TEN Study: Establishing baseline information and criteria
The project is complex and it will be important to ensure that its bases are sound and that fundamental concepts and assumptions are clarified. The following have been identified as key questions that need to researched and resolved early in the project.
What is Cerebral Palsy (CP)?
The project team will obtain and synthesise information on: -
• clinical definitions and severity scales for measurement;
• trends in incidence and prevalence of CP in Australia and internationally, including associated risk factors and “causes” and relationship with low birth weight etc; and
• features of CP and functioning of people with CP at various stages of life.
What is Therapy and What Are its Benefits to People with Cerebral Palsy and Like Disabilities
Project components designed to answer this question will be: -
• Literature search and review on definition, costs and benefits of therapy. An important component will be the search for costing studies including cost-benefit studies, as well as studies that consider the question: What are the costs of not providing therapy?
• What therapies are in scope? The aim is to keep the ‘scope’ broad enough to be relevant to CP, but not so broad that there are no boundaries. 2
• The nature of effective therapy.
• What aspects of human functioning respond to therapy? What aspects of functioning of people with CP and like disabilities might require and benefit from therapy, and at what ages?
• How are outcomes identified and recorded?
Profiling Met, Unmet and Partially Met Need
An initial literature search will be conducted to support later empirical and expert panel work. Issues to be addressed in these processes include: -
• Types of disability and relationship to need for therapy.
• Realism about what is meant by ‘met’ need i.e. what constitutes a reasonable, effective level of service and the difference between real and ideal.
• A consideration of the episodic aspects of need and provision, and the timing of therapy.
• Establishing and measuring the level of need for therapy and the relationship to cost.
What is the equipment uses by people with cerebral palsy, what is its relationship to therapy, and what are its benefits to people with cerebral palsy and like disabilities?
To provide information on equipment use and associated benefits, the following will be undertaken: -
Literature review, including costing and cost/benefit studies.
• Investigation of the current work happening in Australia, such as the prescribing patterns of therapists, and the availability of data on high level of use by people with physical disabilities.
• Data on costs of equipment; the range of costs, and patterns of use and expenditure.
This aspect of the study is considered to be potentially large and may not be a fully explored component of the project. Nevertheless it is also recognised that therapy and equipment are so inter-related that it would be difficult to exclude the topic.
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