It’s all about the CA-19-9. A longitudinal qualitative study of patients’ experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct

Abstract

Background: Patients undergoing curative surgery for cancers of the pancreas, duodenum or bile ducts currently attend follow-up at specialized centers. Traditionally, follow-up after cancer has focused on cancer relapse. The Danish Health and Medicines Authority has recently pushed for a wider focus incorporating patients' individual needs and concerns during cancer rehabilitation. We aimed to explore patients' experiences of and perspectives on the rehabilitative scope of the current follow-up within the first year after curative treatment. Material and methods: A qualitative longitudinal design was undertaken with individual semi-structured interviews. We included twelve patients attending current follow-up after treatment for cancer in the pancreas, duodenum or bile-duct. We interviewed the patients three times over a period of 9 months. Data were analyzed longitudinally using inductive content analysis. Results: The patients experienced the cancer antigen (CA-19-9) as the center piece of follow-up, with consultations revolving largely around the CA-19-9 results. Parallel to and independent of follow-up, the patients described an array of creative strategies for adapting to their altered bodies and new life situation. The strategies included homemade endeavors to minimize gut symptoms, for example mint tablets or dairy products without lactose: realizing lifelong dreams and resolving financial matters; confiding with likeminded outside the family or professionals outside the hospital. First encounters with HCPs were critically important with bad first encounters haunting patients throughout follow-up and good first encounters facilitating trust and reciprocity between patients and HCPs. Conclusion: Patients in this study perceived detection of relapse through CA-19-9 as the focal point of follow-up, leaving other patient-important symptoms insufficiently addressed. We may, therefore, consider not using this relatively unprecise marker for relapse in the future. Balancing clinicians' needs to diagnose relapse with patients' needs for rehabilitation warrants attention in clinical practice and future research.

Surgical Treatment of Pancreatic Ductal Adenocarcinoma

“…Targeted therapy of oligometastatic disease also offers alternative options for a limited number of patients. Furthermore, surveillance is desired by patients and clinicians alike [182,183]. Table 6: Areas for Post-operative gain.…”

Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up

“…However, the term context is an abstract and diffuse theoretical construct that is challenging to delimit and define. The main context of the CPEQ is the follow-up for cancer patients supported by several studies identifying follow-up for cancer patients as a distinct temporal and experiential context with distinct issues [12,13,34,35,14]. However, the way follow-up is carried out in practice is fairly diverse between different departments and hospitals and to some degree seemed to be more of an administrative term.…”

“…Many patients continue to struggle with significant issues, such as fear of recurrence, side effects, late complications, cognitive impairments, and challenges related to returning to everyday life after cancer, as it is a potential life altering experience [12]. Stakeholders have thus called for more focus on this specific part of the cancer trajectory and emphasized the essential need for more individualized follow-up plans, taking the individual cancer patients' specific experiences, needs, concerns and well-being into consideration [12,14,15]. In many countries, including Denmark, cancer patients will be referred to a follow-up program after initial treatment [16,17].…”

Symptoms and life changes after total pancreatectomy: a qualitative study

“…Preexisting qualitative studies involving pancreatic surgery have mainly focused on either perioperative care, 8,9 communication 10 or clinician attitudes and follow-up after surgery. 11,12 A common feature in these studies is an often unmet need among patients for information and communication with health-care professionals, both for successful postoperative care and for an understanding of the prognosis and aims of postoperative follow-ups. Beesley et al conducted a 2015 survey among patients with pancreatic and periampullary malignancies, in which they reported a 'tsunami of unmet needs' among this group, including a holistic perspective with physical, psychological, emotional and tailored supportive care needs.…”