Informational needs and the quality of life of patients in their first year after metastatic breast cancer diagnosis.

Background: Little is known about the informational needs and quality of life (QOL) of patients with metastatic breast cancer (MBC) within the first year of their diagnosis.

Objectives: To describe the informational needs and QOL of patients with MBC within the first year of diagnosis, and to identify sociodemographic and medical factors that may be associated with informational needs and QOL.

Methods: 52 patients (50 women, 2 men) enrolled within a year of diagnosis of MBC completed a cross-sectional, self-administered paper survey that included patient demographics, the Toronto Informational Needs Questionnaire-Breast Cancer (TINQ), the Hospital Anxiety and Depression Scale (HADS), and Medical Outcomes Study Short Form-36 (SF-36). High informational need was defined as a TINQ score of ≥ 200.

Results: Of the total 52 patients, 69% (35/52) had high informational needs, 20% met the criteria for anxiety (HADS-Anxiety score, ≥ 11), and 8% met the criteria for depression. SF-36 scores were lower in all 8 subscales compared with the general population. Multivariate analyses showed that patients who were married or living as married (OR, 6.1; 95% CI, 1.4-28.9) and patients with de novo MBC (OR, 2.8; 95% CI, 0.5-14.3) or a shorter disease-free interval (DFI; < 5 years; OR, 24.2; 95% CI, 3.1-187.4) were more likely to have more informational needs (C statistic, 0.824) than were patients with a longer DFI (≥ 5 years).

Limitations: This is a small cross-sectional study of a single academic institution.

Conclusions: Patients with recently diagnosed MBC have high informational needs and decreased overall QOL. Additional research and supportive services meeting the informational and psychosocial needs of patients living with MBC are warranted.