title: Patients with oesophageal cancer report elevated distress and problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan.
abstract: This study aims to identify patients with oesophageal cancer's level of distress, type of problems, and wish for referral prior to treatment. To identify the clinical relevance of patients with oesophageal cancer's level of distress and type of problems, we build models to predict elevated distress, wish for referral, and overall survival.
  
  
  
  We implemented the Distress Thermometer and Problem List in daily clinical practice. A score of ≥5 on the Distress Thermometer reflected elevated distress. We first created an initial model including predictors based on the literature. We then added predictors to the initial model to create an extended model based on the sample data. We used the 'least absolute shrinkage and selection operator' to define our final model.
  
  
  
  We obtained data from 187 patients (47.9%, of 390 eligible patients with oesophageal cancer) which were similar to non-respondents in their demographic and clinical characteristics. One-hundred thirteen (60%) patients reported elevated distress. The five most frequently reported problems were as follows: eating, tension, weight change, fatigue, and pain. Most patients did not have a wish for referral. Predictors for elevated distress were as follows: being female, total number of practical, emotional, and physical problems, pain, and fatigue. For referral, we identified age, the total number of emotional problems, the level of distress, and fear. The level of distress added prognostic information in a model to predict overall survival.
  
  
  
  Patients with oesophageal cancer report elevated distress and a myriad of problems yet do not have an explicit wish for referral prior to receiving their medical treatment plan. Copyright © 2016 John Wiley & Sons, Ltd.
authors.affiliation: Department of Medical Psychology, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: M
authors.initials: M
authors.lastname: Jacobs
authors.affiliation: Department of Surgery, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: M C J
authors.initials: MC
authors.lastname: Anderegg
authors.affiliation: Department of Surgery, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: A
authors.initials: A
authors.lastname: Schoorlemmer
authors.affiliation: Department of Public Health, Erasmus Medical Center, Rotterdam, the Netherlands.
authors.forename: D
authors.initials: D
authors.lastname: Nieboer
authors.affiliation: Department of Public Health, Erasmus Medical Center, Rotterdam, the Netherlands.
authors.forename: E W
authors.initials: EW
authors.lastname: Steyerberg
authors.affiliation: Department of Medical Psychology, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: E M A
authors.initials: EM
authors.lastname: Smets
authors.affiliation: Department of Medical Psychology, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: M A G
authors.initials: MA
authors.lastname: Sprangers
authors.affiliation: Department of Surgery, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: M I
authors.initials: MI
authors.lastname: van Berge Henegouwen
authors.affiliation: Department of Medical Psychology, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands.
authors.forename: J C J M
authors.initials: JC
authors.lastname: de Haes
authors.affiliation: Department of Surgery, Gelre Ziekenhuizen, Apeldoorn, the Netherlands.
authors.forename: J H
authors.initials: JH
authors.lastname: Klinkenbijl
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D004938:Esophageal Neoplasms / Q000150:complications / Q000523:psychology*; D005221:Fatigue / Q000209:etiology / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands; D011788:Quality of Life / Q000523:psychology*; D012017:Referral and Consultation; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: distress; oesophageal cancer; patient-reported outcomes; pre-surgery; prediction