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Bartels R.H.M.A.,Radboud University Nijmegen | Boogaarts H.,Radboud University Nijmegen | Westert G.,IQ healthcare
Acta Neurochirurgica | Year: 2013

Background: Regularly, patients are not involved in development of evaluative tools. Investigators define outcomes according to their interests. These can be different with those of the patients. Therefore, it may be difficult for patients to choose between treatment options, because the outcomes' measurements may not reflect their problems in daily life. Most ideally, patients are involved from the beginning in the development of an outcome measurement tool. In this study, a new concept was demonstrated in which a questionnaire was developed in collaboration with patients to evaluate the quality of surgical care of a frequently encountered entity (carpal tunnel syndrome) that is meaningful for and understandable by patients. Methods: Through a patient participatory research in an academic hospital, 50 consecutive patients who recently underwent surgical decompression of carpal tunnel syndrome were asked to optimize a questionnaire. An existing questionnaire was sent to the patients with the request to grade the relevance of each question. They were also offered the possibility to add questions from their point of view. Results: All questions were found relevant. Finally, the questionnaire was modified by adding one question proposed by the patients. They wanted to include a question that would evaluate the effect of the treatment. Therefore, a question was introduced to evaluate the effect of the surgery on the symptoms and signs with a six-item Likert scale varying from severely worsened to free of signs and symptoms. Finally, the EQ-5D-5 L was added as a measure of quality of life. Conclusions: The participation of patients is essential but until now not usual when a tool for evaluating the success of a treatment is developed. Information that is meaningful for patients but not obligate for researchers can easily be missed in the classical development of outcome measurement tools. This information will be crucial when future patients try to understand the findings of research in order to make an appropriate decision between eventual treatment options. © 2013 Springer-Verlag Wien. Source


De Vries M.C.,Leiden University | Houtlosser M.,Leiden University | Wit J.M.,Leiden University | Engberts D.P.,Leiden University | And 3 more authors.
BMC Medical Ethics | Year: 2011

Background: Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. Methodology. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Results: Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Conclusion: Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. © 2011 de Vries et al; licensee BioMed Central Ltd. Source


van der Vorm A.,IQ healthcare | van der Laan A.L.,IQ healthcare | Borm G.,Biostatistics and Health Technology Assessment | Vernooij-Dassen M.,Healthcare Alzheimer Center Nijmegen | And 3 more authors.
Clinical Genetics | Year: 2010

Most publications on the ethical aspects of genetic research into Alzheimer's Disease (AD) concentrate on the differences between the opinions of professionals and non-professionals. Differences in rating of morally relevant issues between groups of professionals have not yet been described. A modified Delphi study in two rounds was held to identify differences between groups of experts (i.e. clinicians, representatives of patient organisations, ethicists and persons with a commercial background). The strongest correlation was found between the opinions of ethicists and representatives of patient organisations (0.67) and between clinicians and ethicists (0.62). Moderate correlation (0.55) was found between the opinions of clinicians and representatives of patient organisations. Persons with a commercial background showed a weak correlation with clinicians (0.41), ethicists (0.35) and representatives of patient organisations (0.30). These differences in rating of morally relevant issues between various professional groups are relevant for clinical practice and dementia care, particularly the different rating of prenatal diagnosis found between clinicians and representatives of patient organisations. Interdisciplinary consultations between various professional groups -including at least researchers, clinicians and ethicists -are recommended to guarantee that all considerations will be incorporated into the debate on ethical issues of genetic research into AD. © 2009 John Wiley & Sons A/S. Source


Eppenga W.L.,IQ healthcare | Eppenga W.L.,Radboud University Nijmegen | Derijks H.J.,IQ healthcare | Derijks H.J.,University Utrecht | And 4 more authors.
Journal of the American Medical Informatics Association | Year: 2012

Objective: To compare the clinical relevance of medication alerts in a basic and in an advanced clinical decision support system (CDSS). Design: A prospective observational study. Materials and methods: We collected 4023 medication orders in a hospital for independent evaluation in two pharmacotherapy-related decision support systems. Only the more advanced system considered patient characteristics and laboratory test results in its algorithms. Two pharmacists assessed the clinical relevance of the medication alerts produced. The alert was considered relevant if the pharmacist would undertake action (eg, contact the physician or the nurse). The primary analysis concerned the positive predictive value (PPV) for clinically relevant medication alerts in both systems. Results: The PPV was significantly higher in the advanced system (5.8% vs 17.0%; p<0.05). Significant differences were found in the alert categories: druge (drug) interaction (9.9% vs 14.8%; p<0.05), drugeage interaction (2.9% vs 73.3%; p<0.05), and dosing guidance (5.6% vs 16.9%; p<0.05). Including laboratory values and other patient characteristics resulted in a significantly higher PPV for the advanced CDSS compared to the basic medication alerts (12.2% vs 23.3%; p<0.05). Conclusion: The advanced CDSS produced a higher proportion of clinically relevant medication alerts, but the number of irrelevant alerts remained high. To improve the PPV of the advanced CDSS, the algorithms should be optimized by identifying additional risk modifiers and more data should be made electronically available to improve the performance of the algorithms. Our study illustrates and corroborates the need for cyclic testing of technical improvements in information technology in circumstances representative of daily clinical practice. Source


Eppenga W.L.,IQ healthcare | Derijks H.J.,ZANOB | Derijks H.J.,University Utrecht | Conemans J.M.H.,ZANOB | And 3 more authors.
Pharmaceutisch Weekblad | Year: 2015

OBJECTIVE: To compare a basic and an advanced clinical decision support system (CDSS) regarding the clinical relevance of medication alerts. DESIGN: Prospective observational study. METHODS: We collected 4023 medication orders in one hospital for independent evaluation in two pharmacotherapy-related decision support systems. Only the more advanced system considered patient characteristics and laboratory test results in its algorithms. Two pharmacists assessed the clinical relevance of the medication alerts. The alert was considered relevant if the pharmacist would take action (e.g. contact the physician or the nurse). The primary analysis concerned the positive predictive value (PPV) for clinically relevant medication alerts in both systems. RESULTS: The PPV was significantly higher in the advanced system (5.8% versus 17.0%; P < 0.05). Significant differences were found in the alert categories drug(-drug) interaction (9.9% versus 14.8%; P < 0.05), drug-age interaction [2.9% versus 73.3%; P < 0.05) and dosing guidance (5.6% versus 16.9%; P < 0.05). The impact of adding laboratory values and other patient characteristics resulted in a significantly higher PPV for the advanced CDSS compared to the basic CDSS (12.2% versus 23.3%; P < 0.05). CONCLUSION: The advanced CDSS produced a higher proportion of clinically relevant medication alerts, but the number of irrelevant alerts remained high. To improve the PPV of the advanced CDSS, the algorithms should be optimized by identifying additional risk modifiers and make more data electronically available to improve the performance of the algorithms. Our study illustrates and corroborates the need of cyclic testing of technical improvements in information technology in circumstances representative for daily clinical practice. Source

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