Lung cancer survivorship: patients' and carers' views of after care

Abstract

Introduction and aims Evidence for the management of patients after treatment is limited and particularly so for patients with advanced cancer. There is little empirical evidence to establish best practice in the after care of lung cancer patients. The aim of this study was to develop an understanding of patients' and carers' views of their aftercare and to integrate these into a new intervention.

Methods A qualitative approach was taken using the principles of grounded theory. 35 interviews were conducted with patients and carers, participants had a range of histological diagnoses and stage of cancer and all treatment options were included in the sampling strategy.

Results The period after treatment was highlighted as a difficult time for participants with anxiety and uncertainty after the ‘treadmill’ of treatment. Follow-up appointments provided significant reassurance about the patients' condition, which participants felt was best assessed by x-ray. Despite often poor prognosis the focus was to ‘get back to normal’ and live life to the full. Participants highlighted a lack of appropriate information after treatment, specific information about long term effects of treatment, symptoms and disease progression/recurrence. Transitions between teams were important concerns which led to worries about rapid access back to treatment/specialists.

Conclusion Patient and carer preferences should be incorporated into the development of interventions; they have revealed important issues that impact on the day-to-day lives of people living with lung cancer, specifically, targeted information focusing on aftercare issues, care planning and identification of key contacts to manage care and transitions.