title: Breast cancer survivors' recollection of their illness and therapy seven years after enrolment into a randomised controlled clinical trial.
abstract: BACKGROUND
  Little is known about the subjective experience of breast cancer survivors after primary treatment. However, these experiences are important because they shape their communication about their illness in everyday life, usage and acceptance of healthcare, and expectations of new generations of patients. The present study investigated this topic by combining qualitative and quantitative methods.
  
  
  METHODS
  Breast cancer survivors in Bavaria, Germany were mailed a questionnaire up to seven years after enrolment into a randomised controlled clinical trial and start of their therapy. This enquired about their worst experiences during the breast cancer episode, positive aspects of the illness and any advice they would give to newly diagnosed patients. A category system for themes was systematically created and answers were categorised by two independent raters. Frequencies of key categories were then quantitatively analysed using descriptive statistics. In addition, local treating physicians gave their opinion on the response categories chosen by their patients.
  
  
  RESULTS
  133 (80%) of 166 eligible patients who survived up to seven years returned the questionnaire. The most prominent worst experience reported by survivors was psychological distress (i.e. anxiety, uncertainty; prevalence 38%) followed by chemotherapy (25%), and cancer diagnosis (18%). Positive aspects of the illness were reported by 48% with the most frequent including change in life priorities (50%) and social support (22%). The most frequent advice survivors gave was fighting spirit (i.e. think positive, never give up; prevalence 42%). Overall, physicians' estimates of the frequency of these responses corresponded well with survivors' answers.
  
  
  CONCLUSIONS
  Although physicians' understanding of breast cancer patients was good, psychological distress and chemotherapy-related side effects were remembered as particularly burdensome by a substantial part of survivors. On the one hand, patients' quality of life needs to be assessed repeatedly during medical follow-up to identify such specific complaints also including specific recommendations to the physician for targeted psychosocial and medical support. On the other hand the advices and positive aspects of the disease, reported by the survivors, can be used to promote positive ways of coping with the illness.
authors.affiliation: Tumor Center Regensburg e.V., An-Institute of the University of Regensburg, Regensburg, Germany. patricia.lindberg@ukr.de.
authors.forename: Patricia
authors.initials: P
authors.lastname: Lindberg
authors.affiliation: Center for Clinical Trials, University Hospital Regensburg, Regensburg, Germany. michael.koller@ukr.de.
authors.forename: Michael
authors.initials: M
authors.lastname: Koller
authors.affiliation: Tumor Center Regensburg e.V., An-Institute of the University of Regensburg, Regensburg, Germany. brunhilde.steinger@ukr.de.
authors.forename: Brunhilde
authors.initials: B
authors.lastname: Steinger
authors.affiliation: Tumor Center Regensburg e.V., An-Institute of the University of Regensburg, Regensburg, Germany. wilfried.lorenz@ukr.de.
authors.forename: Wilfried
authors.initials: W
authors.lastname: Lorenz
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK. J.C.Wyatt@leeds.ac.uk.
authors.forename: Jeremy C
authors.initials: JC
authors.lastname: Wyatt
authors.affiliation: Department of Gynecology and Obstetrics, University Medical Center Regensburg, Regensburg, Germany. elisabeth.inwald@ukr.de.
authors.forename: Elisabeth C
authors.initials: EC
authors.lastname: Inwald
authors.affiliation: Tumor Center Regensburg e.V., An-Institute of the University of Regensburg, Regensburg, Germany. monika.klinkhammer-schalke@ukr.de.
authors.forename: Monika
authors.initials: M
authors.lastname: Klinkhammer-Schalke
mesh_terms: D000368:Aged; D001943:Breast Neoplasms / Q000188:drug therapy* / Q000523:psychology*; D003430:Cross-Sectional Studies; D064420:Drug-Related Side Effects and Adverse Reactions / Q000523:psychology*; D005260:Female; D005858:Germany; D006801:Humans; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology; D016032:Randomized Controlled Trials as Topic; D013315:Stress, Psychological / Q000453:epidemiology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*