Cancer risk-factor and symptom awareness among adults with intellectual disabilities, paid and unpaid carers, and healthcare practitioners: a scoping review

Abstract

Background: The physical health of people with intellectual disabilities (ID) has been identified as an area of ongoing concern and priority. Research has increasingly focused on cancer, with studies indicating that people with ID are at an increased risk of cancer and of mortality, compared with the general population. This review aims to systematically identify and synthesise the published academic literature exploring cancer risk-factor and symptom awareness among people with IDs, carers and healthcare professionals.

Methods: In line with Arksey and O'Malley's (2005) framework for scoping reviews, five incremental stages were followed: (1) identifying research question, (2) identifying relevant studies, (3) study selection, (4) extracting and charting of data, and (5) collating, summarising and reporting results. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (PRISMA-Scr).

Results: The search strategy identified 352 records, 16 records met all eligibility criteria and were included for review. The studies address a range of areas including knowledge and awareness of cancer risk-factors and symptoms and interventions to promote awareness of cancer.

Conclusions: Cancer risk-factor and symptom awareness is low among adults with ID, paid and unpaid carers and healthcare practitioners (HCPs). Theoretically underpinned, co-designed tools and interventions to improve awareness are lacking. There is uncertainty surrounding how to best support people with ID in raising cancer awareness, even within the professional healthcare environment. There is a predominance of research on breast cancer awareness. Future studies focusing on other cancers are needed to build a complete picture of awareness among adults with IDs, paid and unpaid carers, and HCPs.

Keywords: Cancer; Cancer awareness; Early diagnosis; Intellectual disability; Learning disability; Symptom awareness.