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

[journal article]

Zinzi, Paola; Salmaso, Dario; Frontali, Marina; Jacopini, Gioia

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Please use the following Persistent Identifier (PID) to cite this document:http://nbn-resolving.de/urn:nbn:de:0168-ssoar-203401

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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 (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.
Keywords rehabilitation
Classification Health Policy; Medicine, Social Medicine
Free Keywords Huntington's disease; Postal survey; Patient and caregiver perspective; Health-care research
Document language English
Publication Year 2009
Page/Pages p. 331-338
Journal Journal of Public Health, 17 (2009) 5
DOI http://dx.doi.org/10.1007/s10389-009-0252-y
Status Postprint; peer reviewed
Licence PEER Licence Agreement (applicable only to documents from PEER project)