Autistic people experience higher rates of physical and mental health conditions and face barriers to accessing healthcare. This study evaluated the acceptability and implementation of a co-designed primary care health check for autistic people (18 years+), delivered within a randomised controlled trial in Northern England investigating clinical and cost-effectiveness. Following health checks, all autistic people, carers/supporters, and clinicians were invited to complete evaluation questionnaires and a subset invited for an interview. Eighty-one autistic people, 11 carers/supporters, and 18 clinicians returned questionnaires and were descriptively analysed; 44 participants were interviewed. Findings demonstrated that the pre-appointment questionnaire and health check appointment were reported to be acceptable, valued and beneficial by all groups. Carers/supporters reported positive impacts of their role in reducing anxiety and supporting communication. Interview analysis, informed by Normalisation Process Theory, highlighted important factors to consider for implementation of the health check at scale. This included the importance of providing clear guidance and resources ahead of the health check and ensuring enough funding and capacity in primary care. Health checks can be delivered to autistic people in local neighbourhoods to address heath inequalities. Health checks require adequate resources, staff training, and integration into care systems to ensure successful implementation and sustainability.Lay AbstractImproving healthcare for autistic people: a study of a new primary care health checkAutistic people often face more health problems and shorter average life expectancy compared to non-autistic people. They can also find it harder to access healthcare that meets their needs. To help with this, researchers developed a new health check specifically for autistic people to be used in general practice settings. This health check included a pre-appointment questionnaire to help prepare for the visit and a longer appointment with a trained clinician. This study looked at how acceptable the health check was for autistic people, their carers/supporters, and clinicians, and what factors will help it work well in practice. It used questionnaires and interviews to collect views from autistic people who received the health check, clinicians who delivered it, and carers/supporters who attended the appointment. Most autistic people thought the health check was helpful and they would attend one again. The pre-appointment questionnaire helped people share important information, although some found it difficult to complete and some people needed support to complete it. Carers/supporters also found the process helpful in supporting the autistic adult and improving communication. Clinicians said they were able to put adjustments in place, use the clinician health check template, and found the extra time and structure the health check provided useful. However, they mentioned needing more resources and support to make it work in everyday practice. The interviews showed that autistic people, carers/supporters, and clinicians thought the health check is a good idea and should be offered more widely. It is important to make sure autistic people understand what to expect from the health check and that they can ask for adjustments to meet their needs. For the health check to work well long term, general practice settings will need funding, staff training in autism awareness, and clear systems for delivering the health checks.

Abstract Background Autistic people commonly have physical and mental health conditions. They also frequently experience barriers to accessing healthcare, contributing to problems identifying and treating health conditions. These factors may lead to increased and earlier morbidity and lower average life expectancy for autistic people. Health checks specifically designed for autistic people, incorporating adjustments to healthcare, may help to overcome these barriers and reduce health inequalities. This trial aims to investigate the clinical and cost-effectiveness of a primary care health check for autistic adults and explore factors related to implementation such as acceptability and feasibility of delivery. The trial is co-designed and delivered by health professionals, autistic people, carers and supporters, and researchers. Methods This is a clinical and cost-effectiveness, cluster randomised controlled trial of a primary care health check for autistic adults. Primary care practices will be randomised into one of two groups (intervention or control). Two hundred autistic adults (aged 18 years and over) who provide baseline data will be recruited via participating practices. Data will be collected through quantitative and qualitative methods. The primary outcome will be the incidence of new health needs/conditions detected and met at 9 months (data gathered from participant’s GP records). Secondary outcomes will include the following: cost-effectiveness, measured as incremental cost per quality-adjusted life year gained over 9 months; the extent of health monitoring and health promotion needs met at 9 months; the incidence of social care needs identified at 9 months; changes in participant or carer general health; changes in quality of life; primary and secondary health and social care resource usage and costs. A qualitative study will explore views about the acceptability of the health check, its utility and future use. Discussion This study will examine the effectiveness and cost-effectiveness of a primary care health check for autistic adults in identifying new health conditions and needs. If the intervention is effective, it would provide strong evidence for implementation into routine healthcare, therefore enabling earlier health condition diagnosis and opportunities for treatment, reducing the health inequalities experienced by autistic people. Trial registration ISRCTN, retrospectively registered on 20 July 2023. https://www.isrctn.com/ISRCTN30156776 (ISRCTN registration number: 30156776).

Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people. Lay abstract Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people's views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person's physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.

Background: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. Aim: To establish the views of autistic people towards a primary care health check for autistic people. Design & setting: Cross-sectional questionnaire study in England and Wales. Method: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. Results: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician’s autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. Conclusion: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults.

Autism spectrum condition is associated with co-occurring physical health conditions and premature mortality. Autistic people experience multiple barriers to accessing healthcare. This study investigated autistic people’s experiences of healthcare and professionals’ experiences of providing healthcare to autistic people. Focus groups with 11 autistic people and one supporter, and 15 one-to-one interviews with healthcare professionals were completed. Nine themes emerged from the autistic participants’ data and eight themes emerged from the health professionals’ data. Three themes were identified by both groups: healthcare contacts (for improving the patient–provider relationship), making reasonable adjustments to healthcare (e.g. providing alternative places to wait for an appointment) and autism diagnosis. Autistic participants discussed the role of cognitive factors in the success of healthcare visits (such as rehearsing an anticipated conversation with the clinician the night before an appointment) and clinicians described system-level constraints that may affect healthcare delivery (such as time limits on appointments). This study identified inexpensive changes that health professionals and managers can make to improve healthcare access for autistic people. Lay abstract Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets.

Autistic people are more likely to: be diagnosed with a range of physical health conditions (i.e. cardio-vascular disease); experience premature mortality (for most disease categories); and experience barriers to effectively accessing healthcare. This systematic review sought to identify studies that report on barriers and facilitators to physical healthcare access for autistic people. A total of 3111 records were screened and six studies were included: two quantitative, two qualitative, and two mixed-methodology studies. Patient-provider communication, sensory sensitivities, and executive functioning/planning issues emerged as important barriers to healthcare. Recommendations for clinicians and those planning services are discussed.