Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals.

BACKGROUND

Patients with glioblastoma have a poor prognosis and treatment is palliative in nature from diagnosis. It is therefore critical that the benefits and burdens of treatments are clearly discussed with patients and caregivers.

AIM

To explore experiences and preferences around glioblastoma treatment communication in patients, family caregivers and healthcare professionals.

DESIGN

Qualitative design. A thematic analysis of semi-structured interviews.

SETTING/PARTICIPANTS: A total of 15 adult patients with glioblastoma, 13 caregivers and 5 healthcare professionals were recruited from Leeds Teaching Hospitals NHS Trust.

RESULTS

Four themes were identified: (1) . Risks and side-effects of anti-tumour treatments were explained clearly, with information layered and repeated. Treatment was often understood to be 'the only option'. Understanding the impact of side-effects could be enhanced, alongside information about support services. (2) . Patients/caregivers valued being well-supported by a trusted treatment team, feeling involved, having control and quality of life. Healthcare professionals similarly highlighted trust, maintaining independence and emotional support as key. (3) . With limited treatment options, trust and control are crucial in decision-making. Patients ultimately prefer to follow healthcare professional advice but want to be involved, consider alternatives and voice what matters to them. (4) . During the pandemic, greater efforts to maintain good communication were necessary. Negative impacts of COVID-19 were limited, caregivers appeared most disadvantaged by pandemic-related restrictions.

CONCLUSIONS

In glioblastoma treatment communication, where prognosis is poor and treatmentwill not result in cure, building trusting relationships, maintaining a sense of control and being well-informed are identified as critical.