Short summary

Integrating palliative care earlier in the illness trajectory and to patients with a variety of diagnosis has proven difficult. This study is a mixed methods prospective intervention study aiming at creating an early intervention with extensive involvement of patients and their families to enable coordination of integrated palliative care across sectorals and disciplins.

Rationale

Historically the timing and scope of palliative care was confined to end-of-life care to patients with cancer. Palliative care has been proposed to be integrated alongside usual treatment and extended beyond patients dying to support bereaved caregivers. The effects of integrated palliative care are demonstrated in studies showing that patients with a varity of diagnosis, benefit from palliative care earlier in the illness trajectory. However, palliative care has not been fully integrated alongside usual treatment, and is still mainly being considered at end-of-life for patients with cancer. The lack of succesfull integration could potentially be ascribed to the complex processes of cross-sectoral and multidisciplinary collaboration. In a participatory design proces we aim to explore coordination of palliative care through cross-sectoral multidisciplinary family-centered consultations in patients with chronic obstructive pulmonary disease or incureable and life-threatening lung cancer and their families. The overall aim of this study is to design and evaluate a model for cross-sectoral multidisciplinary family-centered consultations in palliative care (FAM-PC).

Description of the cohort

The participants of this study are adults living with COPD or incurable and life-threatening lungcancer and their caregivers. Participants are associated the Departments of Oncology or Respiratory Medicine at OUH. Participants also include healthcare professionals: physicians responsible for treatment and follow-up in the secondary healthcare setting (oncologists and pulmonologists), the district nurses and physicians (general practicioners) responsible for treatment and follow-up in the primary healthcare setting, and physicians working at the Palliative Care Unit. The participants for the qualitative parts of the study are purposively selected to ensure maximal variation in gender, age, civil status, education level, caregiver relation, diagnosis and time since diagnosis.

Data and biological material

Field observations, interviews and workshop will result in the design and feasibility testing of FAM-PC HRQoL, family domains, experience across healthcare sectors from the perspective of the patient will be explored through a survey. The caregivers emotional health and well-being, lifestyle, support and impact, selfcare, financial wellbeing is also explored in a survey.

Collaborating researchers and departments

Department of Oncology, Odense University Hospital

Department of Respiratory Medicine, Odense University Hospital