title: Problems and needs in patients with incurable esophageal and pancreaticobiliary cancer: a descriptive study.
abstract: Patients with incurable esophageal cancer (EC) or pancreaticobiliary cancer (PBC) often have multiple symptoms and their quality of life is poor. We investigated which problems these patients experience and how often care is expected for these problems to provide optimal professional care. Fifty-seven patients with incurable EC (N = 24) or PBC (N = 33) from our outpatient clinic completed the validated "Problems and Needs for Palliative Care" (PNPC) questionnaire and two disease-specific quality of life questionnaires, European Organization for Research and Treatment in Cancer (EORTC). Although patients in general had several problems, physical, emotional, and loss of autonomy (LOA) problems were most common. For these physical and emotional problems, patients also expected professional care, although to a lesser extent for LOA problems. Inadequate care was received for fatigue, fear, frustration, and uncertainty. We conclude that an individualized approach based on problems related to physical, emotional, and LOA issues and anticipated problems with healthcare providers has priority in the follow-up policy of patients with incurable upper gastrointestinal cancer. Caregivers should be alert to discuss needs for fatigue, feelings of fear, frustration, and uncertainty.
authors: Madeleen J. Uitdehaag, PhD, RN, is with Departments of Gastroenterology and Hepatology, Erasmus MC, University Medical Center Rotterdam, the Netherlands, and Department Nursing, Saxion University of Applied Science, Deventer/Enschede, the Netherlands. Els M. L. Verschuur, PhD, RN, is with Departments of Gastroenterology and Hepatology, Erasmus MC, University Medical Center Rotterdam; the Netherlands. Casper H. J. van Eijck, PhD, MD, is with Department of Surgery, Erasmus MC, University Medical Center Rotterdam; the Netherlands. Ate van der Gaast, PhD, MD, is with Department of Medical Oncology, Erasmus MC, University Medical Center Rotterdam; the Netherlands. Carin C. D. van der Rijt, PhD, MD, is with Department of Medical Oncology, Erasmus MC, University Medical Center Rotterdam; the Netherlands. Rob A. de Man, PhD, MD, is with Departments of Gastroenterology and Hepatology, Erasmus MC, University Medical Center Rotterdam, the Netherlands. Ewout W. Steyerberg, PhD, is with Department of Public Health, Erasmus MC, University Medical Center Rotterdam; the Netherlands. Ernst J. Kuipers, PhD, MD, is with Departments of Gastroenterology and Hepatology, Erasmus MC, University Medical Center Rotterdam, the Netherlands. Peter D. Siersema, PhD, MD, is with Departments of Gastroenterology and Hepatology, Erasmus MC, University Medical Center Rotterdam, the Netherlands, and Department of Gastroenterology and Hepatology, University Medical Center Utrecht, the Netherlands.
authors: Madeleen J
authors: MJ
authors: Uitdehaag
authors: Els M L
authors: EM
authors: Verschuur
authors: Casper H J
authors: CH
authors: van Eijck
authors: Ate
authors: A
authors: van der Gaast
authors: Carin C D
authors: CC
authors: van der Rijt
authors: Rob A
authors: RA
authors: de Man
authors: Ewout W
authors: EW
authors: Steyerberg
authors: Ernst J
authors: EJ
authors: Kuipers
authors: Peter D
authors: PD
authors: Siersema
mesh_terms: D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001661:Biliary Tract Neoplasms / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D015331:Cohort Studies; D004938:Esophageal Neoplasms / Q000401:mortality / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands; D010166:Palliative Care / Q000379:methods*; D010190:Pancreatic Neoplasms / Q000401:mortality / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life; D018570:Risk Assessment; D016019:Survival Analysis; D019452:Terminally Ill