Background Independent living of patients with a chronic disease is preferred by most citizens A chronic progressive disease, such as Huntington’s disease (HD) may threaten this independent living.
Aim To assess whether a specialised, multidisciplinary day care program for patients with HD, is effective in preserving or improving self-efficacy and self-management skills, in order to maintain independent living and postpone admission. Baseline data are presented in this paper.
Methods In a cohort study, patients with HD and their informal caregiver were interviewed. The primary outcome was self-management (SMAS-30). Secondary outcomes included self-efficacy (SES-NL), care needs (CANE), quality of life (EQ-5D), functioning (KATZ and Lawton iADL, TUG, PPT), satisfactory specialised care program (VAS), caregiver burden (SRB scale).
Results A total of 26 patients with HD (mean age: 51.7 years, range: 29–72), and 22 informal caregivers were interviewed. Patients tend to classify themselves as self-manageable (SMAS-30: mean 71.1, SD = 12.6), self-efficable (SES-NL: mean 31.5, SD = 5.4), and pertain a high level of functioning (KATZ: mean 6.7, SD = 1.2), whereas informal caregivers observe several existing care needs (CANE: mean 9.0, SD = 2.4) and experience themselves a moderate to severe care burden (SRB: 76% between score 50–80). In general, both patients and informal caregivers appreciate the specialised care provided.
Conclusion Patients, as well as informal caregivers, appreciate the specialised care program. Future research will determine if this program is effective in preserving self-management abilities to maintain independent living and to postpone admission.
- Specialised day care
- Huntington’s disease