Background Four individual quality of life (QoL) questionnaires are being developed to evaluate whether people with Huntington’s Disease (HD) and their partners benefit from a new electronically administered care model. The questionnaires apply the needs-based QoL model, ensuring that they will be patient-centric, rather than simply adding together symptoms and functional problems. The model argues that QoL is the extent to which individuals’ basic needs are met. Questionnaires produced applying this model are holistic and highly sensitive to changes in QoL resulting from effective treatments.
Methods Questions for each of the measures were generated directly from 50 relevant patients or partners who were interviewed independently. Analysis of interview transcripts identified over 60 needs-related items for each questionnaire. These will be translated into: German, Italian, Czech and Dutch. Final versions will be identified and validated in a test-retest survey of 50 people from each of the five countries.
Results See table
Conclusions The final questionnaires will be pre-manifest-, manifest- or partner-specific. They will be unidimensional and sensitive to changes in QoL that result from effective treatments.
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