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Aim: To describe the relationships between outpatient encounters, continuity of care, and unplanned hospital care in children/young people with cerebral palsy (CP). Method: In this population‐based data‐linkage cohort study we included children/young people with CP identified in the New South Wales/Australian Capital Territory CP Register (birth years 1994–2018). We measured the frequency of outpatient encounters and unplanned hospital care, defined as presentations to emergency departments and/or urgent hospital admissions (2015–2020). Continuity of outpatient care was measured using the Usual Provider of Care Index (UPCI). Results: Of 3267 children/young people with CP, most (n = 2738, 83.8%, 57.6% male) had one or more outpatient encounters (123 463 total encounters, median six outpatient encounters per year during childhood). High UPCI was more common in children/young people with mild CP (Gross Motor Function Classification System levels I–III, with no epilepsy or no intellectual disability), residing in metropolitan and areas of least socioeconomic disadvantage. Low UPCI was associated with four or more emergency department presentations (adjusted odds ratio [aOR] 2.34; 95% confidence interval [CI] 1.71–3.19) and one or more urgent hospital admissions (aOR 2.02; 95% CI 1.57–2.61). Interpretation: Children/young people with CP require frequent outpatient services. Improving continuity of care, particularly for those residing in regional/remote areas, may decrease need for unplanned hospital care. What this paper adds: Many children with cerebral palsy use multiple and frequent outpatient services.Better continuity of care is associated with living in metropolitan and less socioeconomically disadvantaged areas.Outpatient service utilization reduces at the time of transition to adult services.High outpatient utilization is associated with unplanned hospital care.Decreased continuity of care is associated with unplanned hospital care. [ABSTRACT FROM AUTHOR]

Aim: To characterize motor disorders in children and young people with cerebral palsy (CP). Method: This was a cross‐sectional study of 582 children and young people with CP (mean age 9 years 7 months; range 11 months–19 years 9 months; standard deviation 4 years 11 months; 340 males) attending a rehabilitation clinic at a specialized children's hospital (May 2018–March 2020). Data on motor disorders, topography, functional classifications, and non‐motor features, such as epilepsy, intellectual disability, and sensory impairments, were collected using the Australian Cerebral Palsy Register CP Description Form. Results: Fifty‐five per cent (n = 321) of children and young people with CP presented with multiple motor disorders, often affecting the same limb(s). The most common motor disorders were spasticity and dystonia (50%), spasticity only (36%), and dystonia only (6%), but 18 different combinations were identified, including choreoathetosis, ataxia, and generalized hypotonia with increased reflexes. Children with spasticity only had less severe functional deficits (p < 0.001) and lower rates of associated intellectual disability (p < 0.01) and epilepsy (p < 0.001) than those with both spasticity and dystonia. Interpretation: Multiple motor disorders in children and young people with CP are common and associated with more severe functional impairment. Accurate assessment of motor disorders is essential to guide prognosis and ensure personalized evidence‐based interventions. What this paper adds: More than half of children and young people with cerebral palsy presented with multiple motor disorders.Dystonia was identified in 60% of study participants.Dystonia was associated with more severe functional impairments and rates of non‐motor features. [ABSTRACT FROM AUTHOR]

Background: Administrative health data, such as hospital admission data, are often used in research to identify children/young people with cerebral palsy (CP). Objectives: To compare sociodemographic, clinical details and mortality of children/young people identified as having CP in either a CP population registry or hospital admission data. Methods: We identified two cohorts of children/young people (birth years 2001–2010, age at study end or death 2 months to 19 years 6 months) with a diagnosis of CP from either (i) the New South Wales (NSW)/Australian Capital Territory (ACT) CP Register or (ii) NSW hospital admission data (2001–2020). Using record linkage, these data sources were linked to each other and NSW Death, Perinatal, and Disability datasets. We determined the sensitivity and positive predictive value (PPV) of CP diagnosis in hospital admission data compared with the NSW/ACT CP Register (gold standard). We then compared the sociodemographic and clinical characteristics and mortality of the two cohorts available through record linkage using standardised mean difference (SMD). Results: There were 1598 children/young people with CP in the NSW/ACT CP Register and 732–2439 children/young people with CP in hospital admission data, depending on the case definition used. The sensitivity of hospital admission data for diagnosis of CP ranged from 0.40–0.74 and PPV 0.47–0.73. Compared with children/young people with CP identified in the NSW/ACT CP Register, a greater proportion of those identified in hospital admission data (one or more admissions with G80 case definition) were older, lived in major cities, had comorbidities including epilepsy, gastrostomy use, intellectual disability and autism, and died during the study period (SMD > 0.1). Conclusions: Sociodemographic and clinical characteristics differ between cohorts of children/young people with CP identified using a CP register or hospital admission data. Those identified in hospital admission data have higher rates of comorbidities and death, suggesting some may have progressive conditions and not CP. These differences should be considered when planning and interpreting research using various data sources. [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]

The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate out-of-pocket costs for people with CP and their families by age and gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used with qualitative approaches to analyse open-ended questions. A CP-specific out-of-pocket costs survey was co-designed with people with lived experience. Adults with CP and carers were recruited from Australian population-based CP Registers and via social media. Sociodemographic variables were analysed descriptively and median (IQR) expenses for health, assistive technology, personal care, housing, occupation, transport, leisure, respite and holidays, by age (0–6; 7–17; 18 years +) and gross motor function [GMFCS level I-II vs III-V] were calculated. The In Charge Financial Distress/Financial Wellbeing Scale measured financial distress. Regression analyses were conducted to investigate costs and financial distress. Additional out-of-pocket costs itemised in open-ended questions were charted. Comments were thematically analysed using the framework approach. 271 surveys were completed for children 0–6 years (n = 47), children/adolescents 7–17 years (n = 124) and adults (n = 100). 94% of participants had out-of-pocket costs associated with CP, with an overall annual median of $4,460 Australian dollars (IQR $11,955). After controlling for income, private insurance and disability funding, the GMFCS III-V group had costs two times higher than the GMFCS I-II group (2.01; 95% CI 1.15–3.51). Age was not significantly associated with costs. 36% of participants had high to overwhelming financial distress; this was not associated with age or GMFCS level after controlling for financial factors. Families had several additional disability costs. Open-ended responses revealed experiences of financial concern were influenced by funding scheme experiences, reduced income, uncertainty, access to support networks and an inability to afford CP-related costs. Cost estimates and financial distress indicators should inform policy, funding and clinical decisions when planning interventions to support people with CP and their families. [ABSTRACT FROM AUTHOR]

Introduction: The goal of this study was to understand individuals with cerebral palsy (CP) and their family's attitudes and preferences to genomic research, including international data sharing and biobanking. Methods: Individuals with CP and their family members were invited to participate in the web-based survey via email (NSW/ACT CP Register) or via posts on social media by Cerebral Palsy Alliance, CP Research Network, and CP Now. Survey responses included yes/no/unsure, multiple choices, and Likert scales. Fisher's exact and χ2 tests were used to assess if there were significant differences between subgroups. Results: Individuals with CP and their families (n = 145) were willing to participate in genomics research (68%), data sharing (82%), and biobanking efforts (75%). This willingness to participate was associated with completion of tertiary education, previous genetic testing experience, overall higher genomic awareness, and trust in international researchers. The survey respondents also expressed ongoing communication and diverse information needs regarding the use of their samples and data. Major concerns were associated with privacy and data security. Discussion: The success of genomic research and international data sharing efforts in CP are contingent upon broad support and recruitment. Ongoing consultation and engagement of individuals with CP and their families will facilitate trust and promote increased awareness of genomics in CP that may in turn maximize participant uptake and recruitment. [ABSTRACT FROM AUTHOR]

Proportions of cases of cerebral palsy (CP) with congenital anomalies recorded in Australian CP registers range from 15% to 40%. The anomalies seen in CP are extremely variable. We have identified that CP registers often do not have quality data on congenital anomalies, necessitating linkage with congenital anomaly registers. However, a lack of unified processes and definitions in congenital anomaly registers and data collections means that linkages are complex, need to be carefully planned, and limitations acknowledged. Historically in CP research, congenital anomalies have been classified by International Classification of Disease codes, then combined into brain and other major and minor anomalies. Systems have been developed to classify congenital anomalies into aetiologically related groups, but such a classification has yet to be trialled in CP. It is anticipated that primary prevention of a small proportion of cases of CP is possible through the primary prevention of congenital anomalies, especially those due to teratogens. Owing to the anticipated low prevalence of each subgroup, global collaboration will be required to further these lines of enquiry. [ABSTRACT FROM AUTHOR]

Aim: To determine if families of children with cerebral palsy living in Australia move to less remote areas between birth and 5 years.Method: Children on the Australian Cerebral Palsy Register (n=3399) born 1996 to 2005, were assigned a remoteness value for family residence at birth and 5 years using a modification of the Australian Statistical Geography Standard. Each value at birth was subtracted from the value at 5 years yielding a positive difference if they moved more remotely, negative difference if they moved less remotely and a value of zero if they did not move or moved to an equally remote residence.Results: The small net increase in remoteness across this cohort was non-significant (p=0.43). Fifty-seven per cent of families changed postcode but only 20% changed remoteness, 11% more remotely, and 9% less remotely. There was a small trend for families with a child with more impaired gross motor function (Gross Motor Function Classification System levels IV and V) to move to a less remote area.Interpretation: This cohort of families with children with cerebral palsy did not appear to move to less remote areas by age 5 years. Remoteness at birth and level of gross motor function seem to have little effect. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To examine the antecedents of cerebral palsy and of perinatal death in singletons born at or after 35 weeks of gestation. METHODS: From a total population of singletons born at or after 35 weeks of gestation, we identified 494 with cerebral palsy and 508 neonates in a matched control group, 100 neonatal deaths, and 73 intrapartum stillbirths (all deaths in selected birth years). Neonatal death and cerebral palsy were categorized as without encephalopathy, after neonatal encephalopathy, or after neonatal encephalopathy considered hypoxic--ischemic. We examined the contribution of potentially asphyxial birth events, inflammation, fetal growth restriction, and birth defects recognized by age 6 years to each of these outcomes and to intrapartum stillbirths. RESULTS: The odds of total cerebral palsy after potentially asphyxial birth events or inflammation were modestly increased (odds ratio [OR] 1.9, 95% confidence interval [CI] 1.1-3.2 and OR 2.2, 95% CI 1.0-4.2, respectively). However, potentially asphyxial birth events occurred in 34% of intrapartum stillbirths and 21.6% of cerebral palsy after hypoxic--ischemic encephalopathy. Inflammatory markers occurred in 13.9% and 11.9% of these outcomes, respectively. Growth restriction contributed significantly to all poor outcome groups. Birth defects were recognized in 5.5% of neonates in the control group compared with 60% of neonatal deaths and more than half of cases of cerebral palsy without hypoxic--ischemic encephalopathy. In children with cerebral palsy, a potentially asphyxial birth event, inflammation, or both were experienced by 12.6%, whereas growth restriction, a birth defect, or both were experienced by 48.6% (P<.001). CONCLUSION: Fetal growth restriction and birth defects recognized by age 6 years were more substantial contributors to cerebral palsy and neonatal death than potentially asphyxial birth events and inflammation. [ABSTRACT FROM AUTHOR]

Aim: To critically assess and develop recommendations for professional development (PD) for occupational therapists in a multisite specialist cerebral palsy occupational therapy service. Method: Quality improvement project based on principles of participatory action research: audit of PD resources/activity; stakeholder consultations and literature review. Results: The PD program goal, resources, strategies, activities and evaluations conducted at the centre were identified and described. Areas for improvement were identified by critically considering the PD program in the context of reviewed literature. There was an assumption that personal change through PD would help attain the organisational goal of clinically competent practitioners who use evidence-based practice in a family-centred context. Recommendations: Future PD plans and evaluations need to explicitly address this assumption. The use of structured reflection and the ‘clinical reasoning’ conceptual framework was recommended as one way to help personal change from PD to have workplace impact. This project provides a precedent and guide to occupational therapy PD planners regarding a whole-of-organisation approach to developing and maintaining competence through PD. [ABSTRACT FROM AUTHOR]

Aim Method Results Interpretation To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP).We conducted a cross‐sectional study of parents and carers of children with CP attending a specialist hospital clinic between July and September 2022. Unmet social needs were self‐identified using a survey, guided by the WE CARE survey instrument and adapted to the local context. Sociodemographic and clinical data were obtained from medical records. We performed descriptive analysis of participants' unmet social needs, sociodemographic factors, and clinical factors, and examined for associations using a χ2 test and logistic regression.A total of 105 parents and carers completed the survey. Of these, 68 (64.8%) reported one or more unmet social need, with 24 (22.9%) reporting three or more unmet needs. A higher number (three or more) of unmet needs was associated with Gross Motor Function Classification System levels IV and V (odds ratio [OR] = 3.77, 95% confidence interval [CI] = 1.44–9.86) and intellectual disability (OR = 4.63, 95% CI = 1.61–13.31), but were not significant when corrected for neighbourhood socioeconomic disadvantage. The greatest socioeconomic disadvantage was associated with housing concerns (p = 0.002), food (p = 0.026), and financial insecurity (p = 0.02).Unmet social needs are experienced by most families of children with CP. This study highlights the importance of systematic pathways to identify and address unmet social needs. [ABSTRACT FROM AUTHOR]

Background: Likely duration of survival of children described as having cerebral palsy is of considerable interest to individuals with cerebral palsy, their families, carers, health professionals, health economists and insurers. The aim of this paper is to describe patterns of survival and mortality to the sixth decade in a geographically defined population of people with cerebral palsy stratified according to the clinical description of their impairments in early childhood.Methods: Identifiers of persons born in Western Australia 1956-2011, registered with cerebral palsy on the Western Australian Register of Developmental Anomalies and surviving at least 12 months, were linked to the Australian National Death Index in December 2014. Patterns of mortality were investigated using survival analysis methods.Results: Of 3185 eligible persons, 436 (13.7%) had died. Of that sample the 22% with the mildest impairment had survival patterns similar to the general population. Mortality increased with increasing severity of impairment. Of 349 (75%) with available cause of death data, 58.6% were attributed to respiratory causes, including 171 (49%) to pneumonia at a mean age of 14.6 (sd 13.4) years of which 77 (45%) were attributed to aspiration. For the most severely impaired, early childhood mortality increased in succeeding decades of birth cohorts from 1950s to 1990 with 20% dying by 4 years of age in the 1981-1990 birth cohort; it then decreased for subsequent birth cohorts, 20% mortality not being attained until 15 years of age. However by 20 years of age mortality of the most severely impaired born in the 1991-2000 birth cohort exceeded that of all other birth cohorts. Remaining life expectancies by age to 50 years have been estimated for two strata with more severe impairments.Conclusion: For 22% of individuals with cerebral palsy with mild impairment survival to 58 years is similar to that of the general population. Since 1990 mortality for those with severe cerebral palsy in Western Australia has tended to shift from childhood to early adulthood. [ABSTRACT FROM AUTHOR]