To show the benefit of the e-healthcare model for Huntington’s disease (HD), a high quality, patient-based questionnaire is needed. There are some questionnaires available but none of them are suitable for this purpose. Most questionnaires are developed by doctors to measure what they are interested in. They do not consult patients or partners until the questionnaire is finalised.
We take a very different approach. All the questions included in our questionnaires are generated from patients or their partners by means of open-ended interviews. This means that the final questionnaires only ask about issues that are important to relevant people. Rather than ask questions about disease and symptoms, we can include any issues that are important to the lives of patients and partners, such as social and emotional needs. Our questionnaires are truly patient-based.
We believe that quality of life (QoL) is defined by the extent to which our human needs are met. Where most of our needs are met, QoL is good. These needs include relationships, love, having control over your life, coping with emotional stress and many more. Such questionnaires are particularly suitable for showing the benefits of the new e-healthcare model. Disease prevents us from meeting some of these important needs and, hopefully, treatment frees us to meet these needs.
We aim to develop QoL questionnaires for four different HD groups. These questionnaires will assess the impact of HD on the lives of HD gene carriers (pre-manifest and manifest) and companions (partners of pre-manifest and manifest gene carriers). Individuals or companions will be involved in all stages of questionnaire development and testing to ensure that we capture the most important issues for these groups. The questionnaires will be developed in parallel in UK and Ireland, Germany, The Netherlands, Italy, and the Czech Republic.