Co-design of an NHS primary care health check for autistic adults.

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.

Views about primary care health checks for autistic adults: UK survey findings.

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.

How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians.

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.

A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults.

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.

Proactive PICC placement: evaluating the patient experience.

AIM: to evaluate patient experience following the proactive placement of a peripherally inserted central catheter (PICC). METHOD: all patients with a PICC in situ who had attended the chemotherapy day unit over a period of 15 weeks were invited to complete a self-administered questionnaire. Questions related to: information giving, the degree of pain on insertion and any complications experienced by the patient while the device was in situ. There was also space to allow for free-text comments after each question. RESULTS: the majority of patients felt they received enough information and that the procedure was fully explained. Pain on insertion was largely reported as being minimal, with the few patients who did report the procedure as painful also reporting there being difficulty with the insertion. Complication rates were low, the main complication reported was mechanical owing to difficulty with blood withdrawal. CONCLUSION: irrespective of how uncomfortable the patient found the procedure, the majority of patients would recommend proactive PICC insertion to other patients as 'it made the whole process much easier'.

Cancer-related fatigue: results from patient experience surveys undertaken in a UK regional cancer centre.

PURPOSE: Cancer-related fatigue (CRF) is a common but under reported symptom significantly impacting on cancer patients' quality of life. The purpose of these surveys was to drive improvements in the provision of support of patients with CRF. METHOD: Two surveys were conducted to determine the incidence and impact of cancer-related fatigue (CRF) amongst patients attending a Cancer Centre (CC) for radiotherapy and/or systemic anti-cancer therapy. RESULTS: Survey 1: retrospective examination of 68 patients' clinical notes. Survey 2: a questionnaire distributed prospectively to 148 patients whilst attending for treatment. Survey 1 identified 29 patients' notes recording the patient experiencing fatigue, but only two were given any advice to manage symptoms. In survey 2, the majority of patients (86%) were advised about the risk of CRF before treatment, but only 67% were assessed and advised about CRF during treatment. Physical fatigue (57%) was more common than emotional (37%) or cognitive fatigue (29%). CONCLUSIONS: Many patients are not being given advice to manage their CRF symptoms. Reasons for this include a lack of awareness regarding the occurrence of CRF and its impact and a misunderstanding by Health Care Professionals (HCPs) about the advice patients should be given. Recommendations include the continued need to improve education of HCPs to ensure patients receive the appropriate advice they need to manage their CRF.