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Patient Reported Outcome Measures in Rheumatic Diseases pp 101–120Cite as

PROMs for Rheumatoid Arthritis

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Abstract

Patient-reported outcomes are reports coming directly from patients about how they feel or function in relation to a health condition and its therapy without interpretation by healthcare professionals or anyone else. Challenges of using patient-reported outcome measures (PROMs) in standard clinical practice were attributed, in the past, to clinicians’ skepticism, time and resources for the implementation, validity of the PROMs tool, unfamiliarity with the interpretation of patient’s scores, and implementation costs. However, these concerns are diminishing now, as PROMs has booked its place in the management of inflammatory arthritic patients. In view of the fact that there is no surrogate outcome measure available to capture the patient’s disease activity status, well-being, and response to treatment, PROMs has been endorsed as a primary outcome in clinical research studies. PROMs directly measure treatment benefit beyond survival, disease activity, and physiologic markers, and are often the outcomes of greatest importance to patients. Recently, PROMs has progressed from the generic phase into a “disease-specific” era. This chapter will discuss the evolving role of PROMs in the assessment and management of patients suffering from rheumatoid arthritis, how it helped in transforming patient-centered care concept into reality, and whether PROMs can be utilized as a biomarker for rheumatoid arthritis patients.

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References

  1. Arthritis Alliance of Canada. The impact of arthritis in Canada: today and over the next 30 years. 2011. http://www.arthritisnetwork.ca/downloads/20111022_Impact_of_arthritis.pdf. Accessed 20 Jul 2012.

  2. El Miedany Y. Comorbidity index in rheumatoid arthritis. Time to think. Clin Rheumatol. 2015;34:1995–2000.

    Article  PubMed  Google Scholar 

  3. Palmer D, El Miedany Y. Shared decision making for patients living with inflammatory arthritis. Br J Nurs. 2016;25(1):2–6.

    Article  Google Scholar 

  4. Boers M, Tugwell P, Felson DT, van Riel PL, Kirwan JR, Edmonds JP, et al. World Health Organization and International League of Associations for Rheumatology core endpoints for symptom modifying antirheumatic drugs in rheumatoid arthritis clinical trials. J Rheumatol. 1994;21 Suppl 41:86–9.

    Google Scholar 

  5. Felson DT, Anderson JJ, Boers M, Bombardier C, Chernoff M, Fried B, et al. The American College of Rheumatology preliminary core set of disease activity measures for rheumatoid arthritis clinical trials. The committee on outcome measures in rheumatoid arthritis clinical trials. Arthritis Rheum. 1993;36:729–40.

    Article  CAS  PubMed  Google Scholar 

  6. Gossec L, Dougados M, Rincheval N, Balanescu A, Boumpas DT, Canadelo S, et al. Elaboration of the preliminary rheumatoid arthritis impact of disease (RAID) score: a EULAR initiative. Ann Rheum Dis. 2009;68(11):1680–5.

    Article  CAS  PubMed  Google Scholar 

  7. Aletaha D, Landewe R, Karonitsch T, Bathon J, Boers M, Bombardier C, et al. Reporting disease activity in clinical trials of patients with rheumatoid arthritis: EULAR/ACR collaborative recommendations. Ann Rheum Dis. 2008;67:1360–4.

    Article  CAS  PubMed  Google Scholar 

  8. Pincus T, Wolfe F. Patient questionnaires for clinical research and improved standard patient care: is it better to have 80% of the information in 100% of patients or 100% of the information in 5% of patients? J Rheumatol. 2005;32:575–7.

    PubMed  Google Scholar 

  9. El Miedany Y, El Gaafary M, Ahmed I, Youssef S, Nasr A. US guided treat-to-target approach in early RA: implications for uncoupling of disease activity and structural joint damage. Curr Rheumatol Rev. 2015;11:18–27.

    Article  Google Scholar 

  10. Saag KG, Yazdany J, Alexander C, Caplan L, Coblyn J, Desai SP, American College of Rheumatology Quality Measurement White Paper Development Workgroup, et al. Defining quality of care in rheumatology: the American College of Rheumatology white paper on quality measurement. Arthritis Care Res (Hoboken). 2011;63(1):2–9.

    Article  Google Scholar 

  11. Cadena J, Vinaccia S, Pérez A, Rico MI, Hinojosa R, Anaya JM. The impact of disease activity on the quality of life, mental health status and family dysfunction in Colombian patients with rheumatoid arthritis. J Clin Rheumatol. 2003;9(3):142–50.

    Article  PubMed  Google Scholar 

  12. Smedstad LM, Vaglum P, Kvien TK, Moum T. The relationship between self-reported pain and sociodemographic variables, anxiety and depressive symptoms in rheumatoid arthritis. J Rheumatol. 1995;22(3):514–20.

    CAS  PubMed  Google Scholar 

  13. Birrell FN, Hassell AB, Jones PW, Dawes PT. How does the short form 36 health questionnaire (SF-36) in rheumatoid arthritis relate to RA outcome measures and SF-36 population values? A cross sectional study. Clin Rheumatol. 2000;19(3):195–9.

    Article  CAS  PubMed  Google Scholar 

  14. El Miedany Y, Palmer D, Jilani A, El Gaafary M. Outcome measures in rheumatoid arthritis in standard clinical practice: patient self report joint tenderness Vs physician performed joint evaluation. Rheumatology (Oxford). 2008;47(S2):ii141.

    Google Scholar 

  15. van der Heijde DM, Van’t Hof M, van Riel PL, van de Putte LB. Development of a disease activity score based on judgment in clinical practice by rheumatologists. J Rheumatol. 1993;20:579–81.

    PubMed  Google Scholar 

  16. Pincus T, Yazici Y, Bergman MJ. 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. Rheum Dis Clin North Am. 2009;35:773–8.

    Article  PubMed  Google Scholar 

  17. Pincus T. A multidimensional health assessment questionnaire (MDHAQ) for all patients with rheumatic diseases to complete at all visits in standard clinical care. Bull NYU Hosp Jt Dis. 2007;65(2):150–60.

    PubMed  Google Scholar 

  18. El Miedany Y, El Gaafary M, Youssef S, Palmer D. Incorporating patient reported outcome measures in clinical practice: development and validation of a questionnaire for inflammatory arthritis. Clin Exp Rheumatol. 2010;28:734–44.

    PubMed  Google Scholar 

  19. El Miedany Y, El Gaafary M, Youssef S, Mehanna AN. Development of a scoring system for assessment of outcome of early undifferentiated inflammatory synovitis. Jt Bone Spine. 2008;75(2):155–62.

    Article  Google Scholar 

  20. Pincus T, Callahan LF, Sale WG, Brooks AL, Payne LE, Vaughn WK. Severe functional declines, work disability, and increased mortality in seventy-five rheumatoid arthritis patients studied over nine years. Arthritis Rheum. 1984;27(8):864–72.

    Article  CAS  PubMed  Google Scholar 

  21. Singh JA, Saag KG, Bridges Jr SL, Akl EA, Bannuru RR, Sullivan MC, et al. American College of Rheumatology guideline for the treatment of rheumatoid arthritis. Arthritis Care Res. 2016;68(1):1–26.

    Article  Google Scholar 

  22. El Miedany Y, El Gaafary M, Youssef S, Palmer D. Physician versus patient global assessment in early rheumatoid arthritis: putting the cart before the horse. Ann Rheum Dis. 2014;73 Suppl 2:616–7.

    Google Scholar 

  23. Aletaha D, Neogi T, Silman AJ, Funovits J, Felson DT, Bingham 3rd CO, et al. Rheumatoid arthritis classification criteria an American College of Rheumatology/European league against rheumatism collaborative initiative. Arthritis Rheum. 2010;62(9):2569–81.

    Article  PubMed  Google Scholar 

  24. El Miedany Y, El Gaafary M, Palmer D. Assessment of the utility of visual feedback in the treatment of early rheumatoid arthritis patients: a pilot study. Rheumatol Int. 2012;32(10):3061–8.

    Article  PubMed  Google Scholar 

  25. Rimer B, Jones WL, Keintz MK, Catalono RB, Engstrom PF. Informed consent: a crucial step in cancer patient education. Health Educ Q. 1984;10(Suppl):30–42.

    PubMed  Google Scholar 

  26. Heneghan K, Sachdeva A, McAninch J. Transformation to a system that supports full patient participation. Bull Am Coll Surg. 2009;91(6):12–20.

    Google Scholar 

  27. Hardware B, Lacey E, Shewan J. Towards the development of a tool to assess educational needs in patients with arthritis. Clin Eff Nurs. 2004;8:111–7.

    Article  Google Scholar 

  28. National Institute for Health and Clinical Excellence. The management of rheumatoid arthritis in adults. Clinical guideline 79. 2012. http://tiny.cc/lbah0. Accessed 14 Nov 2012.

  29. Smolen JS, Landewé R, Breedveld FC, Dougados M, Emery P, Gaujoux-Viala C, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs. Ann Rheum Dis. 2010;69(6):964–75.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Ndosi M, Adebajo A. Patient education in rheumatoid arthritis: is the needs-based approach the way forward? Clin Rheumatol. 2015;34(11):1827–9.

    Article  PubMed  Google Scholar 

  31. Palmer D, El Miedany Y. PROMs: a novel approach to arthritis self-management. Br J Nurs. 2012;21(10):601–5.

    Article  PubMed  Google Scholar 

  32. El Miedany Y, El Gaafary M, El Arousy N, Ahmed I, Youssef S, Palmer D. Arthritis education: the integration of patient reported outcome measures and patient self-management. Clin Exp Rheumatol. 2012;30(6):899–904.

    PubMed  Google Scholar 

  33. American College of Physicians. Information on cost effectiveness: an essential product of a national comparative effectiveness program. Ann Intern Med. 2008;148:956–61.

    Article  Google Scholar 

  34. Rawlins MD, Culyer AJ. National Institute for Clinical Excellence and its value judgments. Br Med J. 2004;329:224–7.

    Article  Google Scholar 

  35. British Thoracic Society. Jargon buster. British Thoracic Society reports 2010; 2(1). http://www.impressresp.com/index.php?export=pdf&no_html=1&option=com_glossary&task=list&letter=P&Itemid=2. Accessed 13 Nov 2012.

  36. El Miedany Y, El Gaafary M, Youssef S, Palmer D. Patient reported outcome measures: its impact on disease activity and adherence to therapy in inflammatory arthritis. Arthritis Rheum. 2011;63(S10):1753–8.

    Google Scholar 

  37. Michaud K, Wolfe F. Comorbidities in rheumatoid arthritis. Best Pract Res Clin Rheumatol. 2007;21(5):885–906.

    Article  PubMed  Google Scholar 

  38. El Miedany Y. PROMs in inflammatory arthritis: moving from static to dynamic. Clin Rheumatol. 2013;32(6):735–42.

    Article  PubMed  Google Scholar 

  39. El Miedany Y, El Gaafary M, Youssef S, Palmer D. Answering the difficult question: how to identify rheumatoid arthritis patients at higher risk of cardiovascular disease in the standard practice? Ann Rheum Dis. 2009;68 Suppl 3:78.

    Google Scholar 

  40. Tugwell P, Bombardier C. A methodologic framework for developing and selecting endpoints in clinical trials. J Rheumatol. 1982;9:758–62.

    CAS  PubMed  Google Scholar 

  41. Bomardier C, Tugwell P. A methodological framework to develop and select indices for clinical trials: statistical and judgmental approaches. J Rheumatol. 1982;9:753–7.

    Google Scholar 

  42. Tugwell P, Boers M. OMERACT Committee. Proceedings of the OMERACT conferences on outcome measures in rheumatoid arthritis clinical trials, Maastrict, Netherlands. J Rheumatol. 1993;20:527–91.

    Google Scholar 

  43. van der Heijde DM, Van’t Hof MA, van Riel PL, Theunisse LA, Lubberts EW, van Leeuwen MA, et al. Judging disease activity in clinical practice in rheumatoid arthritis: first step in the development of a disease activity score. Ann Rheum Dis. 1990;49:916–20.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Prevoo ML, Van’t Hof MA, Kuper HH, van Leeuwen MA, van de Putte LB, van Riel PL. Modified disease activity scores that include twenty-eight-joint counts: development and validation in a prospective longitudinal study of patients with rheumatoid arthritis. Arthritis Rheum. 1995;38(1):44–8.

    Article  CAS  PubMed  Google Scholar 

  45. Aletaha D, Smolen J. The simplified disease activity index (SDAI) and the clinical disease activity index (CDAI): a review of their usefulness and validity in rheumatoid arthritis. Clin Exp Rheumatol. 2005;23:S100–8.

    CAS  PubMed  Google Scholar 

  46. Bellamy N, Buchanan WW, Goldsmith CH, Campbell J, Stitt LW. Validation study of WOMAC: a health status instrument for measuring clinically important patient relevant outcomes to antirheumatic drug therapy in patients with osteoarthritis of the hip or knee. J Rheumatol. 1988;15(2):1833–40.

    CAS  PubMed  Google Scholar 

  47. Burckhardt CS, Clark SR, Bennett RM. The fibromyalgia impact questionnaire: development and validation. J Rheumatol. 1991;18:728–33.

    CAS  PubMed  Google Scholar 

  48. Hawker G, Gabriel S, Bombardier C, Goldsmith C, Caron D, Gladman D. A reliability study of SLEDAI: a disease activity index for systemic lupus erythematosus. J Rheumatol. 1993;20:657–60.

    CAS  PubMed  Google Scholar 

  49. Hay EM, Bacon PA, Gordon C, Isenberg DA, Maddison P, Snaith ML, et al. The BILAG index: a reliable and valid instrument for measuring clinical disease activity in systemic lupus erythematosus. Q J Med. 1993;86(7):447–58.

    CAS  PubMed  Google Scholar 

  50. Swaak AJ, van den Brink HG, Smeenk RJ, Manger K, Kalden JR, Tosi S, et al. Systemic lupus erythematosus: disease outcome in patients with a disease duration of at least 10 years: second evaluation. Lupus. 2001;10(1):51–8.

    Article  CAS  PubMed  Google Scholar 

  51. Petri M, Hellmann DB, Hochberg M. Validity and reliability of lupus activity measures in the routine clinic setting. J Rheumatol. 1992;19:53–9.

    CAS  PubMed  Google Scholar 

  52. Mosca M, Bencivelli W, Vitali C, Carrai P, Neri R, Bombardieri S. The validity of the ECLAM index for the retrospective evaluation of disease activity in systemic lupus erythematosus. Lupus. 2000;9(6):445–50.

    Article  CAS  PubMed  Google Scholar 

  53. Bencivelli W, Vitali C, Isenberg DA, Smolen JS, Snaith ML, Sciuto M, et al. Disease activity in systemic lupus erythematosus: report of the consensus study group of the European workshop for rheumatology research. III. Development of a computerised clinical chart and its application to the comparison of different indices of disease activity. The European consensus study group for disease activity in SLE. Clin Exp Rheumatol. 1992;10(5):549–54.

    CAS  PubMed  Google Scholar 

  54. Calin A, Garrett S, Whitelock H, Kennedy LG, O'Hea J, Mallorie P, et al. A new approach to defining functional ability in ankylosing spondylitis: the development of the bath ankylosing spondylitis functional index. J Rheumatol. 1994;21(12):2281–5.

    CAS  PubMed  Google Scholar 

  55. Machado P, Landewé R, Lie E, Kvien TK, Braun J, Baker D, et al. Ankylosing spondylitis disease activity score (ASDAS): defining cut-off values for disease activity states and improvement scores. Ann Rheum Dis. 2011;70(1):47–53.

    Article  PubMed  Google Scholar 

  56. Luqmani RA, Bacon PA, Moots RJ, Janssen BA, Pall A, Emery P, et al. Birmingham vasculitis activity score (BVAS) in systemic necrotizing vasculitis. Q J Med. 1994;87(11):671–8.

    CAS  Google Scholar 

  57. Whiting O’Keefe QE, Stone JH, Hellmann DB. Validity of a vasculitis activity index for systemic necrotizing vasculitis. Arthritis Rheum. 1999;42:2365–71.

    Article  PubMed  Google Scholar 

  58. Stone JH, Hoffman GS, Merkel PA, Min YI, Uhlfelder ML, Hellmann DB, et al. A disease-specific activity index for Wegener’s granulomatosis: modification of the Birmingham vasculitis activity score. Arthritis Rheum. 2001;44(4):912–20.

    Article  CAS  PubMed  Google Scholar 

  59. Pincus T, Yazici Y, Sokka T. Quantitative measures of rheumatic diseases for clinical research versus standard clinical care: differences, advantages and limitations. Best Pract Res Clin Rheumatol. 2007;21(4):601–28.

    Article  PubMed  Google Scholar 

  60. Wolfe F, Michaud K. The clinical and research significance of the erythrocyte sedimentation rate. J Rheumatol. 1994;21:1227–37.

    CAS  PubMed  Google Scholar 

  61. Bowling A. Measuring disease: a review of disease-specific quality of life measurement scales, vol. 2. Buckingham: Open University Press; 2001. p. 25–6.

    Google Scholar 

  62. Brooks R. EuroQol: the current state of play. Health Policy. 1996;37(1):53–72.

    Article  CAS  PubMed  Google Scholar 

  63. Ebrahim S, Barer D, Nouri F. Use of the Nottingham Health Profile with patients after a stroke. J Epidemiol Community Health. 1986;40(2):166–9.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  64. Meadows K. Patient-reported outcome measures: an overview. Br J Community Nurs. 2011;16(3):146–51.

    Article  PubMed  Google Scholar 

  65. Pincus T, Yazici Y, Bergman M. Development of a multi-dimensional health assessment questionnaire (MDHAQ) for the infrastructure of standard clinical care. Clin Exp Rheumatol. 2005;23 Suppl 39:S19–28.

    CAS  PubMed  Google Scholar 

  66. Nicklin J, Cramp F, Kirwan J, Greenwood R, Urban M, Hewlett S. Measuring fatigue in rheumatoid arthritis: a cross-sectional study to evaluate the Bristol rheumatoid arthritis fatigue multi-dimensional questionnaire, visual analog scales, and numerical rating scales. Arthritis Care Res. 2010;32:1559–68.

    Article  Google Scholar 

  67. Osterhaus JT. Discriminant validity, responsiveness and reliability of the rheumatoid arthritis-specific work productivity survey (WPS-RA). Arthritis Res Ther. 2009;11:R73.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Pincus T, Swearingen C, Wolfe F. Toward a multidimensional health assessment questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. Arthritis Rheum. 1999;42:2220–30.

    Article  CAS  PubMed  Google Scholar 

  69. Gossec L, Paternotte S, Aanerud GJ, Balanescu A, Boumpas DT, Carmona L, et al. Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Ann Rheum Dis. 2011;70(6):935–42.

    Article  CAS  PubMed  Google Scholar 

  70. Pincus T. Pain, function, and RAPID scores: vital signs in chronic diseases, analogous to pulse and temperature in acute diseases and blood pressure and cholesterol in long-term health. Bull NYU Hosp Joint Dis. 2008;66(2):155–65.

    Google Scholar 

  71. El Miedany Y, Palmer D, El Gaafary M. Further analysis of helplessness measurement in inflammatory arthritis/spondyloarthritis: the development of the modified rheumatology attitude index. Rheumatology (Oxford). 2010;49(S1):162.

    Google Scholar 

  72. Maksymowych WP, Fitzgerald O, Wells GA, Gladman DD, Landewé R, Ostergaard M, et al. Proposal for levels of evidence schema for validation of a soluble biomarker reflecting damage endpoints in rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis, and recommendations for study design. J Rheumatol. 2009;36(8):1792–9.

    Article  PubMed  Google Scholar 

  73. Biomarkers Definition Working Group. Biomarkers and surrogate endpoints: preferred definitions and conceptual framework. Clin Pharmacol Ther. 2001;69(3):89–95.

    Article  Google Scholar 

  74. Grigor C, Capell H, Stirling A, McMahon AD, Lock P, Vallance R, et al. Effect of a treatment strategy of tight control for rheumatoid arthritis (the TICORA study): a single-blind randomised controlled trial. Lancet. 2004;364(9430):263–9.

    Article  PubMed  Google Scholar 

  75. Verstappen SM, Jacobs JW, van der Veen MJ, Heurkens AH, Schenk Y, ter Borg EJ, Utrecht Rheumatoid Arthritis Cohort study group, et al. Intensive treatment with methotrexate in early rheumatoid arthritis: aiming for remission. Computer Assisted Management in Early Rheumatoid Arthritis (CAMERA, an open-label strategy trial). Ann Rheum Dis. 2007;66(11):1443–9.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  76. Soubrier M, Lukas C, Sibilia J, Fautrel B, Roux F, Gossec L, et al. Disease activity score driven therapy versus routine care in patients with recent-onset active rheumatoid arthritis: data from the GUEPARD trial and ESPOIR cohort. Ann Rheum Dis. 2011;70(4):611–5.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  77. Schipper LG, Vermeer M, Kuper HH, Hoekstra MO, Haagsma CJ, Den Broeder AA, et al. A tight control treatment strategy aiming for remission in early rheumatoid arthritis is more effective than usual care treatment in daily clinical practice: a study of two cohorts in the Dutch Rheumatoid Arthritis Monitoring registry. Ann Rheum Dis. 2012;71(6):845–50.

    Article  CAS  PubMed  Google Scholar 

  78. El Miedany Y, El Gaafary M, Sayed S, Palmer D. Biomarkers and patient tailored approach in rheumatoid arthritis. Can PROMs be the missing biomarker. Ann Rheum Dis. 2015;74:1002.

    Article  Google Scholar 

  79. Aspinall SL, Good CB, Glassman PA, Valentino MA. The evolving use of cost-effectiveness analysis in formulary management within the Department of Veterans Affairs. Med Care. 2005;43:20–6.

    Article  PubMed  Google Scholar 

  80. Alishiri GH, Bayat N, Fathi Ashtiani A, Tavallaii SA, Assari S, Moharamzad Y. Logistic regression models for predicting physical and mental health-related quality of life in rheumatoid arthritis patients. Mod Rheumatol. 2008;18(6):601–8.

    Article  PubMed  Google Scholar 

  81. 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.

    PubMed  Google Scholar 

  82. Department of Health. Guidance on the routine collection of patient reported outcome measures (PROMs). Available from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publications/PolicyAndGuidance/DH_091451. Accessed 19 Jun 2014.

  83. Cramer JA, Roy A, Burrell A, Fairchild CJ, Fuldeore MJ, Ollendorf DA, Wong PK. Medication compliance and persistence: terminology and definitions. Value Health. 2008;11:44–7.

    Article  PubMed  Google Scholar 

  84. Luqmani R, Hennell S, Estrach C, Birrell F, Bosworth A, Davenport G, British Society for Rheumatology, British Health Professionals in Rheumatology Standards, Guidelines and Audit Working Group, et al. British Society for Rheumatology and British Health Professionals in Rheumatology guideline for the management of rheumatoid arthritis (the first two years). Rheumatology (Oxford). 2006;45(9):1167–9.

    Article  CAS  Google Scholar 

  85. Zbrozek A, Hebert J, Gogates G, Thorell R, Dell C, Molsen E, et al. Validation of electronic systems to collect patient-reported outcome (PRO) data-recommendations for clinical trial teams: report of the ISPOR ePRO systems validation good research practices task force. Value Health. 2013;16(4):480–9.

    Article  PubMed  Google Scholar 

  86. Bennett A, Jensen R, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin. 2012;62:336–47.

    Article  Google Scholar 

  87. Maguire R, McCann L, Miller M, Kearney N. Nurse’s perceptions and experiences of using of a mobile-phone-based advanced symptom management system (ASyMS) to monitor and manage chemotherapy related toxicity. Eur J Oncol Nurs. 2008;12:380–6.

    Article  CAS  PubMed  Google Scholar 

  88. El Miedany Y, El Gaafary M, Sayed S, Palmer D. Electronic patient reported outcome measures (e-PROMs) for early arthritis in standard clinical practice: a pilot study. Ann Rheum Dis. 2015;74 Suppl 2:65.

    Google Scholar 

  89. Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA. et al; ISPOR ePRO task force. Recommendations on evidence needed to support measurement equivalence between electronic and paper based patient-reported outcome (PRO) measures: ISPOR ePRO good research practices task force report. Value Health. 2009;12(4):419–29.

    Article  PubMed  Google Scholar 

  90. Horevoorts N, Vissers P, Mols F, et al. Response rates for patient-reported outcomes using web-based versus paper questionnaires: comparison of two invitational methods in older colorectal cancer patients. J Med Internet Res. 2015;17(5), e111. doi:10.2196/jmir.3741.

    Article  PubMed  PubMed Central  Google Scholar 

  91. Huffstutter J, Craig WD, Schimizzi G, Harshbarger J, Lisse J, Kasle S, et al. A multicenter, randomized, open study to evaluate the impact of an electronic data capture system on the care of patients with rheumatoid arthritis. Curr Med Res Opin. 2007;23(8):1967–79.

    Article  PubMed  Google Scholar 

  92. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient physician communication: a randomized controlled trial. JAMA. 2002;288:3027–34.

    Article  PubMed  Google Scholar 

  93. McCann L, Maguire R, Miller M, Kearney N. Patients’ perceptions and experiences of using a mobile phone-based advanced symptom management system (ASyMS) to monitor and manage chemotherapy related toxicity. Eur J Cancer Care (Engl). 2009;18:156–64.

    Article  CAS  Google Scholar 

  94. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004;22:714–24.

    Article  PubMed  Google Scholar 

  95. El Miedany Y, Palmer D. Can standard rheumatology clinical practice be patient-based? Br J Nurs. 2008;17(10):673–5.

    Article  PubMed  Google Scholar 

  96. Dy SM, Roy J, Ott GE, McHale M, Kennedy C, Kutner JS, Tien A. Tell Us™: a Web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection, and use. J Pain Symptom Manage. 2011;42(4):526–34.

    Article  PubMed  PubMed Central  Google Scholar 

  97. Gibson F, Aldiss S, Taylor RM, Maguire R, Kearney N. Involving health professionals in the development of an advanced symptom management system for young people: the ASyMS-YG study. Eur J Oncol Nurs. 2009;13:187–92.

    Article  CAS  PubMed  Google Scholar 

  98. McCall K, Keen J, Farrer K, Maguire R, McCann L, Johnston B, et al. Perceptions of the use of a remote monitoring system in patients receiving palliative care at home. Int J Palliat Nurs. 2008;14(9):426–31.

    Article  PubMed  Google Scholar 

  99. Snyder CF, Jensen R, Courtin SO, Wu AW, Website for Outpatient QOL Assessment Research Network. Patient Viewpoint: a website for patient-reported outcomes assessment. Qual Life Res. 2009;18:793–800.

    Article  PubMed  PubMed Central  Google Scholar 

  100. Palmer D, El Miedany Y. EROMIA in inflammatory arthritis: the next step in standard practice. Br J Nurs. 2010;19(1):42–6.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Honorary Senior Clinical Lecturer, King’s College London, London, UK

    Yasser El Miedany (Professor)

  2. Rheumatology and Rehabilitation, Ain Shams University, Cairo, Egypt

    Yasser El Miedany (Professor)

  3. Department of Rheumatology, Darent Valley Hospital, Gravesend, Kent, UK

    Yasser El Miedany (Professor)

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  1. Honorary Senior Clinical Lecturer, King’s College London, London, United Kingdom

    Yasser El Miedany

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El Miedany, Y. (2016). PROMs for Rheumatoid Arthritis. In: El Miedany, Y. (eds) Patient Reported Outcome Measures in Rheumatic Diseases. Springer, Cham. https://doi.org/10.1007/978-3-319-32851-5_4

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  • DOI: https://doi.org/10.1007/978-3-319-32851-5_4

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-32849-2

  • Online ISBN: 978-3-319-32851-5

  • eBook Packages: MedicineMedicine (R0)

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