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)
Patients diagnosed with esophageal cancer have to deal with the consequences, such as major impact on their physical status and quality of life. A digital self-management tool could be a solution to support these patients in their self-management during the peri-operative period. This dissertation resulted in a better understanding of patients' needs and desires for (digital) self-management support during pre- (and post-operative) care. In addition, a core set consisting of the most relevant topics for self-management was developed. Differences were found between esophageal cancer patients in their expectations and needs regarding self-management and eHealth for self-management support. It is important to apply a diversity of forms of support given the increased desire to provide person-centered care and the fact that no single approach will meet the needs of all patients at all times. The development of a new (digital) self-management intervention to support these patients can be based on the results of the various studies in this dissertation.
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PurposeCancer‐related fatigue is one of the most distressing side effects of childhood cancer treatment. Physical activity can decrease fatigue and has positive effects on other health outcomes. Most research on physical activity pertains to adults, and the few studies that focus on children have limited follow‐up time. This study evaluates cancer‐related fatigue in children and its association with physical activity over a one‐year time period.MethodsSixty‐eight children with cancer (7–18 years) were recruited during or within the first year after treatment. Physical activity (Actical activity monitor) and cancer‐related fatigue (Pediatric Quality‐of‐Life Questionnaire Multidimensional Fatigue Scale (PedsQL‐MFS), self‐ and parent‐ reports) were assessed at baseline, 4 months, and 12 months. PedsQL‐MFS scores were compared with Dutch norms. Longitudinal association of cancer‐related fatigue with physical activity was evaluated (No. NTR 1531).ResultsGenerally, PedsQL‐MFS scores were worse than norms at baseline and 4 months, and recovered by 12 months except for the parent‐proxy scores in adolescents. Younger children (≤12 years) self‐reported comparable or better scores than norms. Physical activity generally improved over time, but patients mostly remained sedentary. During follow‐up, increased physical activity was associated with less cancer‐related fatigue.ConclusionCancer‐related fatigue in children improves over time, and increased physical activity is associated with less cancer‐related fatigue. Given the sedentary lifestyle of this population, the positive effect of physical activity on cancer‐related fatigue, and the many other health benefits of an active lifestyle, it is important to stimulate physical activity in childhood cancer patients and survivors.
Relatie tussen spiermassa en vroegtijdig stoppen van chemotherapie bij patienten met hoofd-halskankerIn this study, we aim to assess whether low pre-treatment muscle mass, measured with CT at thoracic (T4) or lumbar level (L3) is associated with early termination of chemotherapy related to toxicity in head and neck cancer (HNC) patients.
Structural colour (SC) is created by light interacting with regular nanostructures in angle-dependent ways resulting in vivid hues. This form of intense colouration offers commercial and industrial benefits over dyes and other pigments. Advantages include durability, efficient use of light, anti-fade properties and the potential to be created from low cost materials (e.g. cellulose fibres). SC is widely found in nature, examples include butterflies, squid, beetles, plants and even bacteria. Flavobacterium IR1 is a Gram-negative, gliding bacterium isolated from Rotterdam harbour. IR1 is able to rapidly self-assemble into a 2D photonic crystal (a form of SC) on hydrated surfaces. Colonies of IR1 are able to display intense, angle-dependent colours when illuminated with white light. The process of assembly from a disordered structure to intense hues, that reflect the ordering of the cells, is possible within 10-20 minutes. This bacterium can be stored long-term by freeze drying and then rapidly activated by hydration. We see these properties as suiting a cellular reporter system quite distinct from those on the market, SC is intended to be “the new Green Fluorescent Protein”. The ability to understand the genomics and genetics of SC is the unique selling point to be exploited in product development. We propose exploiting SC in IR1 to create microbial biosensors to detect, in the first instance, volatile compounds that are damaging to health and the environment over the long term. Examples include petroleum or plastic derivatives that cause cancer, birth defects and allergies, indicate explosives or other insidious hazards. Hoekmine, working with staff and students within the Hogeschool Utrecht and iLab, has developed the tools to do these tasks. We intend to create a freeze-dried disposable product (disposables) that, when rehydrated, allow IR1 strains to sense and report multiple hazardous vapours alerting industries and individuals to threats. The data, visible as brightly coloured patches of bacteria, will be captured and quantified by mobile phone creating a system that can be used in any location by any user without prior training. Access to advice, assay results and other information will be via a custom designed APP. This work will be performed in parallel with the creation of a business plan and market/IP investigation to prepare the ground for seed investment. The vision is to make a widely usable series of tests to allow robust environmental monitoring for all to improve the quality of life. In the future, this technology will be applied to other areas of diagnostics.
Pre-eclampsia (PE) is a common and severe pregnancy complication and is associated with substantial perinatal morbidity and mortality in mothers and infants. The disease is often characterized by a non-specific presentation which makes it challenging for physician to diagnose PE during regular pregnancy check-ups. To date, there are no diagnostic tests on the market for detection of PE early in pregnancy (first trimester). In this project, we will develop a platform to sensitively analyse calcium-binding proteins (CBPs) which will unlock the full potential of CBPs as predictive PE markers. The technology will also be applicable for other diseases (e.g., dementia and cancer) where CBPs are also known to play a key role in disease pathophysiology. We will develop with phage display antibodies that can recognize calcium binding to specific motifs in proteins. To this end we will synthesize peptide motifs with and without calcium to select antibodies that are specific for calcium bound proteins. These antibodies will be validated for their clinical use. For this goal we will use serum samples from the Improved studie (EU subsidised study) to determine if we can recognize pre-eclampsia in a very early stage. This knowledge can lead to a better treatment of pregnant women suffering from this disease and also will probably increase the well-being for the baby born and the development further in life.
