Skip to main content
Top
Gepubliceerd in: Quality of Life Research 4/2022

11-09-2021

A framework to make PROMs relevant to patients: qualitative study of communication preferences of PROMs

Auteurs: Cara H. Lai, Lauren M. Shapiro, Derek F. Amanatullah, Loretta B. Chou, Michael J. Gardner, Serena S. Hu, Marc R. Safran, Robin N. Kamal

Gepubliceerd in: Quality of Life Research | Uitgave 4/2022

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

Patient-reported outcome measures are tools for evaluating symptoms, magnitude of limitations, baseline health status, and outcomes from the patient’s perspective. Healthcare professional organizations and payers increasingly recommend PROMs for clinical care, but there lacks guidance regarding effective communication of PROMs with orthopedic surgery patients. This qualitative study aimed to identify (1) patient attitudes toward the use and communication of PROMs, and (2) what patients feel are the most relevant or important aspects of PROM results to discuss with their physicians.

Methods

Participants were recruited from a multispeciality orthopedic clinic. Three PROMs: the EuroQol-5 Dimension, the Patient-Specific Functional Scale, and the Patient-Reported Outcome Measurement Information System Physical Function Computer Adaptive Test were shown and a semi-structured interview was conducted to elicit PROMs attitudes and preferences. Interviews were transcribed and inductive-deductively coded. Coded excerpts were aggregated to (1) identify major themes and (2) analyze how themes interacted.

Result

Three themes emerged: (1) Beliefs toward the purpose of PROMs, (2) PROMs as a reflection of self, and (3) PROMs to facilitate communication and guide healthcare decisions. These themes informed a framework outlining the patient perspective on communicating PROMs during clinical care.

Conclusion

Patient attitudes toward the use and communication of PROMs start with the incorporation of patient beliefs, which can facilitate or act as a barrier to engagement. Patients should ideally believe that PROMs are an accurate reflection of personal health state before incorporation into care. Clinicians should endeavor to communicate the purpose of a chosen PROM in line with a patient’s unique needs and what they feel is most relevant to their own care. Aspects of PROMs results which may be helpful to address include providing context for what scores mean and how they are calculated, and using scores as a way to weigh risks and benefits of treatment and tracking progress over time. Future research can focus on the effect of communication strategies on patient outcomes and engagement in care.
Literatuur
1.
go back to reference Field, J., Holmes, M. M., & Newell, D. (2019). PROMs data: Can it be used to make decisions for individual patients? A narrative review. Patient Related Outcome Measures, 10, 233–241.CrossRef Field, J., Holmes, M. M., & Newell, D. (2019). PROMs data: Can it be used to make decisions for individual patients? A narrative review. Patient Related Outcome Measures, 10, 233–241.CrossRef
2.
go back to reference Wu, A. W., & Snyder, C. (2011). Getting ready for patient-reported outcomes measures (PROMs) in clinical practice. Healthc Pap, 11(4), 48–53; discussion 55-8. Wu, A. W., & Snyder, C. (2011). Getting ready for patient-reported outcomes measures (PROMs) in clinical practice. Healthc Pap, 11(4), 48–53; discussion 55-8.
3.
go back to reference Nelson, E. C., et al. (2015). Patient reported outcome measures in practice. BMJ, 350, g7818. Nelson, E. C., et al. (2015). Patient reported outcome measures in practice. BMJ, 350, g7818.
4.
go back to reference Cella, D., Hahn, E., & Jensen, S. (2015). Patient-reported outcomes in performance measurement. RTI Press.CrossRef Cella, D., Hahn, E., & Jensen, S. (2015). Patient-reported outcomes in performance measurement. RTI Press.CrossRef
5.
go back to reference Baumhauer, J. F. (2017). Patient-reported outcomes – Are they living up to their potential? New England Journal of Medicine, 377(1), 6–9.CrossRef Baumhauer, J. F. (2017). Patient-reported outcomes – Are they living up to their potential? New England Journal of Medicine, 377(1), 6–9.CrossRef
6.
go back to reference Institute of Medicine Committee on Quality of Health Care. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press Copyright 2001 by the National Academy of Sciences. All rights reserved. Washington. Institute of Medicine Committee on Quality of Health Care. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press Copyright 2001 by the National Academy of Sciences. All rights reserved. Washington.
7.
go back to reference Health, D. O. (2020). Equity and excellence: Liberating the NHS. Department of Healh. Health, D. O. (2020). Equity and excellence: Liberating the NHS. Department of Healh.
8.
go back to reference Lewis, C. C., et al. (2019). Implementing measurement-based care in behavioral health: A reviewmeasurement-based care in behavioral health measurement-based care in behavioral health. JAMA Psychiatry, 76(3), 324–335.CrossRef Lewis, C. C., et al. (2019). Implementing measurement-based care in behavioral health: A reviewmeasurement-based care in behavioral health measurement-based care in behavioral health. JAMA Psychiatry, 76(3), 324–335.CrossRef
9.
go back to reference Bech, P., & Timmerby, N. (2018). An overview of which health domains to consider and when to apply them in measurement-based care for depression and anxiety disorders. Nordic Journal of Psychiatry, 72(5), 367–373.CrossRef Bech, P., & Timmerby, N. (2018). An overview of which health domains to consider and when to apply them in measurement-based care for depression and anxiety disorders. Nordic Journal of Psychiatry, 72(5), 367–373.CrossRef
10.
go back to reference Detmar, S. B., et al. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288(23), 3027–3034.CrossRef Detmar, S. B., et al. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288(23), 3027–3034.CrossRef
11.
go back to reference Velikova, G., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714–724.CrossRef Velikova, G., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714–724.CrossRef
12.
go back to reference Rotenstein, L. S., Huckman, R. S., & Wagle, N. W. (2017). Making patients and doctors happier – The potential of patient-reported outcomes. New England Journal of Medicine, 377(14), 1309–1312.CrossRef Rotenstein, L. S., Huckman, R. S., & Wagle, N. W. (2017). Making patients and doctors happier – The potential of patient-reported outcomes. New England Journal of Medicine, 377(14), 1309–1312.CrossRef
13.
go back to reference Boyce, M. B., & Browne, J. P. (2013). Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review. Qual Life Res, 22(9), 2265–2278.CrossRef Boyce, M. B., & Browne, J. P. (2013). Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review. Qual Life Res, 22(9), 2265–2278.CrossRef
14.
go back to reference Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568.CrossRef Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568.CrossRef
15.
go back to reference Greenhalgh, J., et al. (2018). How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient Rep Outcomes, 2, 42.CrossRef Greenhalgh, J., et al. (2018). How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient Rep Outcomes, 2, 42.CrossRef
16.
go back to reference Greenhalgh, J., et al. (2013). How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations? Quality of Life Research, 22(5), 939–950.CrossRef Greenhalgh, J., et al. (2013). How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations? Quality of Life Research, 22(5), 939–950.CrossRef
17.
go back to reference Santana, M. J., et al. (2010). Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients. Quality of Life Research, 19(3), 371–379.CrossRef Santana, M. J., et al. (2010). Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients. Quality of Life Research, 19(3), 371–379.CrossRef
18.
go back to reference Mallinson, S. (2002). Listening to respondents: A qualitative assessment of the short-form 36 health status questionnaire. Social Science and Medicine, 54(1), 11–21.CrossRef Mallinson, S. (2002). Listening to respondents: A qualitative assessment of the short-form 36 health status questionnaire. Social Science and Medicine, 54(1), 11–21.CrossRef
19.
go back to reference Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60(4), 833–843.CrossRef Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60(4), 833–843.CrossRef
20.
go back to reference Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRef Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRef
21.
go back to reference Bunzli, S., et al. (2019). Misconceptions and the acceptance of evidence-based nonsurgical interventions for knee osteoarthritis. A qualitative study. Clinical Orthopaedics & Related Research, 477(9), 1975–1983. Bunzli, S., et al. (2019). Misconceptions and the acceptance of evidence-based nonsurgical interventions for knee osteoarthritis. A qualitative study. Clinical Orthopaedics & Related Research, 477(9), 1975–1983.
22.
go back to reference Palinkas, L. A., et al. (2015). Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health, 42(5), 533–544.CrossRef Palinkas, L. A., et al. (2015). Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health, 42(5), 533–544.CrossRef
23.
go back to reference Saunders, B., et al. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907.CrossRef Saunders, B., et al. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907.CrossRef
24.
go back to reference Guest, G., Namey, E., & Chen, M. (2020). A simple method to assess and report thematic saturation in qualitative research. Plos One, 15(5), e0232076. Guest, G., Namey, E., & Chen, M. (2020). A simple method to assess and report thematic saturation in qualitative research. Plos One, 15(5), e0232076.
25.
go back to reference Grobet, C., et al. (2018). Application and measurement properties of EQ-5D to measure quality of life in patients with upper extremity orthopaedic disorders: A systematic literature review. Archives of Orthopaedic and Trauma Surgery, 138(7), 953–961.CrossRef Grobet, C., et al. (2018). Application and measurement properties of EQ-5D to measure quality of life in patients with upper extremity orthopaedic disorders: A systematic literature review. Archives of Orthopaedic and Trauma Surgery, 138(7), 953–961.CrossRef
26.
go back to reference Lloyd, A., & Pickard, A. S. (2019). The EQ-5D and the EuroQol Group. Value Health, 22(1), 21–22.CrossRef Lloyd, A., & Pickard, A. S. (2019). The EQ-5D and the EuroQol Group. Value Health, 22(1), 21–22.CrossRef
27.
go back to reference Oak, S. R., et al. (2016). Responsiveness comparison of the EQ-5D, PROMIS Global Health, and VR-12 questionnaires in knee arthroscopy. Orthopaedic Journal of Sports Medicine, 4(12), 2325967116674714–2325967116674714.CrossRef Oak, S. R., et al. (2016). Responsiveness comparison of the EQ-5D, PROMIS Global Health, and VR-12 questionnaires in knee arthroscopy. Orthopaedic Journal of Sports Medicine, 4(12), 2325967116674714–2325967116674714.CrossRef
28.
go back to reference Rundgren, J., et al. (2018). Responsiveness of EQ-5D in patients with a distal radius fracture. Hand (NY), 13(5), 572–580.CrossRef Rundgren, J., et al. (2018). Responsiveness of EQ-5D in patients with a distal radius fracture. Hand (NY), 13(5), 572–580.CrossRef
29.
go back to reference Stratford, P. W., Kennedy, D. M., & Wainwright, A. V. (2014). Assessing the patient-specific functional scale’s ability to detect early recovery following total knee arthroplasty. Physical Therapy, 94(6), 838–844.CrossRef Stratford, P. W., Kennedy, D. M., & Wainwright, A. V. (2014). Assessing the patient-specific functional scale’s ability to detect early recovery following total knee arthroplasty. Physical Therapy, 94(6), 838–844.CrossRef
30.
go back to reference Westaway, M. D., Stratford, P. W., & Binkley, J. M. (1998). The patient-specific functional scale: Validation of its use in persons with neck dysfunction. Journal of Orthopaedic and Sports Physical Therapy, 27(5), 331–338.CrossRef Westaway, M. D., Stratford, P. W., & Binkley, J. M. (1998). The patient-specific functional scale: Validation of its use in persons with neck dysfunction. Journal of Orthopaedic and Sports Physical Therapy, 27(5), 331–338.CrossRef
31.
go back to reference Stratford, P., et al. (1995). Assessing disability and change on individual patients: A report of a patient specific measure. Physiotherapy Canada, 47(4), 258–263.CrossRef Stratford, P., et al. (1995). Assessing disability and change on individual patients: A report of a patient specific measure. Physiotherapy Canada, 47(4), 258–263.CrossRef
32.
go back to reference Anthony, C. A., et al. (2017). Performance of PROMIS instruments in patients with shoulder instability. American Journal of Sports Medicine, 45(2), 449–453.CrossRef Anthony, C. A., et al. (2017). Performance of PROMIS instruments in patients with shoulder instability. American Journal of Sports Medicine, 45(2), 449–453.CrossRef
33.
go back to reference Beleckas, C. M., et al. (2017). Performance of Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity (UE) Versus Physical Function (PF) Computer Adaptive Tests (CATs) in upper extremity clinics. The Journal of Hand Surgery, 42(11), 867–874.CrossRef Beleckas, C. M., et al. (2017). Performance of Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity (UE) Versus Physical Function (PF) Computer Adaptive Tests (CATs) in upper extremity clinics. The Journal of Hand Surgery, 42(11), 867–874.CrossRef
34.
go back to reference Fisk, F., et al. (2019). PROMIS CAT forms demonstrate responsiveness in patients following arthroscopic rotator cuff repair across numerous health domains. Journal of Shoulder and Elbow Surgery, 28(12), 2427–2432.CrossRef Fisk, F., et al. (2019). PROMIS CAT forms demonstrate responsiveness in patients following arthroscopic rotator cuff repair across numerous health domains. Journal of Shoulder and Elbow Surgery, 28(12), 2427–2432.CrossRef
35.
go back to reference Rose, M., et al. (2014). The PROMIS Physical Function item bank was calibrated to a standardized metric and shown to improve measurement efficiency. Journal of Clinical Epidemiology, 67(5), 516–526.CrossRef Rose, M., et al. (2014). The PROMIS Physical Function item bank was calibrated to a standardized metric and shown to improve measurement efficiency. Journal of Clinical Epidemiology, 67(5), 516–526.CrossRef
36.
go back to reference Raskind, I. G., et al. (2019). A review of qualitative data analysis practices in health education and health behavior research. Health Education & Behavior, 46(1), 32–39.CrossRef Raskind, I. G., et al. (2019). A review of qualitative data analysis practices in health education and health behavior research. Health Education & Behavior, 46(1), 32–39.CrossRef
37.
go back to reference Saldana, J. (2012). The Coding Manual for Qualitative Researchers. SAGE Publications. Saldana, J. (2012). The Coding Manual for Qualitative Researchers. SAGE Publications.
38.
go back to reference Adu, P. (2019). A step-by-step guide to qualitative data coding. Taylor & Francis. Adu, P. (2019). A step-by-step guide to qualitative data coding. Taylor & Francis.
39.
go back to reference Creswell, J. (2016). 30 Essential skills for the qualitative researcher. SAGE Publications, Inc. Creswell, J. (2016). 30 Essential skills for the qualitative researcher. SAGE Publications, Inc.
40.
go back to reference Castleberry, A., & Nolen, A. (2018). Thematic analysis of qualitative research data: Is it as easy as it sounds? Currents in Pharmacy Teaching & Learning, 10(6), 807–815.CrossRef Castleberry, A., & Nolen, A. (2018). Thematic analysis of qualitative research data: Is it as easy as it sounds? Currents in Pharmacy Teaching & Learning, 10(6), 807–815.CrossRef
41.
go back to reference Crowe, M., Inder, M., & Porter, R. (2015). Conducting qualitative research in mental health: Thematic and content analyses. Australian and New Zealand Journal of Psychiatry, 49(7), 616–623.CrossRef Crowe, M., Inder, M., & Porter, R. (2015). Conducting qualitative research in mental health: Thematic and content analyses. Australian and New Zealand Journal of Psychiatry, 49(7), 616–623.CrossRef
42.
go back to reference Fossey, E., et al. (2002). Understanding and evaluating qualitative research. Australian & New Zealand Journal of Psychiatry, 36(6), 717–732.CrossRef Fossey, E., et al. (2002). Understanding and evaluating qualitative research. Australian & New Zealand Journal of Psychiatry, 36(6), 717–732.CrossRef
43.
go back to reference Valderas, J. M., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193.CrossRef Valderas, J. M., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193.CrossRef
44.
go back to reference Elwyn, G., Cochran, N., & Pignone, M. (2017). Shared decision making-the importance of diagnosing preferences. JAMA Internal Medicine, 177(9), 1239–1240.CrossRef Elwyn, G., Cochran, N., & Pignone, M. (2017). Shared decision making-the importance of diagnosing preferences. JAMA Internal Medicine, 177(9), 1239–1240.CrossRef
Metagegevens
Titel
A framework to make PROMs relevant to patients: qualitative study of communication preferences of PROMs
Auteurs
Cara H. Lai
Lauren M. Shapiro
Derek F. Amanatullah
Loretta B. Chou
Michael J. Gardner
Serena S. Hu
Marc R. Safran
Robin N. Kamal
Publicatiedatum
11-09-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 4/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02972-5

Andere artikelen Uitgave 4/2022

Quality of Life Research 4/2022 Naar de uitgave