Electronic Patient-Reported Outcome Measures (ePROMs) in Rheumatology

  • Jutta RichterEmail author
  • Christina Kampling
  • Matthias Schneider


Patient-reported outcome measures (PROMs) are increasingly used in rheumatology. Advantages and opportunities of the instruments have been summarized in other chapters of this book. This chapter outlines the benefits and chances added by electronic PROMs and includes a synopsis on ePROMs’ evaluation studies. Electronic assessments of PROMs bring the patients’ perspective into clinical routine care without delay. Issues that need to be taken into account when applying ePROMs are elucidated. The adoption of new applications on mobile devices and their connection to existing patient documentation systems might lead to sustained documentation of the key outcome measures and thus introduce new perspectives for an optimized care process.


Electronic patient-reported outcome measures Rheumatology Patient-documentation systems Application systems Mobile applications Mobile devices Evaluation studies Prerequisites Data security issues New care concepts 


  1. 1.
    Sargious A, Lee SJ. Remote collection of questionnaires. Clin Exp Rheumatol. 2014;32:168–72.Google Scholar
  2. 2.
    El Miedany Y. Adopting patient-centered care in standard practice: PROMs moving toward disease-specific era. Clin Exp Rheumatol. 2014;32:S40–6.Google Scholar
  3. 3.
    Roy J. Why do we need new patient-reported outcomes? J Hand Ther. 2015;28:336. doi: 10.1016/j.jht.2015.01.010.CrossRefPubMedGoogle Scholar
  4. 4.
    Ayis S, Wellwood I, Rudd AG, McKevitt C, Parkin D, Wolfe CDA, et al. Variations in Health-Related Quality of Life (HRQoL) and survival 1 year after stroke: five European population-based registers. BMJ Open. 2015;5:e007101. doi: 10.1136/bmjopen-2014-007101.Google Scholar
  5. 5.
    Jensen RE, Rothrock NE, DeWitt EM, Spiegel B, Tucker CA, Crane HM, et al. The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care. Med Care. 2015;53:153–9. doi: 10.1097/MLR.0000000000000289.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage MD. Reporting of patient-reported outcomes in randomized trials: the CONSORT PRO extension. JAMA. 2013;309:814–22. doi: 10.1001/jama.2013.879.CrossRefPubMedGoogle Scholar
  7. 7.
    El Miedany Y. PROMs in inflammatory arthritis: moving from static to dynamic. Clin Rheumatol. 2013;32:735–42. doi: 10.1007/s10067-013-2228-0.CrossRefPubMedGoogle Scholar
  8. 8.
    Snyder CF, Aaronson NK. Use of patient-reported outcomes in clinical practice. Lancet. 2009;374:369–70. doi: 10.1016/S0140-6736(09)61400-8.CrossRefPubMedGoogle Scholar
  9. 9.
    Valderas JM, Kotzeva A, Espallargues M, Guyatt G, Ferrans CE, Halyard MY, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 2008;17:179–93. doi: 10.1007/s11136-007-9295-0.CrossRefPubMedGoogle Scholar
  10. 10.
    Eriksson JK, Askling J, Arkema EV. The Swedish Rheumatology Quality Register: optimisation of rheumatic disease assessments using register-enriched data. Clin Exp Rheumatol. 2014;32:S147–9.Google Scholar
  11. 11.
    Greene ME, Rolfson O, Gordon M, Garellick G, Nemes S. Standard Comorbidity Measures Do Not Predict Patient-reported Outcomes 1 Year After Total Hip Arthroplasty. Clin Orthop Relat Res. 2015;473(11):3370–9. doi: 10.1007/s11999-015-4195-z.CrossRefPubMedGoogle Scholar
  12. 12.
    Hetland ML. DANBIO—powerful research database and electronic patient record. Rheumatology. 2011;50:69–77. doi: 10.1093/rheumatology/keq309.CrossRefPubMedGoogle Scholar
  13. 13.
    Deutsch A, Smith L, Gage B, Kelleher C, Garfinkel D. Patient-reported outcomes (PROs) workshop # 1 July 30-31, 2012: workshop summary [Internet]. 2012. Accessed 24 Sep 2015.
  14. 14.
    Snyder CF, Jensen R, Courtin SO, Wu AW. PatientViewpoint: a website for patient-reported outcomes assessment. Qual Life Res. 2009;18:793–800. doi: 10.1007/s11136-009-9497-8.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    European Medical Agency. Committee for Medicinal Products for Human Use (CMHP). Reflection paper on the regulatory guidance for the use of health-related quality of life (HRQL) measures in the evaluation of medicinal products. Doc. Ref. EMEA/CHMP/EWP/139391/2004; 2005.Google Scholar
  16. 16.
    U.S. Department of Health and Human Services Food and Drug Administration. Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims [Internet]. 2009.…/Guidances/UCM193282.pdf. Accessed 21 Sep 2015.
  17. 17.
    Locklear T, Weinfurt KP, Abernethy A, Flynn KE, Riley W, Johnson LL. Patient-reported outcome [Internet]. Accessed 21 Sep 2015.
  18. 18.
    Wilson AS, Kitas GD, Carruthers DM, Reay C, Skan J, Harris S, et al. Computerized information-gathering in specialist rheumatology clinics: an initial evaluation of an electronic version of the Short Form 36. Rheumatology. 2002;41:268–73.CrossRefPubMedGoogle Scholar
  19. 19.
    Bliven BD, Kaufman SE, Spertus JA. Electronic collection of health-related quality of life data: validity, time benefits, and patient preference. Qual Life Res. 2001;10:15–22.CrossRefPubMedGoogle Scholar
  20. 20.
    Smith SK, Rowe K, Abernethy AP. Use of an electronic patient-reported outcome measurement system to improve distress management in oncology. Palliat Support Care. 2014;12:69–73. doi: 10.1017/S1478951513000345.CrossRefPubMedGoogle Scholar
  21. 21.
    Anderson J, Caplan L, Yazdany J, Robbins ML, Neogi T, Michaud K, et al. Rheumatoid arthritis disease activity measures: American College of Rheumatology recommendations for use in clinical practice. Arthritis Care Res. 2012;64:640–7. doi: 10.1002/acr.21649.CrossRefGoogle Scholar
  22. 22.
    Van Der Wees PJ, Nijhuis-Van Der Sanden MW, Ayanian JZ, Black N, Westert GP, Schneider EC. Integrating the use of patient-reported outcomes for both clinical practice and performance measurement: views of experts from 3 countries. Milbank Q. 2014;92:754–75. doi: 10.1111/1468-0009.12091.Google Scholar
  23. 23.
    Gilek-Seibert K, Prescott K, Kazi S. Outcome assessments in rheumatoid arthritis. Curr Rheumatol Rep. 2013;15:370. doi: 10.1007/s11926-013-0370-y.CrossRefPubMedGoogle Scholar
  24. 24.
    Schoels M, Aletaha D, Smolen JS, Bijlsma JW, Burmester G, Breedveld FC, et al. Follow-up standards and treatment targets in rheumatoid arthritis: results of a questionnaire at the EULAR 2008. Ann Rheum Dis. 2010;69:575–8. doi: 10.1136/ard.2009.108472.CrossRefPubMedGoogle Scholar
  25. 25.
    Cush JJ, Curtis JR. Treat-to-target (T2T) and measuring outcomes in RA care: a 2014 longitudinal survey of US rheumatologists. Arthritis Rheumatol. 2014;66(11 Suppl):S48.Google Scholar
  26. 26.
    Ovretveit J, Keller C, Hvitfeldt Forsberg H, Essen A, Lindblad S, Brommels M. Continuous innovation: developing and using a clinical database with new technology for patient-centred care—the case of the Swedish quality register for arthritis. International J Qual Health Care. 2013;25:118–24. doi: 10.1093/intqhc/mzt002.CrossRefGoogle Scholar
  27. 27.
    Tran V, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109. doi: 10.1186/1741-7015-12-109.CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Rothman M, Gnanaskathy A, Wicks P, Papadopoulos EJ. Can we use social media to support content validity of patient-reported outcome instruments in medical product development? Value Health. 2015;18:1–4. doi: 10.1016/j.jval.2014.10.001.CrossRefPubMedGoogle Scholar
  29. 29.
    Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin. 2012;62:336–47. doi: 10.3322/caac.21150.CrossRefGoogle Scholar
  30. 30.
    Chung AE, Basch EM. Incorporating the patient’s voice into electronic health records through patient-reported outcomes as the “review of systems”. J Am Med Inform Assoc. 2015;22:914–6. doi: 10.1093/jamia/ocu007.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    McCall J. Mobile health (mHealth) and PROs [Internet]. 2014. Accessed 21 Sep 2015.
  32. 32.
    Greenwood MC. Touch-screen computer systems in the rheumatology clinic offer a reliable and user-friendly means of collecting quality-of-life and outcome data from patients with rheumatoid arthritis. Rheumatology. 2006;45:66–71. doi: 10.1093/rheumatology/kei100.CrossRefPubMedGoogle Scholar
  33. 33.
    Richter JG, Becker A, Koch T, Nixdorf M, Willers R, Monser R, et al. Self-assessments of patients via Tablet PC in routine patient care: comparison with standardised paper questionnaires. Ann Rheum Dis. 2008;67:1739–41. doi: 10.1136/ard.2008.090209.CrossRefPubMedGoogle Scholar
  34. 34.
    Strong LE. The past, present, and future of patient-reported outcomes in oncology. Am Soc Clin Oncol Educ Book 2015:e616–20.Google Scholar
  35. 35.
    Buxton J, White M, Osoba D. Patients’ experiences using a computerized program with a touch-sensitive video monitor for the assessment of health-related quality of life. Qual Life Res. 1998;7:513–9.CrossRefPubMedGoogle Scholar
  36. 36.
    Ryan JM, Corry JR, Attewell R, Smithson MJ. A comparison of an electronic version of the SF-36 General Health Questionnaire to the standard paper version. Qual Life Res. 2002;11:19–26.CrossRefPubMedGoogle Scholar
  37. 37.
    Sudano JJ, Kofford B, Wotman S. Using tablet PC’s in dental practice research: technology, cost savings, and direct data entry “on the go”. J Public Health Dent. 2005;65:244–5.CrossRefPubMedGoogle Scholar
  38. 38.
    Snyder CF, Wu AW, Miller RS, Jensen RE, Bantug ET, Wolff AC. The role of informatics in promoting patient-centered care. Cancer J. 2011;17:211–8. doi: 10.1097/PPO.0b013e318225ff89.CrossRefPubMedPubMedCentralGoogle Scholar
  39. 39.
    Desai SP, Yazdany J. Quality measurement and improvement in rheumatology: rheumatoid arthritis as a case study. Arthritis Rheum. 2011;63:3649–60. doi: 10.1002/art.30605.CrossRefPubMedPubMedCentralGoogle Scholar
  40. 40.
    Schaeren S, Bischoff-Ferrari HA, Knupp M, Dick W, Huber JF, Theiler R. A computer touch-screen version of the North American Spine Society outcome assessment instrument for the lumbar spine. J Bone Joint Surg Br. 2005;87:201–4.CrossRefPubMedGoogle Scholar
  41. 41.
    Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky AL, Roberts AC, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2013;10:e215. doi: 10.1200/JOP.2013.001067.CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Glasgow RE, Kaplan RM, Ockene JK, Fisher EB, Emmons KM. Patient-reported measures of psychosocial issues and health behavior should be added to electronic health records. Health Aff (Millwood). 2012;31:497–504. doi: 10.1377/hlthaff.2010.1295.Google Scholar
  43. 43.
    Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient compliance with paper and electronic diaries. Control Clin Trials. 2003;24:182–99. doi: 10.1016/S0197-2456(02)00320-3.CrossRefPubMedGoogle Scholar
  44. 44.
    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;32:3061–8. doi: 10.1007/s00296-011-2098-1.CrossRefPubMedGoogle Scholar
  45. 45.
    Newman ED, Lerch V, Billet J, Berger A, Kirchner HL. Improving the quality of care of patients with rheumatic disease using patient-centric Electronic Redesign Software. Arthritis Care Res. 2015;67:546–53. doi: 10.1002/acr.22479.CrossRefGoogle Scholar
  46. 46.
    Kirwan JR, Ahlmén M, de Wit M, Heiberg T, Hehir M, Hewlett S, et al. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. J Rheumatol. 2005;32:2246–9.PubMedGoogle Scholar
  47. 47.
    Campbell N, Ali F, Finlay AY, Salek SS. Equivalence of electronic and paper-based patient-reported outcome measures. Qual Life Res. 2015;24:1949–61. doi: 10.1007/s11136-015-0937-3.CrossRefPubMedGoogle Scholar
  48. 48.
    Bent H, Ratzlaff CR, Goligher EC, Kopec JA, Gillies JH. Computer-administered bath ankylosing spondylitis and Quebec Scale outcome questionnaires for low back pain: agreement with traditional paper format. J Rheumatol. 2005;32:669–72.PubMedGoogle Scholar
  49. 49.
    Koevoets R, de Glas NA, Le Bourlout C, Huizinga TWJ, Allaart CF, Dougados M, et al. Autonomous online health assessment questionnaire registry in daily clinical practice. Rheumatology. 2013;52:883–7. doi: 10.1093/rheumatology/kes389.Google Scholar
  50. 50.
    Gwaltney CJ, Shields AL, Shiffman S. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health. 2008;11:322–33. doi: 10.1111/j.1524-4733.2007.00231.x.CrossRefPubMedGoogle Scholar
  51. 51.
    Kirwan JR, Hewlett SE, Heiberg T, Hughes RA, Carr M, Hehir M, et al. Incorporating the patient perspective into outcome assessment in rheumatoid arthritis-progress at OMERACT 7. J Rheumatol. 2005;32:2250–6.PubMedGoogle Scholar
  52. 52.
    Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA, et al. 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;12:419–29. doi: 10.1111/j.1524-4733.2008.00470.x.CrossRefPubMedGoogle Scholar
  53. 53.
    Amarasingham R, Plantinga L, Diener-West M, Gaskin DJ, Powe NR. Clinical information technologies and inpatient outcomes: a multiple hospital study. Arch Intern Med. 2009;169:108–14. doi: 10.1001/archinternmed.2008.520.CrossRefPubMedGoogle Scholar
  54. 54.
    Hartzler A, McCarty CA, Rasmussen LV, Williams MS, Brilliant M, Bowton EA, et al. Stakeholder engagement: a key component of integrating genomic information into electronic health records. Genet Med. 2013;15:792–801. doi: 10.1038/gim.2013.127.CrossRefPubMedPubMedCentralGoogle Scholar
  55. 55.
    Deutsche Gesellschaft für Rheumatologie. EDV Dokumentation online [Internet]. Accessed 20 Sep 2015.
  56. 56.
    Schacher et al. Projektförderung der AGRZ: Einsatz von IT-Dokumentationssystemen in der rheumatologischen Patientenversorgung—Anwendungserprobung und Usability-Vergleich der Softwaresysteme Ardis, Documed.rh und Rheumadok. Z Rheumatol. 2009:68(Suppl 1):34.Google Scholar
  57. 57.
    Azevedo AR, de Sousa HM, Monteiro JA, Lima AR. Future perspectives of Smartphone applications for rheumatic diseases self-management. Rheumatol Int. 2015;35:419–31. doi: 10.1007/s00296-014-3117-9.CrossRefPubMedGoogle Scholar
  58. 58.
    Dennison L, Morrison L, Conway G, Yardley L. Opportunities and challenges for smartphone applications in supporting health behavior change: qualitative study. J Med Internet Res. 2013;15:e86. doi: 10.2196/jmir.2583.CrossRefPubMedPubMedCentralGoogle Scholar
  59. 59.
    Donker T, Petrie K, Proudfoot J, Clarke J, Birch M, Christensen H. Smartphones for smarter delivery of mental health programs: a systematic review. J Med Internet Res. 2013;15:e247. doi: 10.2196/jmir.2791.CrossRefPubMedPubMedCentralGoogle Scholar
  60. 60.
    Martínez-Pérez B, de la Torre-Díez I, López-Coronado M. Mobile health applications for the most prevalent conditions by the World Health Organization: review and analysis. J Med Internet Res. 2013;15:e120. doi: 10.2196/jmir.2600.CrossRefPubMedPubMedCentralGoogle Scholar
  61. 61.
    Heiberg T, Kvien TK, Dale Ø, Mowinckel P, Aanerud GJ, Songe-Møller AB, et al. Daily health status registration (patient diary) in patients with rheumatoid arthritis: a comparison between personal digital assistant and paper-pencil format. Arthritis Rheum. 2007;57:454–60. doi: 10.1002/art.22613.CrossRefPubMedGoogle Scholar
  62. 62.
    Luckmann R, Vidal A. Design of a handheld electronic pain, treatment and activity diary. J Biomed Inform. 2010;43:S32. doi: 10.1016/j.jbi.2010.05.005.CrossRefPubMedGoogle Scholar
  63. 63.
    Torous J, Staples P, Shanahan M, Lin C, Peck P, Keshavan M, et al. Utilizing a Personal Smartphone Custom App to assess the patient health questionnaire-9 (PHQ-9) depressive symptoms in patients with major depressive disorder. JMIR Mental Health. 2015;2:e8. doi: 10.2196/mental.3889.CrossRefPubMedPubMedCentralGoogle Scholar
  64. 64.
    Hufford MR, Shields AL. Electronic diaries: applications and what works in the field. Appl Clin Trials. 2002;11(4):46–59.Google Scholar
  65. 65.
    Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient non-compliance with paper diaries. BMJ. 2002;324:1193–4.CrossRefPubMedPubMedCentralGoogle Scholar
  66. 66.
    Gvozdenović E, Koevoets R, Wolterbeek R, van der Heijde D, Huizinga TW, Allaart CF, et al. Assessment of global disease activity in RA patients monitored in the METEOR database: the patient‘s versus the rheumatologist‘s opinion. Clin Rheumatol. 2014;33:461–6. doi: 10.1007/s10067-013-2390-4.CrossRefPubMedGoogle Scholar
  67. 67.
    Koevoets R, de Glas NA, Le Bourlout C, Huizinga TW, Allaart CF, Dougados M, et al. Autonomous online health assessment questionnaire registry in daily clinical practice. Rheumatology (Oxford). 2013;52:883–7. doi: 10.1093/rheumatology/kes389.CrossRefGoogle Scholar
  68. 68.
    Richter J, Muth T, Becker A, Koch T, Schneider M. Online data aquisition of medical outcome Studies Short Form (SF36) in female Systemic Lupus Erythematodes (SLE) patients. Ann Rheum Dis. 2009;68 (Suppl 3):356.Google Scholar
  69. 69.
    Richter J, Muth T, Becker A, Koch T, Schneider M. Is online data aquisition of medical outcome studies Short Form (SF36) feasible in female patients with Rheumatois Arthritis (RA) and delivering equivalent data compared to paper-based data acquisition? Ann Rheum Dis. 2010;69(Suppl3):650.Google Scholar
  70. 70.
    Walter MJ, Mohd Din SH, Hazes JM, Lesaffre E, Barendregt PJ, Luime JJ. Is tightly controlled disease activity possible with online patient-reported outcomes? J Rheumatol. 2014;41:640–7. doi: 10.3899/jrheum.130174.CrossRefPubMedGoogle Scholar
  71. 71.
    Kleinman L, Leidy NK, Crawley J, Bonomy A, Schoenfeld P. A comparative trial of paper-and-pencil versus computer administration of the Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaire. Med Care. 2001;39:181–9.CrossRefPubMedGoogle Scholar
  72. 72.
    Velikova G, Wright EP, Smith AB, Cull A, Gould A, Forman D, et al. Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. J Clin Oncol. 1999;17:998–1007.PubMedGoogle Scholar
  73. 73.
    Kvien TK. Performance of health status measures with a pen based personal digital assistant. Ann Rheum Dis. 2005;64:1480–4. doi: 10.1136/ard.2004.030437.CrossRefPubMedPubMedCentralGoogle Scholar
  74. 74.
    Thumboo J, Wee H, Cheung Y, Machin D, Luo N, Feeny D, et al. Computerized administration of health-related quality of life instruments compared to interviewer administration may reduce sample size requirements in clinical research: a pilot randomized controlled trial among rheumatology patients. Clin Exp Rheumatol. 2007;25:577–83.PubMedGoogle Scholar
  75. 75.
    Schefte DB, Hetland ML. An open-source, self-explanatory touch screen in routine care. Validity of filling in the Bath measures on Ankylosing Spondylitis Disease Activity Index, Function Index, the Health Assessment Questionnaire and Visual Analogue Scales in comparison with paper versions. Rheumatology. 2009;49:99–104. doi: 10.1093/rheumatology/kep333.CrossRefPubMedGoogle Scholar
  76. 76.
    Newman ED, Lerch V, Jones JB, Stewart W. Touchscreen questionnaire patient data collection in rheumatology practice: development of a highly successful system using process redesign. Arthritis Care Res. 2012;64:589–96. doi: 10.1002/acr.21560.CrossRefGoogle Scholar
  77. 77.
    Salaffi F, Gasparini S, Ciapetti A, Gutierrez M, Grassi W. Usability of an innovative and interactive electronic system for collection of patient-reported data in axial spondyloarthritis: comparison with the traditional paper-administered format. Rheumatology. 2013;52:2062–70. doi: 10.1093/rheumatology/ket276.CrossRefPubMedGoogle Scholar
  78. 78.
    Haverman L, van Rossum MA, van Veenendaal M, van den Berg JM, Dolman KM, Swart J, et al. Effectiveness of a web-based application to monitor health-related quality of life. Pediatrics. 2013;131:e533. doi: 10.1542/peds.2012-0958.Google Scholar
  79. 79.
    Richter JG, Kampling C, Chehab G, Acar H, Becker A, Dieckert M, et al. Mobile medical documentation of patient-reported-outcome [abstract]. Arthritis Rheumatol. 2015;67:(Suppl 10). Accessed 30 Sep 2015.
  80. 80.
    El Miedany Y. e-Rheumatology: are we ready? Clin Rheumatol. 2015;34:831–7. doi: 10.1007/s10067-015-2897-y.CrossRefPubMedGoogle Scholar
  81. 81.
    American Telemedicine Association. What is telemedicine? [Internet]. Accessed 27 Sep 2015.
  82. 82.
    Ekeland AG, Bowes A, Flottorp S. Methodologies for assessing telemedicine: a systematic review of reviews. Int J Med Inform. 2012;81:1–11. doi: 10.1016/j.ijmedinf.2011.10.009.CrossRefPubMedGoogle Scholar
  83. 83.
    Inglis SC, Clark RA, McAlister FA, Ball J, Lewinter C, Cullington D, et al. Structured telephone support or telemonitoring programmes for patients with chronic heart failure. Cochrane Database Syst Rev. 2010:CD007228. doi: 10.1002/14651858.CD007228.pub2.
  84. 84.
    Meade BJ, Dunbar JA. A virtual clinic: telemetric assessment and monitoring for rural and remote areas. 2004. Accessed 23 Sep 2015.
  85. 85.
    Roberts LJ, Lamont EG, Lim I, Sabesan S, Barrett C. Telerheumatology: an idea whose time has come. Intern Med J. 2012;42:1072–8. doi: 10.1111/j.1445-5994.2012.02931.x.CrossRefPubMedGoogle Scholar
  86. 86.
    Davis P, Howard R, Brockway P. Telehealth consultations in rheumatology: cost-effectiveness and user satisfaction. J Telemed Telecare. 2001;7 Suppl 1:10–1.CrossRefPubMedGoogle Scholar
  87. 87.
    Piga M, Tradori I, Pani D, Barabino G, Dessì A, Raffo L, et al. Telemedicine applied to kinesiotherapy for hand dysfunction in patients with systemic sclerosis and rheumatoid arthritis: recovery of movement and telemonitoring technology. J Rheumatol. 2014;41:1324–33. doi: 10.3899/jrheum.130912.CrossRefPubMedGoogle Scholar
  88. 88.
    Salaffi F, Ciapetti A, Gasparini S, Atzeni F, Sarzi-Puttini P, Baroni M. Web/Internet-based telemonitoring of a randomized controlled trial evaluating the time-integrated effects of a 24-week multicomponent intervention on key health outcomes in patients with fibromyalgia. Clin Exp Rheumatol. 2015;33:S93–101.PubMedGoogle Scholar
  89. 89.
    LeRouge C, Garfield M, Hevner A. Patient perspectives of telemedicine quality. Patient Prefer Adherence. 2014;9:25–40. doi: 10.2147/PPA.S67506.CrossRefPubMedPubMedCentralGoogle Scholar
  90. 90.
    Ennis L, Robotham D, Denis M, Pandit N, Newton D, Rose D, et al. Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems. BMC Psychiatry. 2014;14:1477. doi: 10.1186/s12888-014-0305-9.CrossRefGoogle Scholar
  91. 91.
    Bullinger M, Kirchberger I. SF-36 Fragebogen zum Gesundheitszustand. Handanweisung. Göttingen: Hogrefe; 1998.Google Scholar
  92. 92.
    Herschman J, Kasenberg T, Levy D, Ruth N, Taberner C, Kaufman M, et al. Development of a smartphone app for adolescents with lupus: a collaborative meeting-based methodology inclusive of a wide range of stakeholders. Rev Panam Salud Publica. 2014;35:471–6.PubMedGoogle Scholar
  93. 93.
    Schick-Makaroff K, Molzahn A. Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health Qual Life Outcomes. 2015;13:2. doi: 10.1186/s12955-014-0205-1.CrossRefPubMedPubMedCentralGoogle Scholar
  94. 94.
    Richter JG, Becker A, Specker C, Monser R, Schneider M. Krankheitsbezogene Internetnutzung bei Patienten mit entzündlich-rheumatischen Systemerkrankungen. Z Rheumatol. 2004;63:216–22. doi: 10.1007/s00393-004-0571-x.CrossRefPubMedGoogle Scholar
  95. 95.
    Eysenbach G. Towards ethical guidelines for e-health: JMIR theme issue on eHealth ethics. J Med Internet Res. 2000;2:E7. doi: 10.2196/jmir.2.1.e7.CrossRefPubMedPubMedCentralGoogle Scholar
  96. 96.
    Segal C, Holve E, Sabharwal R. Collecting and using patient-reported outcomes (PRO) for comparative effectiveness research (CER) and patient-centered outcomes research (PCOR): challenges and opportunities [Internet]. 2013. Accessed 27 Sep 2015.
  97. 97.
    Snyder CF, Jensen RE, Segal JB, Wu AW. Patient-reported outcomes (PROs): putting the patient perspective in patient-centered outcomes research. Med Care. 2013;51:S73–9. doi: 10.1097/MLR.0b013e31829b1d84.CrossRefPubMedPubMedCentralGoogle Scholar
  98. 98.
    Baldwin M, Spong A, Doward L, Gnanasakthy A. Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond. Patient. 2011;4:11–7.CrossRefPubMedGoogle Scholar
  99. 99.
    Zangi HA, Ndosi M, Adams J, Andersen L, Bode C, Boström C, et al. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis. 2015;74:954–62. doi: 10.1136/annrheumdis-2014-206807.CrossRefPubMedGoogle Scholar
  100. 100.
    Santana MJ, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, et al. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015;24:1707–18. doi: 10.1007/s11136-014-0903-5.CrossRefPubMedGoogle Scholar
  101. 101.
    Newman JC, Feldman R. Copyright and Open Access at the Bedside. N Engl J Med. 2011;365(26):2447–9.CrossRefPubMedGoogle Scholar
  102. 102.
    German Federal Ministry of Justice and Consumer Protection. German Federal Data Protection Act [Internet]. 1990. Accessed 22 Sep 2015.
  103. 103.
    European Parliament. Council Directive 93/42/EEC of 14 June 1993 concerning medical devices, OJ No L 169/1 of 1993-07-12 [Internet]. 1993. Accessed 27 Sep 2015.
  104. 104.
    U.S. Department of Health and Human Services Food and Drug Administration. Mobile medical applications: Guidance for Industry and Food and Drug Administration Staff Document [Internet]. 2015 Feb 9 [Accessed 27 Sep 2015].
  105. 105.
    Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;346:f167. doi: 10.1136/bmj.f167.CrossRefPubMedGoogle Scholar
  106. 106.
    Devlin NJ, Parkin D, Browne J. Patient-reported outcome measures in the NHS: new methods for analysing and reporting EQ-5D data. Health Econ. 2010;19:886–905. doi: 10.1002/hec.1608.CrossRefPubMedGoogle Scholar
  107. 107.
    National Quality Forum. Patient reported outcomes (PROs) in performance measurement [Internet]. 2013. Accessed 27 Sep 2015.
  108. 108.
    Cox A, Illsley M, Knibb W, Lucas C, O‘Driscoll M, Potter C, et al. The acceptability of e-technology to monitor and assess patient symptoms following palliative radiotherapy for lung cancer. Palliat Med. 2011;25:675–81. doi: 10.1177/0269216311399489.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Jutta Richter
    • 1
    Email author
  • Christina Kampling
    • 2
  • Matthias Schneider
    • 1
  1. 1.Policlinic for Rheumatology and Hiller Research Centre for RheumatologyUniversity Clinic Duesseldorf, Medical Faculty, Heinrich-Heine-University DuesseldorfDuesseldorfGermany
  2. 2.Policlinic for Rheumatology and Hiller Research Centre for RheumatologyUniversity Clinic Duesseldorf, Heinrich-Heine-University DuesseldorfDuesseldorfGermany

Personalised recommendations