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

Ending homelessness among people with mental illness: the At Home/Chez Soi randomized trial of a Housing First intervention in Toronto

<p>Abstract</p> <p>Background</p> <p>The At Home/Chez Soi (AH/CS) Project is a randomized controlled trial of a Housing First intervention to meet the needs of homeless individuals with mental illness in five cities across Canada. The objectives of this paper are to examine the approach to participant recruitment and community engagement at the Toronto site of the AH/CS Project, and to describe the baseline demographics of participants in Toronto.</p> <p>Methods</p> <p>Homeless individuals (n = 575) with either high needs (n = 197) or moderate needs (n = 378) for mental health support were recruited through service providers in the city of Toronto. Participants were randomized to Housing First interventions or Treatment as Usual (control) groups. Housing First interventions were offered at two different mental health service delivery levels: Assertive Community Treatment for high needs participants and Intensive Case Management for moderate needs participants. Demographic data were collected via quantitative questionnaires at baseline interviews.</p> <p>Results</p> <p>The effectiveness of the recruitment strategy was influenced by a carefully designed referral system, targeted recruitment of specific groups, and an extensive network of pre-existing services. Community members, potential participants, service providers, and other stakeholders were engaged through active outreach and information sessions. Challenges related to the need for different sectors to work together were resolved through team building strategies. Randomization produced similar demographic, mental health, cognitive and functional impairment characteristics in the intervention and control groups for both the high needs and moderate needs groups. The majority of participants were male (69%), aged >40 years (53%), single/never married (69%), without dependent children (71%), born in Canada (54%), and non-white (64%). Many participants had substance dependence (38%), psychotic disorder (37%), major depressive episode (36%), alcohol dependence (29%), post-traumatic stress disorder (PTSD) (23%), and mood disorder with psychotic features (21%). More than two-thirds of the participants (65%) indicated some level of suicidality.</p> <p>Conclusions</p> <p>Recruitment at the Toronto site of AH/CS project produced a sample of participants that reflects the diverse demographics of the target population. This study will provide much needed data on how to best address the issue of homelessness and mental illness in Canada.</p