Capturing longer term surgical outcome measures as part of routine care of breast cancer patients

Background: In the UK there has been a transition away from clinical follow up after breast cancer towards imaging surveillance and patient-initiated contact ("Open-Access Follow Up"). This results in fewer opportunities for patients and doctors to communicate about long-term effects of treatment. The UK Association of Breast Surgeons Oncoplastic Guidelines (2021) recommend that post-operative images and patient-reported outcomes (PROMs) are routinely collected. We report on the uptake and results of medium to long-term PROM and photography. Methods: Patients due for their 3- or 5-year surveillance mammogram from December 2019-January 2023 at one hospital site were invited to complete an online BREAST-Q PROM questionnaire and attend for medical photography. Panel assessment of 2D photographs was undertaken by five consultant breast surgeons. Descriptive statistics were used. Results were presented back to the oncoplastic multi-disciplinary team. Results: Of the 857 patients invited, 130 (15.2%) completed the questionnaire and 127 (14.8%) attended medical photography. Uptake was highest after reconstruction 24% (n=22), 14% (n=99) after breast conservation and 12% (n=9) after simple mastectomy. Median score for satisfaction with breasts was not significantly different: 68/100 (IQR 53-86) after breast reconstruction, 72/100 (IQR 57-100) after breast conservation and 44/100 (IQR 44-64) after simple mastectomy. Mastectomy patients had a significantly lower sexual wellbeing than the other groups (p<0.001). Satisfaction with post-operative abdomen and nipple reconstruction was excellent. Free-text feedback was informative for the team. Agreement between panel assessment scores for breast conservation was moderate (Fleiss Kappa 0.40). Conclusions: Patient-reported outcome results are in line with published literature for long-term results. Statistical analysis was limited by small numbers because of very low uptake by patients. Work is needed to identify barriers to patient participation and improve uptake to be representative of the overall patient population. More robust means of objective assessment need to be explored.