title: Oncologist Perspectives on Rare Cancer Care: A Nationwide Survey.
abstract: OBJECTIVE
  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.
  
  
  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%).
  
  
  CONCLUSIONS
  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.
authors: Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, Seoul, Korea.|Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea.|Laboratory of Health Promotion and Health Behavior, Biomedical Research Institute, Seoul National University Hospital, Seoul, Korea.
authors: Dong Wook
authors: DW
authors: Shin
authors: Department of Health, Behavior and Society & Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.|Cancer Education Center, Samsung Comprehensive Cancer Center, SAHIST and Sungkyunkwan University School of Medicine, Seoul, Korea.
authors: Juhee
authors: J
authors: Cho
authors: Division of Cancer Policy and Management, National Cancer Control Institute, National Cancer Center, Goyang, Korea.
authors: Hyung Kook
authors: HK
authors: Yang
authors: Division of Cancer Policy and Management, National Cancer Control Institute, National Cancer Center, Goyang, Korea.|College of Medicine/Graduate School of Health Science Business Convergence, Chungbuk National University, Cheongju, Korea.
authors: So Young
authors: SY
authors: Kim
authors: Department of Hemato-Oncology, Yonsei Cancer Center, Severance Hospital, Seoul, Korea.
authors: Su Hyun
authors: SH
authors: Lee
authors: Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, Seoul, Korea.
authors: Beomseok
authors: B
authors: Suh
authors: Department of Biomedical Science, Chonnam National University Medical School and Clinical Trial Center, Chonnam National University Hospital, Gwangju, Korea.
authors: Hee-Young
authors: HY
authors: Shin
authors: Department of Radiation Oncology, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Korea.
authors: Hyun Joo
authors: HJ
authors: Lee
authors: Department of Internal Medicine, Chonbuk National University Medical School and Hospital, Jeonju, Korea.
authors: Dae Ghon
authors: DG
authors: Kim
authors: Division of Cancer Policy and Management, National Cancer Control Institute, National Cancer Center, Goyang, Korea.|College of Medicine/Graduate School of Health Science Business Convergence, Chungbuk National University, Cheongju, Korea.
authors: Jong Hyock
authors: JH
authors: Park
mesh_terms: D000328:Adult; D003695:Delivery of Health Care; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms; D000072103:Oncologists / Q000523:psychology*; D056910:Republic of Korea; D011795:Surveys and Questionnaires
keywords: Attitude; Cancer; Oncologists; Rare diseases; Recommendation