title: Preferences for and experiences of family involvement in cancer treatment decision-making: patient-caregiver dyads study.
abstract: BACKGROUND
  Despite the important role that family caregivers play in providing emotional and practical support to cancer patients, relatively little is known about the family caregiver's role in treatment decision-making (TDM). We sought to investigate patients' and family caregivers' preferences for and experiences of family involvement in TDM and factors associated with preference concordance.
  
  
  METHODS
  A national survey was performed with 990 patient-caregiver dyads (participation rate:76.2%). Questions examining preferences for and experiences of family involvement in TDM were administered independently to patients and family caregivers. Concordance was calculated with weighted kappa. Logistic regression analyses were used to identify predictors of patients' and caregivers' preferences for family involvement in TDM and concordance between them.
  
  
  RESULTS
  Few patients or family caregivers expressed a preference for unilateral decision-making; however, there was considerable variation and poor agreement within dyads in regard to whether the patient or family caregivers should take the lead in decision-making with input from the other (weighted kappa between respondents for TDM preferences and experiences = 0.10 and κ = 0.18, respectively). Greater TDM preference concordance was associated with higher patient education, whereas lower levels of concordance were evident for younger patients, less educated caregivers, adult child patient dyads (as opposed to a spouse-patient dyads) and problematic family communication about cancer.
  
  
  CONCLUSIONS
  Most patients and family caregivers valued and expected family involvement in TDM. However, there is little explicit agreement in regard to which party in the dyad should take decisional leadership and who should play a supporting role.
authors.affiliation: Department of Family Medicine & Health Promotion Center, Seoul National University Hospital, Seoul, Korea; Cancer Survivorship Clinic, Seoul National University Cancer Hospital, Seoul, Korea.
authors.forename: Dong Wook
authors.initials: DW
authors.lastname: Shin
authors.forename: Juhee
authors.initials: J
authors.lastname: Cho
authors.forename: Debra L
authors.initials: DL
authors.lastname: Roter
authors.forename: So Young
authors.initials: SY
authors.lastname: Kim
authors.forename: Sang Kyun
authors.initials: SK
authors.lastname: Sohn
authors.forename: Man-Soo
authors.initials: MS
authors.lastname: Yoon
authors.forename: Young-Woo
authors.initials: YW
authors.lastname: Kim
authors.forename: BeLong
authors.initials: B
authors.lastname: Cho
authors.forename: Jong-Hyock
authors.initials: JH
authors.lastname: Park
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003657:Decision Making; D005190:Family / Q000523:psychology; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D007407:Interviews as Topic; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D057240:Patient Preference; D010817:Physician-Patient Relations; D011368:Professional-Family Relations; D056910:Republic of Korea; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
keywords: cancer; communication; concordance; decision-making; family caregiver