The rationale for patient-reported outcomes surveillance in cancer and a reproducible method for achieving it

Cancer

Volumn 122, Issue 3, 2016, Pages 344-351

  Smith, Tenbroeck G ^a   Castro, Kathleen M ^b   Troeschel, Alyssa N ^a   Arora, Neeraj K ^c   Lipscomb, Joseph ^d,e   Jones, Shelton M ^f   Treiman, Katherine A ^f   Hobbs, Connie ^f   McCabe, Ryan M ^g   Clauser, Steven B ^c  

^a BEHAVIORAL RESEARCH CENTER   (United States)

^b NATIONAL CANCER INSTITUTE   (United States)

^c Outcomes Research Institute   (United States)

^d EMORY UNIVERSITY   (United States)

^e EMORY UNIVERSITY   (United States)

^f RTI INTERNATIONAL   (United States)

^g AMERICAN COLLEGE OF SURGEONS   (United States)

Author keywords

patient reported outcomes; quality of life; surveillance; symptoms

Indexed keywords

ADULT; AGED; BREAST CANCER; CANCER CENTER; CANCER EPIDEMIOLOGY; CANCER PATIENT; COLON CANCER; CONTROLLED STUDY; COST EFFECTIVENESS ANALYSIS; CROSS-SECTIONAL STUDY; FEMALE; HEALTH CARE; HUMAN; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; PATIENT ADVOCACY; PATIENT CARE; PRIORITY JOURNAL; QUALITY OF LIFE; REPRODUCIBILITY; REVIEW; SYMPTOMATOLOGY; BREAST NEOPLASMS; COLONIC NEOPLASMS; COMPLICATION; EPIDEMIOLOGY; FATIGUE; HEALTH CARE QUALITY; HEALTH SURVEY; INTERNATIONAL COOPERATION; MENTAL STRESS; MIDDLE AGED; NATIONAL HEALTH ORGANIZATION; PAIN; PATIENT SATISFACTION; PATIENT SELECTION; PROCEDURES; PSYCHOLOGY; SELF REPORT; TREATMENT OUTCOME; UNITED STATES;

ADULT; AGED; BREAST NEOPLASMS; COLONIC NEOPLASMS; FATIGUE; FEMALE; HUMANS; INTERNATIONAL COOPERATION; MALE; MIDDLE AGED; NATIONAL CANCER INSTITUTE (U.S.); PAIN; PATIENT OUTCOME ASSESSMENT; PATIENT SATISFACTION; PATIENT SELECTION; POPULATION SURVEILLANCE; QUALITY OF HEALTH CARE; QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; SAMPLING STUDIES; SELF REPORT; STRESS, PSYCHOLOGICAL; TREATMENT OUTCOME; UNITED STATES;

EID: 84949666002     PISSN: 0008543X     EISSN: 10970142     Source Type: Journal    
DOI: 10.1002/cncr.29767     Document Type: Review

References (39)

1. Ahmed S, Berzon RA, Revicki DA, et al,; International Society for Quality of Life Research. 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.
2. American Cancer Society. American Cancer Society's Guide to Pain Control: Understanding and Managing Cancer Pain. Atlanta, GA: American Cancer Society; 2004.
3. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines): Adult Cancer Pain. Version 2.2015. Fort Washington, PA: National Comprehensive Cancer Network; 2015.
4. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines): Cancer-Related Fatigue. Version 2.2015. Fort Washington, PA: National Comprehensive Cancer Network; 2015.
5. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCCN Guidelines): Distress Management. Version 2.2015. Fort Washington, PA: National Comprehensive Cancer Network; 2015.
6. Agency for Healthcare Research and Quality. CAHPS: assessing health care quality from the patient's perspective. https://cahps.ahrq.gov/about-cahps/cahps-program/cahps-brief.html. Accessed July 17, 2015.
7. National Quality Forum. Patient Reported Outcomes (PROs) in Performance Measurement. Washington, DC: National Quality Forum; 2013.
8. 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: 1305-1314.
9. Basch E, Abernethy AP, Mullins CD, et al., Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012; 30: 4249-4255.
10. Basch E, Torda P, Adams K,. Standards for patient-reported outcome-based performance measures. JAMA. 2013; 310: 139-140.
11. National Institutes of Health. Symptom management in cancer: pain, depression and fatigue: State-of-the-Science Conference Statement. J Pain Palliat Care Pharmacother. 2003; 17: 77-97.
12. Gondek K, Sagnier PP, Gilchrist K, Woolley JM,. Current status of patient-reported outcomes in industry-sponsored oncology clinical trials and product labels. J Clin Oncol. 2007; 25: 5087-5093.
13. Rock EP, Kennedy DL, Furness MH, Pierce WF, Pazdur R, Burke LB,. Patient-reported outcomes supporting anticancer product approvals. J Clin Oncol. 2007; 25: 5094-5099.
14. National Institutes of Health. Patient Reported Outcomes Measurement Information System. http://www.nihpromis.org. Accessed June 25, 2015.
15. National Institutes of Health. Patient Reported Outcomes Measurement Information System: Georgetown University. http://nihpromis.org/about/georgetownuniversity. Accessed June 25, 2015.
16. Division of Cancer Control and Population Sciences, National Cancer Institute. Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). http://appliedresearch.cancer.gov/pro-ctcae/. Accessed March 13, 2015.
17. Coronini-Cronberg S, Appleby J, Thompson J,. Application of patient-reported outcome measures (PROMs) data to estimate cost-effectiveness of hernia surgery in England. J R Soc Med. 2013; 106: 278-287.
18. Lipscomb J, Gotay CC, Snyder CF,. Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA Cancer J Clin. 2007; 57: 278-300.
19. Wu AW, Snyder C, Clancy CM, Steinwachs DM,. Adding the patient perspective to comparative effectiveness research. Health Aff (Millwood). 2010; 29: 1863-1871.
20. Hofman M, Ryan JL, Figueroa-Moseley CD, Jean-Pierre P, Morrow GR,. Cancer-related fatigue: the scale of the problem. Oncologist. 2007; 12 (suppl 1): 4-10.
21. van den Beuken-van Everdingen M, de Rijke J, Kessels A, Schouten H, van Kleef M, Patijn J,. Prevalence of pain in patients with cancer: a systematic review of the past 40 years. Ann Oncol. 2007; 18: 1437-1449.
22. Lerro CC, Stein KD, Smith T, Virgo KS,. A systematic review of large-scale surveys of cancer survivors conducted in North America, 2000-2011. J Cancer Surviv. 2012; 6: 115-145.
23. Smith T, Stein KD, Mehta CC, et al., The rationale, design, and implementation of the American Cancer Society's studies of cancer survivors. Cancer. 2007; 109: 1-12.
24. Thong MS, Mols F, Stein KD, Smith T, Coebergh JW, van de Poll-Franse LV,. Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies? Cancer. 2013; 119 (suppl 11): 2109-2123.
25. Ambs A, Warren JL, Bellizzi KM, Topor M, Haffer SC, Clauser SB,. Overview of the SEER-Medicare Health Outcomes Survey linked dataset. Health Care Financ Rev. 2008; 29: 5-21.
26. Stewart AK, McNamara E, Gay EG, Banasiak J, Winchester DP,. The Rapid Quality Reporting System-a new quality of care tool for CoC-accredited cancer programs. J Registry Manag. 2011; 38: 61-63.
27. Jones SM, McCormack L, Johnson T, Hobbs C, McMichael J, Clauser S,. Sample design methodology for studying patients using registry data. Proc Am Stat Assoc. 2010; 2010: 6040-6051.
28. van Ryn M, Phelan SM, Arora NK, et al., Patient-reported quality of supportive care among patients with colorectal cancer in the Veterans Affairs Health Care System. J Clin Oncol. 2014; 32: 809-815.
29. Ayanian JZ, Zaslavsky AM, Arora NK, et al., Patients' experiences with care for lung cancer and colorectal cancer: findings from the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol. 2010; 28: 4154-4161.
30. Malin JL, Ko C, Ayanian JZ, et al., Understanding cancer patients' experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer. 2006; 14: 837-848.
31. Arora NK, Reeve BB, Hays RD, Clauser SB, Oakley-Girvan I,. Assessment of quality of cancer-related follow-up care from the cancer survivor's perspective. J Clin Oncol. 2011; 29: 1280-1289.
32. Cohen E, Botti M, Hanna B, Leach S, Boyd S, Robbins J,. Pain beliefs and pain management of oncology patients. Cancer Nurs. 2008; 31: E1-E8.
33. Quality improvement guidelines for the treatment of acute pain and cancer pain. American Pain Society Quality of Care Committee. JAMA. 1995; 274: 1874-1880.
34. Borneman T, Koczywas M, Sun VC, Piper BF, Uman G, Ferrell B,. Reducing patient barriers to pain and fatigue management. J Pain Symptom Manage. 2010; 39: 486-501.
35. American Association for Pubic Opinion Research. Standard Definition: Final Dispositions of Case Codes and Outcome Rates for Surveys. Oakbrook Terrace, IL: The American Association for Public Opinion Research; 2011.
36. Rea LM, Parker RA,. Designing and Conducting Survey Research: A Comprehensive Guide. San Francisco, CA: Jossey-Bass Publishers; 1992.
37. Harlan LC, Lynch CF, Keegan TH, et al,; AYA HOPE Study Collaborative Group. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011; 5: 305-314.
38. Ashley L, Jones H, Thomas J, et al., Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system. J Med Internet Res. 2013; 15: e230.
39. Yancey AK, Ortega AN, Kumanyika SK,. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006; 27: 1-28.