Psychological care for Huntington's disease: A qualitative study exploring interventions in the Netherlands

Area of Science:

• Neuroscience
• Psychology
• Genetics

Background:

• Huntington's disease (HD) is a hereditary neurodegenerative disorder with significant motor, cognitive, and psychiatric symptoms.
• Psychological distress is prevalent in individuals at risk and those diagnosed with HD, necessitating timely interventions.
• Current psychological interventions for HD require adaptation to disease progression and patient needs.

Purpose of the Study:

• To explore psychological interventions for Huntington's disease (HD) in the Dutch healthcare system.
• To identify barriers and facilitators influencing the implementation of these interventions across different HD stages.
• To inform best practices for psychological care in HD.

Main Methods:

• Qualitative study utilizing semi-structured interviews with 13 experienced psychologists in Dutch HD healthcare facilities.
• Thematic analysis was performed to categorize interventions and identify implementation challenges and enablers.

Main Results:

• A spectrum of interventions, from genetic counseling and trauma therapy in early stages to Acceptance and Commitment Therapy (ACT) and Cognitive Behavioral Therapy (CBT) in mid-to-late stages.
• Late-stage care involves mediated approaches with family and care teams.
• Barriers include cognitive decline and referral difficulties; facilitators include multidisciplinary collaboration and preventive strategies.

Conclusions:

• Psychological interventions for HD must be stage-specific and personalized, adapting to the disease's progression.
• Early intervention, multidisciplinary teamwork, and ongoing evaluation are crucial for optimizing care quality.
• Further research is needed to enhance psychological support for individuals with HD.