Expectations and needs of patients with esophageal cancer during curative treatment regarding self-management, self-management support and eHealth: a qualitative study

Purpose

Self-management is an essential component of the curative treatment trajectory of esophageal cancer patients. The aims of this study were to explore expectations and needs of esophageal cancer patients during curative treatment regarding self-management, relevant aspects of self-management in which they need additional support, and to explore their willingness to use eHealth.

Methods

Semi-structured interviews were conducted with esophageal cancer patients, who had been treated with neoadjuvant chemo(radio)therapy followed by surgery, maximally 1 year after surgery. Based on the general model of self-management, the following themes were discussed: experience-based knowledge, contribution to care, living with the condition, and organization of care and support. A stepwise systematic text condensation guided the data analysis.

Results

All four domains of the general model of self-management were identified. All participants described a remarkable difference between the pre-operative pathway, when it felt like they were taken by the hand, and the postoperative pathway, when it felt like they were thrown into the deep end. They adjusted to their new life situation by learning new experiences, while dealing with their diminished confidence in their bodies. Patients expressed the need for support from different sources, and were open to the idea of using eHealth in addition to usual care. (digital) Self-management support should be easily accessible, person-centered, confidential, and include personal contact.

Conclusion

Differences were found among esophageal cancer patients regarding self-management, self-management support and eHealth for self-management purposes, indicating there is no one approach that will meet the needs of all patients at all times.