Quality of Life Research

, Volume 21, Issue 8, pp 1305–1314 | Cite as

Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations

  • Claire F. Snyder
  • Neil K. Aaronson
  • Ali K. Choucair
  • Thomas E. Elliott
  • Joanne Greenhalgh
  • Michele Y. Halyard
  • Rachel Hess
  • Deborah M. Miller
  • Bryce B. Reeve
  • Maria Santana
Review

Abstract

Purpose

While clinical care is frequently directed at making patients “feel better,” patients’ reports on their functioning and well-being (patient-reported outcomes [PROs]) are rarely collected in routine clinical practice. The International Society for Quality of Life Research (ISOQOL) has developed a User’s Guide for Implementing Patient-Reported Outcomes Assessment in Clinical Practice. This paper summarizes the key issues from the User’s Guide.

Methods

Using the literature, an ISOQOL team outlined considerations for using PROs in clinical practice; options for designing the intervention; and strengths, weaknesses, and resource requirements associated with each option.

Results

Implementing routine PRO assessment involves a number of methodological and practical decisions, including (1) identifying the goals for collecting PROs in clinical practice, (2) selecting the patients, setting, and timing of assessments, (3) determining which questionnaire(s) to use, (4) choosing a mode for administering and scoring the questionnaire, (5) designing processes for reporting results, (6) identifying aids to facilitate score interpretation, (7) developing strategies for responding to issues identified by the questionnaires, and (8) evaluating the impact of the PRO intervention on the practice.

Conclusions

Integrating PROs in clinical practice has the potential to enhance patient-centered care. The online version of the User’s Guide will be updated periodically.

Keywords

Patient-reported outcomes Clinical practice Guidelines 

Abbreviations

ISOQOL

International Society for Quality of Life Research

PDSA

Plan-do-study-act

PROs

Patient-reported outcomes

SIG

Special Interest Group

References

  1. 1.
    Department of Health. (2010). Equity and excellence: Liberating the NHS. London.Google Scholar
  2. 2.
    Greenhalgh, J., & Meadows, K. (1999). The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. Journal of Evaluation in Clinical Practice, 5, 401–416.PubMedCrossRefGoogle Scholar
  3. 3.
    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, 559–568.PubMedCrossRefGoogle Scholar
  4. 4.
    Valderas, J. M., Kotzeva, A., Espallargues, 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, 179–193.PubMedCrossRefGoogle Scholar
  5. 5.
    Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work and why? Quality of Life Research, 18, 115–123.PubMedCrossRefGoogle Scholar
  6. 6.
    Devlin, N. J., & Appleby, J. (2010). Getting the most out of PROMS: Putting health outcomes at the heart of NHS decision-making. London, United Kingdom: The King’s Fund.Google Scholar
  7. 7.
    Ackerley, S. J., Gordon, H. J., Elston, A. F., Crawford, L. M., & McPherson, K. M. (2009). Assessment of quality of life, participation within an outpatient rehabilitation setting. [Erratum appears in Disability, Rehabilitation;31:1107]. Disability and Rehabilitation, 31, 906–913.PubMedCrossRefGoogle Scholar
  8. 8.
    Masskulpan, P., Riewthong, K., Dajpratham, P., & Kuptniratsaikul, V. (2008). Anxiety and depressive symptoms after stroke in 9 rehabilitation centers. Journal of the Medical Association of Thailand, 91, 1595–1602.PubMedGoogle Scholar
  9. 9.
    Veenstra, M., Moum, T., & Garratt, A. M. (2006). Patient experiences with information in a hospital setting: associations with coping and self-rated health in chronic illness. Quality of Life Research, 15, 967–978.PubMedCrossRefGoogle Scholar
  10. 10.
    Rose, M., & Bezjak, A. (2009). Logistics of collecting patient-reported outcomes (PRO) in clinical practice: an overview and practical examples. Quality of Life Research, 18, 125–136.PubMedCrossRefGoogle Scholar
  11. 11.
    Lohr, K. N., & Zebrack, B. J. (2009). Using patient-reported outcomes in clinical practice: Challenges and opportunities. Quality of Life Research, 18, 99–107.PubMedCrossRefGoogle Scholar
  12. 12.
    Santana, M. J., Feeny, D., Johnson, J. A., 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, 371–379.PubMedCrossRefGoogle Scholar
  13. 13.
    Santana, M. J., & Feeny, D. (2009). Using the health utilities index in routine clinical care: Process, feasibility and acceptability. Patient, 2, 1–9.CrossRefGoogle Scholar
  14. 14.
    Frost, M. H., Bonomi, A. E., Cappelleri, J. C., et al. (2007). Applying quality-of-life data formally and systematically into clinical practice. Mayo Clinic Proceedings, 82, 1214–1228.PubMedCrossRefGoogle Scholar
  15. 15.
    Donaldson, M. S. (2008). Taking PROs and patient-centered care seriously: Incremental and disruptive ideas for incorporating PROs in oncology practice. Quality of Life Research, 17, 1323–1330.PubMedCrossRefGoogle Scholar
  16. 16.
    Fung, C., & Hays, R. D. (2008). Prospects and challenges in using patient-reported outcomes in clinical practice. Quality of Life Research, 17, 1297–1302.PubMedCrossRefGoogle Scholar
  17. 17.
    Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical care: Lack of impact or lack of theory? Social Science and Medicine, 60, 833–843.PubMedCrossRefGoogle Scholar
  18. 18.
    Bush, N., Donaldson, G., Moinpour, C., et al. (2005). Development, feasibility and compliance of a web-based system for very frequent QOL and symptom home self-assessment after hematopoietic stem cell transplantation. Quality of Life Research, 14, 77–93.PubMedCrossRefGoogle Scholar
  19. 19.
    Donaldson, M. S. (2007). Use of patient-reported outcomes in clinical oncology practice. A nonvisit approach to patient care based on the IOM report. Journal of Ambulatory Care Management, 30, 302–307.PubMedGoogle Scholar
  20. 20.
    Snyder, C. F., Jensen, R., Courtin, O., & Wu, A. W. (2009). PatientViewpoint: A website for patient-reported outcomes assessment. Quality of Life Research, 18, 793–800.PubMedCrossRefGoogle Scholar
  21. 21.
    McColl, E., & Fayers, P. (2005). Context effects and proxy assessments. In P. Fayers & R. D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 131–148). New York: Oxford.Google Scholar
  22. 22.
    Seid, M., Limbers, C. A., Driscoll, K. A., Opipari-Arrigan, L. A., Gelhard, L. R., & Varni, J. W. (2010). Reliability, validity, and responsiveness of the pediatric quality of life inventory (PedsQL) generic core scales and asthma symptoms scale in vulnerable children with asthma. Journal of Asthma, 47, 170–177.PubMedCrossRefGoogle Scholar
  23. 23.
    Naglie, G., Tomlinson, G., Tansey, C., et al. (2006). Utility-based quality of life measures in Alzheimer’s disease. Quality of Life Research, 15, 631–643.PubMedCrossRefGoogle Scholar
  24. 24.
    Novella, J. L., Jochum, C., Jolly, D., et al. (2001). Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Quality of Life Research, 10, 443–452.PubMedCrossRefGoogle Scholar
  25. 25.
    Ready, R. E., Ott, B. R., & Grace, J. (2004). Patient versus informant perspectives of quality of life in mild cognitive impairment and Alzheimer’s disease. International Journal of Geriatric Psychiatry, 19, 256–265.PubMedCrossRefGoogle Scholar
  26. 26.
    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, 493–499.PubMedCrossRefGoogle Scholar
  27. 27.
    Chen, T. H., Li, L., & Kochen, M. M. (2005). A systematic review: How to choose appropriate health-related quality of life (HRQOL) measures in routine general practice? Journal of Zhejiang University Science B, 6, 936–940.PubMedCrossRefGoogle Scholar
  28. 28.
    Osoba, D. (2007). Translating the science of patient-reported outcomes assessment into clinical practice. Journal of the National Cancer Institute Monographs, 37, 5–11.PubMedCrossRefGoogle Scholar
  29. 29.
    Snyder, C. F., Dy, S. M., Hendricks, D. E., et al. (2007). Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Supportive Care in Cancer, 15, 1075–1085.PubMedCrossRefGoogle Scholar
  30. 30.
    Miller, D. M., Kattan, M. W., & Fu, A. Z. (2007). Health related quality of life assessment in multiple sclerosis. In J. A. Cohen & R. A. Rudick (Eds.), Multiple sclerosis therapeutics (3rd ed., pp. 101–112). Abingdon: Informa.Google Scholar
  31. 31.
    Nowels, D., McGloin, J., Westfall, J. M., & Holcomb, S. (2005). Validation of the EQ-5D quality of life instrument in patients after myocardial infarction. Quality of Life Research, 14, 95–105.PubMedCrossRefGoogle Scholar
  32. 32.
    Zimmerman, M., Ruggero, C. J., Chelminski, I., et al. (2006). Developing brief scales for use in clinical practice: the reliability and validity of single-item self-report measures of depression symptom severity, psychosocial impairment due to depression, and quality of life. Journal of Clinical Psychiatry, 67, 1536–1541.PubMedCrossRefGoogle Scholar
  33. 33.
    Cella, D., Gershon, R., Lai, J. S., & Choi, S. (2007). The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 161(Suppl 1), 133–141.CrossRefGoogle Scholar
  34. 34.
    Cella, D., Riley, W., Stone, A., et al. (2010). Initial adult health item banks and first wave testing of the patient-reported outcomes measurement information system (PROMIS) network: 2005–2008. Journal of Clinical Epidemiology, 63, 1179–1194.PubMedCrossRefGoogle Scholar
  35. 35.
    Walter, O. B., Becker, J., Bjorner, J. B., Fliege, H., Klapp, B. F., & Rose, M. (2007). Development and evaluation of a computer adaptive test for ‘Anxiety’ (Anxiety-CAT). Quality of Life Research, 16(Suppl 1), 143–155.PubMedCrossRefGoogle Scholar
  36. 36.
    University of Oxford Patient-Reported Outcomes Measurement Group. (2011). Reports and publications. http://phi.uhce.ox.ac.uk/newpubs.php. Accessed June 9, 2011.
  37. 37.
    Dillman, D. A., Smyth, J. D., & Christian, L. M. (2009). Internet, mail, and mixed-mode surveys: The tailored design method (3rd ed.). New Jersey: Wiley.Google Scholar
  38. 38.
    Bickman, L., & Rog, D. J. (2009). The Sage handbook of applied social research methods. London: Sage Publications Ltd.Google Scholar
  39. 39.
    Fowley, F. J., Jr. (2009). Survey research methods (4th ed.). London: Sage Publications Ltd.Google Scholar
  40. 40.
    Wasson, J. H., Stukel, T. A., Weiss, J. E., Hays, R. D., Jette, A. M., & Nelson, E. C. (1999). A randomized trial of the use of patient self-assessment data to improve community practices. Effective Clinical Practice, 2, 1–10.PubMedGoogle Scholar
  41. 41.
    Hess, R., Santucci, A., McTigue, K., Fischer, G., & Kapoor, W. (2008). Patient difficulty using tablet computers to screen in primary care. Journal of General Internal Medicine, 23, 476–480.PubMedCrossRefGoogle Scholar
  42. 42.
    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, 3027–3034.PubMedCrossRefGoogle Scholar
  43. 43.
    Velikova, G., Booth, L., Smith, A. B., 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, 714–724.PubMedCrossRefGoogle Scholar
  44. 44.
    Wright, E. P., Selby, P. J., Crawford, M., et al. (2003). Feasibility and compliance of automated measurement of quality of life in oncology practice. Journal of Clinical Oncology, 21, 374–382.PubMedCrossRefGoogle Scholar
  45. 45.
    Espallargues, M., Valderas, J. M., & Alonso, J. (2000). Provision of feedback on perceived health status to health care professionals: A systematic review of its impact. Medical Care, 38, 175–186.PubMedCrossRefGoogle Scholar
  46. 46.
    Guyatt, G. H., Ferrans, C. E., Halyard, M. Y., et al. (2007). Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. Mayo Clinic Proceedings, 82, 1229–1239.PubMedCrossRefGoogle Scholar
  47. 47.
    MacArthur, C., Winter, H. R., Bick, D. E., et al. (2002). Effects of redesigned community postnatal care on womens’ health 4 months after birth: A cluster randomised controlled trial. Lancet, 359, 378–385.PubMedCrossRefGoogle Scholar
  48. 48.
    Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1, 2–4.PubMedGoogle Scholar
  49. 49.
    Brundage, M., Leis, A., Bezjak, A., et al. (2003). Cancer patients’ preferences for communicating clinical trial quality of life information: A qualitative study. Quality of Life Research, 12, 395–404.PubMedCrossRefGoogle Scholar
  50. 50.
    Brundage, M., Feldman-Stewart, D., Leis, A., et al. (2005). Communicating quality of life information to cancer patients: A study of six presentation formats. Journal of Clinical Oncology, 23, 6949–6956.PubMedCrossRefGoogle Scholar
  51. 51.
    Hilarius, D. L., Kloeg, P. H., Gundy, C. M., & Aaronson, N. (2008). Use of health related quality of life assessments in daily clinical oncology nursing practice: A community hospital based intervention study. Cancer, 113, 628–637.PubMedCrossRefGoogle Scholar
  52. 52.
    Mathias, S. D., Fifer, S. K., Mazonson, P. D., Lubeck, D. P., Buesching, D. P., & Patrick, D. L. (1994). Necessary but not sufficient: The effect of screening and feedback on outcomes of primary care patients with untreated anxiety. Journal of General Internal Medicine, 9, 606–615.PubMedCrossRefGoogle Scholar
  53. 53.
    Magruder-Habib, K., Zung, W. W. K., & Feussner, J. R. (1990). Improving physicians’ recognition and treatment of depression in general medical care. Results from a randomized clinical trial. Medical Care, 28, 239–250.PubMedCrossRefGoogle Scholar
  54. 54.
    Reifler, D. R., Kessler, H. S., Bernhard, E. J., Leon, A. C., & Martin, G. J. (1996). Impact of screening for mental health concerns on health service utilization and functional status in primary care patients. Archives of Internal Medicine, 156, 2593–2599.PubMedCrossRefGoogle Scholar
  55. 55.
    Gilbody, S., Sheldon, T., & Wessely, S. (2006). Should we screen for depression? BMJ, 332, 1027–1030.PubMedCrossRefGoogle Scholar
  56. 56.
    Rosenbloom, S. K., Victorson, D. E., Hahn, E. A., Peterman, A., & Cella, D. (2007). Assessment is not enough: A randomized controlled trial of the effects of HRQoL assessment on quality of life and satisfaction in oncology clinical practice. Psychooncology, 16, 1069–1079.PubMedCrossRefGoogle Scholar
  57. 57.
    Gutteling, J. J., Darlington, A. S., Janssen, H. L., Duivenvoorden, H. J., Busschbach, J. J., & de Man, R. A. (2008). Effectiveness of health related quality of life measurement in clinical practice: a prospective, randomised controlled trial in patients with chronic liver disease and their physicians. Quality of Life Research, 17, 195–205.PubMedCrossRefGoogle Scholar
  58. 58.
    Donaldson, G. (2008). Patient reported outcomes and the mandate for measurement. Quality of Life Research, 17, 1303–1313.PubMedCrossRefGoogle Scholar
  59. 59.
    Hays, R., Brodsky, M., Johnston, M. F., Spritzer, K. L., & Hui, K.-K. (2005). Evaluating the statistical significance of health related quality of life change in individual patients. Evaluation & the Health Professions, 28, 160–171.CrossRefGoogle Scholar
  60. 60.
    Kemmler, G., Zabernigg, A., Gattringer, K., et al. (2010). A new approach to combining clinical relevance and statistical significance for evaluation of quality of life changes in the individual patient. Journal of Clinical Epidemiology, 63, 171–179.PubMedCrossRefGoogle Scholar
  61. 61.
    De Vet, H. C., & Terwee, C. B. (2010). The minimal detectable change should not replace the minimal important change. Journal of Clinical Epidemiology, 63, 804–805.PubMedCrossRefGoogle Scholar
  62. 62.
    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.[comment]. Medical Care, 41, 582–592.PubMedGoogle Scholar
  63. 63.
    Kosinski, M., Zhao, S. Z., Dedhiya, S., Osterhaus, J. T., & Ware, J. E. (2000). Determining minimally important changes in generic and disease specific health related quality of life questionnaires in clinical trials of rheumatoid arthritis. Arthritis and Rheumatism, 43, 1478–1487.PubMedCrossRefGoogle Scholar
  64. 64.
    Cella, D., Eton, D. T., Lai, J. S., Peterman, A. H., & Merkel, D. E. (2002). Combining anchor and distribution-based methods to derive minimal clinically important differences on the functional assessment of cancer therapy (FACT) anemia and fatigue scales. Journal of Pain and Symptom Management, 24, 547–561.PubMedCrossRefGoogle Scholar
  65. 65.
    Wyrwich, K. W., Bullinger, M., Aaronson, N., et al. (2005). Estimating clinically significant differences in quality of life outcomes. Quality of Life Research, 14, 285–295.PubMedCrossRefGoogle Scholar
  66. 66.
    Wyrwich, K. W., Nienaber, N. A., Tierney, W. M., & Wolinsky, F. D. (1999). Linking clinical relevance and statistical significance in evaluating intra-individual changes in health-related quality of life. Medical Care, 37, 469–478.PubMedCrossRefGoogle Scholar
  67. 67.
    Wyrwich, K. W., & Wolinsky, F. D. (2000). Identifying meaningful intra-individual change standards for health-related quality of life measures. Journal of Evaluation in Clinical Practice, 6, 39–49.PubMedCrossRefGoogle Scholar
  68. 68.
    Donaldson, M. S. (2004). Taking stock of health-related quality-of-life measurement in oncology practice in the United States. Journal of the National Cancer Institute Monographs, 33, 155–167.PubMedCrossRefGoogle Scholar
  69. 69.
    Callahan, M. B. (2001). Using quality of life measurement to enhance interdisciplinary collaboration. Advances in Renal Replacement Therapy, 8, 148–151.PubMedCrossRefGoogle Scholar
  70. 70.
    Greenhalgh, J., Flynn, R., Long, A. F., & Tyson, S. (2008). Tacit and encoded knowledge in the use of standardised outcome measures in multidisciplinary team decision making: a case study of in-patient neurorehabilitation. Social Science and Medicine, 67, 183–194.PubMedCrossRefGoogle Scholar
  71. 71.
    Meyer, K. B., Espindle, D. M., DeGiacomo, J. M., Jenuleson, C. S., Kurtin, P. S., & Davies, A. R. (1994). Monitoring dialysis patients’ health status. American Journal of Kidney Diseases, 24, 267–279.PubMedGoogle Scholar
  72. 72.
    Gilbody, S. M., House, A. O., & Sheldon, T. A. (2002). Psychiatrists in the UK do not use outcomes measures. National survey. British Journal of Psychiatry, 180, 101–103.PubMedCrossRefGoogle Scholar
  73. 73.
    Campbell, D. T., & Stanley, J. C. (1963). Experimental and Quasi-experimental designs for research. Chicago: Rand McNally College Publishing Company.Google Scholar
  74. 74.
    Berwick, D. M. (2008). The science of improvement. JAMA, 299, 1182–1184.PubMedCrossRefGoogle Scholar
  75. 75.
    Nelson, E. C., Splaine, M. E., Plume, S. K., & Batalden, P. (2004). Good measurement for good improvement work. Quality Management in Health Care, 13, 1–16.PubMedGoogle Scholar
  76. 76.
    Pawson, R., & Tilley, N. (1997). Realistic evaluation. London: Sage Publications, Ltd.Google Scholar
  77. 77.
    Baker, G. R. (2006). Strengthening the contributions of quality improvement research to evidence based healthcare. Quality and Safety in Health Care, 15, 150–151.PubMedCrossRefGoogle Scholar
  78. 78.
    Campbell, M., Fitzpatrick, R., Haines, A., et al. (2000). Framework for design and evaluation of complex interventions to improve health. BMJ, 321, 694–696.PubMedCrossRefGoogle Scholar
  79. 79.
    Berwick, D. M. (1998). Developing and testing changes in delivery of care. Annals of Internal Medicine, 128, 651–656.PubMedGoogle Scholar
  80. 80.
    Batalden, P. B., & Davidoff, F. (2007). What is “quality improvement” and how can it transform healthcare? Quality and Safety in Health Care, 16, 2–3.PubMedCrossRefGoogle Scholar
  81. 81.
    Cook, T. D., & Campbell, D. T. (1979). Quasi-experimentation: Design and analysis issues for field settings. Chicago: Rand McNally College Publishing Company.Google Scholar
  82. 82.
    Donner, A., & Klar, N. (2000). Design and analysis of cluster-randomized trials in health research. London: Arnold.Google Scholar
  83. 83.
    Fayers, P. M. (2008). Evaluating the effectiveness of using PROs in clinical practice: A role for cluster-randomized trials. Quality of Life Research, 17, 1315–1321.PubMedCrossRefGoogle Scholar
  84. 84.
    Murray, D. M. (1998). Design and analysis of group-randomized trials. New York: Oxford University Press, Inc.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Claire F. Snyder
    • 1
  • Neil K. Aaronson
    • 2
  • Ali K. Choucair
    • 3
  • Thomas E. Elliott
    • 4
  • Joanne Greenhalgh
    • 5
  • Michele Y. Halyard
    • 6
  • Rachel Hess
    • 7
  • Deborah M. Miller
    • 8
  • Bryce B. Reeve
    • 9
  • Maria Santana
    • 10
  1. 1.Johns Hopkins School of MedicineBaltimoreUSA
  2. 2.The Netherlands Cancer InstituteUniversity of AmsterdamAmsterdamThe Netherlands
  3. 3.Norton HealthcareLouisvilleUSA
  4. 4.Essentia Institute of Rural HealthEssentia HealthDuluthUSA
  5. 5.School of Sociology and Social PolicyLeedsUK
  6. 6.Radiation OncologyMayo ClinicScottsdaleUSA
  7. 7.Center for Research on Health CareUniversity of PittsburghPittsburghUSA
  8. 8.Mellen/NeurologyCleveland ClinicClevelandUSA
  9. 9.Lineberger Comprehensive Cancer Center and Gillings School of Global Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  10. 10.University of CalgaryCalgaryCanada

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