Reducing inequities in cancer care: The role of cancer registries

Cancer

Volumn 115, Issue 16, 2009, Pages 3597-3605

  Sanson Fisher, Rob ^a   Carey, Mariko ^b   Mackenzie, Lisa ^c   Hill, David ^b   Campbell, Sharon ^d   Turner, Donna ^e,f  

^a UNIVERSITY OF NEWCASTLE   (Australia)

^b CANCER EPIDEMIOLOGY CENTRE   (Australia)

^c UNIVERSITY OF NEWCASTLE   (Australia)

^d UNIVERSITY OF WATERLOO   (Canada)

^e CancerCare Manitoba   (Canada)

^f UNIVERSITY OF MANITOBA   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER EPIDEMIOLOGY; CANCER REGISTRY; CANCER SCREENING; CLINICAL PRACTICE; CONSUMER ATTITUDE; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HEALTH CARE DISPARITY; HEALTH CARE NEED; HEALTH CARE QUALITY; HIGH RISK POPULATION; HUMAN; NOTE; PRIORITY JOURNAL; PSYCHOSOCIAL CARE; RELATIVE; WELLBEING;

HEALTHCARE DISPARITIES; HUMANS; NEOPLASMS; POPULATION SURVEILLANCE; REGISTRIES; TREATMENT OUTCOME;

EID: 68549110513     PISSN: 0008543X     EISSN: 10970142     Source Type: Journal    
DOI: 10.1002/cncr.24415     Document Type: Note

References (64)

1. Mandelblatt JS, Yabroff KR, Kerner JF. Equitable access to cancer services: a review of barriers to quality care. Cancer. 1999;86:2378-2390.
2. Eakin EG, Strycker LA. Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psychooncology. 2001;10:103-113.
3. Shavers VL, Brown ML. Racial and ethnic disparities in the receipt of cancer treatment. J Natl Cancer Inst. 2002;94:334-356.
4. Hohenadel J, Kaegi E, Laidlaw J, et al. Leveling the playing field: the personal coach program as an innovative approach to assess and address the supportive care needs of underserved cancer patients. J Support Oncol. 2007;5:185-193.
5. Schrag D, Cramer LD, Bach PB, Begg CB. Age and adjuvant chemotherapy use after surgery for stage III colon cancer. J Natl Cancer Inst. 2001;93:850-857.
6. Goodwin JS, Samet JM, Hunt WC. Determinants of survival in older cancer patients. J Natl Cancer Inst. 1996;88:1031-1038.
7. Marrett LD, Chaudhry M. Cancer incidence and mortality in Ontario First Nations, 1968-1991 (Canada). Cancer Causes Control. 2003;14:259-268.
8. Condon JR, Armstrong BK, Barnes A, Cunningham J. Cancer in indigenous Australians: a review. Cancer Causes Control. 2003;14:109-121.
9. Jong KE, Smith DP, Yu XQ, O'Connell DL, Goldstein D, Armstrong BK. Remoteness of residence and survival from cancer in New South Wales. Med J Aust. 2004;180:618-622.
10. Liff JM, Chow WH, Greenberg RS. Rural-urban differences in stage at diagnosis. Possible relationship to cancer screening. Cancer. 1991;67:1454-1459.
11. Jack RH, Gulliford MC, Ferguson J, Moller H. Geographical inequalities in lung cancer management and survival in South East England: evidence of variation in access to oncology services?Br J Cancer. 2003;88:1025-1031.
12. Johnston GM, Boyd CJ, Joseph P, MacIntyre M. Variation in delivery of palliative radiotherapy to persons dying of cancer in Nova Scotia, 1994 to 1998. J Clin Oncol. 2001;19:3323-3332.
13. Junor EJ, Hole DJ, Gillis CR. Management of ovarian cancer: referral to a multidisciplinary team matters. Br J Cancer. 1994;70:363-370.
14. Du Bois A, Rochon J, Lamparter C, Pfisterer J. Pattern of care and impact of participation in clinical studies on the outcome in ovarian cancer. Int J Gynecol Cancer. 2005;15:183-191.
15. Chaudhry R, Goel V, Sawka C. Breast cancer survival by teaching status of the initial treating hospital. CMAJ. 2001;164:183-188.
16. Carlson LE, Bultz BD. Cancer distress screening. Needs, models, and methods. J Psychosom Res. 2003;55:403-409.
17. Maguire P, Faulkner A, Booth K, Elliott C, Hillier V. Helping cancer patients disclose their concerns. Eur J Cancer. 1996;32A:78-81.
18. National Cancer Registrars Association (NCRA). The cancer registry and the registrar. Available at: www.ncra-usa.org/files/public/CRWhat.pdf Accessed on May 18, 2009.
19. Wagner G. History of cancer registration. In:Jensen OM, Parkin DM, MacLennan R, Muir CS, Skeet RG, eds. Cancer Registration: Principles and Methods. Vol 95. Lyon, France: International Agency for Research on Cancer; 1991: 3-6.
20. Hofferkamp J. Standards for Completeness, Quality Analysis, Management, Security and Confidentiality of Data. North American Association of Central Cancer Registries. Available at: http://www.naaccr.org/filesystem/pdf/ Volume%20III%20final%202008%20v2.pdf Accessed October 17, 2008.
21. Parkin DM. The role of cancer registries in cancer control. Int J Clin Oncol. 2008;13:102-111.
22. Parkin DM, Whelan SL, Ferlay J, Teppo L, Thomas DB, eds. Cancer Incidence in Five Continents. Lyon, France: IARC; 2002.
23. Armstrong BK. The role of the cancer registry in cancer control. Cancer Causes Control. 1992;3:569-579.
24. Sankila R, Coebergh JW. Cancer registries contribute to quality improvements in clinical care for all European cancer patients. Eur J Cancer. 2004;40:635-637.
25. Malin JL, Schneider EC, Epstein AM, Adams J, Emanuel EJ, Kahn KL. Results of the National Initiative for Cancer Care Quality: how can we improve the quality of cancer care in the United States?J Clin Oncol. 2006;24:626-634.
26. Latosinsky S, Fradette K, Lix L, Hildebrand K, Turner D. Canadian breast cancer guidelines: have they made a difference? CMAJ. 2007;176:771-776.
27. Pearson ML, Ganz PA, McGuigan K, Malin JR, Adams J, Kahn KL. The case identification challenge in measuring quality of cancer care. J Clin Oncol. 2002;20:4353-4360.
28. Donabedian A. Institutional and professional responsibilities in quality assurance. Qual Assur Health Care. 1989;1:3-11.
29. Carey M, White VM, Wakefield M, Farrugia H, Giles G, Hill D. The PROSPECT Program. Patient responses: an ongoing survey of people experiencing cancer treatment. A pilot study. Paper presented at: 9th Annual Behavioural Research in Cancer Control Conference, Melbourne, Victoria, Australia, April 9-11, 2008. 30. Means B, Nigam A, Zarrow M, Loftus EF, Donaldson MS. Autobiographical Memory for Health Related Events. Hyattsville, MD: National Center for Health Statistics; 1989.
30. Turner D, Latosinskty S, Hildebrand K. Research, policy, action! The Experience of the Manitoba Breast Cancer Outcomes Initiative [abstract]. Presented at: International Conference on the Scientific Basis of Health Services, Montreal, Quebec, Canada, September 18-20, 2005.
31. Jamtvedt G, Young JM, Kristoffersen DT, Thomson O'Brien MA, Oxman AD. Audit and feedback: effects on professional practice and healthcare outcomes. Cochrane Database Syst Rev. 2003;(3):CD000259.
32. [Update in Cochrane Database Syst Rev. 2006;
33. (2):CD000259; update of Cochrane Database Syst Rev. 2000;(2):CD000259.].
34. Hysong SJ, Best RG, Pugh JA. Audit and feedback and clinical practice guideline adherence: making feedback actionable. Implement Sci. 2006;1:9.
35. Carey M, Buchan H, Sanson-Fisher R. The cycle of change: implementing best-evidence practice. Int J Qual Health Care. 2009;21:37-43.
36. Eliasson B, Cederholm J, Nilsson P, Gudbjornsdottir S; Steering Committee of the Swedish National Diabetes Register. The gap between guidelines and reality: type 2 diabetes in a National Diabetes Register 1996-2003. Diabet Med. 2005;22:1420-1426.
37. Grol R, Dalhuijsen J, Thomas S, Veld C, Rutten G, Mokkink H. Attributes of clinical guidelines that influence use of guidelines in general practice: observational study. BMJ. 1998;317:858-861.
38. Davis DA, Taylor-Vaisey A. Translating guidelines into practice: a systematic review of theoretic concepts, practical experience and research evidence in the adoption of clinical practice guidelines. CMAJ. 1997;157:408-416.
39. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A. Evaluation of an instrument to assess the needs of patients with cancer. Cancer. 2000;88:217-225.
40. Snyder CF, Dy SM, Hendricks DE, et al. Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Support Care Cancer. 2007;15:1075-1085.
41. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Survivor: Lost in Transition. Washington, DC: National Cancer Policy Board; 2006.
42. Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Educ Couns. 2007;65:21-33.
43. Sepucha KR, Belkora JK, Tripathy D, Esserman LJ. Building bridges between physicians and patients: results of a pilot study examining new tools for collaborative decision making in breast cancer. J Clin Oncol. 2000;18:1230-1238.
44. Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH. How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. J Clin Oncol. 2000;18:3295-3301.
45. Mandelblatt JS, Lawrence WF, Cullen J, et al. Patterns of care in early-stage breast cancer survivors in the first year after cessation of active treatment. J Clin Oncol. 2006;24:77-84.
46. Yusoff IF, Hoffman NE, Ee HC. Colonoscopic surveillance after surgery for colorectal cancer. ANZ J Surg. 2003;73:3-7.
47. Keating NL, Landrum MB, Guadagnoli E, Winer EP, Ayanian JZ. Factors related to underuse of surveillance mammography among breast cancer survivors. J Clin Oncol. 2006;24:85-94.
48. Bampton PA, Sandford JJ, Young GP. Applying evidence-based guidelines improves use of colonoscopy resources in patients with a moderate risk of colorectal neoplasia. Med J Aust. 2002;176:155-157.
49. Australian Cancer Network Colorectal Cancer Guidelines Revision Committee. Guidelines for the Prevention, Early Detection and Management of Colorectal Cancer. Sydney, Australia: The Cancer Council Australia and Australian Cancer Network; 2005.
50. Seow CH, Ee HC, Willson AB, Yusoff IF. Repeat colonoscopy has a low yield even in symptomatic patients. Gastrointest Endosc. 2006;64:941-947.
51. Fuchs CS, Giovannucci EL, Colditz GA, Hunter DJ, Speizer FE, Willett WC. A prospective study of family history and the risk of colorectal cancer. N Engl J Med. 1994;331:1669-1674.
52. McCredie MR, Dite GS, Giles GG, Hopper JL. Breast cancer in Australian women under the age of 40. Cancer Causes Control. 1998;9:189-198.
53. Sutherland HJ, Lacroix J, Knight J, Andrulis IL, Boyd NF. The Cooperative Familial Registry for Breast Cancer Studies: design and first year recruitment rates in Ontario. J Clin Epidemiol. 2001;54:93-98.
54. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Cancer. 2000;88:226-237.
55. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10:19-28.
56. Thielking PD. Cancer pain and anxiety. Curr Pain Headache Rep. 2003;7:249-261.
57. Ayres A, Hoon PW, Franzoni JB, Matheny KB, Cotanch PH, Takayanagi S. Influence of mood and adjustment to cancer on compliance with chemotherapy among breast cancer patients. J Psychosom Res. 1994;38:393-402.
58. Ley P. Memory for medical information. Br J Soc Clin Psychol. 1979;18:245-255.
59. Center to Reduce Cancer Health Disparities. Researching and reducing cancer-related health disparities. Available at: http://crchd.cancer.gov/index. html. Accessed 22 July 2008.
60. Macvean ML, White VM, Pratt S, Grogan S, Sanson-Fisher R. Reducing the unmet needs of patients with colorectal cancer: a feasibility study of The Pathfinder Volunteer Program. Support Care Cancer. 2007;15:293-299.
61. Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health. 2006;96:1920-1926.
62. Parkin DM. The evolution of the population-based cancer registry. Nat Rev Cancer. 2006;6:603-612.
63. Barrett G, Cassell JA, Peacock JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ. 2006;332:1068-1072.
64. Beskow LM, Sandler RS, Millikan RC, Weinberger M. Patient perspectives on research recruitment through cancer registries. Cancer Causes Control. 2005;16:1171-1175.