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) 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.

Family caregiver constructs and outcome measures in neuro-oncology: A systematic review.

Background: As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed. Methods: All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumor patients were eligible. Electronic databases PubMed/Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full-text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result. Results: Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996 and 2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model (CGHM) categories, namely, caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used >2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies. Conclusions: Neuro-oncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly.

Healthcare professional experiences of making surgical oncology decisions and delivering COVID-19 safe care: a qualitative study.

BACKGROUND: The COVID-19 pandemic was declared a public health emergency in March 2020. The British National Health Service (NHS) redirected medical attention towards prioritising COVID-19-positive patients in favour of less urgent care affecting cancer service provision. This study aims to explore experiences of healthcare professionals (HCPs) and investigate the impact of COVID-19 on decision-making in surgical oncology. METHODS: HCPs with experience in surgical oncology were recruited from January 2021 to June 2021. Qualitative semi-structured telephone interviews were conducted and transcribed verbatim. Interviews were conducted until data saturation. Thematic analysis was used to identify frequently discussed themes. RESULTS: A total of 13 participants were interviewed, identifying three main pandemic-related challenges: multi-disciplinary team (MDT) processes - telephone pre-operative assessments impoverished information elicited from in-person examination; service delivery - personal protective equipment (PPE) added complexity to surgical practice and more difficult communication; work routines - increased workload to deliver COVID-safe remote practices and decreased training time. CONCLUSIONS: COVID-19 influenced cancer service provision with teams making significant changes to ensure that effective clinical reasoning and surgical standards were maintained. Managing safe COVID-19 surgical care impacted daily-life and work stressors. Post crisis, service delivery is looking to integrate telemedicine within care whilst reducing its impact on workload and in-practice training.