PROMs vs. PREMs (Patient-Reported Experience Measures)

  • Marwan BukhariEmail author


Patient-reported outcomes as well as experience measures are now the big news in the modern health service. The importance comes from their growing potential to trigger changes in healthcare delivery. Adopting these tools in standard clinical practice represents a major step forward toward patient-centered care and a new approach to assess outcomes of medical care. This chapter explores exactly what these terminologies mean. It demonstrates the differences between experience and outcome measures and reviews the evidence/need for patient-reported experience measures (PREMs) in inflammatory arthritic conditions management. The interface between PREMs and quality of care in inflammatory arthritis conditions is analyzed in comparison to diabetes mellitus as an example of chronic disease medical care. Examples of PREMs tools developed recently are included in the appendices.


Rheumatoid arthritis Patient-reported outcome measures Patient-reported experience measures PREMs 


  1. 1.
    McKenna SP. Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Med. 2011;9:86.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    Doward LC, McKenna SP. Defining patient-reported outcomes. Value Health. 2004;7 Suppl 1:S4–8.CrossRefPubMedGoogle Scholar
  3. 3.
    Salisbury C, Wallace M, Montgomery AA. Patients’ experience and satisfaction in primary care: secondary analysis using multilevel modelling. BMJ. 2010;341:c5004.CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Jenkinson C, Coulter A, Bruster S, et al. Patients’ experiences and satisfaction with health care: results of a questionnaire study of specific aspects of care. Qual Saf Health Care. 2002;11:335–9.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Jenkinson C, Coulter A, Bruster S. The Picker Patient Experience Questionnaire: development and validation using data from in-patient surveys in five countries. Int J Qual Health Care. 2002;14(5):353–8.CrossRefPubMedGoogle Scholar
  6. 6.
    Sixma HJ, Kerssens JJ, Campen CV, Peters L. Quality of care from the patients’ perspective: from theoretical concept to a new measuring instrument. Health Expect. 1998;1:82–95.CrossRefPubMedGoogle Scholar
  7. 7.
    Brod M, Skovlund SE, Wittrup-Jensen KU. Measuring the impact of diabetes through patient report of treatment satisfaction, productivity and symptom experience. Qual Life Res. 2006;15(3):481–91.CrossRefPubMedGoogle Scholar
  8. 8.
    Somner JE, Sii F, Bourne RR, et al. Moving from PROMs to POEMs for glaucoma care: a qualitative scoping exercise. Invest Ophthalmol Vis Sci. 2012;53(9):5940–7.CrossRefPubMedGoogle Scholar
  9. 9.
    Ramaswami U, Stull DE, Parini R, et al. Measuring patient experiences in Fabry disease: validation of the Fabry-specific Pediatric Health and Pain Questionnaire (FPHPQ). Health Qual Life Outcomes. 2012;10:116.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Kleinman L, Mannix S, Yuan Y, et al. Review of patient-reported outcome measures in chronic hepatitis C. Health Qual Life Outcomes. 2012;10:92.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Abetz L, Rajagopalan K, Mertzanis P, et al. Development and validation of the impact of dry eye on everyday life (IDEEL) questionnaire, a patient-reported outcomes (PRO) measure for the assessment of the burden of dry eye on patients. Health Qual Life Outcomes. 2011;9:111.CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Bateman E, Keefe D. Patient-reported outcomes in supportive care. Semin Oncol. 2011;38(3):358–61.CrossRefPubMedGoogle Scholar
  13. 13.
    Haywood KL, Staniszewska S, Chapman S. Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. Qual Life Res. 2012;21(1):35–52.CrossRefPubMedGoogle Scholar
  14. 14.
    Flythe JE, Powell JD, Poulton CJ, Westreich KD, Handler L, Reeve BB, Carey TS. Patient-Reported Outcome Instruments for physical symptoms among patients receiving maintenance dialysis: a systematic review. Am J Kidney Dis. 2015.;66(6):1033-46. pii: S0272-6386(15)00849-5. doi: 10.1053/j.ajkd.2015.05.020.Google Scholar
  15. 15.
    Højmark K, Støttrup C, Carreon L, Andersen MO. Patient-reported outcome measures unbiased by loss of follow-up. Single-center study based on DaneSpine, the Danish spine surgery registry. Eur Spine J. 2016;25(1):282–6. PMID: 620893.CrossRefPubMedGoogle Scholar
  16. 16.
    Kirwan JR, Fries JF, Hewlett SE, et al. Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes. J Rheumatol. 2011;38(8):1711–5.CrossRefPubMedGoogle Scholar
  17. 17.
    Khanna D, Krishnan E, Dewitt EM, et al. Patient-Reported Outcomes Measurement Information System (PROMIS®)—the future of measuring patient reported outcomes in rheumatology. Arthritis Care Res (Hoboken). 2011;63(S11):S486–90.CrossRefGoogle Scholar
  18. 18.
    Her M, Kavanaugh A. Patient-reported outcomes in rheumatoid arthritis. Curr Opin Rheumatol. 2012;24(3):327–34.CrossRefPubMedGoogle Scholar
  19. 19.
    Doganay Erdogan B, Leung YY, Pohl C, Tennant A, Conaghan PG. Minimal clinically important difference as applied in rheumatology: an OMERACT Rasch Working Group Systematic Review and Critique. J Rheumatol. 2016;43(1):194–202. pii:jrheum.141150.Google Scholar
  20. 20.
    Amaya-Amaya J, Botello-Corzo D, Calixto OJ, et al. Usefulness of patients-reported outcomes in rheumatoid arthritis focus group. Arthritis. 2012;2012:935187.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Rothrock NE, Hays RD, Spritzer K, et al. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol. 2010;63(11):1195–204.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Broderick JE, Schneider S, Junghaenel DU, et al. Validity and reliability of patient-reported outcomes measurement information system (PROMIS) instruments in osteoarthritis. Arthritis Care Res (Hoboken). 2013;65(10):1625–33. doi: 10.1002/acr.22025.Google Scholar
  23. 23.
    El Miedany Y. PROMs in inflammatory arthritis: moving from static to dynamic. Clin Rheumatol. 2013;32(6):735–42.CrossRefPubMedGoogle Scholar
  24. 24.
    Dür M, Coenen M, Stoffer MA, Fialka-Moser V, Kautzky-Willer A, Kjeken I, Drăgoi RG, Mattsson M, Boström C, Smolen J, Stamm TA. Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference. Health Qual Life Outcomes. 2015;13:27. doi: 10.1186/s12955-015-0214-8.
  25. 25.
    Sanderson T, Kirwan J. Patient-reported outcomes for arthritis: time to focus on personal life impact measures? Arthritis Rheum. 2009;61(1):1–3. doi: 10.1002/art.24270.CrossRefPubMedGoogle Scholar
  26. 26.
    Taylor PC. The importance of the patients’ experience of RA compared with clinical measures of disease activity. Clin Exp Rheumatol. 2010;28(3 Suppl 59):S28–31.PubMedGoogle Scholar
  27. 27.
    Murray CJ, Frenk J. A framework for assessing the performance of health systems. Bull World Health Organ. 2000;78(6):717–31.PubMedPubMedCentralGoogle Scholar
  28. 28.
    Hurst J, Jee-Hughes M. Performance measurement and performance management in OECD Health Systems. In: OECD labour market and social policy occasional papers no. 47. OECD Publishing; 2001. doi: 10.1787/788224073713.
  29. 29.
    Delnoij DM. Measuring patient experiences in Europe: what can we learn from the experiences in the USA and England? Eur J Public Health. 2009;19(4):354–6.CrossRefPubMedGoogle Scholar
  30. 30.
    NHS NPEF. NHS Patient Experience Framework. 2012. Accessed July 2014.
  31. 31.
    NICE clinical guideline 138. Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. Issued February 2012. Accessed Mar 2013.Google Scholar
  32. 32.
    NICE Clinical Guideline 79: the management of rheumatoid arthritis in adults. Accessed Mar 2013.
  33. 33.
    NICE QS15: Quality standard for patient experience in adult NHS services. 2012. Accessed July 2014.
  34. 34.
    Equity and excellence: liberating the NHS. 2010. Accessed Feb 2013.
  35. 35.
    HQIP RA Audit. Healthcare Quality Improvement Partnership (HQIP) National clinical audit for rheumatoid and early inflammatory arthritis. Patient data collection form—follow up at 3 months. Accessed July 2014.
  36. 36.
    How to Achieve World Class Commissioning Competencies. Practical tips for NHS Commissioners. Published October 2008. Accessed Mar 2013.
  37. 37.
  38. 38.
    Draper M, Cohen P, Buchan H, et al. Seeking consumer views: what use are results of hospital patient satisfaction surveys? International J Qual Health Care. 2001;13(6):463–8.CrossRefGoogle Scholar
  39. 39.
    Crawford MJ, Rutter D, Manley C, et al. Systematic review of involving patients in the planning and development of health care. Br Med J. 2002;325(7375):1263.CrossRefGoogle Scholar
  40. 40.
    Davies E, Cleary PD. Hearing the patient’s voice? Factors affecting the use of patient survey data in quality improvement. Qual Saf Health Care. 2005;14(6):428–32.CrossRefPubMedPubMedCentralGoogle Scholar
  41. 41.
    Richards N, Coulter A. Is the NHS becoming more patient-centred? Trends from the national surveys of NHS patients in England 2002-07. Published September 2007. Accessed March 2013.
  42. 42.
    Davies E, Shaller D, Edgman-Levitan S, et al. Evaluating the use of a modified CAHPS survey to support improvements in patient-centred care: lessons from a quality improvement collaborative. Health Expect. 2008;11(2):160–76.CrossRefPubMedGoogle Scholar
  43. 43.
    Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care. 2006;15(5):307–10.CrossRefPubMedPubMedCentralGoogle Scholar
  44. 44.
    Forbat L, Cayless S, Knighting K, et al. Engaging patients in health care: an empirical study of the role of engagement on attitudes and action. Patient Educ Couns. 2009;74(1):84–90.CrossRefPubMedGoogle Scholar
  45. 45.
    Land L, Hathorn E, Ross JD. Using patient experience to measure the quality of HIV care. Int J STD AIDS. 2011;22(7):366–7.CrossRefPubMedGoogle Scholar
  46. 46.
    Richards N, Coulter A. Is the NHS becoming more patient-centred? Trends from the national surveys of NHS patients in England 2002–07. Oxford: Picker Institute Europe; 2007.Google Scholar
  47. 47.
    Sequist TD, Von Glahn T, Li A, et al. Measuring chronic care delivery: patient experiences and clinical performance. Int J Qual Health Care. 2012;24(3):206–13.CrossRefPubMedGoogle Scholar
  48. 48.
    Developing a patient reported experience measure for chronic obstructive pulmonary disease (PREM-COPD). Final report. Accessed Feb 2013
  49. 49.
    Lagha E, Noble A, Smith A, et al. Patient reported experience measures (PREMs) in chronic heart failure. J R Coll Physicians Edinb. 2012;42(4):301–5.CrossRefPubMedGoogle Scholar
  50. 50.
    Diabetes Patient Experience Project (DPEP). Accessed Mar 2013.
  51. 51.
    Christie D. Developing the National Paediatric Diabetes Audit Patient Reported Experience Measure. Diabetes Care Child Young People. 2012;1(2):47–8.Google Scholar
  52. 52.
    Drewes HW, de Jong-van Til JT, Struijs JN, Baan CA, Tekle FB, Meijboom BR, Westert GP. Measuring chronic care management experience of patients with diabetes: PACIC and PACIC+ validation. Int J Integrated Care 2012;12:1–11.Google Scholar
  53. 53.
    Sokka T, Rannio T, Khan NA. Disease activity assessment and patient-reported outcomes in patients with early rheumatoid arthritis. Rheum Dis Clin North Am. 2012;38(2):299–310.CrossRefPubMedGoogle Scholar
  54. 54.
    Dougados M, Brault Y, Logeart I, et al. Defining cut-off values for disease activity states and improvement scores for patient-reported outcomes: the example of the Rheumatoid Arthritis Impact of Disease (RAID). Arthritis Res Ther. 2012;14(3):R129.CrossRefPubMedPubMedCentralGoogle Scholar
  55. 55.
    Firth J. Rheumatoid arthritis: diagnosis and multidisciplinary management. Br J Nurs. 2011;20(18):1179–80, 1182, 1184–5.Google Scholar
  56. 56.
    Rademakers J, Delnoij D, Nijman J, et al. Educational inequalities in patient-centred care: patients’ preferences and experiences. BMC Health Serv Res. 2012;12:261.CrossRefPubMedPubMedCentralGoogle Scholar
  57. 57.
    John H, Hale ED, Treharne GJ, et al. A randomized controlled trial of a cognitive behavioural patient education intervention vs a traditional information leaflet to address the cardiovascular aspects of rheumatoid disease. Rheumatology (Oxford). 2013;52(1):81–90.CrossRefGoogle Scholar
  58. 58.
    Carter M. The experiences of patients with rheumatoid arthritis admitted to hospital focused on 5 interrelated themes. Evid Based Nurs. 2002;5(2):63.CrossRefPubMedGoogle Scholar
  59. 59.
    El Miedany Y, El Gaafary M, Youssef S, Ahmed I, Palmer D. The arthritic patients’ perspective of measuring treatment efficacy: patient reported experience measures (PREMs) as a quality tool. Clin Exp Rheumatol. 2014;32(4):547–52. Epub 2014 Jun 30.PubMedGoogle Scholar
  60. 60.
    Bosworth A, Cox M, O’Brien A, Jones P, Sargeant I, Elliott A, Bukhari M. Development and validation of a Patient Reported Experience Measure (PREM) for patients with rheumatoid arthritis (RA) and other rheumatic conditions. Curr Rheumatol Rev. 2015 May 21.Google Scholar
  61. 61.
    Understanding what matters: a guide to using patient feedback to transform services. 2009. Accessed Feb 2013.
  62. 62.
    Hahn EA, Cella D, Dobrez D, et al. The talking touchscreen: a new approach to outcomes assessment in low literacy. Psychooncology. 2004;13(2):86–95.CrossRefPubMedGoogle Scholar
  63. 63.
    Salaffi F, Gasparini S, Grassi W. The use of computer touch-screen technology for the collection of patient-reported outcome data in rheumatoid arthritis: comparison with standardized paper questionnaires. Clin Exp Rheumatol. 2009;27(3):459–68.PubMedGoogle Scholar
  64. 64.
    Wallace AS, Carlson JR, Malone RM, et al. The influence of literacy on patient-reported experiences of diabetes self-management support. Nurs Res. 2010;59(5):356–63.CrossRefPubMedPubMedCentralGoogle Scholar
  65. 65.
    Paddison C, Elliott M, Parker R, et al. Should measures of patient experience in primary care be adjusted for case mix? Evidence from the English General Practice Patient Survey. BMJ Qual Saf. 2012;21(8):634–40.CrossRefPubMedPubMedCentralGoogle Scholar
  66. 66.
    Bowling A, Rowe G, Lambert N, et al. The measurement of patients’ expectations for health care: a review and psychometric testing of a measure of patients’ expectations. Health Technol Assess. 2012;16(30):i–xii, 1–509.Google Scholar
  67. 67.
    Robert G, Waite R, Cornwell J, et al. Understanding and improving patient experience: a national survey of training courses provided by higher education providers and healthcare organizations in England. Nurse Educ Today. 2014;34(1):112–20. pii:S0260-6917(12)00364-4.Google Scholar
  68. 68.
    Phillpotts C, Creamer P, Andrews T. Teaching medical students about chronic disease: patient-led teaching in rheumatoid arthritis. Musculoskeletal Care. 2010;8(1):55–60.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  1. 1.Department of RheumatologyRoyal Lancaster InfirmaryLancasterUK

Personalised recommendations