Have a vital end-user been overlooked? Developing a shared decision intervention for patients with potential pancreatic cancer regarding the choice of surgery.

Objective: To develop a patient decision aid facilitating shared decision making for patients with potential pancreatic cancer deciding about no treatment, surgical or medical treatment. Methods: Based on a user-centred design by Wittemann et al., we developed a shared decision making intervention in three phases: 1) Understanding decision needs 2) Development of a patient decision aid (PtDA) based on a generic template 3) Assessment of the intervention from interviews with patients (n = 11), relatives (n = 11), nurses (n = 4) and surgeons (n = 2) analysed with thematic analysis, and measuring patients' perceptions of choice of options with the Decisional Conflict Scale. Results: Results showed varying experiences with the use of the PtDA, with surgeons not finding PtDA useful as it was impractical and constraining with patients' conversations. There was no difference in patients' perceptions in choosing options for those being presented vs those patients not being presented for the PtDA. Conclusion: The format and structure of the PtDA was not feasible for the surgeons as fundamental users in the present clinic. Innovation: This study highlights the urgent need to consider clinical context before introducing a predefined tool and shows the importance of a multistakeholder approach. Research should focus on finding means to successful implement shared decision making.

Physical and psychological symptom burden in patients and caregivers during follow-up care after curative surgery for cancers in the pancreas, bile ducts or duodenum.

BACKGROUND: The primary aim was to assess Health Related Quality of Life (HRQoL), anxiety and depression in patients and caregivers during follow-up care after curative treatment for cancer in the pancreas, duodenum, or bile ducts. The secondary aim was to assess dyadic coping and the burden of being a caregiver. MATERIALS AND METHODS: In this prospective observational cohort study, we included patients and caregivers at first follow-up visit to conduct the following: Demographic characteristics, The European Organization for Research and Treatment of Cancer Quality of Life, the pancreas and bile duct module, EQ5D 3L, GAD-7 and PHQ-9 at baseline, and at six and nine-months follow-up visit. Demographic characteristics, Dyadic Coping Inventory and Zarit Caregiver Burden Questionnaire were conducted at baseline and at nine-months of follow-up visit. RESULTS: The response rate was 42% with 104 of the 248 invited patients completing the questionnaires at baseline: 78 (75% of 104) after six and 69 (66% of 104) after nine months. The median (Q25,75) time for inclusion was 33.6 (13.4, 38) and 29.1 (18.3, 36) weeks after surgery for patients with pancreatic or duodenal cancer, and bile duct cancer, respectively. The response rate of caregivers was 88% with 75 of 85 completing the questionnaires. Fifty percent of patients with pancreatic or duodenal cancer had diarrhea at baseline. After six and nine months, this increased to 75%. Fatigue was the most prominent symptom in patients with bile duct cancer after nine months with 25% of patients scoring this as a clinical symptom. CONCLUSIONS: The study highlights the need to systematically screen physical and psychological symptoms in patients and caregivers during follow-up care after treatment for cancer in the pancreas, duodenum and bile ducts. Symptom management during follow-up care should be prioritized by clinicians.

Physical activity after colorectal cancer surgery-a cross sectional study of patients with a long-term stoma.

PURPOSE: Physical activity is recommended to cancer survivors by the World Health Organisation (WHO) and is associated with improved survival after colorectal cancer. It remains unclear whether having a stoma is a barrier for an active lifestyle. We examined the level of physical activity and explored factors impacting physical activity in survivors with a stoma. METHODS: A total of 1265 (65%) patients in the Danish Stoma Database completed a multidimensional survey. Physical activity of moderate- and vigorous-intensity was assessed using two validated questions. Based on WHO guidelines, physical activity was categorised into 'Meeting' or 'Not Meeting' recommendations. Multivariate regression analysis, adjusting for potential confounders, provided odds ratio (OR) and 95% confidence intervals (CI) for factors' association with'Not Meeting' guideline recommendations. RESULTS: In total, 571 patients with colorectal cancer reported on physical activity at a median of 4.3 years (interquartile range 3.1-5.8) after stoma surgery. Two hundred ninety-three patients (51%) were 'Meeting recommendations' and 63% of them were 'Highly active'. Two hundred seventy-eight were 'Not meeting' recommendations (49%). Of the factors analysed, patients without support garment were more likely (OR 1.72 [95% CI 1.16; 2.54] not to meet guideline recommendations. We found no association between stoma type, surgical procedure, parastomal bulging and 'problematic stoma' and level of physical activity, respectively. CONCLUSION: In this large sample of survivors with a stoma half of patients met or exceeded guideline recommendations. Of patients not meeting recommendations some could potentially meet the recommendations by modest increases in either moderate or vigorous activity.

The psychological symptom burden in partners of pancreatic cancer patients: a population-based cohort study.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Increased psychological symptom burden in patients with pancreatic cancer: A population-based cohort study.

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 (<59 years) was associated with depression. 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.

Gut disruption impairs rehabilitation in patients curatively operated for pancreaticoduodenal cancer - a qualitative study.

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.