Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE)

Abstract

Subgroups of MBC patients report long-term, life-altering consequences of MBC and its treatments, which relate to important health outcomes. Clinical implications and recommendations are discussed.

Psychosocial aspects and life project disruption in young women diagnosed with metastatic hormone-sensitive HER2-negative breast cancer

“…In agreement with other studies, post hoc analyses within this study revealed that young women (<50 years), women with low financial resources or with children under 18 years of age at home, were most likely to report collateral damage and to have a poorer QoL [34]. Mortality/uncertainty, financial and employment concerns were higher for those patients with children under 18 living at home compared to those not meeting this criteria [34]. Compared to older women, concerns about mortality/uncertainty, financial and interpersonal concerns were higher in young women, greater interpersonal concerns being directly related to sleep disruption.…”

“…The SHINE project resulted in the first Patient-Reported Outcome questionnaire developed based on the MBC-specific concerns, experiences, and collateral damages as reported directly by the patients’ own words. In agreement with other studies, post hoc analyses within this study revealed that young women (<50 years), women with low financial resources or with children under 18 years of age at home, were most likely to report collateral damage and to have a poorer QoL [ 34 ]. Mortality/uncertainty, financial and employment concerns were higher for those patients with children under 18 living at home compared to those not meeting this criteria [ 34 ].…”

“…According to the Metastatic Breast Cancer Collateral Damage Project , MBC influences all aspects of patients’ lives, including financial, vocational, psychological, social, and physical domains. Participants under the age of 50, reported higher concerns about mortality, uncertainty, financial concerns, and interpersonal concerns [ 34 ].…”

“…Throughout several studies, MBC patients have reported poor QoL, more pain and fatigue, and greater difficulty with physical, social, and emotional functioning when compared to those with early-stage disease. The assessment devices used in those studies were designed for cancer patients generally and, thus, do not necessarily capture the disease-specific concerns of MBC patients [ 34 ]. In this sense, traditional QoL assessments might not capture MBC specific life-influencing aspects.…”

Study design and protocol for tailored Acceptance and Commitment Therapy (ACT) to optimize quality of life in women living with metastatic breast cancer

“…Nevertheless, women with metastatic breast cancer face unique challenges as they cope with life-limiting prognoses [ 7 , 8 ], including coping with uncertainty, loss of functioning, disruption of social/occupational roles, fear of death and suffering, concern for loved ones, and communication with healthcare providers. Women also experience significant symptoms and side effects related to breast cancer-specific treatments, including hot flashes, joint pain, neuropathy, vaginal dryness, sexual dysfunction, and issues regarding body image and feminine identity [ [9] , [10] , [11] ].…”