title: Breast cancer information and support needs for women with intellectual disabilities: a scoping study.
abstract: OBJECTIVE
  To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID).
  
  
  METHODS
  A scoping study that comprised of a consultation exercise with a wide range of key stakeholders (n = 26) from one northern city (Sheffield) within the UK.
  
  
  RESULTS
  This study identified numerous gaps in the current evidence base. It highlighted a dearth of research that focuses specifically on the information and support needs of women with IDs (and their carers) across the breast cancer patient pathway. Within the interviews, whilst 'reasonable adjustments' were being made and there was evidence of good practice, they were neither strategic nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured.
  
  
  CONCLUSIONS
  There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, suboptimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these.
authors: Centre for Health and Social Care Research, Faculty of Health and Wellbeing, 32 Collegiate Crescent, Sheffield Hallam University, Sheffield, UK.
authors: Karen
authors: K
authors: Collins
authors: Alex
authors: A
authors: McClimens
authors: Stella
authors: S
authors: Mekonnen
authors: Lynda
authors: L
authors: Wyld
mesh_terms: D001943:Breast Neoplasms / Q000150:complications / Q000175:diagnosis* / Q000628:therapy; D017028:Caregivers / Q000193:education; D004495:Education of Persons with Intellectual Disabilities / Q000379:methods; D019317:Evidence-Based Medicine / Q000379:methods; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008607:Intellectual Disability / Q000150:complications*; D010353:Patient Education as Topic / Q000379:methods; D036301:Qualitative Research; D012944:Social Support; D006113:United Kingdom
keywords: breast; cancer; information; intellectual disability; oncology