|Institution(s):||a CPEC, London School of Economics and Political Science;|
|Production date:||February 2023|
|Acknowledgements:||We are grateful to the ESSENCE project advisory group for their helpful comments on earlier versions of this case summary.|
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Legislation and guidance, such as the Equality Act 2010 and Convention of the Rights of People with Disabilities, require that barriers for people with learning disabilities in accessing health services are removed and reasonable adjustments are made. As part of this, annual health checks (AHCs) for people with learning disabilities are part of a public health strategy in the UK, which seeks to improve detection, treatment, and prevention of new health conditions in this population.
In England, the coverage of the population receiving annual health check of those who are eligible is 75%; a target that was achieved despite the Covid-19 pandemic. Its scaled implementation also led to a few innovative examples of wider system changes beyond primary care (specifically, improvements to reduce access problems in secondary care). Whilst they were implemented for all age groups, they might have particular importance in reducing morbidity and mortality as people with learning disabilities age, as this is when multi-morbidity is particularly common and the consequences of not detecting conditions can be fatal.
Guidance from the National Institute for Health and Care Excellence on ‘Care and support for people growing older with learning disabilities’,1 recommends that older people with learning disabilities should be offered AHCs followed by prompt referral to specialist services when needed. It also highlights the need for wider system changes for AHCs to facilitate health improvements. This case summary present economic evidence from the modelling study conducted for the NICE guideline.2
Older people with learning disabilities have more health conditions than people of a similar age in the general population,3-5 many of which go undetected and untreated.6 This higher morbidity has been explained by a combination of genetic and lifestyle factors, with pervasive disadvantages including discrimination contributing to poor access to healthcare for this population.7 In addition, there are substantial clinical challenges in identifying health conditions early in this population due to ‘diagnostic overshadowing,’ whereby physical and mental health symptoms are not only misattributed to the learning disability but also to age-related changes.8
Whilst factors that prevent early identification and management of health conditions play a role for all people with learning disability regardless of their age, they accumulate over a person’s lifetime and have a greater impact on quality of life as people age.9 In addition to ethical reasons, there are also economic arguments for focusing on this population as rates of health and social care service utilisation for this population are particularly high.10
This case summary presents economic evidence in relation to AHCs a public health strategy which seeks to increase prevention or early identification and management of health conditions. The evidence refers primarily to an economic modelling study that informed recommendations outlined in guidance by the National Institute for Health and Care Excellence on ‘Care and support for people growing older with learning disabilities’.1
Whilst AHCs are not directly social care, they were covered by the NICE social care guideline as they are an important way of ensuring wellbeing for this population, and so have wide ranging effects on their use of social care services. In addition, whilst provided by healthcare professionals it often requires the involvement of a support worker. The modelling study2 conducted for the NICE guideline is to our knowledge the only study which looked at this population of older people specifically.
Health checks exist in various countries and have been implemented in different forms. In England, health checks were introduced in 2008 in the form of a national scheme which incentivises general practices to offer checks to people registered as having a learning disability each year (which is why they are typically referred to as ‘annual health checks’).11 Staff from practices which opt into the scheme are required to undergo specialist training. This includes the use of templates such as the Cardiff Health Check, and more recently the National Electronic Health Check. The latter incorporates a wide range of questions about health conditions including ageing-related disorders, bowel and breast cancer screening and tests for osteoporosis. It also includes a section on mental health (NHS England).
Evaluations of national schemes found that AHCs led to the identification of unmet health needs and unrecognised life-threatening conditions11,12 Systematic reviews have confirmed they are effective in identifying new health problems, improving uptake of certain preventive interventions and other indicators of quality of care.13 Overall, there is not much evidence that they can improve longer-term health outcomes such as mortality and morbidity.14 One study has shown that whilst they did not alter overall emergency admissions they appeared to reduce preventable emergency admissions,15 possibly indicating better management of epilepsy and seizures in the community. None of the evidence relates specifically to older people.
NICE guidance1 concludes that there is an overall lack of qualitative studies which explore the views and experiences of people with learning disabilities, their families, carers and practitioners with regards to AHCs. It would be helpful to investigate issues around facilitators and barriers to AHCs via qualitative studies, while comparing other approaches to identifying health conditions and providing access to health care.
Evidence from residential care home settings in the UK and Australia8,16 suggests variations in health examinations by General Practitioners (GPs), with care home staff reporting that GPs largely make efforts in accommodating the needs of residents by communicating clearly about health conditions (without being alarming) and ensuring continuity of care. Clear communication as part of AHCs has been linked to improved user satisfaction with care.17
However, they also report negative experiences, with some GPs showing reluctance to conduct AHCs in care homes. The study from Australia even showed discrimination from some GPs putting people at risk of not receiving follow up care: “Well, yes it doesn’t really matter that the follow-up hasn’t happened, because, after all, she’s not normal”.(8; p264) In addition, there were challenges in ensuring that when residents needed healthcare that they received the appropriate support, for example while being in hospital. A study by Webber18 found that carers were concerned about the failure of hospital practitioners to describe treatment and diagnosis to older people with learning disabilities on the assumption that they would not understand (p8).
Findings from the economic modelling study conducted as part of the NICE guidance1,2 suggest that AHCs provided to older people with learning disabilities can lead to small improvements in health-related quality of life and mortality risk. However, these improvements were not large enough to justify the additional costs if standard thresholds for cost per unit of health-related quality of life improvement were applied. This raises immediate ethical concerns, which we reflect on later in this section.
First, we will present the findings and offer some explanations for them. In the model, AHCs led to a mean quality-adjusted life years (QALY) gain of 0.07 and mean incremental costs of £4,800 (in 2016 prices). The mean incremental cost-effectiveness ratio was above £85,000 per QALY. The yearly cost of AHCs was £260 per person, which in addition to the costs for General Practice staff included the costs of a support worker. Under cost per QALY thresholds commonly applied by NICE, which range from £20,000 to £30,000, AHCs could not be considered cost-effective. Costs of intervention needed to reduce from £258 to under £100 per year for health checks to be cost-effective.
The analysis was based on a decision-analytic Markov model which used probabilistic sensitivity analysis to derive probable rather than definitive values for costs, QALYs and incremental cost-effectiveness ratios. In the model, costs and QALYs were discounted at 3.5%.
One main distinction from other economic studies which investigated the cost-effectiveness of health checks,19 is that a much higher cost of AHCs was applied in this model. This included the costs of supporting the person to be able to attend the AHC. This was based on advice from the experts who developed the NICE guidance (the Guideline Committee).
Overall, the findings highlight a dilemma between economic and ethical arguments, some of which reflect a limited knowledge about longer-term individual and societal impacts because of lack of follow up data. For example, deteriorating health problems are a main reason for care home admissions in this population but a lack of evidence prevented including this outcome, leading to a potential underestimation of the economic benefits of AHCs.
Other knowledge gaps that hindered establishing the economic evidence included accurate prevalence data of certain health conditions; the costs for additional support that people require to access healthcare, including help from health or social care professionals as well as from unpaid carers; and the effectiveness evidence of prevention and treatment intervention. These are partly established for the general population but might differ for this population.
Overall, there are many reasons why simply identifying a health condition might not lead to any improvement as there are many barriers to access and uptake of prevention and treatment interventions, many of which are not in the control of the GPs and require wider system changes.
The evidence that national schemes that introduce AHCs in primary care achieve improvements in short-term process measures, such as the number of health checks attended, health assessments and investigations done and common health conditions diagnosed, is robust and consistent. How such findings relate to different sub-populations of people with learning disabilities, including age groups, is less well established. There is also much that is unknown about how to reduce variation in the quality of how AHCs are implemented
With regards to evidence concerning long-term health outcomes and economic consequences, many gaps remain. Findings from the economic modelling study2 presented here should be considered explorative only due to the large gaps in evidence. Various assumptions had to be made with regards to the prevalence of health conditions, (cost-)effectiveness of treatment and costs of AHCs.
Important gaps in evidence that should be addressed urgently are the best ways of reducing barriers to access and uptake of prevention and treatment for this population, and the costs of different approaches, including those to family members and carers. Further understanding is needed with regards to the identification of ageing-related health conditions in these populations, and the training and collaboration required to ensure that health conditions can be identified early and lead to appropriate treatment or early intervention. Further evidence is needed about the support that people currently get versus what they need in order to benefit from AHCs, such as the help of a support worker.
Data from 2012 showed that only half of eligible adults received AHCs.20 Since then, major progress has been made showing that 74% of eligible people with a learning disability received an annual health check in 2020,21 therefore achieving the goal set in the NHS Long Term Plan early despite the additional challenges for the health system caused by the pandemic.
In addition, national policies and programmes21 have been put in place to facilitate wider system changes in secondary care alongside the scaling up of AHCs in primary care. These efforts are encouraging and reflect recommendations in NICE guidance to ensure wider system changes take place alongside AHCs, to achieve long-term health improvements for this population. For example, seven trailblazers will be introducing new ways of working to help make improvements to access to care for people with learning disabilities.21 Their focus will include increasing the uptake and quality of AHCs and the number of people with a learning disability who get their flu jab each year. It is planned that lessons from trailblazers will be rolled out as good practice across the NHS.
NICE (2018) Care and support of people growing older with learning disabilities. NICE guideline 96. London, National Institute for Health and Care Excellence. [The guidance can be accessed here]
Bauer A, Taggart L, Rasmussen J, et al. (2019) Access to health care for older people with intellectual disability: a modelling study to explore the cost-effectiveness of health checks. BMC Public Health. 19: 706.
NIHR School for
Social Care Research