Developmental Medicine and Child Neurology最新文献

Aim: To co-design a social prescribing intervention (the EPIC-CP programme: Equitable Pathways and Integrated Care in Cerebral Palsy) with children with cerebral palsy (CP), their families, and clinicians to address unmet social needs.

Method: The study was conducted (August 2021 to March 2023) at the paediatric rehabilitation departments of the three tertiary paediatric hospitals in New South Wales, Australia. Eligible participants attended or worked at one of the departments, including children with CP, parents/caregivers, and clinicians. Mixed-methods co-design was used in intervention co-production and prototyping. The project was overseen by research advisors with lived experience of CP.

Results: More than 200 participants contributed to the co-design research. Families experienced a substantial burden of unmet social needs. Co-designed interventions involved systematic identification of unmet social needs with (1) targeted community resources and (2) engagement with a 'community linker' who supported children/young people and their families to access health, education, and social services that matched their identified needs and preferences. Research participants co-developed the programme logic model and prototype. This was piloted in research action cycles and iteratively refined until consensus was achieved.

Interpretation: We co-designed a social prescribing programme responsive to the needs of its end-users and purposefully developed to be embedded in the Australian health setting. A pilot randomized controlled trial will further evaluate this intervention.

Aim: To assess the effect of single botulinum neurotoxin A (BoNT-A) injections into the calf muscles on the gross energy cost of walking in children with cerebral palsy (CP) and to evaluate the effect of BoNT-A on walking capacity, physical activity, perceived changes in mobility, and pain.

Method: This was an industry-independent, randomized, quadruple-blind, placebo-controlled, multicentre trial (ClinicalTrials.gov registration: NCT02546999). Sixty-one children (33 male, median age [range] = 8 years [4-16 years]) with spastic CP and classified in Gross Motor Function Classification System (GMFCS) levels I and II allocated to single injections of either BoNT-A or 0.9% saline into the calf muscles. The main outcome was gross energy cost (J/kg/m); secondary outcomes were walking capacity, habitual physical activity, perceived change in mobility tasks, and calf pain at baseline, 4 weeks (P1), 12 weeks (P2), and 24 weeks (P3) after the injection.

Results: The mean change in energy cost did not differ significantly between groups at the primary time point P2 (-0.27 J/kg/m, 95% confidence interval - 0.91 to 0.36, p = 0.404), nor at P1 or P3. Regarding the secondary outcomes, there was some evidence of a larger reduction in pain intensity in the group given BoNT-A (p = 0.043).

Interpretation: One treatment with BoNT-A was not superior to placebo in making walking easier in children with CP classified in GMFCS levels I and II, at least in the short term. BoNT-A may have a pain-reducing effect.

Aim: To map the ingredients of non-invasive interventions provided to young ambulant children with cerebral palsy.

Method: Articles were screened and each study's characteristics extracted. The intervention ingredients were described in terms of the Rehabilitation Treatment Specification System and linked to the 'F-words'. Results were interpreted and validated by a patient and public involvement group.

Results: Sixty-one papers were included, of which 55.5% were classified as randomized controlled trial design studies. The selected studies included a total of 2187 children (mean age range 3 months to 5 years 11 months), most from high-income countries. The included studies investigated a total of 27 interventions, which together presented ingredients representing all F-words, in the following order of frequency: 'fitness' (e.g. strength and endurance training), 'functioning' (e.g. active and repetitive practice of a task), 'family' (e.g. context-focused therapy), 'fun' (e.g. inclusion of child-friendly activities), 'friends' (e.g. group activities), and 'future' (e.g. didactic information sharing). Thus, ingredients related to the F-word 'future' were the most infrequently reported.

Interpretation: Therapists and families need to be aware of the most appropriate match between the F-word goals, ingredients, and targets. Finally, 'fun', 'friends', and 'future' should be addressed as potential outcomes in future studies.

Aim: To systematically review the psychometric properties of the Alberta Infant Motor Scale (AIMS) when used for infant populations internationally, defined as infants not living in Canada, where the normative sample was established.

Method: Seven databases were searched for studies that informed the psychometric properties of the AIMS and culturally adapted or translated versions in non-Canadian infant cohorts.

Results: Forty-nine studies reported results from 11 663 infants representing 22 countries. Country-specific versions of the AIMS are available for Brazilian, Polish, Serbian, Spanish, and Thai infant cohorts. Country-specific norms were introduced for Brazilian, Dutch, Polish, and Thai cohorts. The original Canadian norms were appropriate for Brazilian, Greek, and Turkish cohorts. Across countries, the validity, reliability, and responsiveness of the AIMS was generally sufficient, except for predictive validity. Sufficient structural validity was found in one study, responsiveness in one study, discriminant validity in four of four studies, concurrent validity in 14 of 16 studies, reliability in 26 of 26 studies, and predictive validity in only eight of 13 studies.

Interpretation: The use of the AIMS with validated versions and norms is recommended. The AIMS or country-specific versions should be used with caution if norms have not been validated within the specific cultural context.

Aim: To determine the frequency, type, clinical, and sociodemographic associations of unmet social needs in children with cerebral palsy (CP).

Method: 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.

Results: 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).

Interpretation: 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.