Patient-reported outcomes (PROs): Putting the patient perspective in patient-centered outcomes research

Medical Care

Volumn 51, Issue 8 SUPPL.3, 2013, Pages

  Snyder, Claire F ^a   Jensen, Roxanne E ^b   Segal, Jodi B ^a   Wu, Albert W ^c  

^a JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b GEORGETOWN UNIVERSITY   (United States)

^c JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

electronic data methods; patient centered outcomes research; patient reported outcomes

Indexed keywords

ARTICLE; CANCER REGISTRY; DISEASE REGISTRY; DOCTOR PATIENT RELATION; ELECTRONIC MEDICAL RECORD; FUNCTIONAL STATUS; HEALTH CARE ORGANIZATION; HEALTH CARE SYSTEM; HEALTH STATUS; HEALTH SURVEY; HOSPITALIZATION; HUMAN; MEANINGFUL USE CRITERIA; MEDICAL INFORMATICS; MENTAL HEALTH CARE; OUTCOMES RESEARCH; PATENT; PATIENT CENTERED OUTCOMES RESEARCH; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY OF LIFE; RISK ASSESSMENT; SEXUALITY; SURVIVAL PREDICTION; THERAPY;

COMPARATIVE EFFECTIVENESS RESEARCH; DATA COLLECTION; ELECTRONIC HEALTH RECORDS; HEALTH SERVICES RESEARCH; HUMANS; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT SATISFACTION; PATIENT-CENTERED CARE; POLICY;

EID: 84879883334     PISSN: 00257079     EISSN: 15371948     Source Type: Journal    
DOI: 10.1097/MLR.0b013e31829b1d84     Document Type: Article

References (46)

1. Agency for Healthcare Research and Quality. What is Comparative Effectiveness Research. Available at: http://www.effectivehealthcare. ahrq.gov/index.cfm/what-is-comparative-effectiveness-research1/. Accessed December 10, 2012.
2. Patient Centered Outcomes Research Institute. Available at: http://www.pcori.org/. Accessed December 10, 2012.
3. U.S. Food and Drug Administration. Guidance for Industry. Patient reported outcome measures: use in medical product development to support labeling claims. Federal Register. 2009;74:65132-65133.
4. National Quality Forum. Patient-Reported Outcomes. Available at: http://www.qualityforum.org/Projects/n-r/Patient-Reported-Outcomes/ Patient-Reported-Outcomes.aspx. Accessed December 10, 2012.
5. Acquadro C, Berzon R, Dubois D, et al. Incorporating the patient's perspective into drug development and communication: an ad hoc task force report of the Patient-Reported Outcomes (PRO) Harmonization Group Meeting at the Food and Drug Administration, February 16, 2001. Value Health. 2003;6:522-531. (Pubitemid 37187713)
6. Lipscomb J, Donaldson MS, Hiatt RA. Cancer outcomes research and the arenas of application. J Natl Cancer Inst Monogr. 2004;33:1-7.
7. Wu AW, Snyder C, Clancy CM, et al. Adding the patient perspective to comparative effectiveness research. Health Aff (Millwood). 2010;29: 1863-1871.
8. Jones JB, Snyder CF, Wu AW. Issues in the design of Internet-based systems for collecting patient-reported outcomes. Qual Life Res. 2007; 16:1407-1417. (Pubitemid 47459875)
9. Rose M, Bezjak A. Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples. Qual Life Res. 2009;18:125-136.
10. Internet World Stats. United States of America. Available at: http://www.internetworldstats.com/am/us.htm. Accessed December 10, 2012.
11. Hambleton RK. Applications of item response theory to improve health outcomes assessment: developing item banks, linking instruments, and computer-adaptive testing. In: Lipscomb J, Gotay CC, Snyder C, eds. Outcomes Assessment in Cancer: Measures, Methods and Applications. Cambridge: Cambridge University Press; 2005:445-464.
12. National Health Service. Patient Reported Outcome Measures (PROMs). Available at: http://www.ic.nhs.uk/statistics-and-data-collections/hospitalcare/ patient-reported-outcome-measures-proms. Accessed December 11, 2012.
13. Devlin NJ, Appleby J. Getting the most out of PROMS: putting health outcomes at the heart of NHS decision-making. The King's Fund. 2010.
14. Edge SB. American College of Surgeons Commission on Cancer: Defining and Managing Quality. Presented at George Washington Cancer Institute's Cancer Health Policy Scholars Forum, November 9, 2011.
15. Boden-Albala B. Building a Community-Centered Translational Research Infrastructure with Electronic Data: The WICER Study. Presented to AcademyHealth.
16. Snyder CF, Aaronson NK. Use of patient-reported outcomes in clinical practice [Comment]. Lancet. 2009;374:369-370.
17. Wu AW, St Peter R, Cagney C. Health status assessment: completing the clinical database. J Gen Intern Med. 1997;12:254-255.
18. Greenhalgh J. The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res. 2009;18:115-123.
19. U.S. Department of Health and Human Services. Surveys show significant proportions of hospitals and doctors already plan to adopt electronic health records and qualify for federal incentive payments. Available at: http://www.hhs.gov/news/press/2011pres/01/20110113a. html. Accessed December 11, 2012.
20. Snyder CF, Blackford AL, Wolff AC, et al. Feasibility and value of PatientViewpoint: a web system for patient-reported outcomes assessment in clinical practice. Psychooncology. 2013;22:895-901.
21. Snyder CF, Jensen R, Courtin SO, et al. PatientViewpoint: a website for patient-reported outcomes assessment. Qual Life Res. 2009;18:793-800.
22. Web-based System Helps Doctors, Patients Communicate. Available at: http://www.youtube.com/watch?v = S-r4ykaUhfU. Accessed December 11, 2012.
23. Brundage M, Osoba D, Bezjak A, et al. Lessons learned in the assessment of health-related quality of life: selected examples from the National Cancer Institute of Canada Clinical Trials Group. J Clin Oncol. 2007;25:5078-5081. (Pubitemid 350232286)
24. Patrick DL, Ferketich SL, Frame PS, et al. National Institutes of Health State-of-the-Science Conference Statement: Symptom Management in Cancer: Pain, Depression, and Fatigue, July 15-17, 2002. J Natl Cancer Inst. 2003;95:1110-1117.
25. Nayfield SG, Ganz PA, Moinpour CM, et al. Report from a National Cancer Institute (USA) workshop on quality of life assessment in cancer clinical trials. Qual Life Res. 1992;1:203-210.
26. Moinpour CM, Feigl P, Metch B, et al. Quality of life end points in cancer clinical trials: review and recommendations. J Natl Cancer Inst. 1989;81:485-495. (Pubitemid 19102216)
27. Wu AW. Quality of life assessment comes of age in the era of highly active antiretroviral therapy. AIDS. 2000;14:1449-1451. (Pubitemid 30459519)
28. Liang MH, Cullen KE, Larson MG. Measuring function and health status in rheumatic disease clinical trials. Clin Rheum Dis. 1983;9: 531-539. (Pubitemid 14241808)
29. Wiklund I, Lindvall K, Swedberg K. Assessment of quality of life in clinical trials. Acta Med Scand. 1986;220:1-3.
30. Guyatt GH, Bombardier C, Tugwell PX. Measuring disease-specific quality of life in clinical trials. CMAJ. 1986;134:889-895. (Pubitemid 16013788)
31. Spilker B. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott Williams & Wilkins; 1995.
32. Bing EG, Hays RD, Jacobson LP, et al. Health-related quality of life among people with HIV disease: results from the Multicenter AIDS Cohort Study. Qual Life Res. 2009;9:55-63.
33. Flum DR, Devine B. SCOAP CERTN: Incorporating Patient Reported Outcomes into Prospective Cohort Study of Intermittent Claudication. Presentation to AcademyHealth EDM Forum Methods Stakeholder Symposium. October 28, 2011.
34. Center for Medical Technology Policy. Effectiveness Guidance Document: Recommendations for Incorporating Patient-Reported Outcomes into the Design of Clinical Trials in Adult Oncology. Version 10.0. Release Date: December 12, 2011.
35. National Institutes of Health. Patient Reported Outcomes Measurement Information System. Available at: http://www.nihpromis.org. Accessed December 11, 2012.
36. Cella D, Riley W, Stone A, et al. Initial item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) network: 2005-2008. J Clin Epidemiol. 2010;63:1179-1194.
37. Gershon R, Rothrock NE, Hanrahan RT, et al. The development of a clinical outcomes survey research application: assessment Center. Qual Life Res. 2010;19:677-685.
38. Gotay CC, Kawamoto CT, Bottomley A, et al. The prognostic significance of patient-reported outcomes in cancer clinical trials. J Clin Oncol. 2008;26:1355-1363.
39. Quinten C, Maringwa J, Gotay CC, et al. Patient self-report of symptoms and clinician ratings as predictors of overall cancer survival. J Natl Cancer Inst. 2011;103:1851-1858.
40. Newman JC, Feldman R. Copyright and open access at the bedside. N Engl J Med. 2011;365:2447-2449.
41. Emery MP, Perrier LL, Acquadro C. Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health Qual Life Outcomes. 2005;3:12.
42. Barry MJ, Fowler FJ Jr, O'Leary MP, et al. The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J Urol. 1992;148:1549-1557.
43. Guyatt GH, Osoba D, Wu AW, et al. Methods to explain the clinical significance of health status measures. Mayo Clin Proc. 2002;77: 371-383. (Pubitemid 34260746)
44. Snyder CF, Blackford AL, Brahmer JR, et al. Needs assessments can identify scores on HRQOL questionnaires that represent problems for patients: an illustration with the Supportive Care Needs Survey and the QLQ-C30. Qual Life Res. 2010;19:837-845.
45. Dahl JL, Saeger L, Stein W, et al. The new JCAHO pain assessment standards: implications for the medical director. J Am Med Dir Assoc. 2000;1(suppl):S24-S31.
46. Ahmed S, Berzon RA, Revicki DA, et al. The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy. Med Care. 2012;50:1060-1070.