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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.

Zusammenfassung Hintergrund Bei Gesundheitsfragen spielt das Internet eine zentrale Rolle, wobei Verbraucher:innen vor der Herausforderung stehen, geeignete Such- und Bewertungsstrategien zu entwickeln. Damit Informationen zur Gesundheit im Internet gefunden, verstanden, beurteilt und angewendet werden können, bedarf es digitaler Gesundheitskompetenz auf individueller und auf organisationaler Ebene. Vor dem Hintergrund gesellschaftlicher Pluralität und Diversität wurden Fähigkeiten und Zugänge marginalisierter Communities in diesem Zusammenhang bisher wenig beforscht. Ziel Diese Studie untersuchte die Nutzung von Online-Gesundheitsinformationen im Alltag aus einer postmigrantischen Perspektive, welche nicht Migrationshintergründe, sondern lokale Kontexte von Migrant:innen in Deutschland als Vulnerabilitätsvariable versteht. Ziel dieser Studie war es, sowohl das digitale Gesundheitsinformationsverhalten marginalisierter Communities ethnografisch und kollaborativ zu erforschen als auch praxisnahe und kultursensible Ansätze für Akteur:innen der Gesundheitskommunikation zu entwickeln ohne migrantisierende Zuschreibungen zu reproduzieren. Methoden Im Rahmen einer kollaborativen ethnografischen Feldforschung im Stadtteillabor der Bochumer Hustadt von 10/2020–01/2021 führten Community-Forscher:innen online leitfadengestützte Interviews in ihrem Umfeld durch. Die Interviews wurden mittels einer qualitativen Inhaltsanalyse ausgewertet. Ergebnisse und Diskussion Die Ergebnisse machen deutlich, dass sprachliche, inhaltliche und mediale Aspekte von Online-Gesundheitsinformationen den Zugang zu und Umgang mit diesen für marginalisierte Communities bedingen. Die postmigrantische Perspektive stellt einerseits Migration als hinreichende Analyse- und Erklärungskategorie in Frage und begründet zugleich Diversitäts- und Kultursensibilität als zentrale Komponenten des Zugangs zu Gesundheitsinformationen und der Entwicklung von Maßnahmen zur Stärkung der digitalen Gesundheitskompetenz in pluralen Gesellschaften. Es bedarf sowohl vielsprachiger, transkulturell resonierender und technisch barrierearmer Online-Gesundheitsinformationen als auch gestärkter Interaktion zwischen Individuen einer pluralen postmigrantischen Gesellschaft und der Online-Gesundheitskommunikation.

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.

Abstract: Progress in predictive medicine has increased the challenges to navigating complex risk information for patients and healthcare professionals. This contribution investigates how people facing the risk of developing Alzheimer’s dementia perceive risk, what aspects are relevant to their health literacy, and how to promote individual health literacy in predictive medicine. We conducted a qualitative study analyzing narrative interviews, body maps, and sociodemographic data from persons who had undergone early predictive procedures in a memory clinic. We understand the promotion of health literacy as an ethical task in predictive medicine and argue for (1) emphasizing personal resources to promote subjective health literacy, (2) reframing communication and decision-making about disease risk, and (3) teaching skills for value-sensitive, individualized risk communication.

ZusammenfassungIm abschließenden Beitrag stellen die Autor*innen das Konzept „gelingende Lebensführung“ in den Mittelpunkt. Die Kernergebnisse der vorhergehenden Beiträge werden zusammengefasst und im Rahmen einer kritischen Diskussion in dieses Konzept eingeordnet. Vor dem Hintergrund werden Empfehlungen für die politische und gesellschaftliche Gestaltung von Rahmenbedingungen formuliert, die einer gelingenden Lebensführung im sehr hohen Alter dienlich sind und sie fördern.

Individuals' ideals and aspirations are considered to constitute a central reference frame for subjective evaluations of their perceived reality, and, thus, to be crucial for individual quality of life (QoL) outcomes. By examining individual values and spirituality in very old people, the aim of this study was to describe two constructs representing the aspirations of the individual, as well as the relation of these constructs to both hedonic and eudaimonic QoL outcomes in very old age (VOA).Cross-sectional data from a representative survey of people in VOA (NRW80+, n = 1863) were used. Individual values were assessed based on the Portrait Value Questionnaire. A revised questionnaire was developed drawing on the Spiritual Health and Life-Orientation Measure. Individual values and spirituality were studied using descriptive statistics, and hierarchical linear regression models were used to analyze their predictive value for two QoL outcomes: 1) affective well-being as an indicator of hedonic QoL, which was assessed using the positive affect subscale of the short form of the Positive and Negative Affect Schedule, and 2) engagement with life, which captures eudaimonic aspects and which was measured with a subscale of the Valuation of Life Scale.The most important values were both protection and growth-oriented values with a social focus. However, only values representing strivings for growth had a positive association with QoL outcomes. Spirituality was of high relevance to very old people, although not in the sense of religious institutions or practices. Rather, it predominantly consisted in environmental, interpersonal, and transcendental connectedness, all of which were positively connected to QoL outcomes.Individual values and spirituality can be an important resource for hedonic as well as eudaimonic QoL; however, age-related losses may lead to an emphasis of protective values that are not beneficial in terms of QoL. To support older people on their spiritual journey, a broad concept of spirituality needs to be established among researchers as well as practitioners.HINTERGRUND: Es wird angenommen, dass Individuen ihre Realität auf Basis ihrer persönlichen Ideale und Bestrebungen bewerten. Diese sind demnach äußerst wichtig für individuelle Lebensqualitätsresultate (LQR). Die vorliegende Studie fokussierte die individuellen Werte und Spiritualität hochaltriger Menschen. Damit sollten zwei Konstrukte, die die Bestrebungen Hochaltriger (HA) repräsentieren, sowie ihr Zusammenhang mit hedonischen und eudaimonischen LQR in der Hochaltrigkeit untersucht werden.Es wurden Querschnittsdaten einer repräsentativen Befragung von HA (NRW80+, n = 1863) genutzt. Individuelle Werte wurden angelehnt an den Portrait Value Questionnaire operationalisiert. Zur Erhebung von Spiritualität wurde ein auf Basis des Spiritual Health and Life-Orientation Measure entwickelter Fragebogen eingesetzt. Individuelle Werte und Spiritualität wurden zunächst deskriptiv analysiert. Mittels hierarchischer linearer Regressionsmodelle wurde ihre Vorhersagekraft für zwei LQR untersucht: 1) affektives Wohlbefinden als Indikator hedonischer LQ, welches mit der Subskala positiver Affekt der Kurzform der Positive and Negative Affect Schedule erhoben wurde, 2) aktive Verbundenheit mit dem Leben, welche Aspekte eudaimonischer LQ abbildet und mit der Subskala Engagement der Valuation of Life Scale gemessen wurde.Die für HA wichtigsten individuellen Werte waren sowohl protektive als auch wachstumsorientierte Werte mit sozialem Fokus. Allerdings waren nur wachstumsorientierte Werte positiv mit LQR assoziiert. Spiritualität zeigte eine hohe Relevanz für HA, jedoch nicht im Sinne religiöser Institutionen oder Praktiken. Vielmehr bestand sie in Umwelt-, interpersoneller und transzendentaler Verbundenheit, welche außerdem positiv zu LQR beitrugen.Individuelle Werte und Spiritualität können eine wichtige Ressource für hedonische wie auch eudaimonische LQR sein. Verluste im Alter könnten jedoch zu einer Betonung protektiver Werte führen, welche nicht zu positiven LQR beitragen. Ein breites Verständnis von Spiritualität sollte sowohl in der Forschung als auch in der Praxis etabliert werden, um HA in ihrer spirituellen Entwicklung zu unterstützen.

People in very old age (VOA) are expected to be confronted with particularly negative stereotypes. These influence societally shared behavior towards and judgements about them. Such external evaluations of individuals' lives are considered a crucial part of their quality of life (QoL).The present study elaborated a) the societal appreciation perceived by people in VOA and b) the stereotypes about people in VOA held by stakeholders from key societal areas. The aim was to discuss possible connections between these external standards and individual life results.A parallel mixed methods design was employed. Cross-sectional data from a representative survey of people aged 80 years and older (n = 1863) were analyzed by means of χPSA was predicted by health-related variables and productive activities. Several societal stakeholders highlighted that age-related losses pose challenges on very old individuals, their families, and society, whereas remaining potentials in VOA can and should be used for the benefit of others; however, stakeholders' perceptions differed by the extent of their professional contact with (very) old people. Different pathways were proposed through which the observed stereotypes and determinants of PSA might be connected (e.g., stereotype internalization).Our study illustrates the relevance of external standards for individual QoL and highlights the need for a normative perspective in the discussion about QoL and its enhancement.HINTERGRUND: Stereotype über hochaltrige Menschen gelten als besonders negativ. Sie beeinflussen das gesellschaftlich geteilte Verhalten Hochaltrigen (HA) gegenüber und Urteile über diese. Solche externen Bewertungen stellen einen wichtigen Teil individueller Lebensqualität dar.Die Studie untersuchte a) die von HA empfundene gesellschaftliche Wertschätzung (EGW) und b) die Stereotype über HA von Vertretern zentraler Gesellschaftsbereiche. Ziel war es, mögliche Verbindungen zwischen diesen externalen Standards und individuellen Lebensqualitätsresultaten (LQR) zu diskutieren.Es wurde ein paralleler Mixed-Methods-Ansatz verfolgt. Querschnittsdaten einer repräsentativen Befragung von Menschen ab 80 Jahren (n = 1863) wurden ChiEGW konnte durch gesundheitsbezogene Variablen und produktive Aktivitäten vorhergesagt werden. Einige der Stakeholder betonten, dass einerseits altersbedingte Verluste hochaltrige Menschen, deren Familien sowie die Gesellschaft vor Herausforderungen stellen, und andererseits verbleibende Potenziale im Alter zugunsten anderer eingesetzt werden können und sollen. Die Ansichten der Stakeholder unterschieden sich jedoch nach dem Ausmaß ihres beruflichen Kontakts zu (sehr) alten Menschen. Es wurden Wege vorgeschlagen, über die die beobachteten Stereotype und Determinanten von EGW miteinander verbunden sein können (z. B. Internalisierung von Stereotypen).Die Studie verdeutlicht die Relevanz externaler Standards für individuelle LQ und betont die Notwendigkeit einer normativen Perspektive in der Diskussion um LQ und deren Förderung.

The study "Quality of life and well-being of the very old in North Rhine-Westphalia NRW80+" aims at giving a representative picture of the quality of life (QoL) in this population. Conceptually, QoL research has rarely considered the values of older individuals themselves and societal values, and their relevance for successful life conduct. Empirically, comparisons of different age groups over the age of 80 years are rare and hampered by quickly decreasing numbers of individuals in oldest age groups in the population of very old individuals.This paper describes the population of the NRW80+ study and different age groups of very old individuals with respect to biographical background. Furthermore, using the challenges and potentials model of QoL in very old age (CHAPO), key aspects of QoL in late life are discussed and the importance of normative stipulations of what constitutes a successful life conduct are highlighted. In the NRW80+ study older age groups (i.e., 85-89 years, 90+ years) were deliberately overrepresented in the survey sample to enable robust cross-group comparison. Individuals willing to participate in the study but unable to participate in the interview themselves for health reasons were included by means of proxy interviews. The total sample included 1863 individuals and 176 individuals were represented by proxy interviews. Pronounced differences were observed between age groups 80-84 years (born 1933-1937, N = 1012), 85-89 years (born 1928-1932, N = 573), and 90 years or older (*born before 1927, N = 278) with respect to education, employment and the timing of major life events (e.g., childbirth).Different life courses and resulting living conditions should be considered when discussing QoL disparities in very old age.HINTERGRUND: Die Studie „Lebensqualität und Wohlbefinden hochaltriger Menschen in Nordrhein-Westfalen (NRW80+)“ zeichnet ein repräsentatives, differenziertes Bild der Lebensqualität (LQ) in der Hochaltrigkeit. Bisher vorgeschlagene LQ-Modelle berücksichtigen nur unzureichend sowohl individuelle Werthaltungen älterer Menschen als auch gesellschaftliche Werte bei der Diskussion von Konstellationen gelingender Lebensführung. Nur wenige empirische Studien erlauben gegenwärtig einen differenzierten Blick auf Altersunterschiede jenseits von 80 Jahren, nicht zuletzt wegen des geringen Anteils der Ältesten in der Population.Der Artikel beschreibt die NRW80+-Studienpopulation und Altersgruppen hinsichtlich ihres biografischen Hintergrunds. Die Nutzung des Challenges and Potentials Model of QoL in Very-Old Age (CHAPO) erlaubt es, Kernpunkte von LQ zu erörtern und die Relevanz von normativen Wertevorstellen über eine erfolgreiche Lebensführung herauszustellen. Ältere Hochaltrige wurden in der Stichprobe gezielt überrepräsentiert, um aussagekräftige Altersvergleiche zu erlauben. Informationen über Personen, die aufgrund ihres Gesundheitszustands das Interview nicht selbst führen konnten, wurden durch Stellvertreterinterviews mit einem nahen Angehörigen/Bekannten erhoben. Die Gesamtstichprobe umfasste 1863 Interviews; für 176 Personen wurden Stellvertreterinterviews geführt. Die betrachteten Kohorten 80–84 Jahre (geb. 1933–1937, N = 1012), 85–89 Jahre (geb. 1928–1932, N = 573) und 90 Jahre oder älter (geb. vor 1927, N = 278) unterschieden sich wesentlich mit Blick auf Lebensverlauf und grundlegende Lebensumstände.Unterschiedliche Lebensverläufe und resultierende Lebensbedingungen sollten bei der Diskussion von ungleicher LQ im sehr hohen Lebensalter berücksichtigt werden.

Breast cancer; Evidence-generating care; Risk-adjusted prevention Cáncer de mama; Atención generadora de evidencia; Prevención ajustada al riesgo Càncer de mama; Atenció generadora d'evidències; Prevenció ajustada al risc Background: 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.

Background Effective communication is a central aspect of organizational health literacy. Healthcare professionals are expected to ensure an effective and satisfactory flow of information and to support their patients in accessing, understanding, appraising, and applying health information. This qualitative study aimed to examine the health literacy-related challenges, needs, and applied solutions of healthcare professionals when engaging with persons with a migrant background. Based on the integrated model of health literacy (Sørensen et al., BMC Public Health 12:80, 2012), we focused on environmental, personal, and situational factors that shape health literacy in transcultural treatment settings. Methods We conducted five focus group discussions with healthcare professionals (N = 31) who are in regular contact with persons with a migrant background. Discussions were transcribed verbatim and analyzed using qualitative content analysis by applying a deductive–inductive categorization procedure. Deductive categories were derived from the integrated model of health literacy. Results Challenges included a mismatch in the provision and use of health services. Participants regarded easily accessible services and outreach counselling as helpful solutions. Further challenges were the migrant patients’ distrust in healthcare professionals and the German healthcare system, the participants’ uncertainty in dealing with patients’ expectations and needs, and the patients’ non-compliance with appointments. Environmental factors included systemic lack of time and economic pressure. Both were reported as impeding the flow of information in all treatment settings. Participants with a migrant background themselves (n = 16) regarded this personal factor as an opportunity that increased patients’ trust in them. They also reported challenges such as high levels of responsibility felt when ad hoc interpreting for colleagues. Conclusions Known issues observed in the delivery of healthcare for the majority population (i.e., systemic lack of time, economic pressure) appear to be intensified in the context of migration. An increasingly diverse patient clientele indicates a growing need for culture-sensitive, health-literate healthcare organizations. A corresponding diversity of the health workforce is desirable and should be strengthened by national finance and educational programs. Healthcare professionals who interpret for colleagues should be given the necessary time. Further studies are needed to develop appropriate interventions for improving health literacy at individual and organizational levels. Funding for interpreting services should be expanded.

Background The separation of parents and their prematurely born children during care in a neonatal intensive care unit (NICU) can have far-reaching consequences for the well-being of the parents and also of the children. The aim of this study is to evaluate the use of webcams on NICUs and to conduct a systematic assessment of their possible effects on parents and clinical staff. In addition, it aims at determining the need for webcams in German NICUs and to identify possible barriers and moderators. The development and evaluation of practical guidance for the use of webcams will enable the comprehensive education of clinical staff and parents and, as a result, is intended to mitigate any potential undesirable consequences. Methods The study will be based on a mixed methods approach including all groups concerned in the care. Qualitative data will be collected in interviews and focus groups and evaluated using content analysis. The collection of quantitative data will be based on written questionnaires and will aim to assess the status quo as regards the use of webcams on German NICUs and the effects on parents, physicians, and nursing staff. These effects will be assessed in a randomised cross-over design. Four NICUs will be involved in the study and, in total, the parents of 730 premature babies will be invited to take part in the study. The effects on the nursing staff, such as additional workload and interruptions in workflows, will be evaluated on the basis of observation data. Discussion This study will be the largest multicentre study known to us that systematically evaluates the use of webcams in neonatal intensive care units. The effects of the implementation of webcams on both parents and care providers will be considered. The results provide evidence to decide whether to promote the use of webcams on NICUs or not and what to consider when implementing them. Trial registration The trial has been registered at the German Clinical Trial Register (DRKS). Number of registration: DRKS00017755, date of registration: 25.09.2019

Background Childhood trauma (CT) is a major yet elusive psychiatric risk factor, whose multidimensional conceptualization and heterogeneous effects on brain morphology might demand advanced mathematical modeling. Therefore, we present an unsupervised machine learning approach to characterize the clinical and neuroanatomical complexity of CT in a larger, transdiagnostic context. Methods We used a multicenter European cohort of 1076 female and male individuals (discovery: n = 649; replication: n = 427) comprising young, minimally medicated patients with clinical high-risk states for psychosis; patients with recent-onset depression or psychosis; and healthy volunteers. We employed multivariate sparse partial least squares analysis to detect parsimonious associations between combinations of items from the Childhood Trauma Questionnaire and gray matter volume and tested their generalizability via nested cross-validation as well as via external validation. We investigated the associations of these CT signatures with state (functioning, depressivity, quality of life), trait (personality), and sociodemographic levels. Results We discovered signatures of age-dependent sexual abuse and sex-dependent physical and sexual abuse, as well as emotional trauma, which projected onto gray matter volume patterns in prefronto-cerebellar, limbic, and sensory networks. These signatures were associated with predominantly impaired clinical state- and trait-level phenotypes, while pointing toward an interaction between sexual abuse, age, urbanicity, and education. We validated the clinical profiles for all three CT signatures in the replication sample. Conclusions Our results suggest distinct multilayered associations between partially age- and sex-dependent patterns of CT, distributed neuroanatomical networks, and clinical profiles. Hence, our study highlights how machine learning approaches can shape future, more fine-grained CT research.

The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care.

Die Digitalisierung bietet erhebliche Potenziale fur eine Starkung der Pravention im Gesundheitswesen. Daten aus verschiedenen klinischen und auserklinischen Quellen konnen strukturiert erfasst und mithilfe von Algorithmen systematisch verarbeitet werden. Praventionsbedarfe lassen sich schneller und praziser ermitteln, Interventionen zielgruppenspezifisch planen, implementieren und evaluieren. Zugleich ist es jedoch erforderlich, dass die Datenverarbeitung nicht nur hohen technischen, sondern auch ethischen Standards und den gesetzlichen Datenschutzbestimmungen entspricht, um Risiken zu vermeiden oder zu minimieren. Der vorliegende Diskussionsbeitrag beleuchtet in ethischer und rechtlicher Hinsicht die Potenziale und Risiken der digitalen Pravention zum einen aus einer „Datenperspektive“, bei der es um die Nutzung von gesundheitsrelevanten Daten geht, und zum anderen aus einer „Algorithmenperspektive“, bei der der Einsatz algorithmischer Systeme, einschlieslich kunstlicher Intelligenz, zur Bedarfserhebung und Evaluation praventiver Masnahmen im Mittelpunkt steht. Abschliesend werden Empfehlungen fur Rahmenbedingungen formuliert, die geschaffen werden sollten, um die Weiterentwicklung der Pravention im Gesundheitswesen zu starken.

Precision psychiatry is an emerging field with transformative opportunities for mental health. However, the use of clinical prediction models carries unprecedented ethical challenges, which must be addressed before accessing the potential benefits of precision psychiatry. This critical review covers multidisciplinary areas, including psychiatry, ethics, statistics and machine-learning, healthcare and academia, as well as input from people with lived experience of mental disorders, their family, and carers. We aimed to identify core ethical considerations for precision psychiatry and mitigate concerns by designing a roadmap for research and clinical practice. We identified priorities: learning from somatic medicine; identifying precision psychiatry use cases; enhancing transparency and generalizability; fostering implementation; promoting mental health literacy; communicating risk estimates; data protection and privacy; and fostering the equitable distribution of mental health care. We hope this blueprint will advance research and practice and enable people with mental health problems to benefit from precision psychiatry.

Deep Brain Stimulation (DBS) has been proven to alleviate motor symptoms in Parkinson's Disease (PD). Regarding non-motor symptoms, however, inconsistencies have been reported, on whether DBS causes reductions in well-being and functioning. To assess motor and non-motor impairment in DBS-patients, the Deep Brain Stimulation Impairment Scale (DBS-IS) has been developed. Yet, the extent to which the DBS-IS detects impairment in DBS-patients and thus could serve as a useful tool that complements the PDQ-39 (gold standard) in assessment of well-being and functioning in PD-patients has not been shown.By comparing DBS and non-DBS-patients we aimed to identify DBS-specific symptoms. We thereby aimed to show in how far the DBS-IS complements the PDQ-39 in assessing well-being and functioning in PD patients under DBS.In a cross-sectional study, 186 DBS-patients were matched (for age, disease duration and sex) to 186 non-DBS-patients (N = 372) and the two groups were compared regarding well-being and functioning: Impairment was assessed via DBS-IS and overall Quality of Life (QoL) was assessed via PDQ-39. Additionally, we analyzed differences in impairment between age and disease duration clusters.DBS-patients showed significantly higher total impairment (DBS-IS) and significantly higher impairment on the subscales Postural Instability and Gait difficulties and speaking difficulties than non-DBS-patients. Impairment increased with age and disease duration and, overall, differences in impairment rose by age. Overall QoL (PDQ-39) was non-significantly lower in DBS-patients.Since there is evidence that the PDQ-39 misses some DBS-specific symptoms, the DBS-IS is recommended to complement the PDQ-39 when assessing DBS-patients.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

In the final article the authors focus on the concept of "flourishing life". The core results of the preceding articles are summarized and placed in this concept in the context of a critical discussion. Against the background, recommendations are formulated for the political and societal shaping of framework conditions, which are conducive for and promote a good life in very old age.Im abschließenden Beitrag stellen die Autor*innen das Konzept „gelingende Lebensführung“ in den Mittelpunkt. Die Kernergebnisse der vorhergehenden Beiträge werden zusammengefasst und im Rahmen einer kritischen Diskussion in dieses Konzept eingeordnet. Vor dem Hintergrund werden Empfehlungen für die politische und gesellschaftliche Gestaltung von Rahmenbedingungen formuliert, die einer gelingenden Lebensführung im sehr hohen Alter dienlich sind und sie fördern.

Christiane Woopen und Sebastian Müller gehen in ihrem Beitrag der Frage nach, wie sich die Digitalisierung im Gesundheitswesen auf die Selbstbestimmung der Bürgerinnen und Bürger auswirkt. Am Beispiel der Selbstdiagnose im Internet und am Beispiel des Einsatzes von intelligenten Diagnoseprogrammen, die Ärztinnen und Ärzte bei der Diagnose von Krankheitsbildern unterstützen, legen die Autor*innen Aspekte der Digitalisierung frei, welche den Raum der Selbstbestimmung von Patient*innen, User*innen und Ärzt*innen sowohl strukturell beschränken als auch erweitern können.

Problem-centered interviews were conducted with 20 oldest old (80+ years) and evaluated via qualitative content analysis to answer the research question of how age-and cultural-specific experiences...

Background: Health literacy (HL) is considered a key concept to positively address relevant decisions concerning physical and mental health. According to an integrated model of a European Consortium, the process to access, understand, appraise and apply health information is at the centre of practising HL. Aim: In this study, we examine HL in a population with an early onset of a mental disorder (MD). Methods: Results are based on a cross-sectional survey among people with MD ( n = 310) who sought help at an early detection centre for MD in Cologne, Dresden or Munich. Help-seekers filled out the European Health Literacy Survey questionnaire (HLS-EU-Q) on perception-based HL, socio-demographic data and general health status. Psychopathology was assessed separately by trained specialists. Data are compared with a representative sample of the German population. Results: Overall, HL was lower in a sample with MD compared with the general population. Disease-specific limitations were present in accessing, appraising and applying health information, whereas understanding was perceived fairly easy. Statistical analysis of limited HL revealed correlations with the diagnosis of affective disorders and anxiety disorders, an increase of depressive symptoms as well as the presence of more than one MD. In line with these findings, low levels of HL were associated with a worse general health status. Conclusion: In a population with MD, accessing, appraising and applying health information seemed to be particularly challenging. Therefore, educational programmes that mainly focus on increasing knowledge might not be sufficient for improving the HL in people with MD. Further research should concentrate on context-specific HL to foster behavioural change and improve overall health.

Background: Lifestyle interventions with personalized self-management programs have shown benefits for patients with type 2 diabetes mellitus (T2DM), a devastating highly prevalent disease...

ObjectiveTo investigate gender differences of health literacy in individuals with a migration background.DesignSystematic review and meta-analysis. OVID/MEDLINE, PsycINFO and CINAHL were searched in March 2018 and July 2020.SettingStudies had to provide health literacy data for adult women and men with a migration background, collected with a standardised instrument, or report results that demonstrated the collection of such data. Health literacy data were extracted from eligible studies or requested from the respective authors. Using a random-effects model, a meta-analysis was conducted to assess standardised mean differences (SMDs) of health literacy in men and women. Two researchers independently assessed risk of bias for each included study using the Appraisal Tool for Cross-Sectional Studies.ResultsTwenty-four studies were included in this systematic review. Thereof, 22 studies (8012 female and 5380 male participants) were included in the meta-analyses. In six studies, gender-specific health literacy scores were reported. The authors of additional 15 studies provided their data upon request and for one further study data were available online. Women achieved higher health literacy scores than men: SMD=0.08, 95% CI 0.002 to 0.159, p=0.04, I2=65%. Another 27 studies reported data on female participants only and could not be included due to a lack of comparable studies with male participants only. Authors of 56 other eligible studies were asked for data, but without success.ConclusionMen with a migration background—while being much less frequently examined—may have lower health literacy than women. As heterogeneity between studies was high and the difference became statistically insignificant when excluding studies with a high risk of bias, this result must be interpreted with caution. There is a paucity of research on the social and relational aspects of gender in relation to health literacy among people with a migration background, especially for men.PROSPERO registration numberCRD42018085555.

Purpose: This study aims to provide insights into the impact of organizational family-centered care characteristics at German neonatal intensive care units (NICUs) on the satisfaction of parents of very low birthweight (VLBW) infants.Materials and methods: Using multilevel modeling, this study analyzed whether organizational characteristics of NICUs fostering parent-infant interaction (by way of the existence of a recreation room, possibility of rooming in, existence of unrestricted visiting hours for parents, existence of parental classes, and the connection to parent associations as well as the existence of standards on developmentally supportive care) increase the satisfaction of parents after the infants' high-intensive care phase within the NICU.Results: Nine hundred and twenty-three VLBW infants from 66 NICUs in Germany born between May and October 2013 were enrolled in this multicenter study. We retrieved 1493 questionnaires completed by 1277 parents. The existence of unrestricted visiting hours (adjusted odds ratio (AOR): 1.967; 95% CI [1.118, 3.459]) and standardized procedures for developmentally supportive care (AOR: 1.775; 95% CI [1.166, 2.704]) were positively associated with parental satisfaction.Conclusions: Fostering the parent-infant interaction through the provision of developmentally supportive care and unrestricted visiting hours for parents whose infants are hospitalized within an NICU significantly contributes to the satisfaction of parents.

Big Data approaches raise hope for a paradigm shift towards illness prevention, while others are concerned about discrimination resulting from these approaches. This will become particularly important for people with mental disorders, as research on medical risk profiles and early detection progresses rapidly. This study aimed to explore views and attitudes towards risk prediction in people who, for the first time, sought help at one of three early detection centers for mental disorders in Germany (Cologne, Munich, Dresden). A total of 269 help-seekers answered an open-ended question on the potential use of risk prediction. Attitudes towards risk prediction and motives for its approval or rejection were categorized inductively and analyzed using qualitative content analysis. The anticipated impact on self-determination was a driving decision component, regardless of whether a person would decide for or against risk prediction. Results revealed diverse, sometimes contrasting, motives for both approval and rejection (e.g., the desire to control of one&rsquo, s life as a reason for and against risk prediction). Knowledge about a higher risk as a potential psychological burden was one of the major reasons against risk prediction. The decision to make use of risk prediction is expected to have far-reaching effects on the quality of life and self-perception of potential users. Healthcare providers should empower those seeking help by carefully considering individual expectations and perceptions of risk prediction.

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.

Der Vortrag musste aus organisatorischen Grunden am Tag selbst spontan erheblich gekurzt werden und sprach nur wenige Aspekte fur die folgende Podiumsdiskussion an.

Im Kontext der Entwicklung von und Versorgung mit medizinischen Implantaten gilt es, damit einhergehende ethische Fragestellungen zu berucksichtigen. Die Analyse ethischer Aspekte ist mit einigen Herausforderungen verbunden: Neue Errungenschaften der technischen Entwicklung gehen mit einer hoffnungsvollen und optimistischen Haltung gegenuber verbesserten Losungen fur gesundheitliche Probleme einher; zugleich impliziert der innovative Charakter ein Fehlen von umfassenden Einschatzungsmoglichkeiten und langfristigen Erfahrungswerten zur differenzierten Abwagung von Nutzen und Schaden. Mit den Health Technology Assessments (HTA) wird im Sinne einer Technikfolgenabschatzung angestrebt, eine Analyse und Bewertung innovativer biomedizinischer Technologien vorzunehmen. Diese konzentrieren sich jedoch zumeist auf okonomische Kosten-Nutzen-Analysen sowie Aspekte der Wirksamkeit und Sicherheit, wahrend ethische Aspekte in der Regel unterreprasentiert sind.

Digitization offers considerable potential for strengthening prevention in the healthcare system. Data from various clinical and nonclinical sources can be collected in a structured way and systematically processed using algorithms. Prevention needs can thus be identified more quickly and precisely, and interventions can be planned, implemented, and evaluated for specific target groups. At the same time, however, it is necessary that data processing not only meets high technical but also ethical standards and legal data protection regulations in order to avoid or minimize risks.This discussion article examines the potentials and risks of digital prevention first from a "data perspective," which deals with the use of health-related data for the purpose of prevention, and second from an "algorithm perspective," which focuses on the use of algorithmic systems, including artificial intelligence, for the assessment of needs and evaluation of preventive measures, from an ethical and legal point of view. Finally, recommendations are formulated for framework conditions that should be created to strengthen the further development of prevention in the healthcare system.Die Digitalisierung bietet erhebliche Potenziale für eine Stärkung der Prävention im Gesundheitswesen. Daten aus verschiedenen klinischen und außerklinischen Quellen können strukturiert erfasst und mithilfe von Algorithmen systematisch verarbeitet werden. Präventionsbedarfe lassen sich schneller und präziser ermitteln, Interventionen zielgruppenspezifisch planen, implementieren und evaluieren. Zugleich ist es jedoch erforderlich, dass die Datenverarbeitung nicht nur hohen technischen, sondern auch ethischen Standards und den gesetzlichen Datenschutzbestimmungen entspricht, um Risiken zu vermeiden oder zu minimieren.Der vorliegende Diskussionsbeitrag beleuchtet in ethischer und rechtlicher Hinsicht die Potenziale und Risiken der digitalen Prävention zum einen aus einer „Datenperspektive“, bei der es um die Nutzung von gesundheitsrelevanten Daten geht, und zum anderen aus einer „Algorithmenperspektive“, bei der der Einsatz algorithmischer Systeme, einschließlich künstlicher Intelligenz, zur Bedarfserhebung und Evaluation präventiver Maßnahmen im Mittelpunkt steht. Abschließend werden Empfehlungen für Rahmenbedingungen formuliert, die geschaffen werden sollten, um die Weiterentwicklung der Prävention im Gesundheitswesen zu stärken.

Health literacy can be described as a complex process shaped by individual resources and preferences and by the nature and quality of health-related information people encounter. The main objective of this study was to explore the views of health care professionals on how gender as a personal determinant of health literacy affected their interactions with migrant patients. The interrelated challenges, needs and applied solutions were analyzed from a health literacy perspective. Five focus group discussions with health care professionals working with migrants (n = 31) were conducted in Cologne, Germany, audio recorded, transcribed and analyzed by qualitative content analysis. Gender-specific aspects, such as the gender of health care providers as a factor, were portrayed above all in relation to patients from Turkey and Arab countries regarding access to and understanding of health-related information. These statements exclusively represent the possibly biased or assumptions-based perspectives of health care professionals on their migrant patients and were made against the background of a systemic lack of time and the challenge of overcoming language barriers. Especially in this context, reducing time pressure and improving communication in the treatment setting may be to the benefit of all actors within healthcare.

Background: Health literacy (HL) refers to the capacity to access, understand, appraise and apply information for decision-making and acting in health-related matters. In the field of Alzheimer’s disease (AD), expanding technologies of early disease detection, disease course prediction and eventually personalized prevention confront individuals at-risk with increasingly complex information, which demand substantial HL skills. Here we report current findings of HL research in at-risk groups. Methods: Search strings, referring to HL, AD, amyloid and risk, were developed. A systematic review was conducted in PUBMED, Cochrane Library, PsycINFO, and Web of Science to summarize the state of evidence on HL in at-risk individuals for Alzheimer’s dementia. Eligible articles needed to employ a validated tool for HL, mention the concept or one dimension (access, understand, appraise and apply information for decision-making and acting). Results: 26 quantitative and 9 qualitative studies addressing at least one dimension of HL were included. Overall, there is evidence for a wish to gain knowledge about the own brain status and risk of dementia. Psychological distress may occur and the subjective benefit-risk estimation may be modified after risk disclosure. Effects on lifestyle and planning may occur. Overall understanding and appraisal of information related to AD risk seem variable with several impacting factors. In mild cognitive impairment (MCI) basic HL skill seem to be affected by cognitive dysfunction. Conclusions: Systematic assessment of HL in at-risk population for AD is sparse. Findings indicate the paramount importance of adequate communication with persons at risk, being sensitive to individual needs and preferences. Substantial research needs were identified.

Background Bullying as a specific subtype of adverse life events is a major risk factor for poor mental health. Although many questionnaires on bullying are available, so far none covers bullying retrospectively throughout school and working life. To close this gap, the Bullying Scale for Adults (BSA) was designed. Methods Based on data of 622 participants from five European countries collected in the prospective multicenter Personalized Prognostic Tools for Early Psychosis Management (PRONIA) study, we investigated whether the BSA is a reliable and valid measurement for bullying and whether there is a difference across different diagnostic groups of early mental disorders (recent onset depressive/ psychotic patients, patients at clinical high-risk of psychosis) and healthy controls. Results Bullying experiences were significantly less frequent in healthy controls than in patient groups, with no significant differences between the three clinical groups. The BSA exhibited a high item scale discrimination (r > .3) and very good internal consistency (Cronbach's α = .93). Four factors were identified: 1. Sexual harassment, 2. Emotional Abuse, 3. Physical Abuse, 4. Problems at school. The highly significant correlation between bullying, and childhood adversities and trauma (r = .645, p Discussion The BSA is the first validated questionnaire that, in retrospective, reliably records various aspects of bullying (incl. its consequences) not only throughout childhood but also working life. It can be used to assess bullying as a transdiagnostic risk factor of mental disorders in different mental disorders, esp. psychosis and depression.

Fur das arztliche Handeln ist das Wohl, einschlieslich der Gesundheit, des Patienten der leitende Masstab. Das Patientenwohl umfasst die selbstbestimmungsermoglichende Sorge, die gute Behandlungsqualitat sowie eine gerechte Gesundheitsversorgung im Sinne von Zugangs- und Verteilungsgerechtigkeit. Dementsprechend sind fur die Definition des medizinischen Standards, zumal in einem solidarisch finanzierten Gesundheitssystem, die evidenzbasierte Medizin, die Patientenpraferenzen und die Vielfalt erforderlicher Ressourcen zu berucksichtigen. Medizinische, okonomische, rechtliche und individuell-situative Aspekte konnen jedoch im Einzelfall zu Konflikten fuhren und angesichts einer zunehmenden Differenz zwischen verfugbaren und benotigten Ressourcen systemisch in Spannung zueinander geraten. Transparenz, Ermessensspielraume, Offenheit fur situative Gegebenheiten und die Aufklarung des Patienten sind fur die Festlegung des medizinischen Standards und fur einen ethisch vertretbaren Umgang mit diesen Spannungen von herausragender Bedeutung.