title: 'Burden to others' as a public concern in advanced cancer: a comparative survey in seven European countries.
abstract: BACKGROUND
  Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.
  
  
  METHODS
  Telephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression.
  
  
  RESULTS
  Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80).
  
  
  CONCLUSIONS
  When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.
authors.affiliation: Department of Palliative Care, Policy & Rehabilitation, Cicely Saunders Institute, King's College London, London, UK. claudia.bausewein@kcl.ac.uk
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
authors.forename: Natalia
authors.initials: N
authors.lastname: Calanzani
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Daveson
authors.forename: Steffen T
authors.initials: ST
authors.lastname: Simon
authors.forename: Pedro L
authors.initials: PL
authors.lastname: Ferreira
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
authors.forename: Dorothee
authors.initials: D
authors.lastname: Bechinger-English
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.forename: Franco
authors.initials: F
authors.lastname: Toscani
authors.forename: Lucas
authors.initials: L
authors.lastname: Ceulemans
authors.forename: Richard
authors.initials: R
authors.lastname: Harding
authors.forename: Barbara
authors.initials: B
authors.lastname: Gomes
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D016001:Confidence Intervals; D017281:Cost of Illness; D004417:Dyspnea / Q000209:etiology; D005060:Europe; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D057187:Independent Living; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications* / Q000628:therapy*; D016017:Odds Ratio; D010146:Pain / Q000209:etiology; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013727:Terminal Care; D055815:Young Adult