Breast cancer information and support needs for women with intellectual disabilities : a scoping study

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.