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RESEARCH HIGHLIGHT: Perspectives of oesophageal cancer survivors on diagnosis, treatment and recovery

Multidisciplinary researchers from The Trinity Centre for Health Sciences at St James Hospital, the Trinity Translational Medicine Institute and Technological University Dublin collaborated on a Health Research Board-funded study that examined patient experiences of oesophageal cancer diagnosis, treatment and recovery to allow researchers and health professionals better understand the education and rehabilitation needs of oesophageal cancer survivors.

An oesophageal cancer diagnosis signals the start of a difficult period of health-related physical, psychological, and social challenges. Patients with oesophageal cancer are often diagnosed at an advanced stage of disease, and an oesophagectomy (removal of the oesophagus or food pipe) is the mainstay of treatment, either alone or in combination with chemotherapy or radiotherapy. This surgery is complex, and patients commonly suffer from the after-effects of this procedure such as muscle loss, difficulties with eating, and fatigue. Emotional after-effects may also occur, affecting patients’ quality of life and wellbeing. Led by Professor Juliette Hussey, researchers from a variety of disciplines, including medicine, surgery, physiotherapy, dietetics, and occupational therapy conducted a study examining patient experiences of oesophageal cancer diagnosis, treatment and recovery.

Describing this important patient-centred work, primary author Dr Annemarie Bennett said:

“We held focus groups where oesophageal cancer survivors spoke about their experiences of diagnosis, treatment, and recovery in small groups of between two and eight people. These discussions were facilitated by an occupational therapist and were recorded. The transcripts were then analysed to determine the key messages and issues raised by participants. In total, 18 patients took part.”

Dr Bennett summarised the key study findings:

“Most participants consistently discussed the value of a pragmatic and positive attitude. While wider family and friends were well-meaning, this could also be overwhelming at critical or challenging timepoints, such as returning home after hospital or surgery."

Patients described their feelings around overly positive attitudes by those around them, or equally, those who spoke openly about death. Patients spoke of their desire to resume the activities of their ‘normal life’, without feeling that they were being over-protected. Participants highlighted the limited supports currently available post treatment. Dr Bennett explained:

“All participants in the study agreed that there was a need for education and support following their treatment. The potential value of peer-support was particularly highlighted, with most patients observing that they had never met other people with oesophageal cancer prior to participating in the research study.”

While patients who have recovered from oesophageal cancer have some needs that are similar to that of other cancers, such as how to deal with fatigue, general coping strategies, and the need for social support, those with oesophageal cancer also have unique requirements. Speaking about how the needs of oesophageal cancer survivors could be met, Dr Bennett said:

“The nuances of oesophageal cancer, particularly those related to gastrointestinal health, require particular reassurance and attention, such as changes to pace, timing, and volume of meals, urgency of bowel movements, and managing the social implications of these challenges to food intake and digestion. Further research is needed in this area, and given the traumatic experience of oesophageal cancer, research that quantifies the impact of equipping individuals with oesophageal cancer, their families, and their social networks with skills to manage cancer treatment and recovery is worthy of consideration.”

The full citation can be accessed at: Bennett AE, O'Neill L, Connolly D, Guinan E, Boland L, Doyle S, O'Sullivan J, Reynolds JV, Hussey J. Perspectives of Esophageal Cancer Survivors on Diagnosis, Treatment, and Recovery. Cancers (Basel). 2020 Dec 31;13(1):100. doi: 10.3390/cancers13010100.