Improving the Health of Older Autistic People: Intervention
Research type
Research Study
Full title
Improving the Health of Older Autistic People: Tailored Healthcare Adjustments Intervention
IRAS ID
250718
Contact name
Barry Ingham
Contact email
Sponsor organisation
Northumberland, Tyne and Wear NHS Foundation Trust
Clinicaltrials.gov Identifier
-, -
Duration of Study in the UK
1 years, 1 months, 31 days
Research summary
Research Summary
As the population ages, the provision of services to meet the health and wellbeing needs of older people on the autism spectrum is increasingly important. Those who were diagnosed in the 1960’s, as awareness of autism was increasing, are now in later life and their needs are likely to have changed as they have aged.
Recent research in Sweden found that autistic people died over 16 years earlier than non-autistic people. This disparity was greater for autistic people with a learning disability (LD) whom were found to die more than 30 years before non-autistic people. Autism was found to be related to increased mortality even when accounting for the underlying cause of death. Poor healthcare, including unmet healthcare needs, has been suggested as one factor that contributes to this premature mortality. This is even more problematic given autistic people are two to three times more likely to access healthcare for physical health problems, mental healthcare, or prescription medication.
Autism is characterised, in part, by social communication difficulties. Such difficulties have been associated with premature mortality in those with learning disabilities (LD) (Confidential Inquiry into the Premature Deaths of People with Learning Disabilities, 2013). Therefore, we expect that people on the autism spectrum, including those without LD will be even less likely to receive appropriate primary health care due to a number of reasons such as communication difficulties with doctors, sensory issues around the physical healthcare environment, being examined, and difficulties in recognising and dealing with changes in their own bodies. As such it is crucial to identify ways to reduce these health disparities and develop new ways of adapting the healthcare offer to improve access for older autistic people. This project aims to pilot a tailored healthcare adjustments intervention matched to the needs of older autistic people.Summary Results
Improved services that meet the health and wellbeing needs of older autistic people are needed to address autistic people’s health conditions, premature mortality and barriers to effective healthcare. We consulted with older autistic adults and clinicians to develop the ‘Tailored Healthcare Adjustments’ (THA) intervention, a structured and personalised approach to using reasonable adjustments to improve healthcare access. We wanted to test out how acceptable the THA intervention was and whether it was feasible to evaluate it in terms of improving healthcare access for autistic people and identifying unmet clinical needs. We undertook a feasibility study of the THA which was undertaken with 24 older autistic people aged ≥50 years who experienced at least two health conditions. The THA intervention consisted of up to four sessions with a participant to explore tailored health adjustments and subsequent sessions with healthcare providers to implement these adjustments. Most of the participants completed the intervention but a small number were unable to for different reasons (e.g. they were in palliative care). We undertook interviews with participants after the THA intervention which identified that they chose to participate in the research in order to help themselves and other autistic people through getting a better understanding of what works for autistic people. They were also positive about the THA intervention and the research processes more generally. We also found the THA intervention helped to improve clinician communication in relation to autism and positively change participants’ own approaches to healthcare. Importantly, participants reported feeling more confident knowing that their GPs were aware of the adjustments they need. Participants also reported that new health conditions and unmet needs were identified through the THA intervention, which were then treated, adjustments introduced or onward referrals made (e.g. referral to falls clinic, investigation of potential hernia). Overall, the THA intervention was found to be feasible and acceptable for autistic adults to engage with. THA increased access to healthcare for older autistic adults with long-term health conditions and we think this could be tested out further in future research.
REC name
Wales REC 5
REC reference
18/WA/0397
Date of REC Opinion
26 Nov 2018
REC opinion
Favourable Opinion