a Department of Surgical Gastroenterology and Transplantation , Copenhagen University Hospital Rigshospitalet , Copenhagen , Denmark.
b Department of Health and Social Context, The National Institute of Public Health , University of Southern Denmark , Copenhagen , Denmark.
Acta Oncol. 2019 May;58(5):642-649. doi: 10.1080/0284186X.2018.1562212. Epub 2019 Jan 30.
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. 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. 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 life-long 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. 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.
目前，接受胰腺、十二指肠或胆管癌症根治性手术的患者在专门的中心接受随访。传统上，癌症随访的重点是癌症复发。丹麦卫生和药品管理局最近推动了更广泛的关注，将癌症康复期间患者的个体需求和关注点纳入其中。我们旨在探讨患者在根治性治疗后一年内对当前随访的康复范围的体验和看法。我们采用了定性纵向设计，进行了个体半结构化访谈。我们纳入了 12 名正在接受胰腺、十二指肠或胆管癌症治疗后当前随访的患者。我们在 9 个月的时间里对患者进行了三次访谈。使用归纳内容分析对数据进行了纵向分析。患者将癌症抗原 (CA-19-9) 视为随访的核心，咨询主要围绕 CA-19-9 结果展开。与随访并行且独立的是，患者描述了一系列创造性策略，用于适应他们改变的身体和新的生活状况。这些策略包括自制的努力来最小化肠道症状，例如薄荷片或不含乳糖的乳制品：实现终身梦想和解决财务问题；向家庭以外或医院以外的志同道合的人倾诉。与 HCP 的初次接触至关重要，糟糕的初次接触会在整个随访过程中困扰患者，而良好的初次接触则有助于患者和 HCP 之间建立信任和互惠关系。本研究中的患者通过 CA-19-9 检测复发作为随访的重点，而其他患者重要的症状则没有得到充分的关注。因此，我们未来可能会考虑不使用这种相对不精确的复发标志物。在临床实践和未来的研究中，需要平衡临床医生诊断复发的需求与患者康复的需求。
