This is the first study, to our knowledge, to examine patient preferences and satisfaction with follow-up after oesophago-gastrectomy for cancer. This survey highlights the variability in practice in relation to follow-up duration and the healthcare professionals delivering it. Patients identified a large number of symptoms which they considered important to address as part of the follow-up process. Those reporting lower satisfaction scores received shorter follow-up, and were less likely to have seen a surgeon or had regular input from a dietitian.
There is a paucity of evidence in relation to optimal follow-up after oesophago-gastric cancer surgery. One study previously highlighted that follow-up arrangements after cancer treatment in general, which usually involve outpatient appointments at cancer centres, do not meet all cancer survivors’ needs and provide questionable value for money . They highlighted a need to transform cancer care from a ‘one-size fits all’ approach to one based on the assessment of individual needs and preferences. The report of the Independent Cancer Taskforce identified that a large proportion of current cancer costs within the National Health Service (NHS) in the United Kingdom relate to treating people who are in the survivorship phase and that more tailored care has the potential to reduce costs through reducing tumour recurrences, better management of side-effects and supporting people to live well .
The large number of both gastrointestinal and non-gastrointestinal symptoms reported by patients as ‘important’ after oesophago-gastrectomy is in agreement with the recent LASER study, in which 67% of responding patients reported troublesome symptoms at a median of 4.3 years after oesophagectomy . All of the symptoms listed in the present study were felt to be important by 20% or more of participants, thus justifying their inclusion in future studies assessing the symptom burden in this patient group. Given the overlap of symptoms that may be attributed to the varying conditions that commonly affect patients after oesophago-gastrectomy, it remains to be seen whether symptom combinations may be used to predict the underlying cause(s) or whether systematic investigations are required. Either way, this survey forms a patient-led baseline from which a standardised approach to the management of post-operative symptoms may be considered. The proportion of patients reporting concerns over potential mental health symptoms such as sleep disturbance or psychological distress was low and may reflect under-reporting of these issues .
Whilst the majority of patients were satisfied with their care overall, this study has demonstrated important differences between this group and the remaining unsatisfied patients. These differences highlight areas which centres might consider when seeking to improve post-treatment follow-up protocols. Patient satisfaction was not associated with time elapsed since treatment, suggesting the risk of recall bias, or satisfaction being related to temporal trends in practice, was low. There were also no differences in the number of symptoms highlighted by satisfied and unsatisfied patients.
The majority of patients expressed a desire to be seen by a surgeon as part of their post-operative care. Understandably, patients feel a strong affiliation to the surgeon who performed their operation, despite the fact that many aspects of symptom management fall outside traditional surgical expertise. Unsurprisingly, dietitian involvement in routine follow-up was higher in patients who reported high satisfaction scores although this did not align with the preferred specialisms involved in follow-up as specified by patients. The reasons for this discordance are unclear. One aspect may relate to the survey design, which did not include descriptions of the roles of various specialties, meaning patients based their responses on their personal experiences alone. Socioeconomic, cultural, and educational patient factors have also been shown to play a role in preferences for post-operative follow-up . The importance of dietitian support throughout the surgical pathway is crucial for oesophago-gastrectomy patients, who are at high risk of malnutrition and gastrointestinal complications [15, 16]. Patient understanding of these factors may underlie the preferences reported here to a degree. The fact that only 55% of patients reported routine involvement of a dietitian stands in stark contrast, for example, to a recent Australian and New Zealand survey in which surgeons reported always involving dietetic support postoperatively . Given that the majority of symptoms reported by patients in this study were gastrointestinal in nature, it would seem imperative to increase the rate of dietitian support to manage common symptoms such as reflux or dumping as well as malnutrition. Access to gastroenterology expertise and the means to investigate for the underlying conditions that often cause the symptom burden would also be important in the design of any follow-up model.
Patients expressed a preference for longer follow-up. While current practices largely support follow-up for 5 years after surgery [5, 18], there was support (29% of respondents) for follow-up to continue beyond this, although the preferred duration beyond 5 years was not elucidated in the survey. This reflects the general desire for longer contact with healthcare professionals after complex procedures, as demonstrated in other studies [14, 19–20]. Other more complex issues such as follow-up “as required”, rather than regular pre-set appointments, or future moves towards online symptom reporting triggering follow-up were beyond the remit of this survey, but these issues certainly merit future consideration.
Some methodological limitations of this study deserve discussion. This cross-sectional survey was not fully representative of all oesophago-gastrectomy patients as it excluded those who had not survived or did not take part in the questionnaire. By enrolling patients who self-selected for inclusion via a national patient support group, potential selection bias was introduced. The design of the survey asked patients about their own experiences; responses may have been different if a scenario-based questionnaire was used or if the relative merits of follow-up by different specialists as part of different models were explained as part of the survey. Some questions were asked in an exclusive manner which may not have captured the full scope of the follow-up; the fact that few patients reported that their follow-up care was primarily carried out by a gastroenterologist, for example, must be differentiated from patients where gastroenterologists were additionally consulted for the on-going management of their symptoms. This may not have been fully captured by the survey.
Follow-up after major cancer surgery has multiple aims including tumour recurrence surveillance, symptom management and patient reassurance. The former was beyond the scope of this study but is clearly important, given recent advances in second and third-line oncological therapies. The overall goal is to restore quality of life after cancer treatment. While this study aimed to characterise the symptoms patients’ deemed important, and their overall satisfaction with follow-up, more work is needed to specifically identify what patients want and benefit from post-operatively and how this aligns with the medical evidence-base and the resources realistically available. Further research is crucial to devising a follow-up regimen which optimises both clinical and patient-reported outcomes after oesophageal surgery.
In conclusion, this large patient survey highlights the important preferences of patients regarding follow-up after surgery for oesophageal or gastric cancer. Routine dietitian involvement was only reported by half of patients yet was associated with greater patient satisfaction with the follow-up received. Patients were concerned by a large number of gastrointestinal and non-gastrointestinal symptoms, highlighting the need for multidisciplinary input and a consensus on how to best investigate and manage the poly-symptomatic patient.