Defining and measuring unmet palliative care needs among people with life-limiting illness: a scoping review of international evidence

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.

Data sources

In October 2024, we systematically searched MEDLINE, EMBASE, CINAHL, and PsycINFO for quantitative and mixed-methods studies published after 2000. Additional backward and forward citation and manual searching of grey literature sources were performed. Data on the definitions, measurement and reporting of unmet needs were extracted and charted and summarised narratively using inductive content analysis and framework synthesis.

Results

Seventy studies were included: nine reviews and 61 primary evidence studies from 16 countries. Only 11 (16%) studies explicitly defined unmet palliative care needs, usually as a discrepancy between required and received care. We identified three approaches to measurement: of unmet palliative care needs: 1) symptoms and concerns ; 2) access to services ; and 3) sufficiency of service provision to resolve symptoms and concerns .

Conclusions

This novel review highlights a lack of consensus regarding the definition, measurement and reporting of unmet palliative care needs. Three approaches identified in the review emphasise different aspects of unmet needs: their strengths and limitations are discussed and guidance on their use is provided for various end-users.

What is already known about the topic?

• Prevalence of palliative care needs are widely reported in research and policy, but how unmet needs are defined and measured is less well understood.

What this paper adds

• Few studies provide a clear, detailed definition of unmet palliative care needs.

• We identify three main approaches to measuring unmet needs in palliative care research, by quantifying: 1) Symptoms and concerns; 2) Access to services; and 3) Sufficiency of service provision to resolve symptoms and concerns.

• There is little focus on non-cancer populations and few reports of involvement of patients and carers in studies measuring unmet palliative care needs.

Implications for practice, theory or policy

• Methodological strengths and limitations of the three identified approaches to measuring unmet palliative care needs are discussed.

• To address the knowledge gaps identified, recommendations for reporting of definitions and how these are operationalised are provided.