title: Patients' preferred and perceived roles in making decisions about adjuvant chemotherapy for non-small-cell lung cancer.
abstract: BACKGROUND
  People with cancer have varying preferences for involvement in decision-making between active, collaborative and passive roles. We sought the preferred and perceived involvement in decision-making among patients considering adjuvant chemotherapy (ACT) after resection of early non-small cell lung cancer (NSCLC).
  
  
  METHODS
  Patients considering ACT for NSCLC were asked to complete a self-administered questionnaire at baseline and 6 months. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale (CPS). We examined differences between preferred and perceived roles, differences in preferred roles over time, determinants of preferences, and differences in treatment preferences between patients preferring active and less active roles.
  
  
  RESULTS
  98 patients completed the baseline questionnaire; 75 completed the 6 month questionnaire. Most patients were male (55%) with a median age of 64 years (range, 43-79 years). Preferred role in decision-making at baseline (n=98) was active in 27%, collaborative in 47%, and passive in 27%. Perceived decision-making roles matched the preferred role in 79% of patients. Individuals' role preferences often varied between baseline and 6 months, but there was no consistent direction to the change (25% changed preference to more active involvement, 22% to less active). Preferring a more active role was associated with university education (OR 2.9, p=0.02), deciding not to have ACT (OR 5.0, p<0.01), and worse health-related quality of life (HRQL) during ACT: physical well-being (OR 4.4, p=0.05), overall well-being (OR 5.5, p=0.02), sleep (OR 8.4, p<0.01) and shortness of breath (OR 7.6, p=0.01). Patients who preferred an active decision-making role judged larger survival benefits necessary to make ACT worthwhile than those preferring a passive role.
  
  
  CONCLUSIONS
  Most patients with resected NSCLC preferred and perceived a collaborative role in decision-making about ACT. Clinicians should elicit and consider patients' preferences for involvement in decision-making when discussing ACT for NSCLC.
authors.affiliation: Concord Cancer Centre, Sydney Australia; University of Sydney, Sydney, Australia. Electronic address: erin.moth@sswahs.nsw.gov.au.
authors.forename: Erin
authors.initials: E
authors.lastname: Moth
authors.affiliation: St Vincent's Hospital, Melbourne, Australia.
authors.forename: Sue-Anne
authors.initials: SA
authors.lastname: McLachlan
authors.affiliation: NHMRC Clinical Trials Centre, Sydney, Australia.
authors.forename: Anne-Sophie
authors.initials: AS
authors.lastname: Veillard
authors.affiliation: NHMRC Clinical Trials Centre, Sydney, Australia.
authors.forename: Nick
authors.initials: N
authors.lastname: Muljadi
authors.affiliation: NHMRC Clinical Trials Centre, Sydney, Australia.
authors.forename: Malcolm
authors.initials: M
authors.lastname: Hudson
authors.affiliation: Concord Cancer Centre, Sydney Australia; University of Sydney, Sydney, Australia; NHMRC Clinical Trials Centre, Sydney, Australia.
authors.forename: Martin R
authors.initials: MR
authors.lastname: Stockler
authors.affiliation: Concord Cancer Centre, Sydney Australia; University of Sydney, Sydney, Australia.
authors.forename: Prunella
authors.initials: P
authors.lastname: Blinman
mesh_terms: D000328:Adult; D000368:Aged; D002289:Carcinoma, Non-Small-Cell Lung / Q000175:diagnosis / Q000188:drug therapy / Q000453:epidemiology*; D017024:Chemotherapy, Adjuvant; D003131:Combined Modality Therapy; D003657:Decision Making; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D008175:Lung Neoplasms / Q000175:diagnosis / Q000188:drug therapy / Q000453:epidemiology*; D008297:Male; D008875:Middle Aged; D009367:Neoplasm Staging; D016017:Odds Ratio; D057240:Patient Preference; D028701:Patient Rights; D019233:Retreatment; D012307:Risk Factors
keywords: Adjuvant chemotherapy; Decision-making; Non-small-cell lung cancer; Preferences