Experiences of health services for adults with cerebral palsy, their support people, and service providers.

AIM: To explore the experiences of health services among adults with cerebral palsy (CP) in Ireland, from the perspectives of adults with CP, their support people, and service providers. METHOD: A qualitative descriptive study design was used. In-depth semi-structured interviews were conducted between March and August 2021 with adults with CP, people who supported them, and health professionals. Thematic analysis was used to evaluate the data. RESULTS: Twenty-one adults with CP, seven support people (family carer[s], spouse or partner, or friend), and 15 service providers participated in the study. Adults had a mean age of 38 years 5 months (range 22-58 years) and were classified in Gross Motor Function Classification System levels I to V. Five themes were identified from the data: (1) access challenges in adult services; (2) knowledge and understanding of CP; (3) support people's role and care burden; (4) communication and interaction in adult services; and (5) health system challenges. CONCLUSION: Adults with CP in Ireland face multiple challenges accessing the health services they need. Services were reported to be inadequate, with limited resources and understanding of CP. Participants highlighted a need for system-level interventions, including enhanced training for health professionals to effectively meet the needs of adults with CP.

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels.

AIM: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. METHOD: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. RESULTS: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. INTERPRETATION: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.

Identifying the top 10 priorities of adolescents with a physical disability regarding participation in physical activity: A Delphi study.

AIM: 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. METHOD: We conducted a national multi-round Delphi study involving adolescents with a physical disability aged 13 to 17 years. Round 1 of the initial survey consisted of open-ended questions. Free-text responses were then analysed thematically, creating items categorized according to the family of participation-related constructs (fPRC). In round 2, participants rated the perceived importance of these items using a 5-point Likert scale. The top 10 priorities were constructed from the highest-ranked items. RESULTS: One hundred and sixteen participants (mean age = 14 years 7 months, range = 13-17 years; 66 males; 58 with cerebral palsy; 43 wheelchair users) completed round 1; 108 items were included in round 2. Fifty-eight items were rated as either 'important' or 'really important' by 70% of participants. The top 10 priorities were rated as important or really important by 82% to 94% of participants with a mean Likert score of 4.40 (range = 4.25-4.63). Seven of the top 10 priorities were related to the environmental context of the fPRC. The other three were related to involvement and the related concept of preference. INTERPRETATION: The priorities identified will help inform future physical activity interventions for adolescents with a physical disability.

Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study.

AIM: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. METHOD: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. RESULTS: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%). INTERPRETATION: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. WHAT THIS PAPER ADDS: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.

Health service use among adults with cerebral palsy: a mixed-methods systematic review.

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.

Use of health services and unmet needs among adults with cerebral palsy in Ireland.

AIM: To describe use of health services, unmet needs relating to health services, and identify factors associated with service use among adults with cerebral palsy (CP) in Ireland. METHOD: Data relating to demographics, secondary diagnoses, current use of health services and assistive devices, and unmet needs for both were obtained on adults with CP from the National Physical and Sensory Disability Database. Logistic regression was used to identify factors associated with service use. RESULTS: A total of 1268 adults with CP were included in this study. Over half were male (56%) and 78% lived with parents, siblings, or other family relatives. Physiotherapy, occupational therapy, and orthotics/prosthetic services were the most commonly used services, used by 57%, 48%, and 35% of the sample respectively. Unmet needs were highest for physiotherapy (23%) and occupational therapy services (13%). Age, sex, living arrangements, and wheelchair use were frequently associated with current service use. INTERPRETATION: Adults with CP used a wide range of health services and unmet needs were reported for all services. The findings highlight a need for planning and development of services to meet their needs, regardless of their age, mobility level, or living arrangements. WHAT THIS PAPER ADDS: Adults with cerebral palsy (CP) in Ireland used a wide range of therapeutic, respite, personal assistance, and support services. Unmet needs were highest for physiotherapy and occupational therapy services. Adults aged 25 years and above were less likely to use therapy services compared with younger adults. Adults living with parents, siblings, or family relatives were less likely to use personal assistance and physiotherapy services.

Acceptability and feasibility of a vestibular nerve stimulation headset protocol in children with cerebral palsy.

BACKGROUND: Research suggests electrical Vestibular Nerve Stimulation (VeNS) may improve balance for people with neurological impairments. This study aimed to assess the feasibility and acceptability of a VeNS headset protocol in children with cerebral palsy (CP). METHODS: Children aged 5-18 years with ambulant CP, their parents, and healthcare professionals were recruited via social media. Children completed a battery of balance tests and wore a sham VeNS headset one hour per day for four weeks. Perspectives on the balance tests and headset were ascertained from children, parents and healthcare professionals using semi-structured interviews. Interview data were analysed thematically. RESULTS: Two families and four healthcare professionals participated. Balance outcome measures were fully completed and deemed acceptable. Adherence with wearing the headset was 89-100% but discomfort with self-adhesive electrodes was reported. Four themes emerged from interview data: headset issues, perceptions about VeNS, the importance of balance, and modifications for future study. CONCLUSIONS: Although the VeNS headset had high acceptability, the volunteer sample was small, potentially suggesting limited interest in VeNS as a treatment for children with CP, or reluctance to trial a 'non-active' headset. Recruitment via clinicians known to the family and use of an 'active' headset may increase participation in future research.

Immigrant parents' experiences of accessing child healthcare services in a host country: A qualitative thematic synthesis.

AIM: To explore voluntary immigrant parents' experiences of child healthcare services in host countries. DESIGN: Thomas and Harden's qualitative thematic synthesis method. DATA SOURCES: Five electronic databases (CINAHL, Medline, PubMed, Psych INFO and Web of Science), were systematically searched from January 2000 - October 2018. REVIEW METHODS: Included studies focused on voluntary migrant/immigrant parents' experiences of child healthcare services. Data were abstracted independently by two authors. Critical Appraisal Skills Programme tools were applied, and qualitative thematic synthesis was performed. FINDINGS: Nine studies were eligible for inclusion. Five descriptive themes were identified: (a) seeking information and reassurance, (b) seeking information from "people like me", (c) comparison between child healthcare services in home and host countries, (d) effective communication, and (e) cultural isolation and perceived discrimination. Three analytical themes emerged: navigation of parenting in a health context in a new environment; trust; and balance. CONCLUSIONS: Many immigrant families reported positive experiences, others felt patronized and disrespected, leading to a lack of trust and making them less willing to access universal child health care. Trusted advocates, who are culturally competent, have a role in helping immigrant parents navigate the child healthcare system and negotiate with healthcare professionals. Health registration of children of immigrants may encourage the uptake of universal healthcare services. More research is required into the specific health needs of voluntary immigrants. IMPACT: Less is known about the experiences of voluntary immigrants than those of refugees/asylum seekers in accessing child healthcare. Navigating health systems is difficult. This can be due to language difficulties, differences in systems of healthcare, and differences in culture/health beliefs. When both parties have some understanding of the others' healthcare practices and beliefs, balance can be found; helping the families to positively compare healthcare and incentivising them to engage in universal child healthcare.

Assisted standing for Duchenne muscular dystrophy.

BACKGROUND: Duchenne muscular dystrophy (DMD) is the most common X-linked neuromuscular disorder. When boys with DMD reach the second decade of life, they lose their ability to walk and become wheelchair dependent. Standing devices and orthoses are considered to be an essential component in the therapy management of DMD. Clinical opinion and research from other neurological conditions highlight the proposed benefits of standing device use, however, its effect within this population is currently unknown. A review of the evidence for the use of standing devices and orthoses is necessary to inform all stakeholders, including people with DMD, clinicians, decision makers and funders, and to guide future research. OBJECTIVES: To assess the effects of standing devices and orthoses on musculoskeletal impairments (such as pain, contracture, scoliosis development and bone density) in boys and men with DMD, and secondarily to determine their effect on quality of life, participation in activities, and patient experience (satisfaction). We also considered any adverse events associated with their use. SEARCH METHODS: We searched the Cochrane Neuromuscular Specialised Register, CENTRAL, MEDLINE, Embase, AMED, PsycINFO, CINAHL Plus, PEDro, and ProQuest Dissertations & Theses Global up to 5 September 2019. We checked references in identified trials, handsearched journal abstracts, and searched trials registries. SELECTION CRITERIA: We planned to include randomised controlled trials (RCTs) and quasi-RCTs of any model of standing device for use in DMD. The control interventions would have been any other comparison group, including no standing device, a different model of standing device, usual care, or an alternative form of assistive weight bearing. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodological procedures. MAIN RESULTS: Although we identified 13 potentially relevant studies, none met the inclusion criteria for this review. AUTHORS' CONCLUSIONS: Since there were no RCTs or quasi-RCTs available to evaluate the effectiveness of standing devices in people with DMD, studies are needed to investigate the effectiveness of standing devices in this population.

Psychometric Evaluation of the 'Evidence Based Practice Competencies Questionnaire - Cerebral Palsy'.

AIM: To understand whether knowledge translation activities are effective, good measurement of practice is required. This study investigated the psychometric properties of a self-report measure of allied health practitioner (AHP) evidence-based behaviors when working with children with cerebral palsy. METHODS: Construct validity and reliability studies were undertaken for the 12-item Evidence Based Practice Competency Questionnaire - Cerebral Palsy (EBP-CQ-CP) using the Consensus-based Standards of Measurement Instruments methods. Factor analysis tested construct validity. Weighted Kappa tested chance-corrected agreement for each item and intra-class correlation coefficients (ICC) the reliability of factors derived in the validity study. RESULTS: In the validity study 259 AHP completed the EBP-CQ-CP on occasion 1, and 228 on occasion 2. In the reliability study 46 AHP completed the questionnaire twice. Exploratory factor analysis determined the EBP-CQ-CP contained two scales: 'communicating evidence based expectations' and 'evidence based assessment practices'. Confirmatory factor analysis using data from the second occasion of assessment supported the findings. Excellent consistency in ratings across factor scores were obtained from 46 pairs of raters: Factor 1, ICC = 0.93 (95% Confidence Interval 0.88-0.96); Factor 2, ICC = 0.94 (95% Confidence Interval 0.88-0.97). CONCLUSIONS: This study supports the interpretation of the EBP-CQ-CP in a clinically meaningful and psychometrically robust manner.

A systematic review of evidence-based assessment practices by allied health practitioners for children with cerebral palsy.

AIM: The routine use of psychometrically robust assessment tools is integral to best practice. This systematic review aims to determine the extent to which evidence-based assessment tools were used by allied health practitioners for children with cerebral palsy (CP). METHOD: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis protocols 2015 was employed. A search strategy applied the free text terms: 'allied health practitioner', 'assessment', and 'cerebral palsy', and related subject headings to seven databases. Included articles reported assessment practices of occupational therapists, physiotherapists, or speech pathologists working with children with CP aged 0 to 18 years, published from the year 2000. RESULTS: Fourteen articles met the inclusion criteria. Eighty-eight assessment tools were reported, of which 23 were in high use. Of these, three tools focused on gross motor function and had acceptable validity for use with children with CP: Gross Motor Function Measure, Gross Motor Function Classification System, and goniometry. Validated tools to assess other activity components, participation, quality of life, and pain were used infrequently or not at all. INTERPRETATION: Allied health practitioners used only a few of the available evidence-based assessment tools. Assessment findings in many areas considered important by children and families were rarely documented using validated assessment tools.

Classifying cerebral palsy: are we nearly there?

BACKGROUND: Cerebral palsy (CP) is the most common cause of physical disability in childhood in developed countries and encompasses a wide range of clinical phenotypes. Classification of CP according to movement disorder or topographical distribution is widely used. However, these classifications are not reliable nor do they accurately predict musculoskeletal pathology. More recently, the Gross Motor Function Classification System (GMFCS) has been introduced and its validity, reliability, and clinical utility have been confirmed. In 2005 it was suggested that children should be described and classified according to the GMFCS in all outcome studies involving children with CP, in the Journal of Pediatric Orthopaedics (JPO). This study aimed to describe utilization of the GMFCS in 3 journals: Journal of Bone and Joint Surgery (JBJS Am), JPO, and Developmental Medicine and Child Neurology (DMCN), over a 7-year period (2005 to 2011), and any relationship to the journal's impact factor. A secondary aim was to establish if differences in methodological quality existed between those studies utilizing GMFCS and those that did not. METHODS: A targeted literature search of the 3 selected journals using the term "cerebral palsy" was conducted using the Medline database. Utilization of the GMFCS was assessed using report of these data in the methods or results section of the retrieved papers. The Methodological Index for Non-Randomized Studies (MINORS) was employed to evaluate the quality of papers published in JPO. RESULTS: One hundred and fifty-four studies met the inclusion criteria and in 85 (68%) the GMFCS was used. Of these, 112 were published in JPO, of which 51 (46%) utilized the GMFCS, compared with 72% for JBJS Am, and 88% for DMCN. In the JPO, utilization of the GMFCS improved from 13% to 80%, over the 7-year study period. CONCLUSIONS: Utilization of the GMFCS has increased rapidly over the past 7 years in the JPO but there is room for further improvement. LEVEL OF EVIDENCE: Not applicable.

Efficacy and acceptability of reduced intensity constraint-induced movement therapy for children aged 9-11 years with hemiplegic cerebral palsy: a pilot study.

OBJECTIVE: Assess efficacy and acceptability of reduced intensity constraint-induced movement therapy (CIMT) in children with cerebral palsy (CP). METHODS: Single-subject research design and semi-structured interviews. Children (9-11y) with hemiplegia underwent five baseline assessments followed by two weeks CIMT. Six further assessments were performed during treatment and follow-up phases. The primary outcome was the Melbourne Assessment of Unilateral Upper Limb Function (MUUL). Quantitative data were analysed using standard single-subject methods and qualitative data by thematic analysis. RESULTS: Four of the seven participants demonstrated statistically significant improvements in MUUL (3-11%, p < .05). Two participants achieved significant improvements in active range of motion but strength and tone remained largely unchanged. Qualitative interviews highlighted limitations of the restraint, importance of family involvement, and coordination of treatment with education. CONCLUSIONS: Reduced intensity CIMT may be effective for some children in this population; however it is not suitable for all children with hemiplegia.

Social participation in adults with cerebral palsy: a systematic review of the evidence-base.

PURPOSE: To identify and synthesise the current evidence on social participation in adults with cerebral palsy (CP). METHODS: Four databases (PubMed, CINAHL Plus, PsycINFO, Web of Science) were systematically searched between December 2021 and February 2022. Pre-specified eligibility criteria were applied to all identified studies resulting in the inclusion of 16 articles. Data extraction was performed using a standardised tool and quality appraisal was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis approach was taken for data analysis. RESULTS: The 16 included studies were rated as high (n = 11) and medium quality (n = 5). Numbers of participants included in the studies ranged from 7 to 335. Definitions of social participation were discussed. Common themes were identified: the impact of home and work environments on social participation, the importance of age-appropriate support and interventions, and the impact of limited autonomy on social participation. CONCLUSIONS: Adults with CP experience limited social participation due to lack of appropriate support in childhood, issues across the lifespan including physical limitations when ageing, and factors such as societal expectations and inaccessible environments which limit opportunities for autonomy. Social participation may be improved by supporting families to provide opportunities in childhood, providing timely interventions, and by enhancing autonomy.

Considering the support needs of the wider family, in order to build a supportive family environment in childhood, could improve social participation opportunities for individuals with cerebral palsy (CP) in adulthood.Social participation in adulthood may be improved by encouraging independence and autonomy in childhood and adolescence.Taking a lifespan approach to services for individuals with CP could improve social participation and better prepare them for the challenges of adulthood.

Do supports and barriers to routine clinical assessment for children with cerebral palsy change over time? A mixed methods study.

PURPOSE: To understand how healthcare professionals' perceptions of supports and barriers to routine clinical assessment, for children aged 3-18 years with cerebral palsy, evolved in the presence of a knowledge translation intervention. METHODS: A prospective longitudinal mixed-methods study was completed. The intervention comprised knowledge brokers, an e-evidence library, locally provided education and embedding routine clinical assessment in practice. Healthcare professionals from five disability services completed the Supports and Barriers Questionnaire and focus groups at baseline, 6, 12 and 24 months. Quantitative data were analysed descriptively and qualitative data using longitudinal framework analysis. RESULTS: Questionnaire ratings indicated participants felt supported in implementing routine assessment over time. Subtle differences emerged from the longitudinal framework analysis. Participants shifted from 'adopting' to 'embedding' and 'maintaining' routine assessment. Integration of assessment was impacted by a new national disability funding model. Participants highlighted the need to maintain skills and for unambiguous, sustained communication between the organisation, clients, and stakeholders. If, how and why families engaged with routine assessment developed over time. CONCLUSIONS: After an initial focus on pragmatic implementation issues, over time healthcare professionals began to reflect more on the complexities of children and families' engagement with assessment and the impact on the therapist-child-family relationship. Trial registration: This trial was not a controlled healthcare intervention and was registered retrospectively: ACTRN12616001616460. The protocol of the trial was published in 2015.IMPLICATIONS FOR REHABILITATIONHealthcare professionals can be supported over time to embed routine clinical assessment using multifaceted knowledge translation interventions.It takes time and ongoing support for healthcare professionals to embed, maintain and begin to adapt the routine clinical assessment to fit with policy, organisational context and the needs and wishes of children and families.Understanding and tailoring knowledge translation approaches to the policy context are essential.Even in the context of major policy shifts, it is possible to harness the commitment of organisations and professionals to improve their services in line with evidence-based approaches.

Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the United Kingdom and Ireland.

PURPOSE: The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. METHODS: A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. RESULTS: Participants (n = 162) were aged 18-74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. CONCLUSION: Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP.Implications of rehabilitationAdults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed.Adults were not satisfied with the availability or quality of physiotherapy services received.Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed.There is a need to develop physiotherapy services from a life-span perspective for adults living with CP.

Passive range of motion in a population-based sample of children with spastic cerebral palsy who walk.

While passive range of motion (PROM) is commonly used to inform decisions on therapeutic management, knowledge of PROM of children with spastic cerebral palsy (CP) is limited. A population-based sample of 178 children with spastic CP (110 male; unilateral, n = 94; bilateral, n = 84; age range 4-17 years) and 68 typically developing children (24 male; age range 4-17 years) were recruited to the study. All children were able to walk a minimum of 10 m over a straight flat course, with or without assistive devices. Gross Motor Function Classification System (GMFCS) levels of participants with CP were: Level I = 55, Level II = 88, Level III = 21, and Level IV = 14. Ankle dorsiflexion, knee extension, popliteal angle, hip abduction, hip internal rotation, and hip external rotation were measured using a goniometer. The results indicate that the children with CP had significantly reduced PROM compared to the children with typical development. Children with CP demonstrated reduced length in the hamstrings, hip adductor, iliopsoas and gastrocnemius-soleus musculature, and contracture at the knee joint. Among children with CP, there were significant reductions in range with increasing functional limitation (higher GMFCS level) and variations based on unilateral or bilateral involvement. This was particularly the case for the hamstrings and hip adductor musculature, where PROM varied considerably across GMFCS Levels I to IV.

Implementing public involvement standards in cerebral palsy register research.

Background: In 2018, the National Institute for Health Research launched Draft Standards for Public Involvement in Research. The Northern Ireland Cerebral Palsy Register (NICPR) was competitively selected as a "test-bed" project to pilot the Draft Standards over a one-year period. Aim: This perspective paper aims to describe the NICPR's experience of piloting the Draft Standards for Public Involvement in Research, highlighting successes and challenges. Method: Three of the six Draft Standards were piloted from April 2018 to April 2019: Standard 2 "working together", Standard 4 "communications" and Standard 5, "impact". Results: Implementation of Standard 2 resulted in formation of a dedicated Public Involvement Group. Standard 4 was implemented by revision of the NICPR's Privacy Notice and development of the NICPR website. Standard 5 was not implemented during the test-bed pilot period. Discussion: Benefits of use of the Draft Standards in cerebral palsy register research included development of relationships, improving quality, accessibility and relevance of NICPR materials, increasing skills and confidence, networking opportunities, advocating for others and feeling empowered to shape cerebral palsy research. Challenges included administrative issues, absence of dedicated and sustained funding, limitations in the availability and applicability of public involvement training and the time required for meaningful public involvement. Conclusions: Standards for Public Involvement provide a useful framework for structuring and embedding meaningful public involvement. Sustained, authentic public involvement in cerebral palsy register research ensures that people affected by the condition are empowered to engage, inform, develop and lead research that meets their needs.