Long-term condition management in adults with intellectual disability in primary care: a systematic review

Background: Adults with intellectual disabilities have higher morbidity and earlier mortality than the general population. Access to primary health care is lower, despite a higher prevalence of many long-term conditions. Aim: To synthesise the evidence for the management of long-term conditions in adults with intellectual disabilities and identify barriers and facilitators to management in primary care. Design & setting: Mixed-methods systematic review. Method: Seven electronic databases were searched to identify both quantitative and qualitative studies concerning identification and management of long-term conditions in adults with intellectual disability in primary care. Both the screening of titles, abstracts, and full texts, and the quality assessment were carried out in duplicate. Findings were combined in a narrative synthesis. Results: Fifty-two studies were identified. Adults with intellectual disabilities are less likely than the general population to receive screening and health promotion interventions. Annual health checks may improve screening, identification of health needs, and management of long-term conditions. Health checks have been implemented in various primary care contexts, but the long-term impact on outcomes has not been investigated. Qualitative findings highlighted barriers and facilitators to primary care access, communication, and disease management. Accounts of experiences of adults with intellectual disabilities reveal a dilemma between promoting self-care and ensuring access to services, while avoiding paternalistic care. Conclusion: Adults with intellectual disabilities face numerous barriers to managing long-term conditions. Reasonable adjustments, based on the experience of adults with intellectual disability, in addition to intervention such as health checks, may improve access and management, but longer-term evaluation of their effectiveness is required.