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Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia

Ellis-Smith, Clare; Evans, Catherine J.; Murtagh, Fliss E.M.; Henson, Lesley A.; Firth, Alice M.; Higginson, Irene J.; Daveson, Barbara A.; BuildCARE, on behalf of

Authors

Clare Ellis-Smith

Catherine J. Evans

Lesley A. Henson

Alice M. Firth

Irene J. Higginson

Barbara A. Daveson

on behalf of BuildCARE



Contributors

Abstract

Background:
Symptom burden is common for long-term care residents with dementia which if untreated compromises quality of life. Measurement tools can support assessment of symptoms and problems but are not widely used in long-term care settings. We developed the Integrated Palliative care Outcome Scale for Dementia derived from the Palliative care Outcome Scale, Palliative care Outcome Scale–Symptom and Integrated Palliative care Outcome Scale.

Aim:
To examine the content validity, acceptability and comprehension of Integrated Palliative care Outcome Scale for Dementia for routine use in long-term care settings for people with dementia and to refine Integrated Palliative care Outcome Scale for Dementia.

Design:
A multi-method qualitative study consisting of focus groups, semi-structured interviews and cognitive interviews.

Setting/participants:
Three residential long-term care settings in London, UK. Focus group and semi-structured interview participants included caregiver staff, family, general practitioners and district nurses. Caregiver staff were sampled purposively for cognitive interviews.

Results:
A total of 26 respondents participated in the focus groups (n = 21) or semi-structured interviews (n = 5) and 10 caregiver staff completed cognitive interviews. Additional symptoms and problems included agitation, wandering, sleep problems, communication problems and diarrhoea. Refinements or lay terms were required to improve comprehension and consistency of item response for nausea, drowsiness, delusions/hallucinations, agitation, loss of interest, communication problems and interaction. A video presentation was required to support comprehension of instructions and assessment of verbally compromised residents.

Conclusion:
Integrated Palliative care Outcome Scale for Dementia is a comprehensive and acceptable caregiver-reported measure to detect symptoms and problems in dementia. It is suitable for caregiver staff without professional training as it has been refined and tailored to maximise caregiver expertise, ready for further psychometric testing.

Journal Article Type Article
Publication Date Jul 1, 2017
Journal Palliative Medicine
Print ISSN 0269-2163
Electronic ISSN 1477-030X
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 31
Issue 7
Pages 651-660
APA6 Citation Ellis-Smith, C., Evans, C. J., Murtagh, F. E., Henson, L. A., Firth, A. M., Higginson, I. J., …BuildCARE, O. B. O. (2017). Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliative medicine, 31(7), 651-660. https://doi.org/10.1177/0269216316675096
DOI https://doi.org/10.1177/0269216316675096
Keywords Dementia; Long-term care; Caregivers; Symptom assessment; Palliative care; Qualitative research; Outcome assessment
Publisher URL http://journals.sagepub.com/doi/10.1177/0269216316675096
Copyright Statement This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecomm...rg/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/...m/open-access-at-sage).

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Copyright Statement
This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).





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