Abstract P2-15-01: Long-Term Risk Perceptions and Quality of Life of Women with Ductal Carcinoma In Situ

Background: Research has demonstrated that many women with ductal carcinoma in situ (DCIS) overestimate their risk of future breast cancer events. However, no prior studies have evaluated risk perceptions in long-term follow-up. Methods: As part of a multicenter longitudinal cohort study, we mailed long-term follow-up surveys to 315 of 392 women who had previously responded to a survey 18 months after they were diagnosed with DCIS (33 of the 392 were excluded because they were receiving follow-up care at outside centers, and 44 because of recurrence/death). We evaluated psychosocial distress by Hospitalized Anxiety and Depression Scale (HADS) and Revised Impact of Events Scale (RIES), quality of life (QOL) by Short Form Health Survey (SF-36), and risk perceptions with items used previously in the cohort. Results: One hundred ninety-three women (61%) responded. They were a median age of 53 yrs (range 31-89) and a median of 5.8 yrs from diagnosis (range 4.3-7.0). Twelve were excluded due to report of recurrence. Of the 181 remaining, 32% perceived at least a moderate risk of developing DCIS again within 5 yrs; 43% perceived at least a moderate lifetime risk of developing DCIS again; 27% perceived at least a moderate risk of developing invasive breast cancer within 5 yrs; 38% perceived at least a moderate lifetime risk of developing invasive breast cancer; 24% perceived at least a moderate risk of DCIS spreading to other parts of their bodies. For qualitative responses of ≥ moderate perceived risk, median quantitative risk perception was 10% regarding 5-yr risk of DCIS or invasive cancer, 20% regarding lifetime risk, and 50% pertaining to risk of DCIS spreading. The proportion of women reporting ≥ moderate perceived risk of DCIS spreading remained stable over time (25% at baseline; 26% at 18 mos), but this proportion decreased for other perceptions of risk (e.g., at baseline and 18 mos, 51% and 50% of these same women perceived ≥ moderate risk of developing DCIS again within 5 yrs). In a multivariable model, worse financial status (OR 2.6, 95% CI 1.3-5.3) and higher perceived risk on earlier surveys (OR 24.4, 95% CI 12.7-47.2) were the only predictors of ≥ moderate perception of risk of DCIS spreading to other parts of the body in long-term follow-up. Non-significant covariates included age, race, education, grade of DCIS, comedonecrosis, mastectomy, radiation, marital status, employment status, comorbidity, and HADS and RIES scores. This contrasted with earlier survey data, which demonstrated an association between higher risk perceptions and anxiety by HADS and RIES. In long-term follow-up, only 7% were found to be anxious (HADS Anxiety ≥11) and 0.6% were depressed (HADS Depression ≥11). Median SF-36 scores were 48.9 (range 15.7-58.2) and 47.1 (range 23.6-60.3) for the physical and mental components, respectively, consistent with overall good QOL. Conclusions: Women with a history of DCIS continue to harbor inaccurate perceptions of risk of future breast cancer events even at 6 yrs follow-up. Future research should evaluate how these excessive risk perceptions impact health behaviors. Interventions to improve risk perceptions are warranted. Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P2-15-01.