title: Adapting the coping in deliberation (CODE) framework: a multi-method approach in the context of familial ovarian cancer risk management.
abstract: OBJECTIVE
  To test whether the coping in deliberation (CODE) framework can be adapted to a specific preference-sensitive medical decision: risk-reducing bilateral salpingo-oophorectomy (RRSO) in women at increased risk of ovarian cancer.
  
  
  METHODS
  We performed a systematic literature search to identify issues important to women during deliberations about RRSO. Three focus groups with patients (most were pre-menopausal and untested for genetic mutations) and 11 interviews with health professionals were conducted to determine which issues mattered in the UK context. Data were used to adapt the generic CODE framework.
  
  
  RESULTS
  The literature search yielded 49 relevant studies, which highlighted various issues and coping options important during deliberations, including mutation status, risks of surgery, family obligations, physician recommendation, peer support and reliable information sources. Consultations with UK stakeholders confirmed most of these factors as pertinent influences on deliberations. Questions in the generic framework were adapted to reflect the issues and coping options identified.
  
  
  CONCLUSIONS
  The generic CODE framework was readily adapted to a specific preference-sensitive medical decision, showing that deliberations and coping are linked during deliberations about RRSO.
  
  
  CONCLUSIONS
  Adapted versions of the CODE framework may be used to develop tailored decision support methods and materials in order to improve patient-centred care.
authors: Department of Palliative Care, Policy and Rehabilitation, King's College London, London, UK. Electronic address: jana.witt@kcl.ac.uk.
authors: Jana
authors: J
authors: Witt
authors: Dartmouth Center for Healthcare Delivery Science, Hanover, NH, USA; Dartmouth Institute for Health Policy and Clinical Practice, Hanover, NH, USA.
authors: Glyn
authors: G
authors: Elwyn
authors: Cochrane Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors: Fiona
authors: F
authors: Wood
authors: All Wales Medical Genetics Service, Cardiff, UK.
authors: Mark T
authors: MT
authors: Rogers
authors: Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors: Usha
authors: U
authors: Menon
authors: Cochrane Institute of Primary Care and Public Health, Cardiff University, Cardiff, UK.
authors: Kate
authors: K
authors: Brain
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002755:Choice Behavior; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease; D006801:Humans; D007407:Interviews as Topic; D008960:Models, Psychological; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000523:psychology* / Q000601:surgery*; D010052:Ovariectomy / Q000523:psychology* / Q000706:statistics & numerical data*; D010358:Patient Participation / Q000523:psychology*; D057240:Patient Preference; D036301:Qualitative Research; D012307:Risk Factors; D012308:Risk Management
keywords: Coping; Deliberation; Oophorectomy; Ovarian cancer; Qualitative