ArticleCommunications medicine2025
Development of the SAVE study protocol to use lived experience to assess the value of serious health-related suffering and palliative care.
Article in Communications medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSuffering generated by life-limiting or life-threatening conditions is a complex phenomenon inextricably linked with human experience. Most of this suffering can be ameliorated with adequate access to palliative care that is unavailable in much of the world, especially low-resource settings. Exploration of the definitional boundaries of and needs pertaining to suffering due to illness suggests that patients and families assign specific importance to the compassionate and supportive aspects of palliative care. However, the intrinsic and personal value of suffering alleviation has not been systematically studied in low- and middle-income countries, where it is direly needed.
methodsSAVE (Suffering Alleviation and the Value of Experiential knowledge) protocol is developed based on deliberation of a global expert group on limitations of quantitative measurement of suffering, literature reviews, and piloting in two countries - Barbados and Mexico - to support evidence generation that is anchored by lived experience.
resultsThe SAVE study protocol presents a methodological blueprint for study design, implementation, and analysis to conduct research on the value assigned to alleviation of serious health-related suffering by multiple stakeholders, especially patients and non-professional caregivers. The protocol incorporates an instrument for data collection. It also provides guidance on qualitative approaches and their importance to understanding lived experience to strengthen health system performance assessment.
conclusionsExploration of suffering based on personal experience is primarily focused on high-income contexts and/or clinical care management. Evidence generated using the protocol, which focuses on responsiveness, can advance development of people-centered metrics and bolster the investment case to equitably expand access to palliative care worldwide. Importantly, it can shift priority-setting and practice towards high-value healthcare.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.