Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilization data from family carers in the UK: a pilot study

Background Measuring service use and costs is an important aspect of service delivery evaluation. In end-of-life care, there is heavy reliance on care by family/friends (informal carers) and this should be reflected in the total cost of care alongside formal services. The Ambulatory and Home Care Record, developed in Canada, is both comprehensive in coverage and validated for collecting data on formal and informal caring. This study aimed to adapt and pilot the Ambulatory and Home Care Record questionnaire for use in the UK within a study evaluating a new palliative care service. The objectives were to test if family carers could be recruited and assess acceptability and usability of data gathered. Methods Single cohort pilot study using a structured telephone questionnaire carried out every other week. Family carers of patients newly added to the palliative care register or referred to hospice services in the South East of England were invited to participate by mail. Volunteers remained in the study for a maximum of six interviews or until the patient died. Results In total, 194 carers were invited by mail to participate in the study, of which 23 (11.8%) completed at least one interview and 16 (8.2%) completed all possible interviews. Recruitment to the study was lower than anticipated, but most participants seemed to find the interviews acceptable. The modified questionnaire produced usable and relevant data for an economic evaluation of formal and informal caring costs. Conclusions Modifications are needed to the process of recruitment as a postal recruitment strategy did not have a high response rate. The Ambulatory and Home Care Record has proved a viable tool for use in the UK setting, with a few minor modifications, and will be used in a larger study comparing hospice models. Electronic supplementary material The online version of this article (10.1186/s40814-018-0332-2) contains supplementary material, which is available to authorized users.

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PID https://www.doi.org/10.1186/s40814-018-0332-2
PID pmid:30140443
PID pmc:PMC6098633
URL http://epubs.surrey.ac.uk/850850/
URL http://link.springer.com/article/10.1186/s40814-018-0332-2
URL https://doaj.org/toc/2055-5784
URL http://link.springer.com/content/pdf/10.1186/s40814-018-0332-2.pdf
URL http://link.springer.com/article/10.1186/s40814-018-0332-2/fulltext.html
URL http://dx.doi.org/10.1186/s40814-018-0332-2
URL https://kar.kent.ac.uk/68776/
URL https://kar.kent.ac.uk/68776/1/AHCR%20pilot%20study%20%28003%29.pdf
URL https://dx.doi.org/10.1186/s40814-018-0332-2
URL http://europepmc.org/articles/PMC6098633
URL https://pilotfeasibilitystudies.biomedcentral.com/track/pdf/10.1186/s40814-018-0332-2
URL https://academic.microsoft.com/#/detail/2887132285
URL https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-018-0332-2
URL https://link.springer.com/article/10.1186/s40814-018-0332-2
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Access Right Open Access
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Author Laura M. Holdsworth, 0000-0003-0611-2700
Author Heather Gage
Author Peter Williams
Author Claire Butler
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Collected From Europe PubMed Central; PubMed Central; Surrey Research Insight; Datacite; UnpayWall; DOAJ-Articles; Crossref; Microsoft Academic Graph; CORE (RIOXX-UK Aggregator)
Hosted By Europe PubMed Central; Surrey Research Insight; Kent Academic Repository; Pilot and Feasibility Studies
Publication Date 2018-08-18
Publisher Springer
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Country United Kingdom
Format application/pdf; text
Language English
Resource Type Other literature type; Article; UNKNOWN
keyword R
system:type publication
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Source https://science-innovation-policy.openaire.eu/search/publication?articleId=dedup_wf_001::b78b7c840f1936552c4a8478b1f143d9
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Last Updated 26 December 2020, 09:52 (CET)
Created 26 December 2020, 09:52 (CET)