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

Journal article | Zeitschriftenartikel

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 (n = 40) 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, p < 0.05). As far as organisational aspects of structure and programme are concerned, all respondents expressed a positive evaluation (binomial test, p < 0.05). 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 (n = 35). 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.

Object Details

• Extent: Seite(n): 331-338
• Language: Englisch
• Notes: Status: Postprint; begutachtet (peer reviewed)

References and Relationships

• Bibliographic citation: Journal of Public Health, 17(5)

Classification and Topics

• Subject: Sozialwissenschaften, Soziologie ; Medizin und Gesundheit ; Medizin, Sozialmedizin ; Gesundheitspolitik ; Rehabilitation

Contributors, Places and Time

• Event: Geistige Schöpfung
• (who): Zinzi, Paola ; Salmaso, Dario ; Frontali, Marina ; Jacopini, Gioia
• Event: Veröffentlichung
• (where): Deutschland
• (when): 2009

Further information

• DOI: https://doi.org/10.1007/s10389-009-0252-y
• URN: urn:nbn:de:0168-ssoar-203401
• Rights: GESIS - Leibniz-Institut für Sozialwissenschaften. Bibliothek Köln
• Last update: 21.06.2024, 4:27 PM CEST