Non-Profit Organizations Advocating for Head and Neck Cancer Patients: A Scoping Review.

Purpose: To identify and characterize non-profit organizations (NPOs) from English-speaking countries providing advocacy to individuals with head and neck cancer (HNC) and critically analyze the multifaceted roles played by these NPOs for patients, caregivers, healthcare professionals, and researchers.

Methods: A scoping review was conducted through PubMed, Scopus, EMBASE, Web of Science, Google Scholar, ProQuest, and open databases. The data collected on the NPOs were: information on origin, founder background, cancer types addressed, mission, and information and services offered.

Results: Twenty-five NPOs were identified, predominantly from the US (n = 10/40%) and UK (n = 10/40%). Most NPOs (n = 16/64%) were founded by survivors and/or their families. The websites provided diverse information, with over 84% (n = 21) covering risk factors, signs, symptoms, and screening/diagnosis. Common services included educational resources, newsletters, and patient support groups. Legal advice was also provided but less frequently. All NPOs promoted fundraising; the majority promoted awareness events, and 40% (n = 10) offered research grant opportunities.

Conclusions: NPOs are vital advocates for HNC patients, offering community support and empowerment. Healthcare professionals, by being aware of NPOs and their work, can enhance patient support. Additionally, researchers should view NPOs as essential sources for patient and public engagement, which is increasingly valued by funding agencies.