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

The aim of this review was to systematically map support interventions for patients with primary high-grade brain tumours and their relatives.

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.

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.

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.