Session Information
Date: Wednesday, June 22, 2016
Session Title: Huntington's disease
Session Time: 12:00pm-1:30pm
Location: Exhibit Hall located in Hall B, Level 2
Objective: The purposes of this study was evaluated the feasibility of psychosocial rehabilitation program designed to promotes automomy in people with HD and to describe the main constraints to empowerment found in this population.
Background: Huntington disease (HD) is an autosomal dominant, neurodegenerative disease, with mobility, cognitive, and behavioral symptoms. Onset is frequently in midlife, with gradual progression of symptoms a period of 15 to 20 years, leading eventually to people with HD requiring assistance with activities of daily living, dependence being affected people to deterioration in quality of life. We consider the importance of empowerment of people with Huntington’s disease by a human right perspective in health and social process. Many factors that interfere with the autonomy and must be operated on, requiring a transdisciplinary team.
Methods: Design Overview. We conducted a open feasibility trial of a psycosocial intervention over 6 months, renewable with new goals, in patient with HD. Setting and Participants 38 sequential eligible people with HD were recruited from our centers between March 1, 2013, and March 1, 2015. Intervention An important component of the intervention was setting individualized goals using the Goal Attainment Scale (GAS).
Results: 38 patients were evaluated (12 men and 26 women) with Huntington’s disease, with 46.6±16.9 year old and 11.2±5.3 years of evolution. Disease stage I 5 patients (13.2%), II 10 (26.3%), III 8 (21.1%) and IV 15 (39.5%). With a total of 359 goals, with 1 to 8 goal per patients. We used of the International Classification of Functioning, Disability and Health (ICF) for classification of barriers to autonomy, N=55 15.5% was related to activities and participation and 294 84.6% related to environmental factors.
| ICF | N Goal | % | |
| ACTIVITIES AND PARTICIPATION | LEARNING AND APPLYING KNOWLEDGE | 1 | 0,3 |
| GENERAL TASKS AND DEMANDS | 1 | 0,3 | |
| COMMUNICATION | 5 | 1,4 | |
| MOBILITY | 6 | 1,7 | |
| SELF-CARE | 4 | 1,1 | |
| DOMESTIC LIFE | 18 | 5,1 | |
| INTERPERSONAL INTERACTIONS AND RELATIONSHIPS | 5 | 1,4 | |
| COMMUNITY, SOCIAL AND CIVIC LIFE | 15 | 4,3 | |
| ENVIRONMENTAL FACTORS | PRODUCTS AND TECHNOLOGY | 19 | 5,4 |
| SUPPORT AND RELATIONSHIPS | 28 | 8,0 | |
| SERVICES, SYSTEMS AND POLICIES | 250 | 71,0 | |
| Total | 352 | 100,0 |
Conclusions: The GAS scale is a useful tool to monitor compliance with targets in a psychosocial rehabilitation program for people with Huntington’s disease.
To cite this abstract in AMA style:
D. Alburquerque, N. Rojas, S. Tapia, P. Reyes, C. Silva, P. Chana-Cuevas. Program evaluation empowerment of people with Huntington’s disease (HD) and their families: Using goal attainment scaling (GAS) [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/program-evaluation-empowerment-of-people-with-huntingtons-disease-hd-and-their-families-using-goal-attainment-scaling-gas/. Accessed November 22, 2024.« Back to 2016 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/program-evaluation-empowerment-of-people-with-huntingtons-disease-hd-and-their-families-using-goal-attainment-scaling-gas/