Year: 2024
Type: conference-abstract
Abstract: Background The ministry of health from the Netherlands promoted a knowledge infrastructure for low volume highly complex diseases in long term care. In this process the Huntington Knowledge Network Netherland (HKNN) developed a knowledge center for which a Knowledge Agenda was deemed necessary. Aims Developing an HD knowledge agenda in which care-related knowledge disclosure and research topics are identified and prioritized. Methods/Techniques The dialogue model was used ensuring a flexible and responsive approach of relevant stakeholders. Participants were patients, informal caregivers, people at risk of inheriting HD and symptom negative gene carriers, professionals and researchers. Four steps were taken: 1) preparation, 2) consultation, 3) prioritizing themes, and 4) integration into the agenda. Results/Outcome: During the consultation phase 18 group discussions were performed. A survey was filled out by 340 persons (45% patients and proxies, 55% care professionals) to prioritize themes. Through a dialogue session themes were integrated to a top 14. In this top 14 several HD symptoms appear as well as issues on keeping a meaningful role in life, family and society throughout the whole trajectory an HD family travels. Beside the intertwining top 14 topics, four more communicational issues were addressed. Discussing the disease, dealing with the taboo on the disease, collaboration between caregivers on different levels, and ‘keeping care personnel’ were subjects which will guide the knowledge center on a societal level. Conclusions Through the dialogue model a knowledge agenda for HD was composed which will guide the network in disclosing knowledge and prioritizing research questions.
Authors: Cathelijn van Baar, Rob Haselberg, Anne Braakman, Ruth Veenhuizen
Institutions: Tilburg University, Amsterdam Public Health
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373688