Huntington's Disease (HD)
Conditions
Keywords
Huntington's Disease, Social Cognition, Caregiver Burden
Brief summary
Individuals with Huntington's Disease have impaired social cognition, which is the domain of cognition that allows individuals to understand others' perspectives so that they can navigate interpersonal actions successfully (e.g., understanding someone may be sad based of their facial emotion or tone of voice and then responding in a sympathetic manner). Impaired social cognition is associated with impaired social functioning, poor psychological wellbeing and increased caregiver burden, which is known to be significant among those who care for individuals with Huntington's Disease. Computerized social cognition training has been shown to improve social cognition in individuals with schizophrenia, who, like individuals with Huntington's disease, have cognitive impairments. The investigators propose a pilot study of computerized social cognition training in individuals with Huntington's disease. This will be a feasibility study that aims to show that social cognition training in HD can be studied in preparation for a larger randomized controlled trial. The investigators hypothesize that social cognition training can improve social cognition, social functioning, and quality of life in individuals with Huntington's Disease and decrease caregiver burden among those who care for individuals with Huntington's Disease.
Interventions
BEHAVIORALSocial Cognition Training
Neuroplasticity-based social cognition training that targets a range of social cognition skills, including visual and vocal affect perception, social cue perception, theory of mind, self-referential style, and empathy
Sponsors
Rush University Medical Center
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
OTHER
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
for Individual with Huntington's Disease * Diagnosed with Huntington's Disease based on genetic testing * Must be between 18 and 65 years of age * Native English speaker who is literate in English * Stable psychotropic medication regimen for 4 weeks * Must have a score of somewhat easily on all items in the CPQ-12 * MOCA \>18 * Completed 12 years of schooling * Access to laptop or mobile device * Willingness to come in person 6-12 weeks after first visit Inclusion Criteria for Caregiver of Individual with Huntington's Disease * Lives with patient * Must be between 18 and 65 years of age * Native English speaker who is literate in English * MOCA \>26 * Willingness to come in person within 6-12 weeks after first visit
Exclusion criteria
for Individual with Huntington's Disease * Any known neurological condition (other than Huntington's Disease). * History of learning and/or intellectual disabilities * Currently actively involved in any other interventional trial (i.e. have begun the intervention) or within 4 weeks of completing the final assessments of an interventional trial. * Currently regularly completing a computerized cognitive training intervention. * Active suicidal ideation with some intent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Proportion of participants willing to consider study out of those who have been approached | 32 months | — |
| Number of participants who adhered and completed the study | 32 months | — |
| Ease of program on a scale of 1 to 5 with 5 being very easy. | 32 months | — |
| Participant satisfaction with the program | 32 months | This will be a qualitative measure. The study staff will elicit from the participants what they liked about the program, what they did not like about the program, and what they would change about the program if they could. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in score on the Quality of Life in Neurological Disorders Positive Affect and Wellbeing Questionnaire (scores range from 23 to 115; higher score indicates better outcome) | 6-12 weeks | — |
| Change in accuracy on a facial emotion recognition task | 6-12 weeks | — |
| Change in score on the Caregiver Burden Inventory (scores range from 0-96; lower score indicates better outcome) | 6-12 weeks | — |
| Change in accuracy on an empathic accuracy task | 6-12 weeks | Participants view videos of individuals describing significant life events. Throughout the videos the participant are asked questions about the thoughts and feelings of the individual in the video. |
| Change in score on the Quality of Life in Neurological Disorders Ability to Participate in Social Roles and Activities (scores range from 45 to 225; higher score indicates better outcome) | 6-12 weeks | — |
| Change in score on the Quality of Life in Neurological Disorders Satisfaction with Social Roles and Activities Questionnaire (scores range from 45 to 225; higher score indicates better outcome) | 6-12 weeks | — |
Countries
United States
Contacts
Primary ContactTyler Svymbersky
Outcome results
None listed