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4 results on '"Björn Schmitz-Luhn"'

1. Study protocol of the HessenKohorte2042: a prospective, longitudinal cohort study characterising quality of life in people with Parkinson’s disease and their caregivers using a bio-psycho-social approach

Author

Lars Timmermann, Heidrun Golla, Christiane Woopen, Petra Ina Pfefferle, Urs M Nater, David José Pedrosa, Urs Kleinholdermann, Franziska Thieken, Marina Christine Ruppert-Junck, Marlena van Munster, Anna Julia Pedrosa, Johanne Stümpel, Vincent Hammes, Björn Schmitz-Luhn, Anna Storms, and Nadine Skoluda

Subjects
Medicine
Abstract

Introduction Quality of life (QoL) is of paramount importance as an outcome to monitor and guide therapies for people with Parkinson’s disease (PwPD). In particular, due to the heterogeneous symptoms that PwPD may experience during their disease course, QoL can deteriorate not only in patients but also in their caregivers, with a variety of psychosocial consequences. However, there is a lack of longitudinal studies that explore how QoL evolves over time and what factors are significant. Furthermore, holistic approaches that consider bio-psycho-social determinants are rare. In the worst cases, these gaps can lead to suboptimal care and therefore unmet needs for patients and their caregivers, resulting in unnecessary symptom burden and increased healthcare costs for society.Methods and analysis This prospective, longitudinal study will follow 1000 PwPD along with their caregivers for 20 years, with up to 40 semi-annual assessments. Patient data and sample collection will include clinical assessments, self-reported outcome measures focusing on QoL, biospecimen collection and MRI. Caregiver burden will be systematically assessed through self-administered questionnaires. The use of digitised surveys will allow efficient data collection and convenient assessment at home. Our primary objective is to attain a holistic understanding of QoL in PwPD and establish a tool to measure it. The secondary objective is to explore the psycho-social and biological variables associated with QoL of patients and caregivers over the progression of the disease. This will provide key information for diagnostic and prognostic prediction, therapeutic patient stratification and adaptation of therapy in the future.Ethics and dissemination The study was approved by the local ethics committee of the University Hospital of Marburg (study number: 209/19). The results will be disseminated by means of publication in peer-reviewed journals, international conference contributions, annual patient meetings and a dedicated website.Trial registration number German Clinical Trials Register (DRKS00023598).

Published
2024
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2. Predementia Counseling : Informed Decision-Making and Postcounseling Reflection

Author

Carolin Schwegler, Björn Schmitz-Luhn, Vanessa Romotzky, Pilar Cañabate, Mariola Moreno, Gemma Ortega, Mercè Boada, Frank Jessen, Christiane Woopen, and Ayda Rostamzadeh

Subjects
Alzheimer’s disease, risk communication, dementia risk prediction, counseling recommendation, informed-decision making, Geriatrics and Gerontology, Gerontology
Abstract

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.

Published
2023

3. Biomarker-Based Risk Prediction of Alzheimer's Disease Dementia in Mild Cognitive Impairment: Psychosocial, Ethical, and Legal Aspects

Author

Ayda, Rostamzadeh, Carolin, Schwegler, Silvia, Gil-Navarro, Maitée, Rosende-Roca, Vanessa, Romotzky, Gemma, Ortega, Pilar, Canabate, Mariola, Moreno, Björn, Schmitz-Luhn, Mercè, Boada, Frank, Jessen, and Christiane, Woopen

Subjects
Male, Pilot Projects, Risk Assessment, mild cognitive impairment, Alzheimer Disease, Predictive Value of Tests, Germany, Surveys and Questionnaires, Adaptation, Psychological, Humans, Cognitive Dysfunction, legislation & jurisprudence [Risk Assessment], ddc:610, Prospective Studies, Life Style, caregiver, Aged, risk, diagnosis [Alzheimer Disease], Middle Aged, ethics, cerebrospinal fluid [Alzheimer Disease], cerebrospinal fluid [Cognitive Dysfunction], Mental Health, Treatment Outcome, cerebrospinal fluid [Biomarkers], diagnosis [Cognitive Dysfunction], quality of life, Spain, Quality of Life, Health Resources, biomarker, Female, disclosure, Alzheimer’s disease, Biomarkers, dementia
Abstract

Today, a growing number of individuals with mild cognitive impairment (MCI) wish to assess their risk of developing Alzheimer's disease (AD) dementia. The expectations as well as the effects on quality of life (QoL) in MCI patients and their close others through biomarker-based dementia risk estimation are not well studied.The PreDADQoL project aims at providing empirical data on effects of such prediction on QoL and at developing an ethical and legal framework of biomarker-based dementia risk estimation in MCI.In the empirical study, 100 MCI-patients and their close others will be recruited from two sites (Germany and Spain). They receive standardized counselling on cerebrospinal fluid (CSF) biomarker-based prediction of AD dementia and a risk disclosure based on their AD biomarker status. A mixed methods approach will be applied to assess outcomes.The pilot-study yielded a specification of the research topics and newly developed questionnaires for the main assessment. Within this binational quantitative and qualitative study, data on attitudes and expectations toward AD risk prediction, QoL, risk communication, coping strategies, mental health, lifestyle changes, and healthcare resource utilization will be obtained. Together with the normative part of the project, an empirically informed ethical and legal framework for biomarker-based dementia risk estimation will be developed.The empirical research of the PreDADQoL study together with the ethical and legal considerations and implications will help to improve the process of counselling and risk disclosure and thereby positively affect QoL and health of MCI-patients and their close others in the context of biomarker-based dementia risk estimation.

Published
2021

4. Justice Over the Course of Life : Biographies in a Society of Long Lives

Author

Björn Schmitz-Luhn, Christiane Woopen, Björn Schmitz-Luhn, and Christiane Woopen

Subjects
Older people--Legal status, laws, etc, Aging--Social aspects, Old age pensions, Older people--Medical care
Abstract

In this interdisciplinary book, experts from philosophy, medicine, law, psychology, economics, and social sciences address questions and develop solutions for a well-designed society of long life. Young as well as old people have to actively shape more and more of their life span. At the same time, aging becomes more multifaceted: the individual view on one's own life course is changing, and the needs and demands for a fulfilled life are diversifying. The implications affect all spheres of life – from education and workplace to health care and the culture of interaction. They require content-related and structural adjustments for a diverse society of longevity in which multiple generations live alongside each other. But how can change be managed responsibly, how can individual and collective responsibility be distributed appropriately, and how can a sustainable and fair social future be ensured?

Published
2022

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