Barriers to access to cancer screening for people with learning disabilities: a review

Abstract

BackgroundThe life expectancy of people with learning disabilities is increasing. Nowadays, mean life expectancy is estimated to be 74, 67, and 58 years for those with mild, moderate, and severe learning disabilities, respectively. The incidence and pattern of cancer among people with learning disabilities is rapidly changing, partly because of increased longevity and the lifestyle associated with independent living. There is strong evidence that the uptake of preventive services such as immunisation and screening is low among people with learning disabilities. Many studies have reported low uptake of screening activities, including cervical smear tests, breast self-examinations, and mammography, by people with learning disabilities. This study aimed to explore the barriers to access to cancer screening for people with learning disabilities and the effectiveness of interventions to improve uptake to cancer screening for them. MethodsA mixed-method review was undertaken, including both qualitative and quantitative research methods in the search. I did searches in June, 2012, using the British Nursing Index, CINAHL, Embase, HMIC, Medline, PsycINFO, and Social Science Citation Index via Web of Knowledge. I did not attempt to assess the grey literature. The studies to be included used participant adults, men and women, who had a learning disability (mild, moderate, or profound). All types of cancer for which there is a national UK cancer screening programme in place were included: breast, cervical, and bowel. Non-cancer screening programmes were excluded. Studies examining the increase of uptake of cancer screening programmes in adults without a learning difficulty or learning disability were excluded. Studies seeking to assess the effectiveness of interventions to increase the uptake of cancer screening programmes for this population were included. Those examining the barriers faced for people with learning disabilities accessing cancer screening programmes were included. Study design was not limited to randomised controlled trials; case-control and cohort studies and non-experimental designs were included. One reviewer searched and reviewed all abstracts and papers. Searches returned 28 unique results. The titles and abstracts of these papers were reviewed, 12 were selected for retrieval. Of the 12 papers reviewed in full, seven were included in the review. Reasons for rejecting studies were that the studies were related to the genetic screening of learning disabilities, cancer, or both; were on incidence of cancer in the learning disabled population; or cited cancer or learning disabilities as comorbidities for another intervention under study. The quality of each study was assessed with one of two methods dependent on the nature of the study. FindingsOne quantitative and six qualitative studies were identified. The studies ranged in quality; all included studies were deemed sound, but the quality scores varied across the range of study designs. The quantitative study used one-to-one counselling as an intervention to improve uptake of cervical screening. The qualitative studies used a mixture of qualitative methods to gather data on the barriers perceived by women with learning disabilities, their carers or support staff, or staff involved in cancer screening services. Thematic analysis of the qualitative studies was undertaken and three key themes of the perceived barriers were identified: scarcity of information, fear of medical intervention, and embarrassment. InterpretationThe evidence for strong interventions to reduce the barriers to access to cancer screening for people with learning disabilities is very weak, but the evidence about what barriers do exist is stronger. Interventions to tackle these barriers need to be developed and assessed to contribute to the evidence base in this area. It is important that steps are taken to improve the services available for people with learning disabilities as life expectancy and therefore cancer risk increases. FundingNone.