Unmet support and information needs of relatives of patients with advanced or metastatic breast cancer: results of the BRE-BY-MED study.

PURPOSE: Cancer often affects not only the patients but also their relatives, as diagnosis and prognosis, treatment, and side effects can have a significant psychosocial impact. We aimed to investigate unmet information and support needs and quality of life in a German cohort of relatives of metastatic breast cancer (mBC) patients.

METHODS

Between July 2022 and August 2023, adults with mBC were included in the BRE-BY-MED "Breast Cancer Care in Bavaria for Patients with Metastatic Disease" cohort study (DRKS00026601) at the University Hospital Würzburg. Relatives of these patients completed a questionnaire on unmet support and information needs at the 3-month follow-up.

RESULTS

75.8% (n = 25) of the relatives had at least one unmet support need, mostly observed in the categories "medical information about the relative's illness" (54.5%) and "contact person who coordinates the treatment/aftercare" (42.4%). 45.5% (n = 15) of the relatives had at least one information need, with the highest needs in the categories "the likely course of the disease in the relative" (39.4%) and "how to deal with the treatment side effects" (36.4%). In 72.7% and 88.0% of the relatives, respectively, there was evidence for severe depressive or anxiety symptoms.

CONCLUSION

Dedicated support programmes for relatives of patients with mBC should be developed, targeting their unmet support and information needs regarding the disease, treatments, side effects, prognosis, and aftercare. Furthermore, physicians should be aware of actively involving mBC patients' relatives in the disease and treatment process.