Conectar
Patient and public involvement (PPI) is increasingly embedded in stroke and aphasia participatory research, enhancing relevance and inclusivity. While the benefits of PPI are well-documented, the costs, both direct (eg, honoraria, travel, accessibility materials) and indirect (eg, time, administrative burden, emotional labour), remain poorly reported. This scoping review aims to (1) identify and categorise direct and indirect costs of PPI in stroke research, (2) examine how these costs are defined, reported or implied, (3) map cost-related barriers and facilitators and (4) expose evidence gaps to inform the Mapping the Economic and Social Tangible and Emotional Resources of Patient and Public Involvement (MASTER-PPI) framework.
Following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines, we will search Medline, PUBMED, Embase, CINAHL, APA PsycINFO, Scopus and Web of Science, as well as grey literature (NIHR INVOLVE, Horizon Europe, non-governmental organisation (NGO) reports). Eligible studies include those reporting or implying direct or indirect costs of PPI in stroke research. Two reviewers will independently screen and extract data, which will be synthesised descriptively and thematically. Findings will be aligned with the MASTER-PPI framework.
Ethical approval is not required. The findings will be disseminated through peer-reviewed journal publications, conference presentations, social media posts in lay language and policy briefs tailored for NGOs and funders.
This protocol is registered with the Open Science Framework (OSF) (https://doi.org/10.17605/OSF.IO/VM9ZU).
Limited literature has focused on people with cancers' preference for care providers in scenarios where trade-offs may have to be made.
To report the results of a comprehensive search and synthesis of discrete choice experiments or best-worst scaling studies (± willingness to pay estimates) in scenarios involving cancer nurses, with a focus on: (1) preferred care provider; and (2) relative importance of attributes of care provision for people with cancer.
A search was conducted across: CINAHL, Cochrane Central Register of Controlled Trials, EconLit, Medline, PsycINFO, Scopus, Web of Science Core Collection, and Google Scholar for discrete choice experiments published between January and July 2025. Data were extracted and appraised by two authors. Results were narratively synthesised.
Of 461 studies screened, 11 were included, published in Australia (n = 3), UK (n = 3), and China (n = 5) including people with breast (n = 4), gastric (n = 4), prostate (n = 1), or mixed cancers (n = 2). In six studies exploring scenarios of follow-up care (i.e., survivorship/surveillance), cancer medical specialists were the preferred care provider, followed by cancer nurses, and then general practitioners. In four of the five studies of supportive care scenarios (i.e., diet and exercise advice, anxiety and depression screening), cancer nurses were the preferred care provider, followed by allied health professionals, then cancer medical specialists. The highest WTP estimate was $US226.15 for a medical specialist to provide follow-up care. For supportive care, the highest WTP was $US137.52 for a cancer nurse to provide diet-based lifestyle advice post-treatment for breast cancer.
Cancer nurses are highly valued by people with cancer, particularly for supportive care provision. Opportunities exist for an increase in cancer nurse specialists with expanded scope of practice, to support the preference of people with cancer to have cancer medical specialists, or cancer nurse specialists provide expert cancer follow-up care.
Employees of a cancer patient advocacy group were involved in the design of the study, interpretation of the data, and the preparation of the manuscript. No patients were involved in this work. However, this systematic review prioritized patient voices by including studies that reported on the preferences of people with cancer.
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