Abstract
BackgroundMeasuring 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.MethodsSingle 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.ResultsIn 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.ConclusionsModifications 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.
Highlights
Measuring service use and costs is an important aspect of service delivery evaluation
When care provided by family carers is included in cost analyses, hospital costs are replaced by
This paper reports the findings from a pilot study that sought to adapt and test the AHCR for gathering information on palliative care costs in the United Kingdom (UK) as currently no suitable tool exists in the UK setting
Summary
Measuring service use and costs is an important aspect of service delivery evaluation. When care provided by family carers (informal care) is included in cost analyses, hospital costs are replaced by Holdsworth et al Pilot and Feasibility Studies (2018) 4:141 the primary data collection methods, only one instrument, the Ambulatory and Home Care Record (AHCR), has been found comprehensive in coverage and validated [10, 11]. The AHCR was first developed in Canada in 1997 to prospectively capture ambulatory and home services for economic evaluations and has been validated with cystic fibrosis patients [12] It has subsequently been used in Canada for assessing the private costs of home care [13] and in studies of palliative care that include unpaid (informal) caring costs [14,15,16]. A lack of information on end-of-life care costs and a need for more research on the resource implications of alternative models of care has been identified to help establish cost-effective service configurations and to inform service commissioning [17,18,19,20,21,22,23]
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