Aim To determine the proportion of adults with cerebral palsy (CP) using health services and frequency of use, and to explore experiences and perceptions of health services for this population. Method A mixed‐methods systematic review was conducted using the Joanna Briggs Institute methodology. Five databases were searched to September 2020. Observational and qualitative studies were included. Two reviewers screened titles, abstracts, and full texts; extracted data; and assessed the quality of included studies. Separate meta‐analyses were used to pool the proportion of adults using each service and frequency of use. A meta‐aggregation approach was used to synthesize qualitative data. Quantitative and qualitative findings were integrated using the Andersen and Newman Model of health care utilization. Results Fifty‐seven studies (31 quantitative, 26 qualitative) of 14 300 adults with CP were included. The proportion of adults using services ranged from 7% (95% confidence interval [CI]: 2–13%) for urologists to 84% (95% CI: 78–90%) for general practitioners. Incidence of visits ranged from 67 (95% CI: 37–123) hospital admissions to 404 (95% CI: 175–934) general practitioner visits per 100 person‐years. Qualitative themes highlighted issues regarding accessibility, caregivers’ involvement, health workers’ expertise, unmet ageing needs, transition, and health system challenges. Interpretation Adults with CP used a wide range of health services but faced context‐specific challenges in accessing required care. Appropriate service delivery models for adults with CP are required. This review emphasizes a need to develop an appropriate service model for adults with CP to meet their needs.

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Cerebral palsy (CP) is a common childhood neurodevelopmental condition. Although motor impairments are a key feature, 1 individuals with CP also experience associated impairments such as epilepsy, cognitive, visual, hearing, or speech impairments. 1,2 Most children with CP survive well into adulthood. 3 As adults, those with CP may experience several comorbidities including pain and decline in their mobility. 4,5 However, it has been reported that health service use by individuals with CP decreases following transition from child to adulthood, possibly because of lack of available health service. 6,7 A mixed-methods systematic review found that adults with CP visit a range of health professionals such as general practitioners, dentists, physiotherapists, occupational therapists, rehabilitation specialists, speech and language therapists, and psychologists. 8 However, most studies described health service use in relatively small samples (< 300 adults), which may result in imprecise estimates of the proportion using each service. 8 Studies that included larger samples were limited to young adults [9][10][11] or focused on specialist medical services, emergency department visits, general practitioners, and inpatient and outpatient services. 12,13 There is still a lack of evidence about

IntroductionCerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the doctoral research process. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic.MethodsThis paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the doctoral researcher and adults with CP using the INVOLVE Values and Principles framework. Five adults with CP were consulted throughout the doctoral research programme. The data for this paper is a combination of reflection notes, email exchanges, meeting minutes and informal discussions with the PPI team on their experiences of being involved in the PPI process. The content of this paper is informed by GRIPP 2 checklist.ResultsThe doctoral researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage of the doctoral research process. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research.ConclusionInvolving adults with CP positively impacted the doctoral research process. It is recommended to consider individual access needs to ensure meetings and information are accessible for disabled adults. Our reflective findings and recommendations may help other researchers who plan to involve adults with CP in doctoral research.

IntroductionCerebral palsy (CP) is a neurodisability that primarily results in motor impairments and activity limitations, but is often associated with epilepsy and disturbances of sensation, perception, cognition, behaviour and speech. Most children with CP survive well into adulthood. Adults with CP experience increased risk of age-related chronic conditions such as arthritis, stroke, cardiorespiratory and mental health conditions in addition to the ongoing disabilities experienced from childhood. Therefore, adults with CP often require extensive health services. However, health service use among adults with CP has not been well documented. This mixed method review aims to identify, appraise and synthesise quantitative and qualitative literature examining health service use among adults with CP.Methods and analysisThe mixed method systematic review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology. A systematic search of MEDLINE (Ovid), CINAHL, Embase, PsycINFO and Cochrane Library from inception to March 2020 will be conducted. Quantitative observational studies, qualitative studies and mixed method studies examining health service use among adults with CP (≥18 years) will be included. Outcomes of interest are the proportion of adults using health services frequency of use and experiences of health services from the perspectives of adults with CP, caregivers and health service providers. Two reviewers will independently screen titles, abstracts and full-texts, extract data and assess the quality of included studies using JBI instruments. Where possible a pooled analysis and aggregation of findings will be performed for quantitative and qualitative data, respectively, and Grading of Recommendations Assessment, Development and Evaluation (GRADE)/GRADE-CERQual (Confidence in Evidence from Reviews of Qualitative research) employed. Quantitative and qualitative findings will be integrated using a triangulation approach at the synthesis stage. A narrative synthesis will be carried out where this is not possible.Ethics and disseminationEthical approval is not required for this review. The findings will be disseminated through a peer-reviewed journal and conferences.PROSPERO registration numberCRD42020155 380.

Aim To assess the prevalence and incidence of chronic conditions among adults with cerebral palsy (CP) and compare them to the prevalence and incidence among adults without CP. Method We searched MEDLINE and Embase for studies reporting the prevalence or incidence of one or more chronic conditions among adults with CP. Two independent reviewers screened titles, abstracts, and full‐text articles. Two independent reviewers extracted data relating to prevalence and incidence and appraised study quality. We performed random‐effects meta‐analyses to pool prevalence and incidence. Results We identified 69 studies; 65 reported the prevalence of 53 conditions and 13 reported the incidence of 21 conditions. At least 20% of adults had the following conditions: depression (21%); anxiety (21%); mood affective disorders (23%); asthma (24%); hypertension (26%); epilepsy (28%); urinary incontinence (32%); malnutrition (38%); and scoliosis (46%). Adults with CP were more likely to have type 2 diabetes, anxiety, bipolar disorder, depression, schizophrenia, hypertension, ischaemic heart disease, stroke, cerebrovascular disease, asthma, liver disease, osteoarthritis, osteoporosis, underweight, and chronic kidney disease than adults without CP. Interpretation These data from 18 countries, which provide an international perspective, may be used to promote awareness, identify targets for intervention, and inform the development of appropriate supports for adults with CP.

Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.

IntroductionDesign thinking is a human-centred process that aims to identify the needs of end-users and iteratively develop solutions. Involving end-users in the development and design of solutions may enhance effectiveness by increasing focus on the needs of the target population. This paper describes the process of co-designing resources to support the transition from child-centred to adult-orientated health services using a design thinking approach.MethodsFive co-design workshops were conducted remotely with a young person advisory group and parent advisory group. A design thinking process guided by the Stanford D.School approach was used to understand the transition needs of young people and their parents and iteratively develop solutions to improve end-user experience.ResultsEight resource prototypes were generated: (1) designated transition coordinator, (2) digital stories of transition experience (3) written informational support (4) transition website, (5) transition checklists and worksheets (6) transition app, (7) transition programme or course and (8) educational programme for health professionals.ConclusionDesign thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.