Partnering Early to Provide for Infants At Risk of Cerebral Palsy (PEPI ARC): protocol for a feasibility study of a regional hub for early detection of cerebral palsy in Aotearoa New Zealand.

Introduction: Cerebral palsy (CP) can now be diagnosed in infants with identified CP risk factors as early as three months of age; however, many barriers prevent equitable access to early detection pathways. The "Partnering Early to Provide for Infants At Risk of Cerebral Palsy" feasibility study (PEPI ARC) seeks to trial a new approach to decrease inequitable health service in Aotearoa New Zealand for high-risk infants and their families. PEPI ARC incorporates face-to-face clinics, an in-person and virtual Hub, and the use of telehealth to enable flexible access to CP assessments and support for health professionals in early CP detection. Methods and analysis: A non-randomised feasibility study was conducted from a tertiary Neonatal Intensive Care Unit (NICU) in Wellington and included seven regional referral centres, servicing nearly 30% of the total population in New Zealand (NZ). The families of infants with a high risk of neurodevelopmental impairment and health professionals interacting with the Hub were invited to participate. Mixed methods were used to evaluate the (i) equitable implementation of an early detection pathway, (ii) acceptability, (iii) demand among families and health professionals, (iv) efficacy in relation to reducing the age of receipt of CP diagnosis, and (v) the experiences around communication and information sharing. Ethics and dissemination: The NZ Health and Disability Ethics Committee approved this study (HDEC: 2022 FULL 13434). The findings will be disseminated in peer-reviewed journals, in conference presentations, and via professional networks. Clinical trial registration: Australian New Zealand Clinical Trials Registry: ACTRN12623000600640.

More than just having fun! Understanding the experience of involvement in physical activity of adolescents living with cerebral palsy.

Purpose: To explore the experiences of involvement of adolescents living with cerebral palsy, and their parents, while participating in physical activity. Understanding involvement in physical activity may be used to guide future participation.Methods: Eight adolescents (mean age 13 years 11 months, SD 1 year 6 months) with cerebral palsy participated in a New Zealand-based high-level mobility programme (HLMP) focused on running skills, twice per week for 12 weeks. The adolescents and 12 parents were interviewed before, after the 12 weeks and 9-months following the HLMP. Guided by interpretative description, 38 interviews were coded, analysed, and interpreted.Results: Four themes were: "Turning up is not enough" ("There's no point being there if you're not involved"); "In it all the way", "Changes on a dime", and "What works for me." Perceptions of involvement varied between adolescents and parents. Being "very involved" related to high levels of focus, concentration, effort; but not always enjoyment.Conclusions: Focusing on enjoyment as the key experience of involvement understates the complexity and dynamic nature of involvement. "Being involved" is not always easy and may not mean the absence of discomfort or effort. Optimising the individuals' involvement continuum during physical activity may be essential to promote lifelong participation.IMPLICATIONS FOR REHABILITATIONAdolescents living with cerebral palsy and their parents have differing perspective of involvement and utilise different strategies to encourage being and staying active.Teaching adolescents living with cerebral palsy about their involvement continuum and optimal level of involvement for each activity, context and environment could promote sustained participation.To ensure adolescents are "being involved" in physical activity, opportunities for engagement, motivation and persistence are important; enjoyment is a possible, but not essential attribute of involvement.Encouraging involvement in physical activity can be a source of family conflict from a young age therefore clinicians have a role as an essential supporter, motivator and educator.

Effects of a 12 week community-based high-level mobility programme on sustained participation in physical activity by adolescents with cerebral palsy: a single subject research design study.

PURPOSE: To assess if a high-level mobility programme (HLMP) can promote sustained participation in physical activity by adolescents with cerebral palsy. METHODS: Eight adolescents with cerebral palsy, Gross Motor Function Classification System levels I-II, 11-16 years, participated in 24 community-based group HLMP sessions across 12 weeks. Participants set attendance, involvement, and physical performance goals, completed activity diaries over 58 weeks and undertook physical capacity tests. Measures of activity frequency and diversity (attendance) and involvement level were collected weekly across baseline (4-6 weeks), intervention (12 weeks), and nine months follow-up (including Covid lockdown). RESULTS: Median attendance was 23 of 24 HLMP sessions. Attendance goal/s attainment was highest during COVID lockdown. Involvement goals were consistently attained throughout all phases. Physical performance goal/s attainment was highest during intervention phase but reduced during nine months follow-up. Frequency of participation in physical activities varied greatly across study phases (range 0-33 episodes/week) with stable variety of activities and generally high 'involvement.' During the intervention, seven participants improved physical capacity and six maintained, or increased, the gains six months later. CONCLUSION: Most participants improved physical capacity post-intervention but only some had sustained attendance and involvement in physical activity, highlighting the complexity of physical activity participation.

Health professionals' promotion of sustained participation in physical activity needs to consider individual preferences for frequency, diversity and duration.Supporting and measuring involvement in physical activity should be prioritised as a key outcome of an intervention.Physical activity interventions should be followed up for longer than six months to determine sustained changes in participation outcomesMeasuring physical capacity and performance gains alone is insufficient to determine sustained, meaningful participation.

The Journey to Sustainable Participation in Physical Activity for Adolescents Living with Cerebral Palsy.

PURPOSE: To understand adolescents' and their parents' perspectives on 'being active', this study explored the experience of participation in physical activity (PA), the role of long-term participation in PA, and the importance of remaining active for life. METHODS: Eight ambulant adolescents with CP (aged 11-16 years, seven male) participated in a high-level mobility programme twice per week for 12 weeks. Guided using interpretive description, adolescents and 12 of their parents were interviewed before, after and nine months following the programme. Thirty-eight interviews were coded, analysed, and interpreted, informed by audit information, reflective journaling, and team discussions. RESULTS: Adolescents and their parents highly value being active now and into adulthood. Sustainable participation in PA requires adolescents and families to navigate complex environments (interpersonal, organisational, community, and policy). Core themes were: 'Just Doing it', 'Getting the Mix Right' (right people, right place, right time), 'Balancing the Continua' and 'Navigating the Systems'. The continua involved balancing intra-personal attributes: 'I will try anything' through to 'I will do it if I want to' and 'It's OK to be different' through to 'It sucks being disabled'. CONCLUSIONS: The journey to sustainable participation was complex and dynamic. Experiences of successful journeys are needed to help adolescents with CP "stay on track" to sustainable participation.

Respiratory Health Inequities among Children and Young Adults with Cerebral Palsy in Aotearoa New Zealand: A Data Linkage Study.

(1) Background: Respiratory disease is a leading cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP). This study describes the prevalence of CP-related respiratory disease and the non-modifiable risk factors for respiratory-related hospital admissions in the Aotearoa New Zealand population. (2) Methods: New Zealand Cerebral Palsy Register (NZCPR) participant data and de-identified data from the National Minimum Dataset and Pharmaceutical Dispensing Collections were linked to identify all respiratory-related hospital admissions and respiratory illness-related antibiotic exposure over 5 years in individuals with CP (0−26 years). (3) Results: Risk factors for respiratory-related hospital admissions included being classified Gross Motor Function Classification System (GMFCS) IV or V compared to GMFCS I [OR = 4.37 (2.90−6.58), p < 0.0001; OR = 11.8 (7.69−18.10), p < 0.0001, respectively,]; having ≥2 antibiotics dispensed per year [OR = 4.42 (3.01−6.48), p < 0.0001]; and being of Maori ethnicity [OR = 1.47 (1.13−1.93), p < 0.0047]. Maori experienced health inequities compared to non-Maori, with greater functional disability, and also experienced greater antibiotic dispensing than the general population. (4) Conclusion: Maori children and young adults have a higher risk of respiratory-related illness. Priority should be given to the screening for potentially modifiable risk factors for all children with CP from diagnosis onwards in a way that ensures Maori health equity.

Do physical activity interventions influence subsequent attendance and involvement in physical activities for children with cerebral palsy: a systematic review.

PURPOSE: To investigate if children with cerebral palsy have sustained attendance and involvement in physical activities after completing physical activity interventions. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven databases were searched for the period 2001-2020 with hand-searching of pertinent reference lists. Criteria for study inclusion were participants aged 0-18 years and ≥50% with cerebral palsy; follow-up ≥1 month beyond completion of the physical activity intervention; and measurement of attendance and/or involvement in any physical activity post-intervention. Study selection, data extraction, and risk of bias assessments (Physiotherapy Evidence Database (PEDro) or tool for non-randomised studies) were completed independently by paired reviewers. Results were compiled by narrative synthesis. RESULTS: Thirteen studies were included (11 randomised controlled trials (RCTs), two non-randomised case series; intervention sample sizes: 6-34). All study participants had cerebral palsy and were aged 4-16.7 years. PEDro scores for the RCTs ranged from 5 to 10; 10 did not blind one or more therapist, participant, or assessor. Two case series showed high risk of bias. Twelve studies reported on attendance, with positive changes in three studies. At 4-14 weeks post-intervention, two studies demonstrated positive changes were maintained. Four studies included involvement outcomes; one reporting positive changes in physical activity involvement four weeks after intervention completion. CONCLUSIONS: Physical activity attendance may be influenced by physical activity interventions in the short term, but more robust research designs are required to investigate whether gains can be sustained. Activity involvement, which may influence ongoing participation, is under-researched.Implications for RehabilitationPositive changes in attendance and involvement following physical activity interventions appear short term at best.Physical activity interventions should have longer follow-up periods to determine the effect on sustained physical activity participation.Careful selection and reporting of attendance and involvement outcome measures is required.The optimal physical activity intervention to increase attendance or involvement in physical activities remains uncertain.

Correction: Soleus muscle weakness in cerebral palsy: Muscle architecture revealed with Diffusion Tensor Imaging.

[This corrects the article DOI: 10.1371/journal.pone.0205944.].

Soleus muscle weakness in cerebral palsy: Muscle architecture revealed with Diffusion Tensor Imaging.

Cerebral palsy (CP) is associated with movement disorders and reduced muscle size. This latter phenomenon has been observed by computing muscle volumes from conventional MRI, with most studies reporting significantly reduced volumes in leg muscles. This indicates impaired muscle growth, but without knowing muscle fiber orientation, it is not clear whether muscle growth in CP is impaired in the along-fiber direction (indicating shortened muscles and limited range of motion) or the cross-fiber direction (indicating weak muscles and impaired strength). Using Diffusion Tensor Imaging (DTI) we can determine muscle fiber orientation and construct 3D muscle architectures which can be used to examine both along-fiber length and cross-sectional area. Such an approach has not been undertaken in CP. Here, we use advanced DTI sequences with fast imaging times to capture fiber orientations in the soleus muscle of children with CP and age-matched, able-bodied controls. Cross sectional areas perpendicular to the muscle fiber direction were reduced (37 ± 11%) in children with CP compared to controls, indicating impaired muscle strength. Along-fiber muscle lengths were not different between groups. This study is the first to demonstrate along-fiber and cross-fiber muscle architecture in CP using DTI and implicates impaired cross-sectional muscle growth in children with cerebral palsy.

The effect of a non-surgical orthopaedic physician on wait times to see a paediatric orthopaedic surgeon.

AIMS: High referral volumes to paediatric orthopaedic surgeons create long clinic waiting lists. The use of extended scope roles for doctors and health professionals is one strategy to address these wait times. We completed a 6-month trial of a non-surgical paediatric orthopaedic physician role (NSP) to help manage non-urgent referrals to our service from local general practitioners (GPs). METHODS: For a 6-month period, the majority of non-urgent GP referrals were assessed by a US-trained NSP. Wait times were compared between this period and the same time period in the previous year. Family and referrer satisfaction was determined through postal surveys. RESULTS: Over the trial period, the NSP saw a total of 155 new patient referrals, which represented 49% of all non-urgent GP referrals for the period. Before the trial, only 75% of non-urgent referrals were seen within 131 days (19 weeks) with 10% waiting more than 215 days (31 weeks). By the end of the trial, 75% of referrals were seen within 55 days (8 weeks) and 90% within 61 days (9 weeks). The most common outcome was discharge with management advice. 12% of patients were referred on to an orthopaedic surgeon but only 1% went on to a surgical wait list. Families and referrers reported high levels of satisfaction and only three patients discharged by the NSP were referred back for orthopaedic surgeon review. CONCLUSION: The NSP role was effective at reducing clinic wait times for patients with non-urgent paediatric orthopaedic conditions, while maintaining family and referrer satisfaction.

Radiological outcome of reconstructive hip surgery in children with gross motor function classification system IV and V cerebral palsy.

Hip subluxation is common in children with cerebral palsy (CP). The aim of this study was to describe the radiological outcome of reconstructive hip surgery in children with CP, gross motor function classification system (GMFCS) level IV and V, and determine whether the GMFCS level plays a predictive role in outcome. This was a retrospective cohort study conducted at a tertiary-level pediatric hospital with a CP hip surveillance program. Of 110 children with GMFCS IV and V CP registered for hip surveillance, 45 underwent reconstructive hip surgery between 1997 and 2009, defined as varus derotational proximal femoral osteotomy with or without additional pelvic osteotomy. Eleven children were excluded because of lack of 12-month follow-up (n=10) or missing clinical records (n=1). Thus, 21 GMFCS IV children (median age 6 years at surgery) and 13 GMFCS V children (median age 5 years at surgery), who underwent 58 index surgeries, were included in the study. Clinical records and radiology were reviewed. The two surgical groups were femoral osteotomy (varus derotational femoral osteotomy with an AO blade plate or femoral locking plate fixation), or femoral ostetotomy with additional pelvic osteotomy. Reimer's migration percentage (MP) was calculated from anteroposterior pelvis radiographs to determine the outcome for each hip independently. Failure was defined as MP of greater than 60% or further operation on the hip. Reconstructive surgeries were performed for 58 hips with a median preoperative MP of 55%. There were 15 failures at a median of 62 months, including nine failures in 35 GMFCS IV hips and six failures in 23 GMFCS V hips. Overall, GMFCS V hips tended to fail earlier, (hazard ratio 2.3) with a median time to failure of 78 and 39 months for GMFCS IV and V hips, respectively. Combined femoral and pelvic osteotomies had the lowest failure rates in both groups of patients. The GMFCS classification may have some predictive value for outcomes following reconstructive hip surgery, with surgery for GMFCS V hips tending to fail earlier.

Screw placement after pinning of slipped capital femoral epiphysis: a postoperative CT scan study.

BACKGROUND: Unrecognized pin penetration in the treatment of slipped capital femoral epiphysis has serious long-term sequelae. The purpose of this study was to use postoperative computerized tomographic (CT) scans to determine the true position of the screw tip when compared with standard radiograph views. METHODS: Twenty-four patients with 33 slipped capital femoral epiphyses were included in the study. Intraoperative or postoperative radiographs [anteroposterior (AP) and frog lateral] were compared with postoperative CT scans (coronal and axial) to determine (1) distance of the screw tip from the subchondral bone of the femoral head, (2) the number of screw threads across the physis, and (3) the 3-dimensional placement of the screw tip in the femoral head. RESULTS: The positions of 38 screws in 33 hips were assessed. Screw position within specific quadrants of the femoral head was more anterior and superior than appreciated on radiographs. AP radiographs overestimated the distance between the screw tip and the subchondral bone, the average distance being 5.5 mm on AP radiographs and 3.4 mm on coronal CT (P<0.0001). Bland-Altman analysis confirmed 95% limits of agreement of -5.6 to 1.5 mm, indicating that screws could be up to 5.6 mm closer to the subchondral bone than estimated by the AP radiograph. Closer agreement was found between the frog lateral radiograph and the axial CT views, with the distance from the subchondral bone averaging 4.7 mm on frog lateral radiographs and 4.1 mm on axial CT (P<0.01). Bland-Altman analysis showed 95% limits of agreement between the 2 measures of -3.5 to 2.3 mm, suggesting that some screws were up to 3.5 mm closer to the subchondral bone. Three more anteriorly placed screws seemed to penetrate subchondral bone on CT, findings not shown on standard radiographs. CONCLUSIONS: Frog lateral radiographs of the hip provide a more accurate estimation of screw placement than AP radiographs. Screws closer than 4 mm to the subchondral bone on frog lateral radiographs or 6 mm on AP radiographs may penetrate subchondral bone.

The reliability of computed tomography scanograms in the measurement of limb length discrepancy.

This study determined the intrarater and interrater reliabilities of measurements of paediatric limb length discrepancy on anteroposterior scout computed tomography scanograms. Seven physicians measured 26 films at two measuring sessions, separated by at least 8 weeks. High intraclass correlation coefficients above 0.96 were observed for measures by different raters within one session and also for repeat measures by the same raters across sessions. The intrarater, intersessional 95% limits of agreement were +/-6 mm for tibial length, +/-5 mm for femoral length and +/-7 mm for total limb length. These errors are similar to those seen with the use of orthoroentgenograms.