Background Research in HD is predominantly focused on finding a cure. Less research is designed to improve quality of life. Topaz Huntington Centre Overduin in Katwijk, the Netherlands, has combined care with research for many years. Themes of our research projects have been driven by professional therapists, resulting in studies on swallowing difficulties and physiotherapy programs.
Three years ago, we composed a Research Agenda to point out the relevant research themes. We did not, however, explicitly included the needs and wishes of the HD patients, nor did we evaluate patients opinions on former research. It is time to improve the Agenda and include the perspectives of the patients at stake.
Aim to include HD patients opinions, needs and wishes in establishing a new research agenda for our LTC-HD centre.
Methods We invited 6 HD-patients to join a Delphi panel with a semi-structured agenda. Principal questions were:
How have earlier studies helped you to improve your quality of life, and
What are the most important themes that we should take up in future studies.
The group session was filmed, and the participants were also interviewed individually. The film is being used to give HD-patients a stronger voice in research. (www.huntingtonplein.nl)
Results All participants concluded that earlier studies on exercise and swallowing did help them in every day life in the facility, and contributed to a better quality of life.
Regarding important new themes, four emerged:
social isolation: it is very difficult to build new relations- what/how can this be facilitated?
spending your day in a facility, how to live your own life? Especially for young adults, it ‘s important to participate in sport and social activities.
Control: if functional independence declines, how do you remain control over your own life?
Nutrition: in spite of necessary advises from therapists, how can you pertain meals to be enjoyable and positively challenging?
Conclusions Research themes that are important to HD-patients are not necessarily the same as defined by researchers of professionals. This panel defined social themes as the most important for them. Especially for HD patients, it’s essential to include activities and meals in long term care that fit the wishes of young adults.
- patient perspectives
- quality of life
- long term care
- Young HD
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