BACKGROUND: Historically, research efforts have focused on developing new treatments, education, and support programs for metastatic breast cancer (MBC) patients. Less emphasis has been placed on understanding quality of life (QoL) issues for this underserved population. However, when faced with a metastatic diagnosis, managing, and minimizing the collateral damage resulting from sequential and often continuous treatments is critical to improving quality of life. Through this preliminary analysis, our aim is to understand the unique experience of MBC and identify potential areas of critical need.
METHODS: The Health of Women (HOW) Study™ is an online study for women and men, with and without a history of breast cancer, aimed at identifying causes of breast cancer. The (HOW) Study periodically releases new questionnaires and is currently comprised of ten questionnaires collecting information on personal and family health history, lifestyle, environmental exposures, breast cancer diagnosis and treatment, and QoL. Over 53,000 people are enrolled in (HOW), of which, 11,508 have completed the QoL questionnaire. Areas covered included chronic conditions, symptoms, moods and feelings, reproductive health, daily activities, patient-provider communication, and social and financial concerns. QoL measures were compared between participants with no history of breast cancer (NoHx), with non-metastatic breast cancer (non-MBC), and with MBC.
RESULTS: Of the 11,508 respondents, 3,965 reported a diagnosis of breast cancer—of those, 205 were metastatic. The majority were female (99%) and non-Hispanic White (95%). MBC were younger (28%<50 years, 65% 50-69 years) than non-MBC (20%<50 years, 69% 50-69 years; p<0.05). Overall, participants with MBC reported a lower QoL (20% excellent, 10% poor) than non-MBC (41% excellent, 3% poor) and NoHx participants (44% excellent, 2% poor; p<0.05). MBC and non-MBC participants did not differ on hot flashes, vaginal problems or fertility concerns. However, MBC participants were more likely than non-MBC participants to report: 1) Symptoms — including digestive, mouth and nose, hair and skin, eye, pain, fatigue and night sweats — significantly affecting their lives; 2) Problems with concentration, mood swings, anxiety, depression, memory, and sleeping; 3) Attributing each symptom and/or problem to their breast cancer treatment; 4) Problems performing daily activities; 5) Better communication with their clinical team; 6) Severe financial concerns including difficulty with medical expenses, losing one's job and/or health insurance, not meeting the financial needs of one's family and not being able to pursue career of choice; and 7) Severe social concerns including feeling dependent, isolated, and being treated differently (all p-values<0.05).
CONCLUSIONS: Participants with MBC had a considerably diminished QoL compared to non-MBC and NoHx participants. We identified key areas of concern and multiple areas of collateral damage not standard in research assessment. Our next steps are to use these data to develop a formal, qualitative questionnaire that includes newly identified collateral damage issues, and expand our sample of MBC. The combined data will guide us in developing recommendations for improving the QoL for people with MBC.
Citation Format: Love SM, Bernstein L, Obidegwu A, Ottenbacher A, Eshraghi L, Clague J. Collateral damage from metastatic breast cancer – Preliminary results [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P4-20-03.