The communication of a high-grade glioma diagnosis- patients' reflections and perspectives based on a study-specific questionnaire.

PURPOSE

To analyze the communication setting of a high-grade glioma (HGG) diagnosis, patients' emotional responses and their needs of further support and information as well as education about the disease to optimize neuro-oncological treatment.

METHODS

In a single-center survey, a 10-item questionnaire was developed to analyse the setting of communication, emotional aspects, needs and impression of education or information in patients with HGG between March and May of 2024. Three questions focused on the conversation setting, two on education, one on emotional aspects, and four on patients' support. Descriptive statistics and Chi Square tests were used to analyze these multidimensional items.

RESULTS

Patients' age ranged from 27 to 77 years (median 55), 14 patients (28%) were female, and 36 (72%) were male. Most patients (62%, 31/50) received support when informed of their diagnosis, primarily from relatives (42%, 21/50), especially life partners (22%, 11/50). A majority (64%, 32/50) were satisfied with the initial information received, while 32% (16/50) preferred additional details. Less than half of the patients (21/50, 42%) used further possibilities for support. Patients indicated their need of further information in 14% (7/50), additional support in 12% (6/50, 12%) and extended conversation time in 10%.

CONCLUSION

Each patient should receive individualized medical consultations to adequately communicate the HGG diagnosis and treatment requirements. Discussions about treatment options and recommendations should involve patients' support systems, including family members or close friends. Despite the availability of psycho-oncological support during hospitalization, ongoing community support for patients and caregivers is essential and should be promoted early. Continuous improvements in patient education, accessibility, and caregiver support will enhance coping, resilience and caregivers' mastery in neuro-oncology.