'It feels it's wasting whatever time I've got left': A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.

BACKGROUND: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. AIM: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. DESIGN: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. SETTING/ PARTICIPANTS: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. RESULTS: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients' and carers' emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. CONCLUSION: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable.

OBJECTIVE: Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer. METHODS: Qualitative longitudinal methods will examine how support needs change over time in relation to self-management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One-off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self-management support. CONCLUSION: The key output will be practice recommendations in relation to self-management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.