title: Evolution of Symptom Burden of Advanced Lung Cancer Over a Decade.
abstract: Lung cancer is associated with higher levels of symptom distress and unmet needs than other cancer types. We assessed changes in symptoms, function, understanding, and preferences of patients with advanced lung cancer over a 10-year period.
  
  
  
  A 26-item self-administered questionnaire was used to assess symptom burden, functional impairment, knowledge of disease and treatment, and information preferences. The survey was administered to consecutive outpatients with advanced lung cancer first in 2002 and a second cohort in 2012.
  
  
  
  A total of 108 patients with advanced lung cancer were surveyed in 2002, and 100 in 2012. Rates of severe physical symptoms were similar over the 10-year period. The most common symptoms remained fatigue, cough, and dyspnea. One-third perceived major impairment of daily activities from lung cancer. Significant anxiety was reported by at least 20%; nearly a quarter reported being unable to meet family needs. More patients in 2012 received information on treatment benefits, side effects, and clinical trials. Only 40% reported having end-of-life wishes, and fewer than half had discussed these with their oncologist. Over time, more patients expressed a preference for treatment associated with increased survival even if it compromised quality of life. Half were interested in Internet-based resources, most in print media, and a growing number in telephone support.
  
  
  
  Patients with advanced lung cancer continue to experience significant symptom distress and unmet needs despite advances in treatment. Comprehensive assessment and symptom, psychological, financial, and information support remain key areas for improvement in the care of patients with advanced lung cancer.
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Mike R
authors.initials: MR
authors.lastname: Sung
authors.affiliation: Trillium Health Centre, Mississauga, Canada.
authors.forename: Milan V
authors.initials: MV
authors.lastname: Patel
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Sarvar
authors.initials: S
authors.lastname: Djalalov
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Lisa W
authors.initials: LW
authors.lastname: Le
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Frances A
authors.initials: FA
authors.lastname: Shepherd
authors.affiliation: Mount Sinai Hospital, Toronto, Canada.
authors.forename: Ronald L
authors.initials: RL
authors.lastname: Burkes
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Ronald
authors.initials: R
authors.lastname: Feld
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Lin
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
authors.forename: Roxana
authors.initials: R
authors.lastname: Tudor
authors.affiliation: Princess Margaret Cancer Centre, University Health Network, Toronto, Canada. Electronic address: Natasha.Leighl@uhn.ca.
authors.forename: Natasha B
authors.initials: NB
authors.lastname: Leighl
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D002170:Canada / Q000453:epidemiology; D003371:Cough; D004417:Dyspnea; D005221:Fatigue; D005260:Female; D006801:Humans; D008175:Lung Neoplasms / Q000453:epidemiology* / Q000503:physiopathology; D008297:Male; D008875:Middle Aged; D009367:Neoplasm Staging; D010353:Patient Education as Topic; D057240:Patient Preference; D058996:Quality Improvement; D011788:Quality of Life; D059020:Suicidal Ideation; D011795:Surveys and Questionnaires
keywords: Functional impairment; Information preferences; Needs assessment; Patient symptom burden