Support interventions for patients with primary high-grade brain tumours and their relatives: a scoping review

PURPOSE: The aim of this review was to systematically map support interventions for patients with primary high-grade brain tumours and their relatives. METHODS: Searches were conducted in electronic databases and reference lists of included articles. Articles published between 2013 and 2025 were included. Extracted data was condensed, compared, and categorised. RESULTS: The final sample comprised 34 articles, including 15 (44%) full-scale and 19 (56%) feasibility/pilot studies. Interventions included individualised support (n = 11), care planning (n = 6), rehabilitation (n = 6), mind-body care (n = 6), and education (n = 5). They targeted patients (n = 5; 15%), relatives (n = 11; 32%), or both (n = 18; 53%). Full-scale studies reported positive effects in primary outcomes for both patients and relatives. Among patients, improvements were noted in symptoms, cognition, communication, psychosocial functioning, and self-care. Relatives showed improved health-related quality of life and psychosocial outcomes, with increased mastery and preparedness, though decision-making needs remained. Timely and repeated outreach was valued. For both patients and relatives, interventions enhanced quality of life made patients feeling understood, prepared, strengthened, and more confident in decision-making during consultations. Patients and relatives preferred active involvement in care, decisions, and information, with particular emphasis on encouraging hope. Caregiver mastery remained high, and structured, cohesive, and well-facilitated support groups were most valued. All feasibility and pilot studies reported positive outcomes. CONCLUSION: Support interventions for patients with primary high-grade brain tumours and their relatives show promising results with positive effects on outcome measures across different areas. Despite their potential advantages, many interventions are still in early implementation phases.