The Use of Measurement Systems to Support Patient Self-Management of Long-Term Conditions: An Overview of Opportunities and Challenges

References

• Department of Health. Long Term Conditions Compedium of Information. UK; 2012 Available from: https://www.gov.uk/government/publications/long-term-conditions-compendium-of-information-third-edition. Accessed 10 December 2019
   Google Scholar
• House of Commons Health Committee. Managing the care of people with long-term conditions. Second report of Session. Vol 15 2014.
   Google Scholar
• World Health Organization. Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013-2020. World Health Organization; 2013:9241506237.
   Google Scholar
• Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–187. doi:10.1016/S0738-3991(02)00032-012401421
   PubMed Web of Science ®Google Scholar
• Schulman‐Green D, Jaser S, Martin F, et al. Processes of self‐management in chronic illness. J Nurs Scholarsh. 2012;44(2):136–144. doi:10.1111/j.1547-5069.2012.01444.x22551013
   PubMed Web of Science ®Google Scholar
• Dwarswaard J, Bakker EJ, van Staa A, Boeije HR. Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies. Health Expect. 2016;19(2):194–208. doi:10.1111/hex.1234625619975
   PubMed Web of Science ®Google Scholar
• Jonkman NH, Schuurmans MJ, Jaarsma T, Shortridge-Baggett LM, Hoes AW, Trappenburg JC. Self-management interventions: proposal and validation of a new operational definition. J Clin Epidemiol. 2016;80:34–42. doi:10.1016/j.jclinepi.2016.08.00127531245
   PubMed Web of Science ®Google Scholar
• Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. The routine use of patient reported outcome measures in healthcare settings. BMJ. 2010;340:c186. doi:10.1136/bmj.c18620083546
   PubMed Web of Science ®Google Scholar
• Fitzpatrick RM, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess. 1998;2(14). doi:10.3310/hta2140
   Google Scholar
• Greenhalgh J, Long AF, Flynn R. The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory? Soc Sci Med. 2005;60(4):833–843. doi:10.1016/j.socscimed.2004.06.02215571900
   PubMed Web of Science ®Google Scholar
• 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):899–904.22992291
   PubMed Web of Science ®Google Scholar
• Kiltz U, Boonen A, Braun J, Richter JG. Electronic assessment of disease activity and functioning in patients with axial spondyloarthritis: challenges and unmet needs. Clin Exp Rheumatol. 2016;34(Suppl 101):S57–S61.27762203
   PubMed Web of Science ®Google Scholar
• Hjollund NHI, Larsen LP, Biering K, Johnsen SP, Riiskjær E, Schougaard LM. Use of patient-reported outcome (PRO) measures at group and patient levels: experiences from the generic integrated PRO system, WestChronic. Interact J Med Res. 2014;3(1):e5. doi:10.2196/ijmr.288524518281
   PubMedGoogle Scholar
• Maguire R, Ream E, Richardson A, et al. Development of a novel remote patient monitoring system: the advanced symptom management system for radiotherapy to improve the symptom experience of patients with lung cancer receiving radiotherapy. Cancer Nurs. 2015;38(2):E37–E47. doi:10.1097/NCC.0000000000000150
   PubMed Web of Science ®Google Scholar
• Jonassaint CR, Shah N, Jonassaint J, De Castro L. Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in sickle cell disease: the Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART). Hemoglobin. 2015;39(3):162–168. doi:10.3109/03630269.2015.102514125831427
   PubMed Web of Science ®Google Scholar
• Jackson BD, Gray K, Knowles SR, De Cruz P. EHealth technologies in inflammatory bowel disease: a systematic review. J Crohn’s Colitis. 2016;10(9):1103–1121. doi:10.1093/ecco-jcc/jjw05926928960
   PubMedGoogle Scholar
• Schougaard LMV, Larsen LP, Jessen A, et al. AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases. Qual Life Res. 2016;25(3):525–534. doi:10.1007/s11136-015-1207-026790427
   PubMed Web of Science ®Google Scholar
• Greenhalgh J, Dalkin S, Gooding K, et al. Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care. Health Serv Delivery Res. 2017;5(2)1–280.
   Google Scholar
• Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med. 2000;51(7):1087–1110. doi:10.1016/S0277-9536(00)00098-811005395
   PubMed Web of Science ®Google Scholar
• Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Re. 2009;18(1):115–123. doi:10.1007/s11136-008-9430-6
   PubMed Web of Science ®Google Scholar
• Snyder CF, Aaronson NK, Choucair AK, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Re. 2012;21(8):1305–1314. doi:10.1007/s11136-011-0054-x
   PubMed Web of Science ®Google Scholar
• Lejbkowicz I, Caspi O, Miller A. Participatory medicine and patient empowerment towards personalized healthcare in multiple sclerosis. Expert Rev Neurother. 2012;12(3):343–352. doi:10.1586/ern.11.16122364333
   PubMed Web of Science ®Google Scholar
• Bandura A. Human agency in social cognitive theory. Am Psychol. 1989;44(9):1175. doi:10.1037/0003-066X.44.9.11752782727
   PubMed Web of Science ®Google Scholar
• Bandura A. Organisational applications of social cognitive theory. Austr J Manage. 1988;13(2):275–302. doi:10.1177/031289628801300210
   Google Scholar
• Marshall S, Haywood K, Fitzpatrick R. Impact of patient-reported outcome measures on routine practice: a structured review. J Eval Clin Pract. 2006;12(5):559–568. doi:10.1111/jep.2006.12.issue-516987118
   PubMed Web of Science ®Google Scholar
• Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57(4):217–225. e216. doi:10.1016/j.outlook.2008.10.00419631064
   PubMed Web of Science ®Google Scholar
• Yi JY, Kim Y, Cho Y-M, Kim H. Self-management of chronic conditions using mHealth interventions in Korea: a systematic review. Healthc Inform Res. 2018;24(3):187–197. doi:10.4258/hir.2018.24.3.18730109152
   PubMed Web of Science ®Google Scholar
• Wallston KA. Hocus-pocus, the focus isn’t strictly on locus: rotter’s social learning theory modified for health. Cognit Ther Res. 1992;16(2):183–199. doi:10.1007/BF01173488
   Web of Science ®Google Scholar
• Wallston KA, Maides S, Wallston BS. Health-related information seeking as a function of health-related locus of control and health value. J Res Pers. 1976;10(2):215–222. doi:10.1016/0092-6566(76)90074-X
   Web of Science ®Google Scholar
• Greene J, Hibbard JH. Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med. 2012;27(5):520–526. doi:10.1007/s11606-011-1931-222127797
   PubMed Web of Science ®Google Scholar
• NHS England. The NHS Long Term Plan. UK; 2019 Available from: https://www.longtermplan.nhs.uk/online-version/. Accessed 10 December 2019
   Google Scholar
• Segan L, Nanayakkara S, Mak V, Kaye D. Enhancing self-care strategies in heart failure through patient-reported outcome measures. Intern Med J. 2018;48(8):995–998. doi:10.1111/imj.2018.48.issue-830133978
   PubMed Web of Science ®Google Scholar
• Fortner B. The challenge of electronically captured patient-reported outcomes. J Oncol Pract. 2007;3(3):120. doi:10.1200/JOP.073150320859396
   PubMedGoogle Scholar
• Chiauzzi E, Rodarte C, DasMahapatra P. Patient-centered activity monitoring in the self-management of chronic health conditions. BMC Med. 2015;13(1):77. doi:10.1186/s12916-015-0319-225889598
   PubMed Web of Science ®Google Scholar
• Choi EH, Seo JY. U-health for management of chronic diseases-physical activity and therapeutic exercise. J Korean Med Assoc. 2009;52(12):1154–1163. doi:10.5124/jkma.2009.52.12.1154
   Web of Science ®Google Scholar
• Lalloo C, Stinson JN, Brown SC, Campbell F, Isaac L, Henry JL. Pain-QuILT: assessing clinical feasibility of a web-based tool for the visual self-report of pain in an interdisciplinary pediatric chronic pain clinic. Clin J Pain. 2014;30(11):934–943. doi:10.1097/AJP.000000000000004924300217
   PubMed Web of Science ®Google Scholar
• Jensen RE, Snyder CF, Abernethy AP, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2013;10(4):e215–e222.24301843
   PubMedGoogle Scholar
• Fairbrother P, Pinnock H, Hanley J, et al. Exploring telemonitoring and self-management by patients with chronic obstructive pulmonary disease: a qualitative study embedded in a randomized controlled trial. Patient Educ Couns. 2013;93(3):403–410. doi:10.1016/j.pec.2013.04.00323647981
   PubMed Web of Science ®Google Scholar
• Coons SJ, Gwaltney CJ, Hays RD, 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(4):419–429. doi:10.1111/j.1524-4733.2008.00470.x19900250
   PubMed Web of Science ®Google Scholar
• Belisario JSM, Jamsek J, Huckvale K, O’Donoghue J, Morrison CP, Car J. Comparison of self-administered survey questionnaire responses collected using mobile apps versus other methods. Cochrane Database Syst Rev. 2015. doi:10.1002/14651858.MR000042.pub2
   Web of Science ®Google Scholar
• Jongen PJ, Sanders E, Zwanikken C, et al. Adherence to monthly online self-assessments for short-term monitoring: a 1-year study in relapsing-remitting multiple sclerosis patients after start of disease modifying treatment. Patient Prefer Adherence. 2013;7:293. doi:10.2147/PPA.S4017323589682
   PubMed Web of Science ®Google Scholar
• Walker UA, Mueller RB, Jaeger VK, et al. Disease activity dynamics in rheumatoid arthritis: patients’ self-assessment of disease activity via WebApp. Rheumatology. 2017;56(10):1707–1712. doi:10.1093/rheumatology/kex22928957553
   PubMed Web of Science ®Google Scholar
• 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(1):15–21. doi:10.1023/A:101674031290411508472
   PubMed Web of Science ®Google Scholar
• Statistica. UK: smartphone ownership by age from 2012-2017. 2017 Accessed 17/05/18, 2018.
   Google Scholar
• Kim BY, Lee J. Smart devices for older adults managing chronic disease: a scoping review. JMIR mHealth and uHealth. 2017;5(5):e69. doi:10.2196/mhealth.714128536089
   PubMed Web of Science ®Google Scholar
• Chang CH. Patient-reported outcomes measurement and management with innovative methodologies and technologies. Qual Life Res. 2007;16(SUPPL. 1):157–166. doi:10.1007/s11136-007-9196-217530448
   PubMed Web of Science ®Google Scholar
• Philpot LM, Barnes SA, Brown RM, et al. Barriers and benefits to the use of patient-reported outcome measures in routine clinical care: a qualitative study. Am J Med Qual. 2018;33(4):359–364. doi:10.1177/106286061774598629258323
   PubMed Web of Science ®Google Scholar
• Catarinella FS, Bos WH. Digital health assessment in rheumatology: current and future possibilities. Clin Exp Rheumatol. 2016;34(101):2–4.
   Google Scholar
• Falchook AD, Tracton G, Stravers L, et al. Use of mobile device technology to continuously collect patient-reported symptoms during radiation therapy for head and neck cancer: a prospective feasibility study. Adv Radiat Oncol. 2016;1(2):115–121. doi:10.1016/j.adro.2016.02.00128740878
   PubMedGoogle Scholar
• Santana M-J, Feeny D. Framework to assess the effects of using patient-reported outcome measures in chronic care management. Qual Life Res. 2014;23(5):1505–1513. doi:10.1007/s11136-013-0596-124318085
   PubMed Web of Science ®Google Scholar
• Callaly T. Introducing the routine use of outcomes measurement to mental health services. Aust Health Rev. 2001;24(1):43–50. doi:10.1071/AH01004311357741
   PubMedGoogle Scholar
• Hans PK, Gray CS, Gill A, Tiessen J. The provider perspective: investigating the effect of the Electronic Patient-Reported Outcome (ePRO) mobile application and portal on primary care provider workflow. Prim Health Care Res Dev. 2018;19(2):151–164. doi:10.1017/S146342361700057328899449
   PubMed Web of Science ®Google Scholar
• Bengtsson U, Kjellgren K, Hallberg I, Lundin M, Mäkitalo Å. Patient contributions during primary care consultations for hypertension after self-reporting via a mobile phone self-management support system. Scand J Prim Health Care. 2018;36(1):70–79. doi:10.1080/02813432.2018.142614429343156
   PubMed Web of Science ®Google Scholar
• Espallargues M, Valderas JM, Alonso J. Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. Med Care. 2000;38(2):175–186. doi:10.1097/00005650-200002000-0000710659691
   PubMed Web of Science ®Google Scholar
• Boyce MB, Browne JP, Greenhalgh J. The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research. BMJ Qual Saf. 2014;23(6):508–518. doi:10.1136/bmjqs-2013-002524
   PubMed Web of Science ®Google Scholar
• Gilbert A, Sebag-Montefiore D, Davidson S, Velikova G. Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic. Gynecol Oncol. 2015;136(3):429–439. doi:10.1016/j.ygyno.2014.11.07125448486
   PubMed Web of Science ®Google Scholar
• Koevoets R, de Glas NA, Le Bourlout C, et al. Autonomous online health assessment questionnaire registry in daily clinical practice. Rheumatology. 2013;52(5):883–887. doi:10.1093/rheumatology/kes38923300329
   PubMed Web of Science ®Google Scholar
• Arts LP, van de Poll-franse LV, Van Den Berg SW, et al. Lymphoma InterVEntion (LIVE)–patient-reported outcome feedback and a web-based self-management intervention for patients with lymphoma: study protocol for a randomised controlled trial. Trials. 2017;18(1):199. doi:10.1186/s13063-017-1943-228454583
   PubMed Web of Science ®Google Scholar
• Engelhard MM, Patek SD, Sheridan K, Lach JC, Goldman MD. Remotely engaged: lessons from remote monitoring in multiple sclerosis. Int J Med Inform. 2017;100:26–31. doi:10.1016/j.ijmedinf.2017.01.00628241935
   PubMed Web of Science ®Google Scholar
• Paget T, Jones C, Davies M, Evered C, Lewis C. Using home telehealth to empower patients to monitor and manage long term conditions. Nurs Times. 2010;106(45):17–19.
   Google Scholar
• Melissant HC, Verdonck-de Leeuw IM, Lissenberg-Witte BI, Konings IR, Cuijpers P, Van Uden-kraan CF. ‘Oncokompas’, a web-based self-management application to support patient activation and optimal supportive care: a feasibility study among breast cancer survivors. Acta Oncol. 2018;57(7):924–934. doi:10.1080/0284186X.2018.143865429451059
   PubMed Web of Science ®Google Scholar
• Cook DJ, Manning DM, Holland DE, et al. Patient engagement and reported outcomes in surgical recovery: effectiveness of an e-health platform. J Am Coll Surg. 2013;217(4):648–655. doi:10.1016/j.jamcollsurg.2013.05.00323891066
   PubMed Web of Science ®Google Scholar
• Gray CS, Wodchis WP, Upshur R, et al. Supporting goal-oriented primary health care for seniors with complex care needs using mobile technology: evaluation and implementation of the health system performance research network, Bridgepoint electronic patient reported outcome tool. JMIR Res Protoc. 2016;5(2):e126. doi:10.2196/resprot.575627341765
   PubMedGoogle Scholar
• Ekdahl AW, Hellström I, Andersson L, Friedrichsen M. Too complex and time-consuming to fit in! Physicians’ experiences of elderly patients and their participation in medical decision making: a grounded theory study. BMJ Open. 2012;2(3):e001063. doi:10.1136/bmjopen-2012-001063
   PubMed Web of Science ®Google Scholar
• Holmes MM, Lewith G, Newell D, Field J, Bishop FL. The impact of patient-reported outcome measures in clinical practice for pain: a systematic review. Qual Life Res. 2017;26(2):245–257. doi:10.1007/s11136-016-1449-527815820
   PubMed Web of Science ®Google Scholar
• Johnson C. Outcome measures for research and clinical practice. J Manipulative Physiol Ther. 2008;31(5):329–330. doi:10.1016/j.jmpt.2008.05.00118558273
   PubMed Web of Science ®Google Scholar
• Duncan EA, Murray J. The barriers and facilitators to routine outcome measurement by allied health professionals in practice: a systematic review. BMC Health Serv Res. 2012;12(1):96. doi:10.1186/1472-6963-12-9622506982
   PubMed Web of Science ®Google Scholar
• Gensheimer SG, Wu AW, Snyder CF. Oh, the places we’ll go: patient-reported outcomes and electronic health records. Patient-Patient-Centered Outcomes Res. 2018;11(6):591–598. doi:10.1007/s40271-018-0321-9
   Web of Science ®Google Scholar
• Appleby J, Devlin NJ. Measuring NHS Success: Can Patients’ Views on Health Outcomes Help to Manage Performance? London: King’s Fund; 2005.
   Google Scholar
• Santana MJ, Haverman L, Absolom K, et al. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015;24(7):1707–1718. doi:10.1007/s11136-014-0903-525589231
   PubMed Web of Science ®Google Scholar
• Antunes B, Harding R, Higginson IJ. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014;28(2):158–175. doi:10.1177/026921631349161923801463
   PubMed Web of Science ®Google Scholar
• Snyder CF, Jensen R, Courtin SO, Wu AW, Network WfOQAR. PatientViewpoint: a website for patient-reported outcomes assessment. Qual Life Res. 2009;18(7):793–800. doi:10.1007/s11136-009-9497-819544089
   PubMed Web of Science ®Google Scholar