Abstract
BACKGROUND: Quantifying palliative care needs and whether they are met is essential for effective service planning and provision. Estimates of palliative care needs are widely reported but less is known about unmet needs, with no accepted definition of this construct or guidance on how to measure it. AIM: To investigate how unmet palliative care needs for adults with advanced life-limiting illness have been defined, measured, and reported in the evidence. DESIGN: Scoping review following the Joanna Briggs Institute guidelines: protocol registered on Open Science Framework (10.17605/OSF.IO/M8DHA). DATA SOURCES: In October 2024, we searched MEDLINE, EMBASE, CINAHL, and PsycINFO for quantitative and mixed-methods studies published after 2000, with backward and forward citation and manual searching of grey literature. Data on definitions, measurement and reporting of unmet needs were extracted, charted, and summarised narratively using inductive content analysis and framework synthesis. RESULTS: Seventy studies were included: 9 reviews and 61 primary evidence studies from 16 countries. Only 11 (16%) studies explicitly defined unmet palliative care needs. We identified three approaches to measurement of unmet palliative care needs: (1) prevalence of symptoms and concerns; (2) access to services (e.g. specialist palliative care); and (3) sufficiency of service provision to resolve symptoms and concerns. CONCLUSIONS: This novel review identifies a lack of consensus in defining, measuring and reporting unmet palliative care needs. We propose three distinct approaches to conceptualising unmet palliative care needs and outline their strengths and limitations. Practical guidance on their use is provided to support researchers, clinicians, and policymakers in selecting appropriate approaches for assessment and reporting.