Aim: Oesophagectomy with pre-operative chemotherapy with/without radiotherapy carries significant morbidity, and quality of life is often significantly reduced post-operatively for a prolonged period of time. Better preparation of patients for treatment might reduce treatment-related morbidity. However, it is not known about patients’ preferences regarding rehabilitation in this setting. We have undertaken a qualitative study to explore the views and needs of patients and their carers regarding peri-operative and post-operative rehabilitation following oesophagectomy.
Methods: A qualitative study involving patients who underwent oesophagectomy for cancer or pre-malignant disease at a single Australian tertiary hospital between 2013 and 2015. Patients’ carers were also interviewed. The transcribed discussions were analysed using Framework Analysis.
Results: Three focus group discussions and 8 individual interviews were conducted with 15 patients and 11 carers. The overarching theme was “getting back to normal”. The diagnosis of oesophageal cancer represented a disruption to the normal, pre-diagnosis trajectory of participants’ lives. During the pre-treatment phase participants reported varying expectations about getting back to normal with some preparing themselves physically and logistically. While the treatment phase included focussing on the present and trusting experts, the post-treatment phase was one of striving to get back to normal and was identified as the time rehabilitation (in the form of dietetics, physiotherapy and nursing care) was most needed. Few disadvantages to rehabilitation were noted, although some struggled to understand how rehabilitation would apply to their situation. Home-based rehabilitation was seen as ideal because travel was a potential barrier. Participants emphasised the importance of rehabilitation being tailored to individual needs/circumstances.
Conclusion: Participants valued post-treatment support for return to ‘normal’ or adapting to a ‘new’ normal. These findings have implications for tailoring post-treatment management following oesophagectomy.