Nurse-led decision coaching by specialized nurses for healthy BRCA1/2 gene mutation carriers - adaptation and pilot testing of a curriculum for nurses: a qualitative study

Abstract

Background Women with BRCA1/2 mutations are at high risk to develop breast and ovarian cancer. To support these women to participate in shared decision-making, structured nurse-led decision coaching combined with an evidence-based decision aid may be employed. In preparation of the interprofessional randomized controlled trial to evaluate a decision coaching program to support preventive decisions of healthy female BRCA 1/2 gene mutation carriers (EDCP-BRCA), we adapted and piloted an existing training program for specialized nurses and included elements from an existing physician communication training. Methods The training was adapted according to the six-step-approach for medical curriculum development. The educational design is based on experience- and problem-based learning. Subsequently, we conducted a qualitative pilot study. Nurses were recruited from six German centers for familial breast and ovarian cancer. The acceptability and feasibility were assessed by structured class observations, field notes and participants’ feedback. Data were analyzed using qualitative content analysis. The training was revised according to the results. Due to the COVID-19 pandemic, the patient intervention was adapted as a virtual coaching and a brief additional training for nurses was added. Results The training consists of two modules (2 + 1 day) that teach competences in evidence-based medicine and patient information, (risk) communication and decision coaching. One pilot test was conducted with six nurses of which three were specialized and experienced in patient counselling. A final set of eight main categories was derived from the data: framework conditions; interaction; schedule, transparency of goals, content, methods, materials and practical relevance and feasibility. Overall, the training was feasible and comprehensible. Decision coaching materials were awkward to handle and decision coaching role plays were set too short. Therefore, materials will be sent out in advance and the training was extended. Conclusions Specialized nurses are rarely available and nurse-led counselling is not routinely implemented in the centers of familial breast and ovarian cancer. However, training of less qualified nurses seems feasible. Decision coaching in a virtual format seems to be a promising approach. Further research is needed to evaluate its feasibility, acceptability and effectiveness. Trial registration The main trial is registered under DRKS-ID: DRKS00015527.

Implementing mainstream genetic counseling within the area‐wide network of the German Consortium Hereditary Breast and Ovarian Cancer (GC‐HBOC): Satisfaction of primary care providers with the provided state‐of‐the‐art training by the Cologne Center

“…To meet with the multidisciplinary team approach, we developed a separate curriculum for specially trained nurses (Berger-Höger et al, 2022;Isselhard et al, 2020).…”

“…The growing satisfaction could also be due to the greater routine of the instructors and the growing competence of the participants during the training. To meet with the multidisciplinary team approach, we developed a separate curriculum for specially trained nurses (Berger‐Höger et al., 2022; Isselhard et al., 2020).…”

Healthcare Professionals’ Learning Needs and Perspectives on Essential Information in Genetic Cancer Care: A Systematic Review

“…Most studies (85%) reported the perspectives of HCPs who cared for individuals affected by hereditary breast and ovarian cancer (HBOC) [1,10,11,[20][21][22]24,26,[28][29][30], followed by one study focusing on Lynch syndrome [27], and one study focusing on various hereditary cancer syndromes [25]. Nine studies [1,10,11,20,22,24,25,28,29] examined the learning needs of HCPs regarding risk management and counseling for families with hereditary cancer (Table 2); eight studies [1,10,11,20,24,25,28,29] compared HCPs' learning needs according to their profession (Table 2); and six studies [10,21,22,26,27,30] explored the perspectives of HCPs on information that is essential for families with hereditary forms of cancer (Table 3). Decision-making process in their centers • [20] Optimal time to provide aid in making a decision • [25] Factors to consider when recommending risk management strategies…”

“…Nine studies [1,10,11,20,22,24,25,28,29] examined the learning needs of HCPs regarding risk management and counseling for families with hereditary cancer (Table 2); eight studies [1,10,11,20,24,25,28,29] compared HCPs' learning needs according to their profession (Table 2); and six studies [10,21,22,26,27,30] explored the perspectives of HCPs on information that is essential for families with hereditary forms of cancer (Table 3). Decision-making process in their centers • [20] Optimal time to provide aid in making a decision • [25] Factors to consider when recommending risk management strategies…”

Primary Prevention and Early Detection of Hereditary Breast Cancer

“…It has been shown that perceived control and reduction of psychological distress are eminent for comprehensive decision making [5, 66]. Several approaches to support medical counseling have been developed [67]. The implementation of digital health concepts could be useful for counselees as well as counseling physicians by tailoring individual information using low-threshold communication [68].…”