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

Abstract

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) Communication practice and preferences. 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) What matters most. 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) Decision-making. 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) Impact of COVID-19. 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.

Shared decision-making in palliative cancer care: A systematic review and metasynthesis

“…Patients face decisions in a stressful situation where they are emotionally overwhelmed, and their abilities to receive information and be involved in decisionmaking are affected by strong emotions, a feeling of urgency and fear of decisional regret. [37][38][39][40][41][42][43] These feelings can influence patients' wish for and ability to participate in shared decision-making, as Lape et al 40…”

“…37,39,43,44,47,48,53,54 Physicians' perceptions of patients' wishes for treatment might also make it difficult to suggest no treatment, and physicians could provide treatment plans without addressing existing uncertainty and treatment limitations, sometimes motivated by a wish to meet the patients' expectations for treatment and to preserve hope. 37,41,43,47,55 In line with the limited perception of choices, some studies showed limited discussions of pros and cons of different options. 37,40,41,44,55,56 Medical specialists provided information on the suggested option, and at the same time tried to adapt the information to patients' individual needs.…”

“…37,41,43,47,55 In line with the limited perception of choices, some studies showed limited discussions of pros and cons of different options. 37,40,41,44,55,56 Medical specialists provided information on the suggested option, and at the same time tried to adapt the information to patients' individual needs. 42,44 For example, a doctor in McCullough et al 43 commented (p. 486):…”

“…Physicians perceive themselves as responsible, 37,42,44,48 nurses experience physicians as having the leading role, 59,61 and people with cancer and their informal carers rely on and trust physicians to be the expert and know what is in their patients' best interests. [38][39][40][41]46,[48][49][50]56,57 Gregersen et al 46…”

Palliative care and neuro-oncological care: Better integration is needed

“…In the Februari edition of Palliative Medicine two studies are published about patients with a glioblastoma. 2 Boele et al interviewed patients with a glioblastoma, caregivers, and healthcare professionals about their experiences and preferences around glioblastoma treatment communication. They conclude that effective communication, building trusting relationships, maintaining a sense of control, and being well-informed are identified as critical by patients, caregivers, and healthcare professionals.…”