Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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Purpose: Head and neck cancer (HNC) treatment often leads to physical and psychosocial impairments. Rehabilitation can overcome these limitations and improve quality of life. The aim of this study is to obtain an overview of rehabilitation care for HNC, and to investigate factors influencing rehabilitation provision, in Dutch HNC centers, and to some extent compare it to other countries. Methods: An online survey, covering five themes: organizational structure; rehabilitation interventions; financing; barriers and facilitators; satisfaction and future improvements, among HNC healthcare- and financial professionals of Dutch HNC centers. Results: Most centers (86%) applied some type of rehabilitation care, with variations in organizational structure. A speech language therapist, physiotherapist and dietitian were available in all centers, but other rehabilitation healthcare professionals in less than 60%. Facilitators for providing rehabilitation services included availability of a contact person, and positive attitude, motivation, and expertise of healthcare professionals. Barriers were lack of reimbursement, and patient related barriers including comorbidity, travel (time), low health literacy, limited financial capacity, and poor motivation. Conclusion: Although all HNC centers included offer rehabilitation services, there is substantial practice variation, both nationally and internationally. Factors influencing rehabilitation are related to the motivation and expertise of the treatment team, but also to reimbursement aspects and patient related factors. More research is needed to investigate the extent to which practice variation impacts individual patient outcomes and how to integrate HNC rehabilitation into routine clinical pathways.
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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.
Societal changes force hospitals to improve their patient journeys. And although hospitals and hotels do differ on quite some aspects, there are also a lot of similarities. Moreover, hotels are known for doing their utmost to please their guests and to focus on their guest experiences. Therefore, hospitals are looking at what they can learn form the hotel industry. The Antoniushove is anxious to retain its high quality and where possible to improve it. That is why, together with the Hotelschool, they want to investigate where the patient journey can be improved. Medical students are ‘critical thinkers’ as they are educated in an academic and evidence based environment. Hotelschool students are generally seen as having excellent ‘soft skills’ like creativity and problem solving skills. Critical thinking and soft skills are both seen as important 21st century skills. This research is a first exploration of where there are possibilities for improvement on patient journeys. Couples existing of one medical student and one hotelschool student will form a team and follow breast and colorectal patients during their hospital visit. This combination of students has never occurred before in such a research. It will allow students from both backgrounds to look at the patient journey though the eyes of the other and to learn form each other’s competences. Main research methods to be applied will be shadowing, guided tours and interviews, all of course with informed consent. Medical staff from the Antoniushove and research experts form the hotelschool will supervise the research. This research is a preliminary research for a bigger research and should result in grant proposal for the follow-up research.
How does a specific lung cancer become resistant towards medication.The occurrence of a chromosomal translocation resulting in a ROS1 gene fusion in lung cancer is relatively rare with around 1-2% of all cases. Both Dutch (Stichting Merels Wereld) and world-wide (ROS1ders) patient advocacy groups work hard to raise awareness and bring researchers together to close the knowledge gap on ROS1 driven oncogenesis and increase the optionsfor treatment. A notorious hurdle is to achieve durable responses due to development of resistance.Ongoing mutations occurring in tumour cells lead to a heterogeneous genomic landscape and will result in outgrowth of the fastest growing tumour cell population resistant to the applied drug. The currently known resistance mechanisms can be divided in on-target (i.e. mutations in the kinasedomain of ROS1) and off-target (providing ROS1 independent growth support) mechanisms. The currently available drugs target the ROS1-fusion gene positive lung cancer cells. In addition, some of the drugs also target cancer cells with specific ROS1 resistance mutations allowing effective sequentialtreatment upon disease progression. Selection of the most optimal treatment is largely a ‘trial and error’ approach. Patients and their doctors ask for better prediction of the most effective follow-up treatment upon development of resistance. Medical Life Science & Diagnostics can help to improvetreatment by developing cell culture models which mimic the situation in resistant tumour cells.Understanding the impact of specific mutations on disease behaviour will aid in the development of patient-tailored therapeutic approaches, ultimately improving patient outcomes.
