PROMs data: can it be used to make decisions for individual patients? A narrative review

References

• 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.c29320083546
   PubMed Web of Science ®Google Scholar
• Bausewein C, Daveson B, Benalia H, Simon ST, Higginson IJ. Outcome Measurement in Palliative Care the Essentials. UK: PRISMA; 2011.
   Google Scholar
• Greenfield S, Nelson EC. Recent developments and future issues in the use of health status assessment measures in clinical settings. Med Care. 1992;30(5 Suppl):Ms23–Ms41.1583935
   PubMed Web of Science ®Google Scholar
• Nelson EC, Berwick DM. The measurement of health status in clinical practice. Med Care. 1989;27(3 Suppl.):S77–S90.2646493
   PubMed Web of Science ®Google Scholar
• Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA. 1995;273(1):59–65.7996652
   PubMed Web of Science ®Google Scholar
• National Institute for Clinical Excellence. Guide to the Methods of Technology Appraisal. London: NICE; 2004.
   Google Scholar
• Calvert M, Kyte D, Price G, Valderas JM, Hjollund NH. Maximising the impact of patient reported outcome assessment for patients and society. BMJ. 2019;364:k5267. doi:10.1136/bmj.l4230679170
   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 Deliv Res. 2017;5(2).
   Google Scholar
• Department of Health. Guidance on the Routine Collection of Patient Reported Outcome Measures (PROMs). UK; 2008 Available from: http://www.healthcare-today.co.uk/doclibrary/documents/pdf/152_guidance_on_routine_collection.pdf. Accessed July 22, 2019.
   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
• Osoba D, Translating the science of patient-reported outcomes assessment into clinical practice. J National Cancer Inst Monogr. 2007;37:5–11. doi:10.1093/jncimonographs/lgm002
   Google Scholar
• Fung CH, Hays RD. Prospects and challenges in using patient-reported outcomes in clinical practice. Qual Life Res. 2008;17(10):1297–1302. doi:10.1007/s11136-008-9379-518709564
   PubMed Web of Science ®Google Scholar
• Higginson IJ, Carr AJ. Measuring quality of life: using quality of life measures in the clinical setting. BMJ (Clin Res Ed). 2001;322(7297):1297–1300. doi:10.1136/bmj.322.7297.1297
   PubMed Web of Science ®Google Scholar
• Valderas JM, Kotzeva A, Espallargues M, et al. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Qual Life Res. 2008;17(2):179–193. doi:10.1007/s11136-007-9295-018175207
   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 Res. 2009;18(1):115–123. doi:10.1007/s11136-008-9430-619105048
   PubMed Web of Science ®Google Scholar
• Snyder CF, Aaronson NK. Use of patient-reported outcomes in clinical practice. Lancet. 2009;374(9687):369–370. doi:10.1016/S0140-6736(09)61400-819647598
   PubMed Web of Science ®Google Scholar
• Lohr KN, Zebrack BJ. Using patient-reported outcomes in clinical practice: challenges and opportunities. Qual Life Res. 2009;18(1):99–107. doi:10.1007/s11136-008-9413-719034690
   PubMed Web of Science ®Google Scholar
• Economist Intelligence Unit. Value-based healthcare: a global assessment. 2016; Available from: http://vbhcglobalassessment.eiu.com/wp-content/uploads/sites/27/2016/09/EIU_Medtronic_Findings-and-Methodology.pdf. Accessed 77, 2019
   Google Scholar
• Boyce MB, Browne JP. Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review. Qual Life Res. 2013;22(9):2265–2278. doi:10.1007/s11136-013-0390-023504544
   PubMed Web of Science ®Google Scholar
• 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(8 Suppl 3):S73–S79. doi:10.1097/MLR.0b013e31829b1d8423774513
   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
• 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):175–186.10659691
   PubMed Web of Science ®Google Scholar
• Greenhalgh J, Meadows K. 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. J Eval Clin Pract. 1999;5(4):401–416.10579704
   PubMed Web of Science ®Google Scholar
• Fitzpatrick RM, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D. Quality of life measures in health care. I: Applications and issues in assessment. BMJ (Clini Res Ed). 1992;305(6861):1074–1077. doi:10.1136/bmj.305.6861.1074
   PubMed Web of Science ®Google Scholar
• Coon CD, McLeod LD. Patient-reported outcomes: current perspectives and future directions. Clin Ther. 2013;35(4):399–401. doi:10.1016/j.clinthera.2013.01.01223541709
   PubMed Web of Science ®Google Scholar
• Detmar SB. Use of HRQOL questionnaires to facilitate patient-physician communication. Expert Rev Pharmacoecon Outcomes Res. 2003;3(3):215–217. doi:10.1586/14737167.3.3.21519807368
   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
• 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
• 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 Res. 2012;21(8):1305–1314. doi:10.1007/s11136-011-0054-x22048932
   PubMed Web of Science ®Google Scholar
• Black N. Patient reported outcome measures could help transform healthcare. BMJ (Online). 2013;346:7896.
   Google Scholar
• Wright JG. Evaluating the outcome of treatment. Shouldn’t We be asking patients if they are better? J Clin Epidemiol. 2000;53(6):549–553.10880772
   PubMed Web of Science ®Google Scholar
• Bitton A, Onega T, Tosteson ANA, Haas JS. Toward a better understanding of patient-reported outcomes in clinical practice. Am J Manag Care. 2014;20(4):281–283.24884859
   PubMed Web of Science ®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
• 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/j.1365-2753.2006.00650.x16987118
   PubMed Web of Science ®Google Scholar
• Carver CS, Scheier MF. Control theory: A useful conceptual framework for personality–social, clinical, and health psychology. Psychol Bull. 1982;92(1):111. doi:10.1037/0033-2909.92.1.1117134324
   PubMed Web of Science ®Google Scholar
• Linton SJ, Halldén K. Can we screen for problematic back pain? A screening questionnaire for predicting outcome in acute and subacute back pain. Clin J Pain. 1998;14(3):209–215.9758070
   PubMed Web of Science ®Google Scholar
• Hill JC, Whitehurst DG, Lewis M, et al. Comparison of stratified primary care management for low back pain with current best practice (STarT Back): a randomised controlled trial. Lancet. 2011;378(9802):1560–1571. doi:10.1016/S0140-6736(11)60937-921963002
   PubMed Web of Science ®Google Scholar
• Valderas JM, Alonso J, Guyatt GH. Measuring patient-reported outcomes: moving from clinical trials into clinical practice. Med J Aust. 2008;189(2):93–94.18637778
   PubMed Web of Science ®Google Scholar
• Lewis S. Realizing the PROMise of PROMs. Healthcarepapers. 2011;11(4):20–23.
   Google Scholar
• Palfreyman S. Patient-reported outcome measures and how they are used. Nurs Older People. 2011;23(1):31–36. doi:10.7748/nop2011.02.23.1.31.c8295
   PubMedGoogle Scholar
• Swan MJJopm. Health 2050: the realization of personalized medicine through crowdsourcing, the quantified self, and the participatory biocitizen. J Pers Med. 2012;2(3):93–118.25562203
   PubMedGoogle Scholar
• Axén I, Jones JJ, Rosenbaum A, et al. The nordic back pain subpopulation program: validation and improvement of a predictive model for treatment outcome in patients with low back pain receiving chiropractic treatment. J Manipulative Physiol Ther. 2005;28(6):381–385. doi:10.1016/j.jmpt.2005.06.00816096036
   PubMed Web of Science ®Google Scholar
• Malmqvist S, Leboeuf-Yde C, Ahola T, et al. The nordic back pain subpopulation program: predicting outcome among chiropractic patients in Finland. Chiropr Osteopat. 2008;16(1):13.18992154
   PubMedGoogle Scholar
• Newell D, Field J. Who will get better? Predicting clinical outcomes in a chiropractic practice. Clinical Chiropractic. 2007;10(4):179–186.
   Google Scholar
• Newnham EA, Page A. Bridging the gap between best evidence and best practice in mental health. Clin Psychol Rev. 2010;30(1):127–142.19897295
   PubMed Web of Science ®Google Scholar
• Holmes MM, Bishop FL, Newell D, Field J, Lewith G. Chiropractors’ views on the use of patient-reported outcome measures in clinical practice: a qualitative study. Chiropr Man Therap. 2018;26(1):50. doi:10.1186/s12998-018-0219-6
   Web of Science ®Google Scholar
• Hvitfeldt H, Carli C, Nelson EC, Mortenson DM, Ruppert BA, Lindblad S. Feed forward systems for patient participation and provider support: adoption results from the original US context to Sweden and beyond. Qual Manage Healthcare. 2009;18(4):247–256. doi:10.1097/QMH.0b013e3181bee32e
   PubMedGoogle Scholar
• Bottega FH, Fontana RT. Pain as the fifth vital sign: use of the assessment scale by nurses in general hospital. Text Context Enfermagem. 2010;19(2):283–290. doi:10.1590/S0104-07072010000200009
   Google Scholar
• Feldman-Stewart D, Brundage MD. A conceptual framework for patient-provider communication: a tool in the PRO research tool box. Qual Life Res. 2009;18(1):109–114. doi:10.1007/s11136-008-9417-319043804
   PubMed Web of Science ®Google Scholar
• Kearney N, McCann L, Norrie J, et al. Evaluation of a mobile phone-based, advanced symptom management system (ASyMS©) in the management of chemotherapy-related toxicity. Supportive Care Cancer. 2009;17(4):437–444. doi:10.1007/s00520-008-0515-0
   Web of Science ®Google 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
• Fitzpatrick RM, Davey C, Buxton MJ, Jones DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess (Rockv). 1998;2(14). doi:10.3310/hta2140
   Google Scholar
• Paterson C. Measuring outcomes in primary care: a patient generated measure, MYMOP, compared with the SF-36 health survey. BMJ. 1996;312(7037):1016–1020. doi:10.1136/bmj.312.7037.10168616351
   PubMed Web of Science ®Google Scholar
• Ashworth M, Robinson S, Evans C, Shepherd M, Conolly A, Rowlands G. What does an idiographic measure (PSYCHLOPS) tell us about the spectrum of psychological issues and scores on a nomothetic measure (CORE-OM)?. Prim Care Community Psychiatr. 200712(1):7–11
   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
• 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. doi:10.1200/JOP.2013.00106724301843
   PubMedGoogle Scholar
• Consultancy United Kingdom. UK smartphone penetration continues to rise to 85% of adult population. 2017; Available from: https://www.consultancy.uk/news/14113/uk-smartphone-penetration-continues-to-rise-to-85-of-adult-population. Accessed 517 2018.
   Google Scholar
• Statistica. UK: smartphone ownership by age from 2012-2017. 2017 Accessed 517, 2018.
   Google Scholar
• Kim BY, JJJm L. Smart devices for older adults managing chronic disease: a scoping review. JMIR Mhealth Uhealth. 2017;5(5):82–85.
   Web of Science ®Google Scholar
• Byrom B, Doll H, Muehlhausen W, et al. Measurement equivalence of patient-reported outcome measure response scale types collected using bring your own device compared to paper and a provisioned device: results of a randomized equivalence trial. Value Health. 2018;21(5):581–589. doi:10.1016/j.jval.2017.10.00829753356
   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 of Systematic Reviews 2015(7). doi:10.1002/14651858.MR000042.pub2
   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. 2014;10(4):e215–e222. doi:10.1200/JOP.2013.00106724301843
   PubMedGoogle 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):115–121.28740878
   PubMedGoogle Scholar
• Gwaltney C, Coons SJ, O’Donohoe P, et al. “Bring Your Own Device” (BYOD): the future of field-based patient-reported outcome data collection in clinical trials? Ther Innov Regul Sci. 2015;49(6):783–791.30222388
   PubMed Web of Science ®Google Scholar
• Hufford, Michael & Shields, Alan. (2002). Electronic diaries: Applications and what works in the field. Applied Clinical Trials. 11 46–56.
   Google Scholar
• Callaly T, Hallebone EL. Introducing the routine use of outcomes measurement to mental health services. Aust Health Rev. 2001;24(1):43–50.11357741
   PubMedGoogle 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• 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
• Catarinella FS, Bos WH. Digital health assessment in rheumatology: current and future possibilities. Clin Exp Rheumatol. 2016;34(101):2–4.
   Google Scholar