Cerebral Palsy - Early Diagnosis and Intervention Trial: protocol for the prospective multicentre CP-EDIT study with focus on diagnosis, prognostic factors, and intervention.

BACKGROUND: Early diagnosis of cerebral palsy (CP) is important to enable intervention at a time when neuroplasticity is at its highest. Current mean age at diagnosis is 13 months in Denmark. Recent research has documented that an early-diagnosis set-up can lower diagnostic age in high-risk infants. The aim of the current study is to lower diagnostic age of CP regardless of neonatal risk factors. Additionally, we want to investigate if an early intervention program added to standard care is superior to standard care alone. METHODS: The current multicentre study CP-EDIT (Early Diagnosis and Intervention Trial) with the GO-PLAY intervention included (Goal Oriented ParentaL supported home ActivitY program), aims at testing the feasibility of an early diagnosis set-up and the GO-PLAY early intervention. CP-EDIT is a prospective cohort study, consecutively assessing approximately 500 infants at risk of CP. We will systematically collect data at inclusion (age 3-11 months) and follow a subset of participants (n = 300) with CP or at high risk of CP until the age of two years. The GO-PLAY early intervention will be tested in 80 infants with CP or high risk of CP. Focus is on eight areas related to implementation and perspectives of the families: early cerebral magnetic resonance imaging (MRI), early genetic testing, implementation of the General Movements Assessment method, analysis of the GO-PLAY early intervention, parental perspective of early intervention and early diagnosis, early prediction of CP, and comparative analysis of the Hand Assessment for Infants, Hammersmith Infant Neurological Examination, MRI, and the General Movements method. DISCUSSION: Early screening for CP is increasingly possible and an interim diagnosis of "high risk of CP" is recommended but not currently used in clinical care in Denmark. Additionally, there is a need to accelerate identification in mild or ambiguous cases to facilitate appropriate therapy early. Most studies on early diagnosis focus on identifying CP in infants below five months corrected age. Little is known about early diagnosis in the 50% of all CP cases that are discernible later in infancy. The current study aims at improving care of patients with CP even before they have an established diagnosis. TRIAL REGISTRATION: ClinicalTrials.gov ID 22013292 (reg. date 31/MAR/2023) for the CP-EDIT cohort and ID 22041835 (reg. date 31/MAR/2023) for the GO-PLAY trial.

Correspondence between Expected, Perceived, and Measured Effects of BoNT-A Treatment in Calf Muscles among Children and Adolescents with Cerebral Palsy: A Mixed Methods Study.

(1) Background: Our study explores the relationship between expected, perceived, and measured effects of botulinum toxin A (BoNT-A) treatment and saline (placebo) in children and adolescents with cerebral palsy (CP) in the calf muscles of 20 children and adolescents with cerebral palsy (CP), aged 4-15 years, using the Gross Motor Function Classification System (GMFCS) I-II. (2) Methods: A mixed methods parallel database design was used. Quantitative and qualitative data were collected at baseline and four weeks after treatment. The primary quantitative measure was gross energy cost (EC) during walking, obtained from a 5-Minute Walk Test (5MWT), while qualitative semi-structured interviews were performed with each parent and child/adolescent individually. (3) Results: Four weeks after treatment, we did not find any correspondence between expected, measured, and perceived effects. Interestingly, parental perceptions of treatment effects were more consistent than the measured outcomes. We also observed a connection between parental treatment expectations and perceived effects, often related to reduced energy expenditure. Children tended to view their parents as treatment experts and had fewer expectations and perceptions themselves. (4) Conclusions: These findings support the importance of child-centered care, which entails actively listening to children's expectations and perceptions during the treatment process.

The assisting hand assessment for children and youth with brachial plexus birth injury: a study of validity and item hierarchy of AHA-Plex.

OBJECTIVE: Functional assessments that focus on activity performance and that produce valid outcome measures for people with brachial plexus birth injury are lacking. The primary aim of this study was to re-evaluate the internal scale validity of the Assisting Hand Assessment specifically for children and adolescents with brachial plexus birth injury. Two further aims were investigating whether the scale could be shortened for this group while maintaining psychometric quality, and exploring and presenting its item difficulty hierarchy. DESIGN: A cross-sectional psychometric study. SUBJECTS: A convenience sample of 105 children and adolescents (aged 18 months to 18 years, mean 6 years, 7 months, standard deviation (SD) 4 years, 4 months) from Sweden, Norway, and the Netherlands with brachial plexus birth injury. METHODS: Participants were assessed with the Assisting Hand Assessment. Data were analysed with Rasch measurement analysis. RESULTS: The 20 Assisting Hand Assessment items together measured a unidimensional construct with high reliability (0.97) and the 4-level rating scale functioned well. Item reduction resulted in 15 items with good item fit, unidimensionality, reliability and acceptable targeting. CONCLUSION: Assisting Hand Assessment for people with brachial plexus birth injury, called AHA-Plex, has 15 items and good internal scale validity. A unique item hierarchy for people with brachial plexus birth injury is presented.

Parental Coping, Representations, and Interactions with Their Infants at High Risk of Cerebral Palsy.

The aim of this study is to describe parental coping, representations, and interactions during the time of inclusion in the Small Step early intervention program for infants at high risk of cerebral palsy (CP) in Norway (ClinicalTrials.gov: NCT03264339). Altogether, 11 infants (mean age 4.8 months, SD: 1.5) and their parents (mothers: n = 10, fathers: n = 9) were included. Parental coping was assessed using the Parenting Stress Index-Short Form (PSI-SF) and the Hospital Anxiety and Depression Scale (HADS). Parental representations and parent-infant interactions were assessed using the Working Model of the Child Interview (WMCI) and the Parent-Child Early Relational Assessment (PCERA). Parents' PSI-SF and HADS scores were within normal range; however, 26.7% showed symptoms of stress, 52.6% showed symptoms of anxiety, and 31.6% showed symptoms of depression above the cut-off. WMCI results indicate that 73.7% of the parents had balanced representations. For PCERA, the subscale Dyadic Mutuality and Reciprocity was of concern, while two other subscales were in areas of strength and three subscales in some concern areas. There were no differences between mothers and fathers. Most of the parents had balanced representations, some had mental or stress symptoms and many were struggling with aspects of the parent-infant interaction. This knowledge could be useful when developing more family-centered interventions.