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

Abstract

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.

Keywords:

• Follow-up care
• cancer
• caregivers
• burden
• QoL
• anxiety
• depression

Acknowledgements

We would like to thank the patients who were so generously to take their time to answer the questionnaires. We also wish to acknowledge outpatient clinic nurses Marianne Melton, Mette Tholstrup Bach, Bettina Nielsen and Nina Spiegelhaur for recruiting patients, and medical student Mette Torbensen for data management. Finally, we thank The Novo Nordisk Foundation and Rigshospitalet, University of Copenhagen for funding the study.

Ethical approval

The study was performed in compliance with the Helsinki Declaration. The Central Science Ethics Committee evaluated the study protocol and deemed the further approval necessary (16020895). The Danish Data protection Agency approved the study (RH-2016-132, I-Suite number 04662). We obtained written informed content from the patients and their caregivers.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data cannot be made open because of the relatively small sample size. Data can be shared on reasonable request.

Additional information

Funding

This work was supported by The Novo Nordisk Foundation; under Grant number [NNF15OC0017022] & [NNF16OC0022680]; and Rigshospitalet, University of Copenhagen.