People with learning disabilities experience poor health and unequal access to healthcare [Robertson et al, 2010]. In some circumstances this leads to the premature death of people with learning disabilities from preventable causes.
This study, based on data from Ontario in Canada focuses on uptake of regular health checks and participation in cancer screening as indicators of preventative healthcare that can potentially improve the health of people with learning disabilities. These are valid indicators and there is clear evidence that regular health checks for people with learning disabilities result in the identification of previously undetected comorbidities [Robertson et al, 2010, Buszewisz et al, 2014].
Research focused on uptake of cancer screening among people with learning disabilities shows that uptake of these services is lower for people with learning disabilities than that for the general population.
In this article Kuntz et al (2014) argue that it is essential that people with learning disabilities have equal access to the same range of secondary prevention services as those offered to the general population.
The paper draws on analysis of linked administrative data drawn from public records, health care and community care services in Ontario, Canada. The datasets selected provided diagnostic and demographic information along with data relating to interactions with different levels of the healthcare system for the whole population of Ontario.
This process enabled the identification of a study cohort of people with learning disabilities (n = 66,484) aged between 16 and 64 years. A random sample of people within the same age range (n = 2,760,670) was selected as a comparison group, representing 20% of the population without a learning disability.
The study results were presented across the 5 indicators that were identified as reflective of secondary prevention.
Indicator 1: Periodic health examination
- 22% of 66,484 adults with learning disabilities had a ‘periodic health examination’ compared to 26.4% of comparison group – the researchers found that this difference grew bigger with increasing age. It is worth noting that uptake among both groups was relatively low.
- Across both groups men were less likely than women to have an examination. Rates of uptake were similar for men in both groups. Thus, differences in the uptake of periodic health screening are only observed among women (24.7% for women with learning disabilities compared to 32%)
Indicator 2: Colorectal cancer screening
- 32% of the eligible learning disability cohort were found to be up to date with screening compared with 47.2% in general cohort
- Screening levels increased with age but so did the gap between the 2 cohorts
- More women than men were screened in both cohorts
Indicator 3: Breast cancer screening
- 52.2% of eligible women in the learning disability cohort had had a mammogram compared to 70.7% of eligible women in the general cohort
- Uptake increased with age for both cohorts
Indicator 4: Cervical cancer screening
- 33.7% of eligible women with learning disabilities had a smear test compared to 66.7% of eligible women in the other cohort
Whilst uptake for health checks was found to be relatively low for both groups the authors state that there is a growing international evidence base that supports periodic health checks for people with learning disabilities. A more recent longitudinal cohort study by Buszewicz et al (2014) supports this, indicating a positive association between health checks and increased levels of health related activity that have the potential to contribute positively to health outcomes for people with learning disabilities.
The authors suggest that incentivisation schemes may lead to increased uptake and cite examples of schemes in England and Wales that have resulted in increased uptake of this preventative service. However Buszewicz et al found that despite the presence of incentivisation schemes there was still a high level of variability among practices in relation to uptake of health checks.
The results of this study show that eligible adults with learning disabilities are less likely than eligible adults without learning disabilities to participate in population based cancer screening. The authors suggest that a significant factor in this is the mistaken belief among many healthcare practitioners about the risks of different cancers for this group. Such assumptions particularly affect uptake levels of cervical and breast screening for women with learning disabilities.
This article found that the differential rates of access varied for different types of screening as well as by age and gender. The authors highlight multiple barriers to uptake, including:
- Attitudes and perceptions of carers and health care workers (Cervical and breast screening)
- Physical barriers to accessing services
- Lack of awareness/understanding among people with learning disabilities and carers
- Complex requirements of some types of screening (Colorectal screening)
Each of these barriers can potentially impact on uptake of screening for people with learning disabilities. The paper suggests the following actions to address these:
- Development of accessible and targeted communications designed for people with learning disabilities and carers
- Actions to address the physical and technical barriers to accessing screening services.
- Targeted campaigns to increase awareness
Educational programmes for care workers to support people with learning disabilities to provide samples where necessary
Strengths and limitations
The strength of this study is its contribution to the growing body of work that analyses patterns of engagement and access to preventative healthcare services for adults with learning disabilities.
It highlights further areas for researchers and identifies an urgent need to understand how policy and practices can be adjusted to ensure increased uptake of these essential services.
The study also has some important limitations and the authors cite the lack of data relating to people aged 65 and over in this study as a key constraint.
They also suggest that analysis of data from other sources that could indicate whether or not people lived alone or with support would be valuable. I would strongly agree that analysis of the findings of this study would have benefitted from the inclusion of data that could enable a more holistic analysis of confounding factors, such as deprivation.
The authors also argue that it is difficult to ascertain the impact of low cancer screening uptake as there is a dearth of cancer specific incidence, treatment and mortality studies available focusing on this population.
This study reports disparities in uptake of secondary prevention for people with learning disabilities. The authors claim that these may be due to multiple barriers such as communication, education, attitudes of staff and carers as well as the technical aspects of some screening techniques.
The article clearly establishes the value of increasing uptake of regular health checks and cancer screening and contributes to our understanding of the differential rates of uptake for people with learning disabilities when compared to those of the general population. In order to translate these findings into policy and practice there is an urgent need to focus on building a better understanding of the reasonable adjustments that could be made to address some of the institutional barriers to healthcare that lead to delays in diagnosis and treatment [CIPOLD 2013].
The article also highlights the need for further research to evaluate the risks and benefits for people with learning disabilities of different screening methods for different diseases.
Ouellette-Kuntz, H.et.al (2015) The uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities. Journal of Applied Research in Intellectual Disabilities, 28. Pp.43-54 [abstract]
Robertson, J. et al. (2010) Health Checks for People with Learning Disabilities: A Systematic Review of Evidence. Available at: https://www.improvinghealthandlives.org.uk/uploads/doc/vid_7646_IHAL2010-04HealthChecksSystemticReview.pdf (accessed 8/4/15)
CIPOLD (2013) Confidential Inquiry into premature Deaths of People with Learning Disabilities (CIPOLD): Final Report. Available at: http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf (accessed 8/4/15)
Buszewicz, M.et al. (2014) Assessment of an incentivised scheme to provide annual health checks in primary care for adults with intellectual disability: a longitudinal cohort study. Lancet Psychiatry, 1 (7). Pp.522-530
Osborn DPJ, Horsfall L, Hassiotis A, Petersen I, Walters K, et al. (2012) Access to Cancer Screening in People with Learning Disabilities in the UK: Cohort Study in the Health Improvement Network, a Primary Care Research Database. PLoS ONE 7(8)