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.

Do We Listen to Children's Voices in Physical and Occupational Therapy? A Scoping Review.

AIMS: The aim of this study was to investigate the extent, range and nature of research activity specifically reporting the inclusion of the voices of children or adolescents when therapists are setting therapy goals and implementing therapy. METHODS: We conducted a scoping review and searched the following electronic bibliographic databases: Pedro, SciELO, Google Scholar, MEDLINE, EMBASE, Web of Science and CINAHL. We included primary studies focusing on involvement of children and/or adolescents in goalsetting, decision-making or conduct of physical or occupational therapy. Results are presented descriptively and narratively. RESULTS: Nineteen studies were included presenting various instruments or strategies for involvement. We found sparse evidence that children and adolescents with disabilities were included in therapy goal setting using goal setting instruments, especially children under 5 years of age or with communicative or cognitive disabilities. CONCLUSIONS: There are few studies reporting the way in which the voices of children or adolescents are heard in therapy. Further research is needed to develop new methods and studies with stronger designs are needed to determine the extent to which listening to children's voices affects therapeutic outcomes.

Exploring the contextual transition from spinal cord injury rehabilitation to the home environment: a qualitative study.

STUDY DESIGN: Explorative qualitative study based on an interpretative phenomenological approach. OBJECTIVES: This study explored the possibility of transferring knowledge and skills from a spinal cord injury (SCI) unit to the home environment; the individual and structural factors that potentially influenced this transfer; and its compatibility with a meaningful everyday life. SETTING: Hospital-based rehabilitation unit and community in Denmark. METHODS: Fourteen individuals with SCI were selected with maximum variation according to age, sex, marital status, and level of injury. In-depth, semi-structured interviews were conducted in the participants' homes, 2-10 months after discharge from an SCI unit. Data analysis involved taking an interpretative phenomenological approach combined with a template analysis and applying the transfer of training theory to the discussion. RESULTS: Transitioning from the SCI unit to the home environment involved a multidimensional change of context in which most of the participants' previous life roles had changed. This overarching theme had a decisive influence on: balancing loss and acceptance, facing external structural barriers, and the strength of social relationships when the knowledge and skills acquired at the unit were applied in a meaningful everyday life. CONCLUSIONS: Transition from the SCI unit to the home environment is influenced by a multidimensional change of context that may restrict the use of acquired skills post-discharge, provide distant prospects for tertiary health promotion, and aggravate the experience of loss in people with SCI. Maintaining relationships is a strong mediator for transferring skills and re-establishing a meaningful everyday life.