People with cerebral palsy (CP) may be at increased risk of musculoskeletal conditions due to various factors including malnutrition and abnormal levels of skeletal loading. This study aimed to compare the incidence of osteoporosis, osteoarthritis and inflammatory musculoskeletal diseases between adults with and without CP.A population based cohort study was conducted using data from the Clinical Practice Research Datalink collected between 1987 and 2015. Adults with CP were matched to adults without CP for age, sex and general practice. Cox models, stratified by matched set and adjusted for potential confounders, were fitted to compare the risk of osteoporosis, osteoarthritis and inflammatory musculoskeletal diseases.1705 adults with CP were matched to 5115 adults without CP. Adults with CP had an increased risk of osteoporosis in unadjusted (Hazard Ratio (HR) 3.67, 95% Confidence Interval (CI) 2.32 to 5.80, p < 0.001) and adjusted (HR 6.19, 95% CI 3.37 to 11.39, p < 0.001) analyses. No evidence of increased risk of inflammatory musculoskeletal diseases was observed in unadjusted or adjusted analyses. For osteoarthritis no evidence of increased risk was seen in the unadjusted analysis, but evidence of an increased risk was seen when the analysis was adjusted for alcohol consumption, smoking status, and mean yearly general practice (GP) visits (HR 1.54, 95% CI 1.17 to 2.02, p < 0.001).After accounting for potential confounding variables, we found that CP is associated with increased risk of osteoporosis and osteoarthritis. These findings provide the strongest epidemiological evidence to date for increased risk of osteoporosis and osteoarthritis in people with CP, and highlight need for clinical awareness of such conditions in this population.
Design 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.Five 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.Eight 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.Design thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.
ObjectivesThe aim of this study was to examine the validity of the International Physical Activity Questionnaire Short Form (IPAQ-SF) as a measure of physical activity (PA) in young people with cerebral palsy (CP).DesignCross-sectional.SettingParticipants were recruited through 8 National Health Service (NHS) trusts, one school, one university and through organisations that provide services for people with disabilities in England.ParticipantsSixty-four, ambulatory young people aged 10–19 years with CP [Gross Motor Function Classification System (GMFCS) levels I–III] participated in this study.Main outcome measureThe IPAQ-SF was administered to participants. Participants were then asked to wear a wGT3X-BT triaxial accelerometer (ActiGraph, Pensacola, FL) for 7 days to objectively assess PA. Time spent in sedentary behaviour, in moderate to vigorous PA (MVPA) and in total PA (TPA) was compared between measures.ResultsYoung people with CP self-reported less time in sedentary behaviour and underestimated the time spent in TPA, when compared to accelerometer measurements. Bland–Altman plots demonstrated poor agreement between the measures for MVPA, with upper and lower 95% limits of agreement of −147 to 148.9 minute. After adjusting for gender and GMFCS level, age was a predictor of the difference between measures for MVPA (P < 0.001) and TPA (P < 0.001).ConclusionsThese findings suggest that the IPAQ-SF is not a valid method of measuring TPA or sedentary behaviour in young people with CP and it is not appropriate for use when assessing an individual's time in MVPA. Therefore, where feasible, an objective measure of PA should be used.Clinical trial registration numberISRCTN90378161.
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.
To establish consensus among adolescents with a physical disability regarding their priorities for enhancing participation in physical activity and help inform the design of future interventions for participation in physical activity.
"Response to commentary on: ‘Measurement of energy expenditure by activity monitors: Is it feasible to measure energy expenditure using tiny portable monitors?’." Physical Therapy Reviews, 19(2), pp. 154–155
Introduction Cerebral 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. Methods This 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. Results The 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. Conclusion Involving 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.
Objectives Determine the risk of incident dementia in adults with cerebral palsy (CP) compared with age, sex and general practice (GP) matched controls. Design Retrospective cohort study. Setting UK GPs linked into the Clinical Practice Research Datalink (CPRD). Participants CPRD data were used to identify adults aged 18 or older with a diagnosis of CP. Each adult with CP was matched to three controls who were matched for age, sex and GP. In total, 1703 adults with CP and 5109 matched controls were included in the analysis. The mean baseline age of participants was 33.30 years (SD: 15.48 years) and 46.8% of the sample were female. Primary outcome New diagnosis of dementia during the follow-up period (earliest date of 1987 to latest date of 2015). Results During the follow-up, 72 people were identified with a new diagnosis of dementia. The overall proportion of people with and without CP who developed dementia was similar (CP: n=19, 1.1%; matched controls n=54, 10.0%). The unadjusted HR suggested that people with CP had an increased hazard of being diagnosed with dementia when compared with matched controls (HR 2.69, 95% CI 1.44 to 5.00). This association was attenuated when CP comorbidities (sensory impairment, intellectual disability and epilepsy) were accounted for (HR 1.92, 95% CI 0.92 to 4.02). Conclusions There was no difference in the proportion of people with CP and matched controls who were diagnosed with dementia during the follow-up. Furthermore, while there was evidence for an increased hazard of dementia among people with CP, the fact that this association was attenuated after controlling for comorbidities indicates that this association may be explained by comorbidities rather than being a direct result of CP. Findings should be interpreted with caution due to the low number of incident cases of dementia.
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