Priorities for research

QUESTIONS IDENTIFIED BY:

Consumers

Intervention researchers and clinicians

Aetiology and prevention researchers

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High priority questions for Intervention researchers and clinicians

Half of the consumer generated questions were reflected in the professional’s priority questions. Consumers were interested in policies at a societal level that may improve their quality of life, whereas professionals were still focusing on health interventions aimed at improvements in families’ quality of life.

 

 

Effective outcomes

Function and Participation

• What are the most effective interventions for improving participation and quality of life?
• What interventions deliver the biggest functional gains?

Relationships

• What strategies assist people with CP to develop friendships and relationships?

Long Term Outcomes

• What interventions produce the best long-term outcomes?
• What are the most effective equipment and devices for improving independence and quality of life long-term?
• What is the long-term safety and impact on function; participation and quality of life of medical interventions that reduce spasticity?

Coping

• What family support strategies best reduce family stress and promote coping?
• What interventions promote self-esteem?

Employment

• What service factors improve the likelihood of people with CP gaining employment?

Prevention of Deformity

• What are the safest and most effective surgical interventions to improve skeletal alignment and function?
• What is the effectiveness of orthoses for improving function and preventing secondary deformity?
• What is the most effective way to prevent hip dislocation?
• What are the best ways to prevent the secondary impairments and injuries?

Physical Potential

• What is the best way to maximise mobility?
• What physical activity programs best improve function and fitness?

Effective Research/Services

Service Models

• What is the optimal intensity of therapy programs?
• What models of service, policies and education program best support transition from paediatric to adult services?
• What are the differences in outcomes, when services are provided by allied health versus parent versus community volunteers?
• What affects client satisfaction and service uptake?

Measurement and Methodolgies

• What is the best research method to evaluate the relative contributions of the therapies, orthoses and medical interventions?
• What instruments measure the effectiveness of cerebral palsy intervention and what is the sensitivity of these measures?
• What are the most efficient ways to establish and maintain CP registers to facilitate research?
• What are the most appropriate measures for assessing function in the community?
  
  

High priority questions for Aetiology and prevention researchers identified questions