The feasibility of research in cancer patients close to death and the impact on evaluating a complex intervention
Creators: name: Smith, Clare
Publisher: name: Imperial College London
Year: 2016

description: In the UK approximately half of all cancer patients die in hospital despite evidence that most would prefer to die at home. Research into complex interventions (CIs) at the end-of-life (EoL) is limited. The Hospital2Home CI (H2H) is a patient centred, multidisciplinary service that includes a case conference (CC) and individualised care planning. The aim of H2H is to seamlessly transfer care from the cancer centre to the community where patient and their families want to be. Research into H2H in cancer patients has not been carried out. The aim of this thesis was to determine the feasibility of evaluating H2H in cancer patients at the end of life. This thesis follows the Medical Research Council (MRC) framework for developing and evaluating CIs. It incorporates a mixed methods quasi-experimental design to evaluate the study design feasibility, intervention acceptability and to identify any potential benefits of H2H. It also includes a retrospective study of factors influencing place of death (FIPD), and a bereavement study of carer satisfaction with inpatient deaths. These provide context to H2H through providing learning about the wider end of life care experience of patients treated at a cancer centre. The mixed methods feasibility study shows it is feasible and acceptable to enrol patients in the last few months of life and their carers in longitudinal research. It highlights key learning for studies involving participants at the end of life (EoL); multiple longitudinal research contacts, as frequently as every 2 weeks, are acceptable to patients and their carers, contact from the same researcher throughout is advocated to ensure low withdrawal rates, Preferred Place of Death (PPD) as a single primary outcome is not recommended due to high levels of missing data and reliance on carer proxy responses for patient symptom burden when the patient is too unwell to complete the assessment may be limited by similar carer drop out close to patient death. 3 In total, 184 patients were invited to participate in the feasibility study 83 (45%) were recruited with 43 carers. The primary outcome tested during this feasibility study was the achievement of PPD. Unadjusted analysis showed H2H 68.8% achieved PPD, Comparator group 47.8% achieved PPD. Potential benefits were also seen in symptom burden, QoL and satisfaction. .The retrospective study of FIPD observed community palliative care (CPCT) involvement and H2H were both independently associated with an increased likelihood of dying at home (CPCT OR 2.36 (1.68-3.31), H2H OR 1.97 (1.31-2.96). The bereavement study showed high levels of satisfaction with inpatient EoL care (Mean Famcare Score 81.7). Qualitative interviews of 8 patients and 15 health care professionals (HCPs) observed that transition of care to community teams had important meaning, specifically loss of treatment, friendship and trust. Whilst patient participants were positive about the service, HCPs had concerns about community knowledge and service provision the views of community professionals and informal carers now need to be explored The findings from this feasibility study provide key learning for the conduct of EoL care research. H2H is acceptable to patients with preliminary data suggesting potential benefits that require further evaluation in a definitive clinical trial.