RESP-ACT: Boosting respiratory health for kids with cerebral palsy

All treatments and medications are those already being offered by the children’s hospital and disability service providers. There are no novel treatments or medications being used in this trial. The RESP-ACT intervention programme only uses and coordinates access to existing treatments and medications in a systematic way to enhance children’s respiratory health. PHYSICAL OR INFORMATIONAL MATERIALS: Physical materials will be existing resources used to assess and treat children with respiratory conditions (including videofluoroscopy, sleep studies, chest imaging, bone density scans, sputum cultures, medications). Informational materials about respiratory health in children with cerebral palsy will be prepared in consultation with families and clinicians during the trial period by meeting with teams of clinicians from relevant disciplines to plan materials and submitting proposed plans to consumer advisors. The number and duration of meetings will vary, but we anticipate at least 2 meetings with each discipline and multiple drafts circulated by email until mutually acceptable versions of the resources are completed. PROCEDURES: The RESP-ACT innovation will be based on the Consensus Statement for the Prevention and Management of Respiratory disease in Children with CP1 and follow the published RESP-ACT protocol.2 Interventions will depend on individual needs, as identified by a comprehensive assessment which will be conducted within the first month after enrolment (up to 5 hours per child). Interventions may include mealtime management, medical interventions, physiotherapy interventions, and programmes with physical activity, as well as dental and dietetic care. Frequency of intervention will depend on individual needs and goals, For example, in an acute episode, a child may be seen more frequently (up to three times per week). Whereas when well this may be less frequent and up to a month between interventions. Parents will be educated to recognize symptoms of respiratory exacerbation, and the team will respond to any requests from parents to review the children when these symptoms occur or when the children get sick. Interventions will be dependent on identified risk factors. Mealtime management interventions will include texture modifications, positioning, and nutrition. Medical interventions will include the management of motor disorder and its complications, posterior drooling, unsafe swallowing (oropharyngeal dysphagia), reflux, malnutrition, recurrent respiratory symptoms, and epilepsy. Exercise interventions will be aimed at improving or maintaining lung health. Some interventions, for example chest physiotherapy, requires specialised training to be safe and effective in children with CP, particularly if they have difficulties with retained secretions. If a child is requiring active chest physiotherapy, these interventions will be undertaken by a physiotherapist especially employed for the RESP-ACT program. Children who are at risk of deterioration with any intervention will be seen in the hospital setting if required. A dentist will monitor oral health. A dietitian will prepare a dietary plan to ensure adequate nutrition. The deliverers of the innovation will meet weekly to discuss the children’s treatment plans, and some children and their families will receive additional advice and/or changes to their treatments following each meeting. This may include additional face to face interventions, with the frequency dependent on each child/caregiver need. A programme nurse will be responsible for coordinating appointments and intervention recommendations and providing education and training. A multi-faceted implementation strategy will be delivered by the research team to specialist clinicians at Perth Children’s Hospital (PCH), GPs, and multidisciplinary community therapy providers to children with CP to: 1. support them to identify children with CP at risk of respiratory disease and refer them to the RESP-ACT programme; 2. identify clinicians’ role in the prevention and treatment of respiratory disease in children with CP at risk of respiratory disease; and 3. clarify communication strategies between treating clinicians and service providers. The primary implementation strategies will include education, training, tailored strategies to address community referral barriers, creation of a learning collaborative across the health and community services, team facilitation, and audit and feedback to build clinicians’ capabilities, opportunities and motivations to deliver RESP-ACT recommendations within their routine care WHO WILL DELIVER THE INTERVENTION: Respiratory physicians, paediatricians, respiratory physiotherapists, dentists, and dietitians already employed within the children’s hospital. In community disability service providers, speech pathologists, physiotherapists, occupational therapists and general practitioners. MODE OF DELIVERY: For children enrolled in the study, interventions will be face to face, with the possibility of consultations by phone or videocall. For clinicians enrolled as deliverers: Resources and workshops will be delivered online or face to face. Workshops for clinicians lasting 90 minutes or 3 hours will be offered before the commencement of the trial period, and continue into its early months. Each clinician will attend only one workshop, and workshops will be tailored to professions and presented by a research team member from the relevant profession (physiotherapist, doctor, speech pathologist, dietitian). Clinicians will have access to research intervention staff for ongoing professional support, and at the end of the study an outcome will be to develop an ongoing “community of practice” to support sustainability of the model of care. NUMBER OF TIMES: This is not prescribed for the RESP-ACT intervention. The number of times will depend on results of assessments and vary between children. The trial period is 12 months, but the plan is to embed RESP-ACT within health services long-term. LOCATIONS: Interventions will be delivered at the children’s hospital. The multidisciplinary team will provide preventative care in the children’s home or community if it is safe to do so. PERSONALIZATION: The intervention is personalized. Treatment will be adapted to the individual child, based on a comprehensive assessment of respiratory risk factors leading to individualized care plans based on the child’s individual profile. FIDELITY: Intervention adherence or fidelity will be assessed by the types of service delivered, as recorded by deliverers of the innovation in the medical record, and by qualitative interviews with the deliverers and parents after 6 months. The medical record will be audited against a checklist of RESP-ACT criteria to be met. Dose delivered will be assessed by the occasions of service or number of hours service delivery to the children, as recorded by clinicians. REFERENCES 1. Gibson N, Blackmore AM, Chang AB, et al. Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement. Dev Med Child Neurol 2021;63:172-182. 2. Marpole R, Blackmore AM, Wilson AC, et al. Can RESPiratory hospital Admissions in children with cerebral palsy be reduced? A feasibility randomised Controlled Trial pilot study protocol (RESP-ACT). BMJ Open 2024;14:e076730.