A scoping review of global patterns in reporting race, ethnicity, nationality or religion in palliative care randomised controlled trials: Recommendations for transparency

Witham, Gary ORCID: https://orcid.org/0000-0002-8575-7533, Regier, Natalie ORCID: https://orcid.org/0000-0002-8575-7533, Abshire Saylor, Martha, Allgood, Sarah, Curriero, Samantha, Gray, Tamryn F., Gunes, Elifnur, Hansen, Bryan R., Levy, Reena, Nelson, Katie, Petchler, Claire M., Singer Cohen, Rebecca and Wright, Rebecca (2024) A scoping review of global patterns in reporting race, ethnicity, nationality or religion in palliative care randomised controlled trials: Recommendations for transparency. Palliative Medicine. ISSN 0269-2163 (In Press)

Accepted Version File not available for download. Available under License In Copyright. Download (679kB)

Abstract

Background: Though randomised controlled trials of non-pharmacological palliative care interventions have shown positive outcomes, findings are often generalized with limited consideration for the impact of the influence of race, ethnicity, nationality, or religion on said outcomes. Aim: To identify trends and gaps in global reporting of racial, ethnic, nationality, and religious demographics in non-pharmacological palliative care randomized controlled trials. Design: We conducted a scoping review guided by the Joanna Briggs methodology, Data Sources: Global randomized controlled trials published in English, between 1999-2021 extracted from databases: Cochrane, PubMed and Scopus. Inclusion criteria were non-pharmacological palliative care interventions for people with serious conditions reporting on one or more of the demographics of race, ethnicity, nationality, or religion. Results: Our review included 131 (44%) articles published from 19 countries, predominantly the USA (n=84, 64%). Most studies focused on cancer (n=71, 54%) in inpatient settings (n=85, 64%). Race was the most commonly reported demographic (n=93, 70%), followed by ethnicity (n=54, 41%), religion (n=46, 35%), nationality (n=20, 15%). Within racial reporting, 86 (92%) indicating a majority White/Caucasian sample. Only 14 (10%) articles provided context connecting participant demographics to intervention outcomes. Demographic data was discussed only as a limitation to generalizability in 18 cases (41%). Conclusions: Improving greater transparency in study reporting of social and historical context about population demographics, including specific demographic data collected, may better identify unmet palliative needs, facilitate cross-cultural interpretation, and improve adaptation and implementation of non-pharmacological palliative care interventions.