Risk-Adjusted Cancer Screening and Prevention (RiskAP): Complementing Screening for Early Disease Detection by a Learning Screening Based on Risk Factors

Breast cancer; Evidence-generating care; Risk-adjusted preventionCáncer de mama; Atención generadora de evidencia; Prevención ajustada al riesgoCàncer de mama; Atenció generadora d'evidències; Prevenció ajustada al riscBackground: Risk-adjusted cancer screening and prevention is a promising and continuously emerging option for improving cancer prevention. It is driven by increasing knowledge of risk factors and the ability to determine them for individual risk prediction. However, there is a knowledge gap between evidence of increased risk and evidence of the effectiveness and efficiency of clinical preventive interventions based on increased risk. This gap is, in particular, aggravated by the extensive availability of genetic risk factor diagnostics, since the question of appropriate preventive measures immediately arises when an increased risk is identified. However, collecting proof of effective preventive measures, ideally by prospective randomized preventive studies, typically requires very long periods of time, while the knowledge about an increased risk immediately creates a high demand for action. Summary: Therefore, we propose a risk-adjusted prevention concept that is based on the best current evidence making needed and appropriate preventive measures available, and which is constantly evaluated through outcome evaluation, and continuously improved based on these results. We further discuss the structural and procedural requirements as well as legal and socioeconomical aspects relevant for the implementation of this concept.The project was funded by the German Federal Ministry of Health (grant No. 2515FSB401 to Rita Schmutzler and Christiane Woopen) for supporting the international expert meetings, and a grant of the EU Horizon 2020 program, BRIDGES (grant No. 634935, PI Peter Devilee, WP5-PI Rita Schmutzler), for the compilation of the most recent findings of genetic risk prediction

Ethical and Legal Aspects of Technology-Assisted Care in Neurodegenerative Disease

Technological solutions are increasingly seen as a way to respond to the demands of managing complex chronic conditions, especially neurodegenerative diseases such as Parkinson’s Disease. All of these new possibilities provide a variety of chances to improve the lives of affected persons and their families, friends, and caregivers. However, there are also a number of challenges that should be considered in order to safeguard the interests of affected persons. In this article, we discuss the ethical and legal considerations associated with the use of technology-assisted care in the context of neurodegenerative conditions

Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson's Disease

Background: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with both motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and can be a burden for caregivers. So far, several questionnaires have been developed to assess quality of life in Parkinsonism, but none of these include the positive sides on well-being such as personal and social resilience factors. Objective: The aim of this study is to develop a digital framework for a longitudinal assessment of quality of life during the progression of Parkinson's disease. Methods: The CHAPO model (Challenges and Potentials) has been established in a vast study by Wagner et al. to assess the quality of life of older people. This model includes environmental and individual factors, life chances, and life results, such as individual life evaluation, from a subjective as well as an objective point of view. Therefore, it has been adapted in several development steps to include the specific aspects that affect quality of life in Parkinsonian syndromes. The development process included 6 steps: definition, refinement, operationalization, piloting/debriefing, adjustment, and integration. Results: The development of the CHAPO-PD model has been completed and it represents the first main result of this study. Conclusion: By taking a holistic understanding of quality of life into account, we expect to detect previously unrecognized factors, which correlate to the subjective well-being of Parkinson's disease patients, and aim to use these findings to improve the health care structures for patients with Parkinson's disease and related disorders

Predementia Counseling

<jats:p> Abstract: Improving risk prediction of Alzheimer’s dementia poses challenges to healthcare professionals, patients, and their social environment. Moreover, predictive diagnosis faces limited operationalized clinical recommendations. In this study, we developed manuals for counseling individuals with mild cognitive impairment on their biomarker-based dementia risk prediction; we interviewed 16 participants postcounseling. The interview analysis examines sources of knowledge concerning the decision regarding risk prediction. Subsequently, an interdisciplinary interpretation discusses implications for practice. By focusing on sources of the participants’ knowledge, we identified epistemic authorities, such as (former) medical-related professional background or previous disease experiences. The findings provide information on cues and conversational elements for improving counseling sessions. Sensibly integrated language-based and legal considerations may achieve a targeted and efficient joint decision-making process. </jats:p&gt