Patients’ and caregivers’ perspectives: assessing an intensive rehabilitation programme and outcomes in Huntington’s disease

Abstract
Aim To investigate the subjective evaluation of an intensive rehabilitation programme and outcomes by people with Huntington’s disease (HD) and their caregivers.
Subjects and methods A written questionnaire was mailed to people with mild-moderate HD (nÿ=ÿ40) who had completed at least one course of the intensive, inpatient rehabilitation protocol carried out at a facility of the Italian National Welfare System in the previous 3 years (on average 8.6 months before). Descriptive and inferential statistics were used. Thematic analyses were also conducted on written texts.
Results The response rate was 93%. A general improvement after discharge was perceived by all of the respondents. Improvements were reported on gait, balance, motor control, and fall reduction. Duration of benefits was estimated to last from 1 to 3 months by 71% of informants with no carry over to the next admission, which occurred on average 5.7 months later. Ameliorations were also reported in speech and swallowing, and several psychosocial aspects: mood, apathy, familiar and social relationships (binomial test, pÿ<ÿ0.05). As far as organisational aspects of structure and programme are concerned, all respondents expressed a positive evaluation (binomial test, pÿ<ÿ0.05). The mean vote given to the whole rehabilitation experience by patients on a 10-point scale was 7.3, confirmed by caregivers’ mean vote of 7.4. Additional free comments were added by the majority of respondents (nÿ=ÿ35). From caregivers’ and patient’s perspectives, relevant themes emerged.
Conclusion An intensive rehabilitation programme in people with HD is perceived to produce relevant improvements beyond bodily motor and functional performance. Patients’ and caregivers’ evaluations are relevant in health-care research in order to assess the worth of a programme and to define new ones.