2, 42. https://doi.org/10.1186/s41687-018-0061-6CrossRefPubMed

Mecoli, C. A., Park, J. K., Alexanderson, H., Regardt, M., Needham, M., de Groot, I., et al. (2019). Perceptions of patients, caregivers, and healthcare providers of idiopathic inflammatory myopathies: An International OMERACT Study. The Journal of Rheumatology, 46(1), 106–111. https://doi.org/10.3899/jrheum.180353CrossRefPubMed

Bartlett, S. J., De Leon, E., Orbai, A. M., Haque, U. J., Manno, R. L., Ruffing, V., et al. (2019). Patient-reported outcomes in RA care improve patient communication, decision-making, satisfaction and confidence: Qualitative results. Rheumatology (Oxford). https://doi.org/10.1093/rheumatology/kez506CrossRef

10.

Witter, J. P. (2016). The promise of patient-reported outcomes measurement information system-turning theory into reality: A uniform approach to patient-reported outcomes across rheumatic diseases. Rheumatic Diseases Clinics of North America, 42(2), 377–394. https://doi.org/10.1016/j.rdc.2016.01.007CrossRefPubMed

11.

Bykerk, V. P. (2019). Patient-reported outcomes measurement information system versus legacy instruments: Are they ready for prime time? Rheumatic Diseases Clinics of North America, 45(2), 211–229. https://doi.org/10.1016/j.rdc.2019.01.006CrossRefPubMed

12.

HealthMeasures. (2020). PROMIS. Retrieved September 29, 2020 from www.healthmeasures.net.

13.

Nagaraja, V., Mara, C., Khanna, P. P., Namas, R., Young, A., Fox, D. A., et al. (2018). Establishing clinical severity for PROMIS((R)) measures in adult patients with rheumatic diseases. Quality of Life Research, 27(3), 755–764. https://doi.org/10.1007/s11136-017-1709-zCrossRefPubMed

14.

Bartlett, S. J., Orbai, A. M., Duncan, T., DeLeon, E., Ruffing, V., Clegg-Smith, K., et al. (2015). Reliability and validity of selected PROMIS measures in people with rheumatoid arthritis. PLoS ONE, 10(9), e0138543. https://doi.org/10.1371/journal.pone.0138543CrossRefPubMedPubMedCentral

15.

Katz, P., Pedro, S., & Michaud, K. (2017). Performance of the patient-reported outcomes measurement information system 29-item profile in rheumatoid arthritis, osteoarthritis, fibromyalgia, and systemic lupus erythematosus. Arthritis Care & Research (Hoboken), 69(9), 1312–1321. https://doi.org/10.1002/acr.23183CrossRef

16.

Kasturi, S., Szymonifka, J., Burket, J. C., Berman, J. R., Kirou, K. A., Levine, A. B., et al. (2018). Feasibility, validity, and reliability of the 10-item patient reported outcomes measurement information system global health short form in outpatients with systemic lupus erythematosus. The Journal of Rheumatology, 45(3), 397–404. https://doi.org/10.3899/jrheum.170590CrossRefPubMedPubMedCentral

17.

Gossec, L., Dougados, M., Rincheval, N., Balanescu, A., Boumpas, D. T., Canadelo, S., et al. (2009). Elaboration of the preliminary rheumatoid arthritis impact of disease (RAID) score: A EULAR initiative. Annals of the Rheumatic Diseases, 68(11), 1680–1685. https://doi.org/10.1136/ard.2008.100271CrossRefPubMed

18.

Katz, P., Pedro, S., Alemao, E., Yazdany, J., Dall’Era, M., Trupin, L., et al. (2020). Estimates of responsiveness, minimally important differences, and patient acceptable symptom state in five patient-reported outcomes measurement information system short forms in systemic lupus erythematosus. ACR Open Rheumatology, 2(1), 53–60. https://doi.org/10.1002/acr2.11100CrossRefPubMed

19.

Wahl, E., Gross, A., Chernitskiy, V., Trupin, L., Gensler, L., Chaganti, K., et al. (2017). Validity and responsiveness of a 10-item patient-reported measure of physical function in a rheumatoid arthritis clinic population. Arthritis Care & Research (Hoboken), 69(3), 338–346. https://doi.org/10.1002/acr.22956CrossRef

20.

Oude Voshaar, M. A., Ten Klooster, P. M., Glas, C. A., Vonkeman, H. E., Taal, E., Krishnan, E., et al. (2015). Validity and measurement precision of the PROMIS physical function item bank and a content validity-driven 20-item short form in rheumatoid arthritis compared with traditional measures. Rheumatology (Oxford), 54(12), 2221–2229. https://doi.org/10.1093/rheumatology/kev265CrossRef

21.

Wohlfahrt, A., Bingham, C. O., 3rd., Marder, W., Phillips, K., Bolster, M. B., Moreland, L. W., et al. (2019). Responsiveness of patient-reported outcomes measurement information system measures in rheumatoid arthritis patients starting or switching a disease-modifying antirheumatic drug. Arthritis Care & Research (Hoboken), 71(4), 521–529. https://doi.org/10.1002/acr.23617CrossRef

22.

Kingsley, C., & Patel, S. (2017). Patient-reported outcome measures and patient-reported experience measures. BJA Education, 17(4), 137–144.CrossRef

23.

Lapin, B., Udeh, B., Bautista, J. F., & Katzan, I. L. (2018a). Patient experience with patient-reported outcome measures in neurologic practice. Neurology, 91, 1–17.CrossRef

24.

Sorkin, D. H., Ngo-Metzger, Q., & De Alba, I. (2010). Racial/ethnic discrimination in health care: Impact on perceived quality of care. Journal of General Internal Medicine, 25(5), 390–396. https://doi.org/10.1007/s11606-010-1257-5CrossRefPubMedPubMedCentral

25.

Ayanian, J. Z., Zaslavsky, A. M., Arora, N. K., Kahn, K. L., Malin, J. L., Ganz, P. A., et al. (2010). Patients’ experiences with care for lung cancer and colorectal cancer: findings from the Cancer Care Outcomes Research and Surveillance Consortium. Journal of Clinical Oncology, 28(27), 4154–4161. https://doi.org/10.1200/JCO.2009.27.3268CrossRefPubMedPubMedCentral

26.

Sun, B. C., Adams, J., Orav, E. J., Rucker, D. W., Brennan, T. A., & Burstin, H. R. (2000). Determinants of patient satisfaction and willingness to return with emergency care. Annals of Emergency Medicine, 35(5), 426–434.CrossRef

27.

Stephens, A. R., Tyser, A. R., & Kazmers, N. H. (2020). The impact of social deprivation on orthopaedic outpatient satisfaction using the press Ganey Outpatient Medical Practice Survey. Journal of the American Academy of Orthopaedic Surgeons. https://doi.org/10.5435/JAAOS-D-19-00852CrossRef

28.

Clarke, J. L., Skoufalos, A., Medalia, A., & Fendrick, A. M. (2016). Improving health outcomes for patients with depression: A population health imperative. Report on an expert panel meeting. Population Health Management, 19(Suppl 2), S1–S12. https://doi.org/10.1089/pop.2016.0114CrossRefPubMed

29.

Tisano, B. K., Nakonezny, P. A., Gross, B. S., Martinez, J. R., & Wells, J. E. (2019). Depression and non-modifiable patient factors associated with patient satisfaction in an academic orthopaedic outpatient clinic: Is it more than a provider issue? Clinical Orthopaedics and Related Research, 477(12), 2653–2661. https://doi.org/10.1097/CORR.0000000000000927CrossRefPubMedPubMedCentral

30.

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. AMIA Annual Symposium Proceedings, 2011, 683–692.PubMedPubMedCentral

31.

Pincus, T., Yazici, Y., & Bergman, M. J. (2009). RAPID3, an index to assess and monitor patients with rheumatoid arthritis, without formal joint counts: Similar results to DAS28 and CDAI in clinical trials and clinical care. Rheumatic Diseases Clinics of North America, 35(4), 773–778. https://doi.org/10.1016/j.rdc.2009.10.008CrossRefPubMed

32.

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

33.

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.2010.04.011CrossRefPubMedPubMedCentral

34.

Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical Care, 41(5), 582–592. https://doi.org/10.1097/01.MLR.0000062554.74615.4CCrossRefPubMed

35.

Snyder, C. F., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., Wu, A. W., et al. (2013). Feasibility and value of patient view point: A web system for patient-reported outcomes assessment in clinical practice. Psychooncology, 22(4), 895–901. https://doi.org/10.1002/pon.3087CrossRefPubMed

36.

Snyder, C. F., Herman, J. M., White, S. M., Luber, B. S., Blackford, A. L., Carducci, M. A., et al. (2014). When using patient-reported outcomes in clinical practice, the measure matters: A randomized controlled trial. Journal of Oncology Practice, 10(5), e299-306. https://doi.org/10.1200/JOP.2014.001413CrossRefPubMedPubMedCentral

37.

Lapin, B. R., Honomichl, R. D., Thompson, N. R., Rose, S., Sugano, D., Udeh, B., et al. (2019). Association between patient experience with patient-reported outcome measurements and overall satisfaction with care in neurology. Value in Health, 22(5), 555–563. https://doi.org/10.1016/j.jval.2019.02.007CrossRefPubMed

38.

Brant, R. (1990). Assessing proportionality in the proportional odds model for ordinal logistic regression. Biometrics, 46(4), 1171–1178.CrossRef

39.

Li, T., Hutfless, S., Scharfstein, D. O., Daniels, M. J., Hogan, J. W., Little, R. J., et al. (2014). Standards should be applied in the prevention and handling of missing data for patient-centered outcomes research: A systematic review and expert consensus. Journal of Clinical Epidemiology, 67(1), 15–32. https://doi.org/10.1016/j.jclinepi.2013.08.013CrossRefPubMedPubMedCentral

40.

Lapin, B., Udeh, B., Bautista, J. F., & Katzan, I. L. (2018b). Patient experience with patient-reported outcome measures in neurologic practice. Neurology. https://doi.org/10.1212/WNL.0000000000006198CrossRefPubMed

41.

Agrawal, H., Hay, M. C., Volkmann, E. R., Maranian, P., Khanna, D., & Furst, D. E. (2012). Satisfaction and access to clinical care in a rheumatology clinic at a large urban medical center. Journal of Clinical Rheumatology, 18(4), 209–211. https://doi.org/10.1097/RHU.0b013e318259aa1bCrossRefPubMed

42.

Ku, J. H., Danve, A., Pang, H., Choi, D., & Rosenbaum, J. T. (2015). Determinants of patient satisfaction in an academic rheumatology practice. Journal of Clinical Rheumatology, 21(5), 256–262. https://doi.org/10.1097/RHU.0000000000000263CrossRefPubMed

43.

Jacobi, C. E., Boshuizen, H. C., Rupp, I., Dinant, H. J., & van den Bos, G. A. (2004). Quality of rheumatoid arthritis care: The patient’s perspective. The International Journal for Quality in Health Care, 16(1), 73–81. https://doi.org/10.1093/intqhc/mzh009CrossRefPubMed

44.

Shen, M. J., Peterson, E. B., Costas-Muniz, R., Hernandez, M. H., Jewell, S. T., Matsoukas, K., et al. (2018). The effects of race and racial concordance on patient-physician communication: A systematic review of the literature. Journal of Racial and Ethnic Health Disparities, 5(1), 117–140. https://doi.org/10.1007/s40615-017-0350-4CrossRefPubMed

45.

Schalet, B. D., Hays, R. D., Jensen, S. E., Beaumont, J. L., Fries, J. F., & Cella, D. (2016). Validity of PROMIS physical function measured in diverse clinical samples. Journal of Clinical Epidemiology, 73, 112–118. https://doi.org/10.1016/j.jclinepi.2015.08.039CrossRefPubMedPubMedCentral

46.

Cella, D., Lai, J. S., Jensen, S. E., Christodoulou, C., Junghaenel, D. U., Reeve, B. B., et al. (2016). PROMIS fatigue item bank had clinical validity across diverse chronic conditions. Journal of Clinical Epidemiology, 73, 128–134. https://doi.org/10.1016/j.jclinepi.2015.08.037CrossRefPubMedPubMedCentral

47.

Askew, R. L., Cook, K. F., Revicki, D. A., Cella, D., & Amtmann, D. (2016). Evidence from diverse clinical populations supported clinical validity of PROMIS pain interference and pain behavior. Journal of Clinical Epidemiology, 73, 103–111. https://doi.org/10.1016/j.jclinepi.2015.08.035CrossRefPubMedPubMedCentral

48.

El Miedany, Y., El Gaafary, M., Youssef, S., Ahmed, I., & Palmer, D. (2014). The arthritic patients’ perspective of measuring treatment efficacy: Patient Reported Experience Measures (PREMs) as a quality tool. Clinical and Experimental Rheumatology, 32(4), 547–552.PubMed

49.

Black, N., Varaganum, M., & Hutchings, A. (2014). Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Quality & Safety, 23(7), 534–542. https://doi.org/10.1136/bmjqs-2013-002707CrossRef

50.

Rao, J. K., Weinberger, M., Anderson, L. A., & Kroenke, K. (2004). Predicting reports of unmet expectations among rheumatology patients. Arthritis & Rheumatology, 51(2), 215–221. https://doi.org/10.1002/art.20246CrossRef

51.

Vallerand, I. A., Patten, S. B., & Barnabe, C. (2019). Depression and the risk of rheumatoid arthritis. Current Opinion in Rheumatology, 31(3), 279–284. https://doi.org/10.1097/BOR.0000000000000597CrossRefPubMedPubMedCentral

52.

Matcham, F., Rayner, L., Steer, S., & Hotopf, M. (2013). The prevalence of depression in rheumatoid arthritis: A systematic review and meta-analysis. Rheumatology (Oxford), 52(12), 2136–2148. https://doi.org/10.1093/rheumatology/ket169CrossRef

53.

Recinos, P. F., Dunphy, C. J., Thompson, N., Schuschu, J., Urchek, J. L., 3rd., & Katzan, I. L. (2016). Patient satisfaction with collection of patient-reported outcome measures in routine care. Advances in Therapy. https://doi.org/10.1007/s12325-016-0463-xCrossRefPubMed

54.

Freel, J., Bellon, J., & Hanmer, J. (2018, June 20, 2018). Better physician ratings from discussing PROs with patients. NEJM Catalyst.

55.

Bruce, B., Fries, J. F., & Murtagh, K. N. (2007). Health status disparities in ethnic minority patients with rheumatoid arthritis: A cross-sectional study. Journal of Rheumatology, 34(7), 1475–1479.

56.

Barton, J. L., Trupin, L., Schillinger, D., Gansky, S. A., Tonner, C., Margaretten, M., et al. (2011). Racial and ethnic disparities in disease activity and function among persons with rheumatoid arthritis from university-affiliated clinics. Arthritis Care & Research (Hoboken), 63(9), 1238–1246. https://doi.org/10.1002/acr.20525CrossRef

57.

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), S91-98.CrossRef

Titel: Patient-reported experience with patient-reported outcome measures in adult patients seen in rheumatology clinics
Auteurs: Brittany R. Lapin
Ryan Honomichl
Nicolas Thompson
Susannah Rose
Abby Abelson
Chad Deal
Irene L. Katzan
Publicatiedatum: 10-11-2020
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 4/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-020-02692-2

Andere artikelen Uitgave 4/2021

Improving quality of life assessments for high-need adult Medicaid service users with mental health conditions

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure

Bohn Stafleu van Loghum

Patient-reported experience with patient-reported outcome measures in adult patients seen in rheumatology clinics

Abstract

Objectives

Methods

Results

Conclusion

Andere artikelen Uitgave 4/2021

Improving quality of life assessments for high-need adult Medicaid service users with mental health conditions

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure

Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan

Health-related quality of life in adolescents: individual and combined impact of health-related behaviors (DADOS study)

Cross-cultural adaptation into French and validation of the SCAR-Q questionnaire

Post-stroke fatigue level is significantly associated with mental health component of health-related quality of life: a cross-sectional study

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Objectives

Methods

Results

Conclusion

Log in om toegang te krijgen

Improving quality of life assessments for high-need adult Medicaid service users with mental health conditions

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure

Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan

Health-related quality of life in adolescents: individual and combined impact of health-related behaviors (DADOS study)

Cross-cultural adaptation into French and validation of the SCAR-Q questionnaire

Post-stroke fatigue level is significantly associated with mental health component of health-related quality of life: a cross-sectional study