Oncologist Perspectives on Rare Cancer Care: A Nationwide Survey.
- Author:
Dong Wook SHIN
1
;
Juhee CHO
;
Hyung Kook YANG
;
So Young KIM
;
Su Hyun LEE
;
Beomseok SUH
;
Hee Young SHIN
;
Hyun Joo LEE
;
Dae Ghon KIM
;
Jong Hyock PARK
Author Information
- Publication Type:Original Article
- Keywords: Rare diseases; Cancer; Oncologists; Attitude; Recommendation
- MeSH: Humans; Public Health; Rare Diseases; Referral and Consultation
- From:Cancer Research and Treatment 2015;47(4):591-599
- CountryRepublic of Korea
- Language:English
- Abstract: PURPOSE: In response to the challenges and difficulties imposed by rare cancers, multi-stakeholder initiatives dedicated to improving rare cancer care was launched, and several recommendations were made by professional societies. However, these primarily reflect the view of the advocates and supporters, and may not represent the views of the "average" clinician or researcher. In this study, we sought to investigate perceived difficulties with regard to rare cancer care and potential solutions endorsed by oncologists. MATERIALS AND METHODS: A representative sample of 420 oncologists recruited in 13 cancer centers participated in a nationwide survey. RESULTS: Oncologists faced various difficulties in treatment of patients with rare cancers, including the lack of clinical practice guidelines (65.7%) and personal experience (65.2%), lack of approved treatment options (39.8%), and reimbursement issues (44.5%). They were generally supportive of recent recommendations by multi-stakeholder initiatives as well as professional societies for development of clear clinical practice guidelines (66.0%), flexible reimbursement 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%) and encouragement of off-label treatments (21.0%). CONCLUSION: Insights into the general attitudes of oncologists gained through our nationwide survey of representative samples would be helpful in development of clinical practices and public health policies in rare cancer treatment and research.
