Search

Background/AimsPatients with congenital heart disease are living longer as a result of surgical and medical advances. General practice is key in identifying and supporting lifelong care, yet there is a lack of research into congenital heart disease in this area. This study aimed to explore the prevalence and comorbidities of patients with congenital heart disease compared to those without congenital heart disease in primary care settings in Cheshire, England.MethodsThis cross-sectional study used routinely collected health data from the NHS general practice population information disease database within primary care in Cheshire. Clinical read codes for congenital heart disease were added to the current data analytics risk stratification tool. Searches for patients of all ages with and without congenital heart disease were undertaken in July 2022. A total of 765 576 patients were included in the study.ResultsOf 765 576 patient records, 6419 patients were coded with congenital heart disease, a prevalence of 0.8%, with a comparatively younger age compared with the non-congenital heart disease cohort. Patients with congenital heart disease were three times more likely to have heart failure (odds ratio=3.36; 95% confidence interval=2.96−3.81) or stroke (odds ratio=3.58; 95% confidence interval=3.24–3.94). The most frequent comorbidities in both groups were hypertension, anxiety and depression, with no significant difference between the groups. Among those with congenital heart disease, the prevalence of a learning disability was more than eight times higher than those without congenital heart disease (odds ratio=9.23; 95% confidence interval=8.16–10.55) and autism was three times more likely (odds ratio=2.98; 95% confidence interval=2.32–3.84) in those with congenital heart disease.ConclusionsThere are high rates of comorbidities in the congenital heart disease population in primary care. Innovative use of digital instruments can enable identification and risk stratification of patients with congenital heart disease to support lifelong care. Congenital heart disease guidance should include primary care settings to create opportunities for mutual learning that can enhance collaborative practice.

Purpose: Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people. Design/methodology/approach: A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people. Findings: Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p< 0.001). Autistic young people scored significantly more items (p< 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p< 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial. Originality/value: Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.

Purpose: The purpose of the study is to identify and ascertain if there were any validated tools for diagnosing or screening autism spectrum disorder in adults with ID. The estimated prevalence of intellectual disability (ID) in the general population is about 10.37/1,000 population (Maulik et al., 2011). In total, 1 out of 4 individuals with ID suffers from an autism spectrum disorder (ASD) (Sappok et al., 2010). Early diagnosis and support for ASD is key to having a good quality of life. The diagnosis of ASD in people with an ID presents its own challenges and it is likely under-identification of ASD amongst adults with ID by about 20% to 30% (Emerson and Baines, 2010). Design/methodology/approach: Studies were selected based on the following criteria: studies that reported either screening or diagnostic tools for ASD, participants had an ID i.e. a mean IQ of <70, adults i.e. participants were >18 years of age at the time of entry to the study and articles reported either sensitivity, specificity or area under the curve. Relevant studies that were published up to January 2020 were identified from EMBASE, PsychINFO, CINAHL and PubMed. In total, 75 papers were identified of which 15 papers met the criteria. Findings: The screening or diagnostic tools currently in use is dependant on the degree of ID. A number of the tools had good psychometric properties and utility when used in people with specific degrees of ID or when used in combination with another screening or diagnostic tool. The authors could not identify a diagnostic tool that could be used across all levels of severity of ID unless used in combination. Hence, concluded that there is a need for a diagnostic tool with good psychometric properties for the assessment of ASD in adults with all degree of ID within a reasonable time period without the need for an additional tool to be used in conjunction. Originality/value: Currently, the “gold standard” for diagnosing ASD is a lengthy and time-consuming process carried out by trained multi-disciplinary team members who assess historical, behavioural and parent/carer report to arrive at a diagnosis. There are a number of tools that have been developed to aid diagnosis. However, it is important to identify the tools that can optimise the procedures and are also time-efficient.

Purpose: This paper aims to improve community care for people with intellectual disabilities (ID) and/or autism. Lack of coordination between agencies leads to children and young people with the most complex needs falling between services. The North West Operational Delivery Network (ODN) for learning disability and autism set out to develop a model of care for mental health services for children and young people with ID and/or autism in North West England that would improve coordination between services and lead to better community care. Design/methodology/approach: The ODN held a series of good practice events and consultations with stakeholders in North West England to look at gaps in service provision, national guidelines and agree on a pathway for services. Findings: The ODN decided to use the THRIVE framework as the basis for a specific model of care. Interventions were mapped against the THRIVE groupings, including pathways and team specifications for assessment and support for children with autism, and models for child and adolescent mental health service support for ID and/or autism, for keeping children and young people with behaviour that challenges in the community and transition. Originality/value: This model aims to provide the North West England region with a clear multi-agency approach for supporting the needs of this population and supports multi-agency commissioning, gap analysis, earlier intervention and improving health outcomes for this population.