Jacinta Quartermaine, T A Rose, Megan Auld, Leanne Johnston

Abstract

Background and objective: This study focused on the community-based participation experiences of young people with cerebral palsy (CP), investigating the factors that make participation easier or harder.

Methods: Accessible methods were utilized to explore the perspectives of 15 young people with CP aged 15 to 26 years with diverse motor and communication abilities (Gross Motor Function Classification System I = 4, II = 6, III = 1, IV = 3, V = 1, Viking Speech Scale I = 7, II = 4, III = 3, IV = 1). Participants provided regular written reflections, photographs, or videos about their community-based participation. Data were analyzed using reflexive thematic analysis.

Results: Self-reported reflections were grouped inductively into 421 codes, then 22 subthemes and 6 themes: (i) My CP characteristics can make participation in the community more difficult; (ii) My own thoughts, emotions, confidence, and sense of achievement influence the things I do in the community; (iii) Accessibility of the environment and availability of equipment influences my participation in the community; (iv) The range of supports I have available influences my participation in the community; (v) Whether the community activity has been adjusted to include and involve me influences my participation; and (vi) The attitudes, actions, and level of acceptance from others in the community influences my participation.

Discussion: Key factors influencing community-based participation for young people included CP characteristics, thoughts, emotions, confidence, environment, equipment, supports, accommodations, attitudes, actions, and acceptance.

Keywords: Cerebral palsy; community; participation; qualitative thematic analysis; young people.

https://pubmed.ncbi.nlm.nih.gov/42143034/

From evidence to practice: factors influencing the implementation of cord blood treatment for cerebral palsy in the United States

Madison C B Paton, Joanne Kurtzberg, Jessica Sun, Sarah Reedman, Remy Blatch-Williams, Michael Fahey, Iona Novak, Megan Finch-Edmondson

Abstract
Background and aims: Cord blood infusion is an emerging treatment for cerebral palsy (CP) currently offered in the United States through clinical trials and an expanded access pathway. This study aimed to understand the barriers and facilitators influencing implementation of cord blood treatment for CP, to help inform future implementation efforts.

Methods:
Semi-structured interviews were conducted with US professionals involved in the cord blood treatment program for CP at Duke University and a collaborator site. Data were analyzed using reflexive thematic analysis.

Results:
From 16 interviews, 5 themes were identified capturing patterned barriers and enablers. Key facilitators included boundary-spanning clinical leadership, interprofessional coordination, dedicated resourcing, responsiveness to community demand, an established safety profile, and a strong research culture. Barriers included the need for cross-disciplinary expertise, uncertainty regarding efficacy evidence, funding and regulatory constraints, and system-level challenges. Participants described that many barriers were overcome to establish the program, while acknowledging that others may persist and are context dependent.

Conclusions: Findings highlight that implementation of cord blood treatment for CP is feasible within specialized settings but contingent on local infrastructure, governance, and workforce capacity. Identified facilitators align with established implementation strategies and offer transferable insights, while underscoring the need for regulatory approval, ethical oversight, and system-level supports to enable equitable and sustainable access to emerging regenerative therapies for CP.

Keywords: barriers; cerebral palsy; cord blood; facilitators; implementation.

https://pubmed.ncbi.nlm.nih.gov/42571975/

Muscle morphology and intramuscular fat after treatment as usual including BonTA in children with cerebral palsy - a commentary and some context.

Associate Professor Sian Williams

Decreased muscle size (muscle atrophy) and fat infiltration have been believed to be two important muscle changes during the growth of children with cerebral palsy (CP). Muscle atrophy has been well demonstrated in short-term studies in the calf muscle (medial gastrocnemius; MG) in children with CP. However, intramuscular fat infiltration has been less studied, mainly because it has been difficult to measure accurately. Therefore, there is a need for long-term follow-up of muscle alteration, including both muscle structure and composition, in children with CP using a technique that can provide reliable, quantitative, and specific measurement.

In this study, we used different MRI techniques to evaluate muscle composition including intramuscular fat content changes after a 12-month treatment-as-usual (TAU), starting with the first botulinum neurotoxin A (BoNT-A) injection, in children with CP and typically developing peers. All children with CP received at least one injection into the MG. We measured muscle volume, fascicle length, pennation angle, and intramuscular fat fraction of four lower leg muscles, including both muscles that point the foot downward (plantarflexors) and upward (dorsiflexors).

We found that the muscle volume (when adjusted for body size) of all evaluated muscles was not changed after the 12-month TAU in children with CP. Similar results were observed for muscle structure at the fascicle level, including fascicle length and pennation angle. However, the amount of fat within the muscle increased in the MG at the 12-month follow-up.

After a 12-month TAU which involves BoNT-A injection, there was no clear evidence of ingoing muscle atrophy in the lower-leg muscles, including both plantarflexors and dorsiflexors. However, we found increased infiltration of intramuscular fat in the injected muscle (MG), suggesting changes in muscle composition despite stable muscle size.

https://pubmed.ncbi.nlm.nih.gov/42501405/