Search

Aim: To provide a description of cerebral palsy (CP) registers globally, identify which aim to report on CP epidemiology, and report similarities and differences across topics of importance for the sustainability and collaboration between registers. Method: Representatives of all known CP registers globally (n = 57) were invited to participate. The online survey included 68 questions across aims, methodologies, output/impact, and stakeholder involvement. Responses were analysed using descriptive statistics. Results: Forty‐five registers participated, including three register networks. Twenty were newly established or under development, including 12 in low‐ and middle‐income countries (LMICs). An epidemiological aim was reported by 91% of registers. Funding is received by 85% of registers, most often from not‐for‐profit organizations. CP definitions are comparable across registers. While the minimum data set of a register network is used by most registers, only 25% of identified items are collected by all three register networks. Ninety per cent of registers measure research activities/output, and 64% measure research impact. People with lived experience are involved in 62% of registers. Interpretation: There has been a recent surge in CP registers globally, particularly in LMICs, which will improve understanding of CP epidemiology. Ongoing efforts to address identified methodological differences are essential to validate comparison of results and support register collaboration. What this paper adds: Cerebral palsy (CP) registers represent an increasing number of regions, including low‐ and middle‐income, worldwide.Most registers collect the minimum data set of a CP register network.Research activities/output and impact are measured by most registers.The majority of registers involve people with lived experience in operation or research. [ABSTRACT FROM AUTHOR]

Mindfulness-Based Stress Reduction (MBSR) has not yet been evaluated for people with cerebral palsy (CP). The aims of this randomised control trial were to investigate whether a modified telehealth MBSR program could improve mindfulness and reduce depression, anxiety, and emotion regulation difficulties among adults with CP with elevated anxiety and/or emotional regulation difficulties. Participants (n = 31) with elevated anxiety and/or emotion regulation difficulties and no/mild intellectual impairment were randomised to a modified telehealth MBSR program (90 min weekly, 9 weeks) group or a wait-list group. Measurements were collected prior to (T1), after (T2), and 8 weeks post-intervention (T3). The primary outcome was the mean between-group difference in the change in Cognitive and Affective Mindfulness Scale-R (CAMS-R) scores in T1–T2. The secondary outcomes included mean within-group differences over time for the CAMS-R total scores, Depression Anxiety and Stress Scale—21 subscales, and Difficulties in Emotion Regulation Scale (DERS) total t-score. We found no statistically significant between-group difference in mean change in mindfulness scores for T1–T2 (primary outcome). Secondary outcomes: The MBSR intervention group had improved CAMS-R scores with respect to T1–T2 and T1–T3; improved mean scores for Depression and Stress subscales for T1–T2; and improved DERS t-scores for T1–T2 and T1–T3. In conclusion, this study found no significant between-group difference for the primary outcome of mindfulness. The MBSR program was successfully modified for adults with CP and was effective in improving depression, stress, and emotion regulation. ACTRN12621000960853 [ABSTRACT FROM AUTHOR]

Aim: To provide a birds-eye view of the trends of cerebral palsy (CP) for Australian Aboriginal and Torres Strait Islander children and young adults. Method: Data were obtained for this population-based observational study from the Australian Cerebral Palsy Register (ACPR), birth years 1995 to 2014. The Indigenous status of children was classified by maternal Aboriginal and Torres Strait Islander or non-Indigenous status. Descriptive statistics were calculated for socio-demographic and clinical characteristics. Prenatal/perinatal and post-neonatal birth prevalence was calculated per 1000 live births and per 10 000 live births respectively, and Poisson regression used to assess trends. Results: Data from the ACPR were available for 514 Aboriginal and Torres Strait Islander individuals with CP. Most children could walk independently (56%) and lived in urban or regional areas (72%). One in five children lived in socioeconomically disadvantaged remote/very remote areas. The birth prevalence of prenatal/perinatal CP declined after the mid-2000s from a high of 4.8 (95% confidence interval 3.2-7.0) to 1.9 per 1000 live births (95% confidence interval 1.1-3.2) (2013-2014), with marked declines observed for term births and teenage mothers. Interpretation: The birth prevalence of CP in Aboriginal and Torres Strait Islander children in Australia declined between the mid-2000s and 2013 to 2014. This birds-eye view provides key stakeholders with new knowledge to advocate for sustainable funding for accessible, culturally safe, antenatal and CP services. [ABSTRACT FROM AUTHOR]

Introduction: The Kids Guided Personalised Service (KidsGPS) is an integrated model of care coordination for children and young people (CYP) living with medical complexity. After successful implementation in an urban setting, the model of care will be rolled-out at scale to four rural regions in New South Wales, Australia to establish RuralKidsGPS. This paper describes the approach and methods for the outcome and implementation evaluation of RuralKidsGPS. Description: The evaluation aims to assess health, economic and implementation outcomes and processes whilst identifying barriers and enablers to inform future rollouts. Measures of health service utilisation (primary outcome), child health related quality of life and parent/carer experiences will be assessed. The implementation evaluation will occur alongside the outcomes evaluation and is underpinned by the Consolidated Framework for Implementation Research and informed by validated quantitative measures and qualitative interviews with patients, families, healthcare providers and service managers. An economic analysis will determine incremental cost effectiveness ratios for the new model of care using health service utilisation data. Conclusion: RuralKidsGPS, if effective, has the potential to improve equity of access to integrated care for CYP and their families and this protocol may inform other evaluations of similar models of care delivered at scale. [ABSTRACT FROM AUTHOR]

Rationale, Aims and Objectives: Social challenges are common for young adults with autism spectrum disorder (ASD) and/or mild intellectual impairment, yet few evidence‐based interventions exist to address these challenges. PEERS®, the Program for the Education and Enrichment of Relational Skills, has been shown to be effective in improving the social skills of young adults with ASD; however, it requires a significant time commitment for parents of young adults. As such, this mixed‐methods study aimed to investigate the experiences of young adults, parents and PEERS® social coaches participating in an adapted PEERS® program, and to evaluate its acceptability and efficacy. Method: Young adults with ASD and/or mild intellectual impairment participated in a 16‐week PEERS® program. Parents and PEERS® social coaches attended fewer, condensed sessions, where they learnt program content to support the young adults' social skill development at home and in the community. Focus groups were conducted post intervention. Quantitative pre−post assessment using the Social and Emotional Loneliness Scale for Adults, the Test of Young Adult Social Skills Knowledge, and Quality of Socialization Questionnaire‐Young Adults was completed by young adults. The Social Responsiveness Scale Second Edition was completed by young adults and their parents. Result: Qualitative results revealed that, taken together, young adults, parents and PEERS® social coaches all felt that the adapted PEERS® program was 'challenging, but worth it'. The program was acceptable with a 93% attendance rate across all sessions. Whilst young adults' perceptions of their own social functioning did not change post‐intervention, their knowledge of social skills content improved significantly (p < 0.05). Parent perceptions of young adults' social responsiveness also improved (p < 0.05). Conclusions: Social skill knowledge, social responsiveness, and social engagement improved significantly following the completion of the adapted PEERS® program. It was deemed acceptable and worthwhile by young adults, their parents and PEERS® social coaches. [ABSTRACT FROM AUTHOR]

Aim: To describe post‐neonatally acquired (PNN) cerebral palsy (CP) in terms of temporal trends in prevalence, clinical and sociodemographic profiles, known causes and associations between causes, and sociodemographic variables. Method: Numerator data, a count of children with PNN‐CP confirmed at 5 years of age (n = 523), was drawn from two Australian state CP registers (birth years 1973–2012). Poisson regression was used to investigate temporal trends in the prevalence of PNN‐CP by 5‐year intervals, calculated per 10 000 live births. Using data from all state and territory Australian CP registers (n = 469), distributions of clinical characteristics, PNN‐CP causes, and sociodemographic factors were tabulated (birth years 1995–2012). χ2 and logistic regression analyses were used to assess associations between sociodemographic profile, Australian reference data, and known causes. Results: A significant temporal decline in PNN‐CP in Victoria (p = 0.047) and Western Australia (p = 0.033) was observed. The most common proximal causes of PNN‐CP were cerebrovascular accidents (34%, n = 158), infection (25%, n = 117), and non‐accidental injuries (12%, n = 58). Children born to teenage mothers, Aboriginal and/or Torres Strait Islander mothers, or children born in remote areas were over‐represented in this cohort compared with reference data (all p ≤ 0.001). Infectious causes were strongly associated with teenage motherhood (odds ratio 3.0 [95% confidence interval 1.1–8.2], p = 0.028) and remote living (odds ratio 4.5 [95% confidence interval 2.0–10.2], p < 0.001). Interpretation: Although prevalence of PNN‐CP has declined, the over‐representation of priority populations, and the relative severity of a condition that is largely preventable, suggest the need for more specific primary preventive measures and support. What this paper adds: Prevalence of post‐neonatally acquired (PNN) cerebral palsy (CP) in Australia significantly declined between 1973 and 2012.Cerebrovascular accidents are the most common proximal cause of PNN‐CP.Children born in remote areas are at greater risk of PNN‐CP. [ABSTRACT FROM AUTHOR]

Abbreviations CDE Common data element; ICPGC International Cerebral Palsy Genomics Consortium; MDS Minimum data set; NINDS National Institute of Neurological Disorders and Stroke; PWG Phenotype Working Group Cerebral palsy (CP) is a clinically heterogeneous condition of movement, posture, and motor function attributed to a non-progressive and permanent disturbance to the fetal or infant brain.1 It is well recognized that the causal pathways to CP are complex and, in many cases, undefined. METHOD The development of the ICPGC CDEs for genomic studies of CP consisted of three phases: (1) a scoping review of the literature and development of the draft CDEs; (2) a modified, three-round Delphi process to achieve consensus on CDEs important for genomic studies of CP and to assign each data element to a hierarchal level based on their importance; and (3) development of the MDS (Figure S1). The data elements were scored against two criteria initially posited by the ICPGC-PWG as key requirements in the development of these CDEs: (1) is the data element important for genomic studies of CP; and (2) does the data element have an internationally standardized collection method, reporting variables or ontologies. [Extracted from the article]

Aim: To investigate temporal trends in birth prevalence, disability severity, and motor type for singletons with prenatal or perinatally acquired cerebral palsy (CP). Method: Numerator data, number of children with CP born a singleton between 1995 and 2014, confirmed at 5 years of age, were drawn from three state registers with population‐level ascertainment. Birth prevalence estimates and 95% confidence intervals (CI) were calculated per 1000 singleton live births for the three states combined, overall, by gestational age group, by dichotomized disability severity, and spastic laterality. Poisson regression models were used to analyse trends. Using data from all eight registers, trends in the proportional distribution of CP subtypes overall and stratified by gestational age were examined. Results: Birth prevalence of CP declined from 1.8 (95% CI 1.6–2.0) in 1995 to 1996 to 1.2 (95% CI 1.1–1.4) in 2013 to 2014 (average 5% per 2‐year epoch, p < 0.001). Declines in birth prevalence were observed across all gestational age groups with the largest decline in children born at <28 weeks (average 8% per epoch, p < 0.001). Prevalence of moderate‐severe disability declined for children born at <28 and ≥37 weeks (average 11% and 7% per epoch respectively, p < 0.001). The proportions of bilateral spastic CP declined (p < 0.001) at <28 weeks (p = 0.014) and ≥37 weeks (p < 0.001). The proportion of children with dyskinesia increased (28–31 weeks: p = 0.021, 32–36 weeks: p = 0.001, and ≥37 weeks: p < 0.001). Interpretation: Birth prevalence of CP and moderate‐severe disability (<28 and ≥37 weeks) declined in Australian singletons between 1995 and 2014, reflecting changes in prenatal and perinatal care over time. What this paper adds: Declines in birth prevalence of prenatal or perinatally acquired cerebral palsy were observed for singletons born in Australia between 1995 and 2014.These declines were evident across all gestational age groups.Declines in birth prevalence of moderate‐severe disability were observed for children born at <28 weeks and ≥37 weeks. What this paper adds: Declines in birth prevalence of prenatal or perinatally acquired cerebral palsy were observed for singletons born in Australia between 1995 and 2014.These declines were evident across all gestational age groups.Declines in birth prevalence of moderate‐severe disability were observed for children born at <28 weeks and ≥37 weeks. This original article is commented on by Villamor on pages 1054–1055 of this issue. [ABSTRACT FROM AUTHOR]