Symptoms and need for individualised support during the first year after primary treatment for breast cancer—A qualitative study

Abstract

BackgroundThe survival rate among patients with breast cancer is high. It is well described that after primary treatment patients may experience symptoms and concerns but the needs and resources during the first year to manage everyday life are not well described.AimTo describe experiences of symptom distress, needs and support during the first year after primary treatment for breast cancer from the perspectives of patients and healthcare professionals.DesignQualitative descriptive.MethodsData collection through individual interviews with patients (n = 17) and a focus group interview with healthcare professionals (n = 7). Data was analysed using thematic analysis and resulted in three themes.ResultsThe first theme, ‘Struggling with symptoms and changes in everyday life’ shows how symptoms and concerns interfered with the everyday life of patients and in some situations even impeded them. Patients try to adapt to their new situation by creating new routines and managing symptoms through self‐care. The second theme, ‘Adaption in a period of uncertainty’ describes thoughts about cancer recurrence and doubts about continuing with the endocrine therapy if symptoms prolong. In the third theme, ‘Support and need for individualized follow‐up care’ healthcare professionals described that they provide support by being available and by giving both verbal and written information. Patients expressed that the information could be too general and voiced a need for more individually tailored support.ConclusionDuring the first year after primary treatment, patients with breast cancer describe how they try to manage by themselves, but express both unmet needs and a wish for extended and more individually tailored support. The healthcare professionals recognised that patients lack a structured plan for the first year and the need for continued support. This stresses a need for development of care models with special consideration towards individualised support after breast cancer treatment.No Patient or Public ContributionThere was no patient or public involvement in the design or conduct of the study. The interview study was not considered to benefit from involving patients or healthcare professionals when designing the interview guides as they were developed through literature and previous research of patients treated for breast cancer.

Common patient‐reported sources of cancer‐related distress in adults with cancer: A systematic review

“…While CRD severity is known to be positively correlated with greater numbers of unmet needs, specific needs contributing to CRD (sources of CRD) vary by clinical and demographic characteristics. 78 , 79 , 80 For example, a person may use substances, such as use of cannabinoids for management of appetite, nausea, or pain, but not be distressed by it.…”