Final ranking order priority of the questions, including history of rank order from the interim survey and small groups
| Question considered | Interim survey | Workshop first groups | Second small groups | Final rank | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Family score | Clinician score | Charity score | Collated rank | K-1 rank | S-1 rank | L-1 rank | Collated rank | K-2 rank | S-2 rank | L-2 rank | Collated | ||
| Does the timing and intensity of ‘early’ intervention (eg, providing information, physiotherapy, speech and language therapy, occupational therapy, etc) alter effectiveness of therapies for infants and young children with neurodisability, including those without specific diagnosis? What is the appropriate age of onset/strategies/dosage/direction of therapy interventions? | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
| To improve communication for children and young people with neurodisability: (A) what is the best way to select the most appropriate communication aids? and (B) how to encourage staff/carers to use aids to enable communication? | 3 | 5 | 10= | 3 | 2 | 2 | 5 | 2 | 2 | 2 | 2 | 2 | 2 |
| Are strategies to improve children’s (ie, peers) attitudes towards disability (eg, buddy or circle of friends, etc) effective to improve inclusion and participation within educational, social and community settings? | 10= | 4 | 2= | 4 | 3 | 4 | 6 | 3 | 3 | 3 | 3 | 3 | 3 |
| Does appropriate provision of wheelchairs to enable independent mobility for very young children improve their self-efficacy? | 22 | 14 | 22 | 24 | 5 | 8 | 2 | 4 | 4 | 4 | 4 | 4 | 4 |
| Is counselling/psychological intervention effective to promote the mental health of children and young people with neurodisability? | 18 | 23 | 6= | 17 | 4 | 5 | 14 | 6 | 6 | 6 | 6 | 6 | 5 |
| What is the (long-term) comparative safety and effectiveness of medical and surgical spasticity management techniques (BoNT-A, SDR, ITB, orally administered medicines) in children and young people with neurodisability? | 16 | 8= | 12 | 8 | 12 | 13 | 4 | 7 | 7 | 7 | 5 | 7 | 6 |
| Does a structured training programme, medicines and/or surgery speed up the achievement of continence (either/or faecal or urinary) for children and young people with neurodisability? | 6= | 20 | 19= | 15 | 16 | 16 | 7 | 12 | 8 | 8 | 9 | 8 | 7 |
| What strategies are effective to improve engagement in physical activity (to improve fitness, reduce obesity, etc) for children and young people with neurodisability? | 17 | 7 | 21 | 14 | 20 | 6 | 8 | 9 | 9 | 9 | 13 | 9 | 8 |
| Which school characteristics (eg, policies, attitudes of staff, etc) are most effective to promote inclusion of children and young people with neurodisability in education and after-school clubs? | 20 | 10 | 4 | 7 | 11 | 3 | 22 | 10 | 10 | 13 | 10 | 10 | 9 |
| What is the safety and effectiveness of melatonin (or other drugs) compared to behavioural strategies to manage sleep disorders in children and young people with neurodisability? | 14 | 19 | 8 | 12 | 8 | 22 | 16 | 17 | 19 | 10 | 17 | 15 | 10 |
| What is the safety and effectiveness of drugs compared to cognitive behavioural therapy to treat anxiety in children and young people with ASDs? | 25 | 21 | 2= | 20 | 18 | 12 | 3 | 8 | 14 | 11 | 8 | 11 | 11 |
| Are any types of physical therapy (eg, Bobath, Neuro-Developmental Therapy, hydro, constraint, strength-training, etc) more or less effective to promote motor functioning in children and young people with neurodisability (eg, cerebral palsy, acquired brain injury)? | 2 | 2 | 5 | 2 | 7 | 7 | 9 | 5 | 5 | 5 | 7 | 5 | 12 |
| Are sensory processing/integration therapeutic programmes effective in improving behaviour and/or increasing play/participation for children and young people with neurodisability? | 8 | 8= | 6= | 5 | 14 | 21 | 10 | 16 | 11 | 18 | 12 | 12 | 13 |
| Are behavioural and sensory interventions (eg, early intensive behavioural intervention, EarlyBird, enforced socialisation with peers, etc) effective in managing symptoms of ASD? | 23= | 17 | 17 | 21 | 9 | 15 | 17 | 13 | 15 | 12 | 15 | 13 | 14 |
| Are postural management programmes (using standing frames and sleep systems, etc) effective and cost-effective to prevent deformity (hip and/or spine) and improve function in children and young people with neurodisability? What is the incidence of adverse effects, for example, pain, sleep problems, etc? | 21 | 6 | 15= | 13 | 13 | 14 | 11 | 11 | 13 | 15 | 14 | 14 | 15 |
| Are child-focused strategies (eg, one-to-one or group social and skills training) effective to improve confidence, self-esteem and promote participation in recreation and leisure activities for children and young people with neurodisability? | 19 | 3 | 14 | 9 | 10 | 18 | 13 | 14 | 16 | 16 | 16 | 16 | 16 |
| Do cross-sector interventions (eg, key workers, named contacts to promote integrated health, social care, education) improve school attendance, reduce admissions, and parents’ satisfaction and experience of care for children and young people with neurodisability? | 10= | 11 | 23 | 16 | 6 | 19 | 21 | 18 | 18 | 14 | 20 | 17 | 17 |
| Does promoting public positive attitudes towards disability improve participation in recreation and leisure activities for children and young people with neurodisability? | 4 | 16 | 15= | 10 | 17 | 9 | 15 | 15 | 17 | 17 | 19 | 18 | 18 |
| Are dietary modifications/restrictions (eg, gluten, casein, dairy, meat, etc) effective in managing symptoms of ASD? | 5 | 24 | 13 | 17 | 19 | 25 | 12 | 22 | 22 | 22 | 11 | 19 | 19 |
| Are oro-motor exercises effective to improve eating and/or communication for children and young people with neurodisability? | 15 | 15 | 25 | 23 | 22 | 10 | 23 | 20 | 12 | 21 | 22 | 20 | 20 |
| Are any designs of orthoses (eg, Lycra, kinesiotaping, plastic, etc) more or less effective to promote functioning and prevent deformity for children and young people with neurodisability? | 6= | 12 | 10= | 6 | 23 | 11 | 18 | 19 | 20 | 19 | 18 | 21 | 21 |
| Are interventions to improve consistency of approach between health and education agencies (eg, keyworkers) effective to improve behavioural problems in children with ASD? | 13 | 18 | 9 | 11 | 15 | 20 | 20 | 21 | 21 | 20 | 21 | 22 | 22 |
| What is the (long-term) safety and effectiveness of drugs used in seizure management, especially in terms of adverse effects on learning, psychosis, anxiety, anger and rage? | 23= | 22 | 19= | 25 | 21 | 23 | 19 | 23 | 23 | 23 | 23 | 23 | 23 |
| Does using instrumented gait analysis improve decision-making about treatments compared to clinical assessment alone for children and young people with cerebral palsy? | 12 | 13 | 24 | 19 | 24 | 17 | 25 | 24 | 24 | 24 | 24 | 24 | 24 |
| Do massage-based therapies improve functioning and well-being for children and young people with neurodisability? | 9 | 25 | 18 | 22 | 25 | 24 | 24 | 25 | 25 | 25 | 25 | 25 | 25 |
ASD, autistic spectrum disorder; BoNT-A, botulinum neurotoxin A; ITB, intrathecal baclofen; SDR, selective dorsal rhizotomy.