Abstract
Patients with Progressive Idiopathic Fibrotic Interstitial Lung Diseases (PIF-ILD) have a median survival of 3 years. Research into the palliative care needs of these patients is limited. The Hospital2Home (H2H) case conference (CC) is a new multi-professional, patient centred intervention at the end-of-life. Individualised care plans provide a comprehensive Palliative Care assessment with follow up. Research into use of H2H in the UK or the non-malignant setting has not been carried out.This thesis describes a study which aimed to develop and evaluate H2H in PIF-ILD. The study followed the Medical Research Council’s (MRC) guidance on developing and evaluating complex interventions, focussing on the Development and Feasibility/Piloting stages and using a sequential mixed methods study design. The Development stage included a systematic review which showed a paucity of interventions to improve symptoms and quality of life (Qol). Qualitative in-depth interviews of 18 patients, informal caregivers and HPs showed that patients had uncontrolled symptoms which profoundly impacted on every part of patients’ and informal caregivers’ lives. There was good understanding of the terminal nature of PIF-ILD but a poor understanding of prognosis. All participants were positive about H2H.
The adapted H2H model was trialled in a fast-track Randomised Controlled Trial (RCT) forming the Feasibility/Piloting stage. 122 patients were screened of which 53 were randomised. The primary outcome was mean change in Palliative Care Outcome Score (POS) at 4 weeks- Fast-Track -5.7 (7.5) vs Waiting List -0.4 (8.0) p=0.02. There were also improvements in patient Qol, anxiety and depression scores and informal caregiver anxiety and depression scores. The intervention and study design were largely both feasible and acceptable.
Findings from this PhD suggest that H2H may improve palliative care needs, Qol and anxiety and depression in PIF-ILD. Further research is needed to evaluate these results in a larger Evaluation trial.
| Date of Award | 2016 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Jonathan Koffman (Supervisor) & Irene Higginson (Supervisor) |