title: Toward patient-centered cancer care: patient perceptions of problematic events, impact, and response.
abstract: OBJECTIVE
  Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events.
  
  
  METHODS
  In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something "went wrong" during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event.
  
  
  RESULTS
  Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns.
  
  
  CONCLUSIONS
  Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.
authors.affiliation: Meyers Primary Care Institute, Worcester, MA 01605, USA. Kathy.Mazor@meyersprimary.org
authors.forename: Kathleen M
authors.initials: KM
authors.lastname: Mazor
authors.forename: Douglas W
authors.initials: DW
authors.lastname: Roblin
authors.forename: Sarah M
authors.initials: SM
authors.lastname: Greene
authors.forename: Celeste A
authors.initials: CA
authors.lastname: Lemay
authors.forename: Cassandra L
authors.initials: CL
authors.lastname: Firneno
authors.forename: Josephine
authors.initials: J
authors.lastname: Calvi
authors.forename: Carolyn D
authors.initials: CD
authors.lastname: Prouty
authors.forename: Kathryn
authors.initials: K
authors.lastname: Horner
authors.forename: Thomas H
authors.initials: TH
authors.lastname: Gallagher
mesh_terms: D000328:Adult; D003299:Cooperative Behavior; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration*; D007722:Health Knowledge, Attitudes, Practice; D006279:Health Maintenance Organizations; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D019300:Medical Errors / Q000517:prevention & control* / Q000523:psychology; D008495:Medical Oncology / Q000458:organization & administration*; D008875:Middle Aged; D009369:Neoplasms / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D009937:Organizational Objectives; D010348:Patient Care Team / Q000458:organization & administration; D061214:Patient Safety; D018802:Patient-Centered Care / Q000458:organization & administration*; D010361:Patients / Q000523:psychology*; D010465:Perception; D010817:Physician-Patient Relations; D018570:Risk Assessment; D012307:Risk Factors; D016896:Treatment Outcome; D014481:United States; D055815:Young Adult