Abstract
BACKGROUND: Despite growing recognition of the importance of identifying unmet needs in palliative care, there remains no clear, operational definition of what constitutes unmet palliative care needs. This gap hinders service planning, policy development and equitable access to care. We aimed to explore priorities for understanding and measuring unmet palliative care needs with stakeholders, including people with lived and professional experience. METHODS: Three online workshops using a modified nominal group technique with people with lived experience of life-limiting illness (as patients or informal carers) and professionals in palliative care. Separate workshops were held for each group to independently identify elements that capture the concept of unmet palliative care needs, followed by a combined workshop to refine and consolidate findings. Workshop data (scribe notes) were analysed using content analysis. Participants then completed an online ranking exercise to prioritise key elements, which was analysed descriptively. RESULTS: Twenty-eight individuals participated, including 11 people with lived experience (two patients and nine informal carers) and 17 with professional experience. In the final workshop, participants agreed on a list of 27 elements capturing unmet palliative care needs, which were conceptualised in two main ways: (1) service-related (e.g. lack of a single point of contact to access support, including out-of-hours), and (2) those related to symptoms and concerns, (e.g. pain not assessed and managed). Twenty-three participants completed the ranking exercise. Highly prioritised elements included lack of timely and holistic assessment of symptoms or suffering, inability to access services needed, lack of coordination, and continuity of care. Other priorities for understanding and measuring unmet palliative care needs were lack of timely follow-up to address symptoms, lack of skilled support, and lack of respect, dignity and empathy. CONCLUSIONS: This study is the first to engage both individuals with lived experience and professionals in conceptualising unmet palliative care needs. Stakeholders prioritised two broad aspects important for capturing unmet palliative care needs: symptom-related concerns and service-related issues. These findings provide a foundation for developing stakeholder-informed tools to assess unmet palliative care needs that are feasible for use across diverse care settings and populations.