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Pancreatic cancer (PC) has high morbidity and mortality and is stressful for patients and their partners. We investigated the psychological symptom burden in partners of PC patients. We followed 5774 partners of PC patients diagnosed from 2000 to 2016 up for first redeemed prescriptions of antidepressants or hospital admission, anxiolytics, and hypnotics as proxies for clinical depression, anxiety, and insomnia and compared them with 59,099 partners of cancer-free spouses. Data were analysed using Cox regression and multistate Markov models. The cumulative incidence proportion of first depression was higher in partners of PC patients compared to comparisons. The highest adjusted HR of first depression was seen the first year after diagnosis (HR 3.2 (95% CI: 2.9; 3.7)). Educational level, chronic morbidity, and bereavement status were associated with an increased risk of first depression. There was a significantly higher first acute use (1 prescription only) of both anxiolytics and hypnotics and chronic use (3+ prescriptions) of hypnotics in partners of PC patients than in comparisons. Being a partner to a PC patient carries a substantial psychological symptom burden and increases the risk for first depression and anxiolytic use and long-term use of hypnotics. Attention should be given to the psychological symptom burden of partners of PC patients, as this may pose a barrier for the optimal informal care and support of the PC patient, as well as a risk for non-optimal management of symptoms in the partner.

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 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.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.

Background/Objective To investigate the psychological symptom burden in patients with pancreatic cancer. Methods We used Danish population-based registries to identify 10,793 pancreatic cancer patients and 109,238 age and gender matched cancer-free comparison persons between the years 2000–2016. The cohorts were followed up to five years for first prescription for antidepressants, anxiolytics or hypnotics as proxies for the psychological symptom burden of depression, anxiety or insomnia. Cumulated incidence proportions were analysed using the pseudo-value approach and hazards were estimated with Cox regression models adjusted for potential confounders. Results The highest HR for first antidepressant use was seen in the first six months after diagnosis (HR 8.73 (95% CI: 7.57; 10.06)). Within the first two years the overall estimated cumulated probability of 12.9% (95% CI: 12%; 13.8%) in pancreatic cancer patients, and 4.6% (95% CI: 4.5%; 4.8%) in comparisons, and 20.4% and 31.4% patients received first prescription of anxiolytics or hypnotics, respectively. We found no difference in HRs of first antidepressant by gender, year of diagnosis, cohabitation, education or comorbidity in the patient cohort, however younger age ( Conclusions Pancreatic cancer patients are at risk for first antidepressant, anxiolytic and hypnotic use up to five years after diagnosis. Patients younger than 59 years, newly diagnosed with advanced pancreatic cancer, and not treated with surgery were more likely to have first antidepressant use. The study calls for interventions to reduce the psychological burden in advanced pancreatic cancer patients which may improve quality of life and survival.

Purpose Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct. Methods A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis. Results Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: “From bystander to enlisted carer”, inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. “Lonesome worrying” meaning that caregivers hid their feelings of concern and foreboding, and finally, “Keeping a stiff upper lip” indicating that caregivers outwardly maintained a positive face when interacting with the patient. Conclusion Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.

BACKGROUND: How patients recover and resume everyday life after curative hepato-pancreato-biliary (HPB) surgery with intestinal reconstruction has, to our knowledge, not previously been investigated. We wanted to explore the patient experience in order to develop our capability to support their rehabilitation and identify interventional gaps in the current post-surgical care of these patients. Therefore, the aim of the present study was to explore patients' experiences of their gut, digestion, recovery and uptake of everyday life after HPB surgery with intestinal reconstruction.METHODS: A qualitative explorative study with semi-structured interviews with 12 patients. We analysed data using qualitative content analysis with an inductive approach.RESULTS: Two main themes with six sub-themes emerged from the analysis: 1. "Disrupted gut" covering the sub-themes: the weakened body; fighting cachexia; re-aligning to the altered body. 2. "Recovery work" with the sub-themes: the value of municipal rehabilitation programmes; reclaiming the sociality of meals; going back to work. The patients described overarching digestive changes, predominantly diarrhea and nausea. Diarrhea and nausea challenged rehabilitation efforts and limited patients' participation in social activities. Patients toiled to regain strength and every-day life as it was before surgery. Current municipal rehabilitation programmes facilitated these efforts.CONCLUSIONS: The patients articulated an overarching experience of gut disruption, predominantly presenting as nausea, diarrhea and difficulty eating. This challenged their recovery work and uptake of every-day life. Specialised follow-up at expert centres might mitigate the sequelae of gut disruption after HPB surgery. We suggest that follow-up programmes systematically monitor the experienced symptoms of gut disruption with HPB-specific PROMS. Furthermore, research into the pathophysiology of cachexia and novel interventions for reducing cachexia and weakness after curative HPB surgery is relevant.

Cholangiocarcinoma (CCA) is a rare cancer associated with a poor prognosis. Psychosocial challenges may negatively affect daily functioning and health-related quality of life (HRQOL). The primary aim was to evaluate HRQOL, and to assess anxiety and depression in these patients.From 93 eligible patients diagnosed with CCA, 76 were included in a prospective cohort over a period of 15 months. Patients answered the European Organization for Research and Treatment of Cancer QLQ C30 (EORTC QLQ C30) and Hospital Anxiety and Depression Scale (HADS) questionnaires at baseline, one, three and six months after initial treatment; defined as radical operation, explorative laparotomy, chemotherapy or drainage of the bile ducts. Scores were compared between the radically operated patients (n = 25) and palliative patients (n = 51; 12 of these had explorative laparotomy), using repeated measures ANOVA and unpaired ANOVA.The groups were similar in demographic characteristics, except for fewer radically operated men (p = 0.015). There was no significant change over time in HRQOL in total or between groups. At baseline nausea and vomiting scores were higher in the palliative group (p = 0.035), and at one month follow-up, the radical group had higher pain scores (p = 0.009). The majority reported normal/mild anxiety and depression throughout the study; there were no differences between the groups.It was not possible to measure any differences between the groups, regarding HRQOL, anxiety or depression, despite the fact that one of the groups had the prospect of total cure. In clinical settings, observed mean changes in HRQOL scores are generally small; probably due to psychological adaptation by patients to changing health status over time.