A standard set of value-based patient-centered outcomes for breast cancer: The International Consortium for Health Outcomes Measurement (ICHOM) initiative

JAMA Oncology

Volumn 3, Issue 5, 2017, Pages 677-685

  Ong, Wee Loon ^a,b   Schouwenburg, Maartje G ^c,d   Van Bommel, Annelotte C M ^c,d   Stowell, Caleb ^c   Allison, Kim H ^e   Benn, Karen E ^f   Browne, John P ^g   Cooter, Rodney D ^a   Delaney, Geoff P ^h,i   Duhoux, Francois P ^j   Ganz, Patricia A ^k   Hancock, Patricia ^l   Jagsi, Reshma ^l   Knaul, Felicia M ^m,n   Knip, Anne M ^o   Koppert, Linetta B ^p   Kuerer, Henry M ^q   McLaughin, Sarah ^r   Mureau, Marc A M ^p   Partridge, Ann H ^s   Reid, Dereesa Purtell ^t   Sheeran, Lisa ^b   Smith, Thomas J ^u   Stoutjesdijk, Mark J ^v,w   Vrancken Peeters, Marie Jeanne T F D ^x   Wengström, Yvonne ^y,z   Yip, Cheng Har ^aa   Saunders, Christobel ^ab   more..

^a MONASH UNIVERSITY   (Australia)

^b PETER MACCALLUM CANCER CENTRE   (Australia)

^c International Consortium for Health Outcomes Measurement   (United States)

^d Dutch Institute for Clinical Auditing   (Netherlands)

^e STANFORD UNIVERSITY   (United States)

^f EUROPA DONNA   (Italy)

^g UNIVERSITY COLLEGE CORK   (Ireland)

^h SOUTH WESTERN SYDNEY LOCAL HEALTH DISTRICT   (Australia)

ⁱ UNIVERSITY OF NEW SOUTH WALES   (Australia)

^j CLINIQUES UNIVERSITAIRES SAINT LUC   (Belgium)

^k UNIVERSITY OF CALIFORNIA   (United States)

^l UNIVERSITY OF MICHIGAN   (United States)

^m UNIVERSITY OF MIAMI   (United States)

ⁿ Tómatelo a Pecho Mexican Health Foundation FUNSALUD   (Mexico)

^o Dutch Association of Comprehensive Cancer Centres   (Netherlands)

^p ERASMUS MC CANCER INSTITUTE   (Netherlands)

^q UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER   (United States)

^r MAYO CLINIC   (United States)

^s DANA FARBER CANCER INSTITUTE   (United States)

^t Hoag Orthopedic Institute   (United States)

^u DEPARTMENT OF PATHOLOGY   (United States)

^v IKAZIA HOSPITAL   (Netherlands)

^w Breast Center ZuidHollandZuid   (Netherlands)

^x ANTONI VAN LEEUWENHOEK HOSPITAL   (Netherlands)

^y KAROLINSKA INSTITUTE   (Sweden)

^z KAROLINSKA UNIVERSITY HOSPITAL   (Sweden)

^aa SUBANG JAYA MEDICAL CENTRE   (Malaysia)

^ab UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

more..

Author keywords

[No Author keywords available]

Indexed keywords

BREAST NEOPLASMS; CONSENSUS DEVELOPMENT; DELPHI STUDY; FEMALE; HEALTH CARE QUALITY; HUMAN; INFORMATION PROCESSING; INTERNATIONAL COOPERATION; PATIENT-REPORTED OUTCOME; QUALITY OF LIFE;

BREAST NEOPLASMS; DELPHI TECHNIQUE; FEMALE; FOCUS GROUPS; HUMANS; INTERNATIONAL COOPERATION; PATIENT REPORTED OUTCOME MEASURES; QUALITY OF HEALTH CARE; QUALITY OF LIFE;

EID: 85020123591     PISSN: 23742437     EISSN: 23742445     Source Type: Journal    
DOI: 10.1001/jamaoncol.2016.4851     Document Type: Article

References (51)

1. IARC G. Breast Cancer Estimated Incidence, Mortality and Prevalence Worldwide in 2012. http://globocan.iarc.fr/old/FactSheets/cancers/breast-new.asp. Accessed March 20, 2016.
2. Senkus E, Kyriakides S, Penault-Llorca F, et al; ESMO Guidelines Working Group. Primary breast cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2013;24(suppl 6):vi7-vi23.
3. Cardoso F, Costa A, Norton L, et al; European School of Oncology; European Society of Medical Oncology. ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2). Breast. 2014;23(5):489-502.
4. Greenberg CC, Lipsitz SR, Hughes ME, et al. Institutional variation in the surgical treatment of breast cancer: a study of the NCCN. Ann Surg. 2011;254(2):339-345.
5. Sariego J. Regional variation in breast cancer treatment throughout the United States. Am J Surg. 2008;196(4):572-574.
6. van Nes JG, Seynaeve C, Jones S, et al; Tamoxifen and Exemestane Adjuvant Multinational (TEAM) trialists. Variations in locoregional therapy in postmenopausal patients with early breast cancer treated in different countries. Br J Surg. 2010;97(5):671-679.
7. Dundas KL, Pogson EM, Batumalai V, et al. Australian survey on current practices for breast radiotherapy. J Med Imaging Radiat Oncol. 2015;59(6):736-742.
8. Fong A, Shafiq J, Saunders C, et al. A comparison of systemic breast cancer therapy utilization in Canada (British Columbia), Scotland (Dundee), and Australia (Western Australia) with models of "optimal" therapy. Breast. 2012;21(4):562-569.
9. Fong A, Shafiq J, Saunders C, et al. A comparison of surgical and radiotherapy breast cancer therapy utilization in Canada (British Columbia), Scotland (Dundee), and Australia (Western Australia) with models of "optimal" therapy. Breast. 2012;21(4):570-577.
10. Early Breast Cancer Triallists' Collaborative Group. Effects of radiotherapy and surgery in early breast cancer: an overview of the randomized trials. Early Breast Cancer Trialists' Collaborative Group. N Engl J Med. 1995;333(22):1444-1455.
11. Porter ME. What is value in health care? N Engl J Med. 2010;363(26):2477-2481.
12. Clement RC, Welander A, Stowell C, et al. A proposed set of metrics for standardized outcome reporting in the management of low back pain. Acta Orthop. 2015;86(5):523-533.
13. McNamara RL, Spatz ES, Kelley TA, et al. Standardized outcome measurement for patients with coronary artery disease: consensus from the International Consortium for Health Outcomes Measurement (ICHOM). J Am Heart Assoc. 2015;4(5):e001767.
14. Mahmud I, Kelley T, Stowell C, et al. A proposed minimum standard set of outcome measures for cataract surgery. JAMA Ophthalmol. 2015;133(11):1247-1252.
15. Martin NE, Massey L, Stowell C, et al. Defining a standard set of patient-centered outcomes for men with localized prostate cancer. Eur Urol. 2015;67(3):460-467.
16. Morgans AK, van Bommel AC, Stowell C, et al; Advanced Prostate Cancer Working Group of the International Consortium for Health Outcomes Measurement. Development of a standardized set of patient-centered outcomes for advanced prostate cancer: an international effort for a unified approach. Eur Urol. 2015;68(5):891-898.
17. Mak KS, van Bommel AC, Stowell C, et al; Lung Cancer Working Group of ICHOM. Defining a standard set of patient-centred outcomes for lung cancer. Eur Respir J. 2016;48(3):852-860.
18. Reeve BB, Wyrwich KW, Wu AW, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22(8):1889-1905.
19. US Department of Health and Human Services. Common terminology criteria for adverse events (CTCAE) version 4.0. https://evs.nci.nih.gov/. Accessed February 18, 2016.
20. Dindo D, Demartines N, Clavien PA. Classification of surgical complications: a new proposal with evaluation in a cohort of 6336 patients and results of a survey. Ann Surg. 2004;240(2):205-213.
21. Morrow M, Van Zee KJ, Solin LJ, et al. Society of Surgical Oncology-American Society for Radiation Oncology-American Society of Clinical Oncology Consensus Guideline on margins for breast-conserving surgery with whole-breast irradiation in ductal carcinoma in situ. J Clin Oncol. doi:10.1200/JCO.2016.68.3573
22. Di Maio M, Gallo C, Leighl NB, et al. Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials. J Clin Oncol. 2015;33(8):910-915.
23. Trotti A, Colevas AD, Setser A, Basch E. Patient-reported outcomes and the evolution of adverse event reporting in oncology. J Clin Oncol. 2007;25(32):5121-5127.
24. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365-376.
25. Sprangers MA, Groenvold M, Arraras JI, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996;14(10):2756-2768.
26. Pusic AL, Klassen AF, Scott AM, Klok JA, Cordeiro PG, Cano SJ. Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q. Plast Reconstr Surg. 2009;124(2):345-353.
27. Kavadas V, Blazeby JM, Conroy T, et al; EORTC Quality of Life Group. Development of an EORTC disease-specific quality of life questionnaire for use in patients with liver metastases from colorectal cancer. Eur J Cancer. 2003;39(9):1259-1263.
28. Fallowfield LJ, Leaity SK, Howell A, Benson S, Cella D. Assessment of quality of life in women undergoing hormonal therapy for breast cancer: validation of an endocrine symptom subscale for the FACT-B. Breast Cancer Res Treat. 1999;55(2):189-199.
29. United Nations Educational S; Cultural Organization (UNESCO). International Standard Classification of Education. ISCED; Montreal, Canada: 2011.
30. Shavers VL. Measurement of socioeconomic status in health disparities research. J Natl Med Assoc. 2007;99(9):1013-1023.
31. Aizer AA, Chen MH, McCarthy EP, et al. Marital status and survival in patients with cancer. J Clin Oncol. 2013;31(31):3869-3876.
32. Freedman RA, Kouri EM, West DW, Keating NL. Racial/ethnic differences in patients' selection of surgeons and hospitals for breast cancer surgery. JAMA Oncol. 2015;1(2):222-230.
33. Warner ET, Tamimi RM, Hughes ME, et al. Racial and ethnic differences in breast cancer survival: mediating effect of tumor characteristics and sociodemographic and treatment factors. J Clin Oncol. 2015;33(20):2254-2261.
34. Vaz-Luis I, Lin NU, Keating NL, et al. Racial differences in outcomes for patients with metastatic breast cancer by disease subtype. Breast Cancer Res Treat. 2015;151(3):697-707.
35. Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum. 2003;49(2):156-163.
36. Olomu AB, Corser WD, Stommel M, Xie Y, Holmes-Rovner M. Do self-report and medical record comorbidity data predict longitudinal functional capacity and quality of life health outcomes similarly? BMC Health Serv Res. 2012;12:398.
37. Partridge AH, LaFountain A, Mayer E, Taylor BS, Winer E, Asnis-Alibozek A. Adherence to initial adjuvant anastrozole therapy among women with early-stage breast cancer. J Clin Oncol. 2008;26(4):556-562.
38. Berenson RA, Kaye DR. Grading a physician's value - the misapplication of performance measurement. N Engl J Med. 2013;369(22):2079-2081.
39. Petersen MA, Groenvold M, Aaronson NK, et al; EORTC Quality of Life Group. Development of computerised adaptive testing (CAT) for the EORTC QLQ-C30 dimensions - general approach and initial results for physical functioning. Eur J Cancer. 2010;46(8):1352-1358.
40. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(6):557-565.
41. Luckett T, King MT, Butow PN, et al. Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: issues, evidence and recommendations. Ann Oncol. 2011;22(10):2179-2190.
42. Itani KM. Fifteen years of the National Surgical Quality Improvement Program in review. Am J Surg. 2009;198(5)(suppl):S9-S18.
43. Boult M, Cuncins-Hearn A, Tyson S, Kollias J, Babidge W, Maddern G. National Breast Cancer Audit: establishing a web-based data system. ANZ J Surg. 2005;75(10):844-847.
44. Breast Cancer Audit NABON. Annual Reports 2011. https://www.dica.nl/. Accessed March 10, 2016.
45. Del Turco MR, Ponti A, Bick U, et al. Quality indicators in breast cancer care. Eur J Cancer. 2010;46(13):2344-2356.
46. Brucker SY, Schumacher C, Sohn C, Rezai M, Bamberg M, Wallwiener D; Steering Committee. Benchmarking the quality of breast cancer care in a nationwide voluntary system: the first five-year results (2003-2007) from Germany as a proof of concept. BMC Cancer. 2008;8:358.
47. Jeevan R, Cromwell DA, Browne JP, et al. Findings of a national comparative audit of mastectomy and breast reconstruction surgery in England. J Plast Reconstr Aesthet Surg. 2014;67(10):1333-1344.
48. Movember Foundation. Prostate Cancer Outcomes Info Sheet. https://cdn.movember.com/uploads/files/Funded%20Programs/Movember-Foundation-Prostate-Cancer-Outcomes-Info-Sheet.pdf. Accessed April 7, 2016.
49. Fayanju OM, Mayo TL, Spinks TE, et al. Value-based breast cancer care: a multidisciplinary approach for defining patient-centered outcomes. Ann Surg Oncol. 2016;23(8):2385-2390.
50. Azad TD, Kalani M, Wolf T, et al. Building an electronic health record integrated quality of life outcomes registry for spine surgery. J Neurosurg Spine. 2016;24(1):176-185.
51. Carberry K, Landman Z, Xie M, Feeley T, Henderson J, Fraser C Jr. Incorporating longitudinal pediatric patient-centered outcome measurement into the clinical workflow using a commercial electronic health record: a step toward increasing value for the patient. J Am Med Inform Assoc. 2016;23(1):88-93.