Patient-reported outcomes in survivors of breast cancer one, three, and five years post-diagnosis: a cancer registry-based feasibility study

The burden of treatment toxicities in breast cancer requires longitudinal assessment of patient-centered outcomes. The current study aimed to assess the feasibility of collecting general and breast cancer-specific quality of life (QoL), ongoing symptoms and unmet needs, in patients identified from a population-based cancer registry, and to assess the contribution of demographic, disease, and care-related factors.

Eligible patients were identified from the Victorian Cancer Registry (Victoria, Australia) using the ICD-10 code C50, diagnosed during 2013, 2011, and 2009. Data included age, area of residence, cancer diagnosis, date of diagnosis, treatment modality, and staging. Patients completed a number of validated tools including the EQ-5D-5L and FACT-B, symptom items, and unmet needs.

Of 1006 eligible patients, the overall response rate was 45.6%. Survivors 1 year post-diagnosis had significantly greater problems with pain or discomfort (59.2%) and with anxiety or depression (51.3%) compared with survivors 5 years post-diagnosis (45.1% with pain or discomfort, p < 0.05, and 32.7% with anxiety or depression, p < 0.01). For the 5 years group, pain or discomfort and anxiety or depression were significantly higher than for the general population (32.2% and 21.6%, respectively). Improved quality of life was found in those who did not receive chemotherapy (coefficient = 0.2269, p = 0.0409) and those who did not have a longstanding health condition (coefficient = 0.6342, p < 0.001). Poorer quality of life was associated with those who were not certain what was happening with their breast cancer (coefficient = − 0.3674, p = 0.0094) and those whose cancer had not been treated, had been treated but was still present, or had returned after treatment (coefficient = − 0.5314, p = 0.0136). Across the total cohort, women were bothered by changes in weight (21.3%) and concerned about the effects of stress on their cancer (19.6%). Fear of cancer recurrence was commonly reported and did not diminish over time (60.7%, 52.2%, and 56.9% at 1, 3, and 5 years, respectively).

Collecting patient-reported outcomes from a population-based sample of breast cancer survivors was feasible. Physical symptoms and psychosocial issues are common and are persistent. Use of chemotherapy was the only treatment modality that significantly impacted on QoL.