Aims
Assessment of patient-reported outcomes (PROs) in clinical settings confers many benefits for cancer survivors. Currently, there is no patient-reported outcome measure (PROM) intended specifically to assess the issues experienced by breast cancer survivors (BCS). The overall aims of this study were to: 1) investigate the most prevalent issues experienced by BCS; 2) explore survivors’ preferences about PRO assessment and receiving additional care; and 3) develop a PROM that may be suitable for clinical use in BCS.
Methods
A cross sectional study using online and paper-based questionnaires. Participants were adults with a prior diagnosis of stage I, IIA, IIb or IIIa breast cancer, had completed treatment with curative intent (ongoing adjuvant hormonal/antibody therapy was allowed), and were disease-free. Participants were recruited through outpatient clinics at Peter Mac and the Breast Cancer Network Australia (BCNA) Review and Survey Group.
Results
Response rates were 93% (122/131) for Peter Mac participants and 11% (159/1474) for BCNA. Overall, 280 women and one man were included, mean age at diagnosis 51.6 years, and mean time since treatment 6.1 years. Treatments included surgery (n=254), radiotherapy (n=209), hormonal therapy (n=187) and chemotherapy (n=176), either alone or in combination. The most prevalent issues reported were fear of recurrence (67.3%), trouble sleeping (63.4%), fatigue (63.3%), anxiety (62.1%) and menopausal symptoms (59.1%). Participants supported enquiry about survivorship issues at follow-up appointments, most commonly endorsing questions about sleep (86.8%), pain (85.0%), fatigue (84.3%), depression (84.2%), anxiety (82.8%), menopausal symptoms (82.5%) and fear of recurrence (80.7%). Fewer participants however reported wanting help for these issues (range 26.8-39.4%). Overall, participants preferred help from community rather than hospital-based providers for all issues except fertility.
Conclusions
Research findings informed development of a 14-item PROM suitable for assessment of issues experienced by BCS. Future research should include pilot testing and implementation in clinical settings.