The 81-item IOC questionnaire is described in detail elsewhere (33 (link)). Briefly, all items are scored on a five-point scale through which respondents indicate their level of agreement (strongly disagree, disagree, neutral, agree, or strongly agree). The instrument consists of 70 items that are designed to be applicable to all long-term cancer survivors, three items that are designed to be applicable specifically to respondents who are currently employed, four relationship items that are designed to be applicable to respondents who do not currently have a partner, and four items that are designed to be applicable to respondents who have a partner.
In addition to the IOC questionnaire, the materials mailed at the time of resurvey included the Center for Epidemiologic Studies Depression (CES-D) scale, a widely used and well-validated 20-item instrument for assessing depressive symptoms (36 ), and Breast Cancer Prevention Trial (BCPT) Symptom Checklist, a scaled, 18-item instrument designed to assess physical effects of medical interventions to prevent and treat breast cancer with validated subscales (37 (link),38 (link)).
We used responses from the baseline survey (administered 2000-2002) to ascertain age, race or ethnicity, education level, age at diagnosis, type of surgery (breast conserving versus mastectomy), and receipt of chemotherapy. We used responses from the resurvey to ascertain income, current menopausal status, use of adjuvant hormonal therapy (current and past tamoxifen use and current and past aromatase inhibitor use), current use of antidepressants, diagnosis of 30 comorbid medical conditions, and self-assessed general health status (a single item in which respondents rated their health on a five-point scale from excellent to poor). Body mass index was computed from self-reported height and weight at resurvey. Responses to the question “Are you currently married, living together as married, or in a significant relationship?” on the IOC questionnaire were used to ascertain partnered vs non-partnered status. Responses to the question “Were you employed and earning income at some time during the last 12 months?” on the IOC questionnaire were used to ascertain employment status. Recurrences and new primary cancers were ascertained by mailed semi-annual health status update questionnaires that asked participants to report any events occurring in the preceding 6 months.