Purpose: This study aimed to develop and pretest a systematic conversation approach for nurses to tailor aftercare to oncology patient's goals, unmet needs and wishes. Methods: We used an iterative developmental process for complex interventions: 1. Identifying problems 2. Identifying overall objectives 3. Designing the intervention 4. Pretesting and adapting the intervention. Results: The main results of the problem identification were: non-systematic and incomplete screening of potential issues, caveats in providing information, and shared decision-making. The overall objective formulated was: To develop a model for aftercare conversations based on shared goal-setting and decision-making. The conversation approach consists of four phases: 1. Preparation of the consultation including a questionnaire, 2. Shared goal-setting by means of a tool visualizing domains of life, and 3. Shared care planning by means of an overview of possible choices in aftercare, a database with health care professionals and a cancer survivorship care plan. 4. Evaluation. The results of the pretest revealed that the conversation approach needs to be flexible and tailored to the patient and practice setting, and embedded in the care processes. The conversation approach was perceived as enhancing patient-centeredness and leading to more in-depth consultations. Conclusion: The conversation approach was developed in co-creation with stakeholders. The results of the pretest revealed important implications and suggestions for implementation in routine care. The aftercare conversation approach can be used by nurses to provide tailored patient-centered evidence-based aftercare. Tailored aftercare should support oncology patient's goals, unmet needs and wishes. Further tailoring is needed.
Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
Every year in the Netherlands around 10.000 people are diagnosed with non-small cell lung cancer, commonly at advanced stages. In 1 to 2% of patients, a chromosomal translocation of the ROS1 gene drives oncogenesis. Since a few years, ROS1+ cancer can be treated effectively by targeted therapy with the tyrosine kinase inhibitor (TKI) crizotinib, which binds to the ROS1 protein, impairs the kinase activity and thereby inhibits tumor growth. Despite the successful treatment with crizotinib, most patients eventually show disease progression due to development of resistance. The available TKI-drugs for ROS1+ lung cancer make it possible to sequentially change medication as the disease progresses, but this is largely a ‘trial and error’ approach. Patients and their doctors ask for better prediction which TKI will work best after resistance occurs. The ROS1 patient foundation ‘Stichting Merels Wereld’ raises awareness and brings researchers together to close the knowledge gap on ROS1-driven oncogenesis and increase the options for treatment. As ROS1+ lung cancer is rare, research into resistance mechanisms and the availability of cell line models are limited. Medical Life Sciences & Diagnostics can help to improve treatment by developing new models which mimic the situation in resistant tumor cells. In the current proposal we will develop novel TKI-resistant cell lines that allow screening for improved personalized treatment with TKIs. Knowledge of specific mutations occurring after resistance will help to predict more accurately what the next step in patient treatment could be. This project is part of a long-term collaboration between the ROS1 patient foundation ‘Stichting Merels Wereld’, the departments of Pulmonary Oncology and Pathology of the UMCG and the Institute for Life Science & Technology of the Hanzehogeschool. The company Vivomicx will join our consortium, adding expertise on drug screening in complex cell systems.
