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For interpreting differences or changes in PRO instruments, information needs to be provided as to whether the changes seen in the scores are important from either the patient's or clinician's perspective.
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- Does this involvement lead to indicators and instruments that match stakeholders' information needs?
The question is whether this involvement leads to indicators and instruments that match stakeholders' information needs.
Patients have not been involved in the design of information needs assessment instruments.
Two validated instruments were used to quantify information needs and preferences: the Educational Needs Assessment Tool ENATT, range 0-156, higher scores indicate higher educational needs) and the Autonomy Preference Index (API, range 0-100, higher scores indicate stronger preferences).
In the case of programme monitoring and evaluation, for example, these instruments may in fact favour the information needs of some actors, such as donors, possibly to the detriment of and financial cost to governments in receipt of funds, as has sometimes occurred in HIV/AIDS programming [ 42].
Differences were found in the self-perceived information needs of patients responding to different instruments, indicating a priming effect.
A tailored education program was designed which took into account individual information needs of patients by using a feedback instrument.
We developed a structured telephone intervention from previous findings on information needs of women with breast cancer, 12 13 adapting a research instrument for use as a clinical guide.
This is particularly the case for health information needs (Table 3), which, given the content of our continuity instrument, is understandable.
It should be remembered that evidence to support the use of an instrument is an ongoing process with information needed under various study conditions.
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