Oncologist Perspectives on Rare Cancer Care: A Nationwide Survey
2
조회
0
다운로드
1
인용
0
참고문헌
키워드
초록
Purpose In response to the challenges and difficulties imposed by rare cancers, multi-stakeholderinitiatives dedicated to improving rare cancer care was launched, and several recommendationswere made by professional societies. However, these primarily reflect the view ofthe advocates and supporters, and may not represent the views of the “average” clinicianor researcher. In this study, we sought to investigate perceived difficulties with regard torare cancer care and potential solutions endorsed by oncologists. Materials and MethodsA representative sample of 420 oncologists recruited in 13 cancer centers participated ina nationwide survey. ResultsOncologists faced various difficulties in treatment of patients with rare cancers, includingthe lack of clinical practice guidelines (65.7%) and personal experience (65.2%), lack ofapproved treatment options (39.8%), and reimbursement issues (44.5%). They weregenerally supportive of recent recommendations by multi-stakeholder initiatives as well asprofessional societies for development of clear clinical practice guidelines (66.0%), flexiblereimbursement guidelines (52.9%), and a national rare cancer registry (47.4%). However,there was only moderate endorsement for referrals to high-volume centers (35.5%) andencouragement of off-label treatments (21.0%). ConclusionInsights into the general attitudes of oncologists gained through our nationwide survey ofrepresentative samples would be helpful in development of clinical practices and publichealth policies in rare cancer treatment and research.
Abstract
Purpose In response to the challenges and difficulties imposed by rare cancers, multi-stakeholderinitiatives dedicated to improving rare cancer care was launched, and several recommendationswere made by professional societies. However, these primarily reflect the view ofthe advocates and supporters, and may not represent the views of the “average” clinicianor researcher. In this study, we sought to investigate perceived difficulties with regard torare cancer care and potential solutions endorsed by oncologists. Materials and MethodsA representative sample of 420 oncologists recruited in 13 cancer centers participated ina nationwide survey. ResultsOncologists faced various difficulties in treatment of patients with rare cancers, includingthe lack of clinical practice guidelines (65.7%) and personal experience (65.2%), lack ofapproved treatment options (39.8%), and reimbursement issues (44.5%). They weregenerally supportive of recent recommendations by multi-stakeholder initiatives as well asprofessional societies for development of clear clinical practice guidelines (66.0%), flexiblereimbursement guidelines (52.9%), and a national rare cancer registry (47.4%). However,there was only moderate endorsement for referrals to high-volume centers (35.5%) andencouragement of off-label treatments (21.0%). ConclusionInsights into the general attitudes of oncologists gained through our nationwide survey ofrepresentative samples would be helpful in development of clinical practices and publichealth policies in rare cancer treatment and research.
참고문헌 (25)
- Greenlee RT, "The occurrence of rare cancers in U.S. adults, 1995-2004", Public Health Rep, 125, pp.28~43 (2010)
- "Synergizing epidemiologic research on rare cancers" (2007)[URL]
- Gatta G, "Rare cancers are not so rare : the rare cancer burden in Europe", Eur J Cancer, 47, pp.2493~2511 (2011)
- Schaefer R, "Rare Cancers Europe: joining forces to tackle a common problem", Rare Tumors, 4, pp.e24~ (2012)
- Update on 2004background paper: BP 6.19 rare diseases, "de Vrueh R", World Health Organization, ~ (2013)
- Gatta G, "Survival from rare cancer in adults : a population-based study", Lancet Oncol, 7, pp.132~140 (2006)
- "Rare cancers in Europe: tackling a common problem" (2009)[URL]
- Shin DW, "Predictors and outcomes of feeling of insufficient consultation time in cancer care in Korea : results of a nationwide multicenter survey", Support Care Cancer, 20, pp.1965~1973 (2012)
- "Improving rare cancer care in Europe: recommendations on stakeholder actions and public policies" (2010)[URL]
- "Evaluation of the cancer plan 2008-2010: results 2011. Scientific Insititute fo Public Health, Cancer Centre" (2012)[URL]
- Burls A, "Commissioning for rare diseases : view from the frontline", BMJ, 331, pp.1019~1021 (2005)
- Simoens S, "Orphan drugs for rare diseases: is it time to revisit their special market access status?", Drugs, 72, pp.1437~1443 (2012)
- Picavet E, "Evaluating and improving orphan drug regulations in Europe : a Delphi policy study", Health Policy, 108, pp.1~9 (2012)
- "Medicare widens drugs it accepts for cancer" (2009)[URL]
- Dockser Marcus A, "To make progress in rare cancers, patients must lead the way", J Clin Oncol, 27, pp.2575~2577 (2009)
- "Communication from the commission to the European parliament, the council, the European economic and social committee and the committee of the regions. On rare diseases: Europe's challenges" (2008)[URL]
- Denis A, "A comparative study of European rare disease and orphan drug markets", Health Policy, 97, pp.173~179 (2010)
- "The voice of rare disease patients: experiences and expectations of over 3,000 patients on rare disease patient registries in Europe" (2013)[URL]
- "Lack of guidelines, clinical data complicate treatment of rare cancers" (2012)[URL]
- 정규원, "Cancer Statistics in Korea: Incidence, Mortality, Survival and Prevalence in 2010", Cancer Research and Treatment, 45(1), pp.1~14 (2013), 대한암학회
- "Council recommendation of 8 June 2009 on an action in the field of rare disease (2009/C 151/02)" (2009)[URL]
- "Blue Distinction Centers for Complex and Rare Cancers (Focusing on complex inpatient and surgical care)" (2014)[URL]
- "When you’re diagnosed with a rare cancer" (2010)[URL]
- Peppercorn J, "Selfreported practices and attitudes of US oncologists regarding off-protocol therapy", J Clin Oncol, 26, pp.5994~6000 (2008)
- American Society of Clinical Oncology, "Reimbursement for cancer treatment : coverage of off-label drug indications", J Clin Oncol, 24, pp.3206~3208 (2006)