Designing, developing, and evaluating a person-centered support model for women with breast cancer treated with endocrine therapy

Abstract: Breast cancer is the most common cancer among women worldwide. Approximately 70% of all breast cancers are estrogen positive and are recommended for treatment with adjuvant endocrine therapy (ET) for five to ten years, which significantly reduces mortality rates. However, problems related to ET can be experienced by patients. The overall aim of this thesis is to design, develop and evaluate a person-centered support model (PSM) to empower patients with breast cancer treated with ET. This PSM will be delivered by a nurse navigator at a surgical outpatient clinic. The methods used included focus group interviews (Study I) with 25 patients approximately three years after they started ET. A mixed method study (Study II) was performed that included 39 patients who described their first three months of experience with their ET in a diary. Intervention mapping was used in Study III to design and develop a PSM using an action research design. Study IV tested the feasibility of the PSM with 20 patients in a control group and 21 patients in an intervention group using a quasi-experimental design. Three questionnaires regarding patient self-efficacy, perceived symptoms and quality of care were administered at baseline and after three months. The findings showed that ET needed to be managed due to side effects but also that prior knowledge caused hesitation. The analysis resulted in three categories that described patients’ experiences: ET created discomfort, patients experienced feelings of abandonment, and the most frequently reported problem was sleeping difficulties. Patients used both emotion- and problem-focused coping mechanisms. In the development of the PSM, patients’ diverse views of ET and needs were highlighted, and a support model built upon a person-centered approach seemed appropriate. The PSM was evaluated for its feasibility. Ninety-five percent of patients completed the PSM. The preferred follow-up was by telephone, and up to four follow-up sessions were held during the 12-week intervention. There were no significant differences in patient self-efficacy, perceived symptoms, or quality of care between the control and intervention groups. The conclusion is that the PSM was perceived to be feasible in terms of its process, resources, scientific challenges and acceptability among patients