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

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

Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study

Background:Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients.Aim:To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients.Design:A feasibility study using a pre–post uncontrolled design.Setting:Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in IrelandResults:Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients.Conclusion:Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population