title: The impact of the perception of treatment choice on satisfaction with treatment, experienced chemotherapy burden and current quality of life.
abstract: Previous research has shown that involving patients in the decision-making process may improve their quality of life (QoL). Our purposes were to assess: (1) whether early-stage breast cancer patients perceived that they had treatment choice with regard to adjuvant chemotherapy, (2) what reasons patients provide for their perception of having had no choice of treatment and (3) whether the perception of treatment choice is related to satisfaction with the assigned treatment, experienced chemotherapy burden and current QoL. A total of 448 patients, treated between 1998 and 2003, filled in the questionnaire (response rate: 62%). Patients who indicated that they had not perceived a choice regarding chemotherapy could tick off one or more reasons out of 10 reasons, or provide their own reason(s). Quality of life was measured on a Visual Analogue Scale, by means of the EuroQol, and by means of the Hospital Anxiety and Depression Scale. Of the 405 patients who had answered the question on treatment choice, 316 patients (78%) had perceived no choice. The most frequently indicated reason for lack of choice was: "I follow the doctor's advice." We found no differences in the levels of satisfaction with assigned treatment and in how much of a burden they found chemotherapy between patients who perceived a choice of treatment and those who did not. In general, the perception of choice seemed to have no impact on QoL. However, we found an interaction effect, which indicated that the impact of perception of treatment choice on QoL was dependent upon whether the patient had been treated with chemotherapy or not. Within the group of patients who had not been treated with chemotherapy, the perception of having had a choice was related to lower current QoL. In cases when the decision to be treated or not has potential consequences for the chance of survival, patients' QoL may not be improved by the perception of having had a choice of treatment.
authors.affiliation: Department of Medical Decision Making, J10S, Leiden University Medical Center, PO Box 9600, 2300 RC Leiden, The Netherlands. s.j.t.jansen@lumc.nl
authors.forename: S J T
authors.initials: SJ
authors.lastname: Jansen
authors.forename: W
authors.initials: W
authors.lastname: Otten
authors.forename: C J H
authors.initials: CJ
authors.lastname: van de Velde
authors.forename: J W R
authors.initials: JW
authors.lastname: Nortier
authors.forename: A M
authors.initials: AM
authors.lastname: Stiggelbout
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000971:Antineoplastic Combined Chemotherapy Protocols / Q000009:adverse effects / Q000627:therapeutic use*; D001943:Breast Neoplasms / Q000188:drug therapy* / Q000473:pathology / Q000523:psychology*; D017024:Chemotherapy, Adjuvant; D003142:Communication; D003657:Decision Making; D005260:Female; D005500:Follow-Up Studies; D019538:Health Care Surveys; D006801:Humans; D008875:Middle Aged; D009367:Neoplasm Staging; D017060:Patient Satisfaction; D010465:Perception; D010817:Physician-Patient Relations; D011379:Prognosis; D011788:Quality of Life