Introduction Patients with advanced heart disease have a poor prognosis despite optimal disease-focused therapy, and rarely receive coordinated holistic assessment and care planning.
Aim(s) and method(s) This project integrated professional and users' views into designing a complex intervention for people with advanced heart disease. The trial combines holistic needs assessment initiated by cardiology specialists with anticipatory care planning and nurse-led care coordination in the community. In the development phase, baseline interviews with healthcare professionals (11) and 2 focus groups comprising 12 patients and 5 carers were conducted. Data were transcribed and analysed for key themes important to the rationale and design of the proposed trial. Participants refined an established, patient-held “Future Care Plan”. Recommendations about integration into routine practice informed the final study design.
Results Patients and carers highlighted fragmentation of services, difficulty accessing specialist care and inadequate time and opportunities for future planning. Inclusion of a generic patient-held plan with prompts about current and future priorities offered as part of ongoing support from key professionals was welcomed. Professionals highlighted challenges related to uncertainty of prognosis, explaining mortality-risk to patients, starting to introduce palliative care goals and continuity of care within and across settings. They endorsed patient selection based on prognostic and clinical indicators combined with specialist-initiated care planning continued in primary care and linked to existing patient record systems.
Conclusion(s) A diverse group of patients, carers and healthcare professionals identified specific concerns about improving care for people with advanced heart disease and continue to inform a feasible, responsive randomised trial that is now recruiting patients.
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