Psychosocial Long-Term Effects of Young Adult Cancer Survivors: Study Protocol of the Longitudinal AYA-LE Long-Term Effects Study

Background: About 3% of new cancer cases affect young adults aged between 15 and 39 years. The young age, the increasing incidence and the relatively good prognosis of this population lead to the growing importance to investigate the psychosocial long-term and late effects. The aims of the AYA-LE long-term effects study are: first, to assess the temporal course and related factors of life satisfaction and psychological distress of adolescent and young adult (AYA) cancer survivors; and second, to examine a specific topic in each of the yearly surveys in a more differentiated way. Methods: This study represents a continuation of the longitudinal AYA-LE study. The existing sample of AYA cancer patients (t1: N = 577; t2: N = 514; aged between 18 and 39 years at diagnosis; all major tumor entities) was extended by four further survey points (t3: 2018, t4: 2019, t5: 2020, t6: 2021). In addition, a comparison sample of young adults without cancer was collected. We measured longitudinal data for outcomes such as quality of life, psychological distress, and fatigue with standardized questionnaires. Furthermore, each survey point included a different cross-sectional topic (e.g., health behavior, occupational situation, and compliance). Discussion: The AYA-LE long-termeffects study will show the long-termconsequences of cancer in young adulthood. We expect at least complete data of 320 participants to be available after the sixth survey, which will be completed in 2021. This will provide a comprehensive and differentiated understanding of the life situation of young adults with cancer in Germany. The findings of our study enable a continuous improvement of the psychosocial care and specific survivorship programs for young cancer patients

How to Launch an Interdisciplinary Leadership Program

Building a doctoral program in leadership is never an easy task, and building an interdisciplinary doctoral program is even more difficult. Yet, it is the interdisciplinary approach that differentiates typical leadership programs from others and offers learners an integrated view of leadership theories and practices. This special report presents an example of designing and implementing an interdisciplinary doctoral program that promotes social justice leadership. Drawing from firsthand experiences of program faculty, staff, and administration, we share lessons learned and the logic behind adopting an interdisciplinary approach for those creating programs that seeks to promote social justice. We found that by allowing students and faculty to convene together, rather than disperse into separate, isolated academic disciplines, emerging scholar-practitioners are encouraged to engage in realistic, professional practice investigation and problem-solving techniques. Through this experience, we also found that conscious coursework design involves integrating multiple, often quite divergent, disciplines into a core set of courses. Additionally, we learned that unifying students through a common mission permits distinctive discussions, including personal reflection and ethical decision-making opportunities among the concepts, constructs, and knowledge that extend beyond disciplinary lines (Cherney et al., 2012). We also found that cultivating a diverse student body and faculty base requires everyone to work strategically within the program, recognizing the call for coherence and consistency across disciplinary lines. Finally, we discovered that developing a dissertation in practice allows students to implement an evidence-based solution within their professional practice setting as their pinnacle doctorate work (Herr & Anderson, 2014; Olson & Clark, 2009). We conclude this paper by reiterating our finding that leadership programs that promote social justice are enhanced by adopting an interdisciplinary approach as this allows for the creation of a program that challenges students to learn at a more complex level, faculty to integrate disciplines, and programs to promote socially just ideals. We discuss implications for other schools seeking to develop an interdisciplinary doctoral leadership program

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders:A scoping review and expert co-creation of evidence-based clinical guidelines

Objective To co-create expert guidelines for the management of pregnancy, birth, and postpartum recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Design Scoping Review and Expert Co-creation. Setting United Kingdom, United States of America, Canada, France, Sweden, Luxembourg, Germany, Italy, and the Netherlands. Sample Co-creators (n = 15) included expertise from patients and clinicians from the International Consortium on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders, facilitated by the Ehlers-Danlos Society. Methods A scoping review using Embase, Medline, the Cochrane Central Register of Controlled Trials and CINHAL was conducted from May 2022 to September 2023. Articles were included if they reported primary research findings in relation to childbearing with hEDS/HSD, including case reports. No language limitations were placed on our search, and our team had the ability to translate and screen articles retrieved in English, French, Spanish, Italian, Russian, Swedish, Norwegian, Dutch, Danish, German, and Portuguese. The Mixed Methods Appraisal Tool was used to assess bias and quality appraise articles selected. The co-creation of guidelines was based on descriptive evidence synthesis along with practical and clinical experience supported by patient and public involvement activities. Results Primary research studies (n = 14) and case studies (n = 21) including a total of 1,260,317 participants informed the co-creation of guidelines in four overarching categories: 1) Preconceptual: conception and screening, 2) Antenatal: risk assessment, management of miscarriage and termination of pregnancy, gastrointestinal issues and mobility, 3) Intrapartum: risk assessment, birth choices (mode of birth and intended place of birth), mobility in labor and anesthesia, and 4) Postpartum: wound healing, pelvic health, care of the newborn and infant feeding. Guidelines were also included in relation to pain management, mental health, nutrition and the common co-morbidities of postural orthostatic tachycardia syndrome, other forms of dysautonomia, and mast cell diseases. Conclusions There is limited high quality evidence available. Individualized strategies are proposed for the management of childbearing people with hEDS/HSD throughout pregnancy, birth, and the postpartum period. A multidisciplinary approach is advised to address frequently seen issues in this population such as tissue fragility, joint hypermobility, and pain, as well as common comorbidities, including dysautonomia and mast cell diseases.</p

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders:A scoping review and expert co-creation of evidence-based clinical guidelines

Objective To co-create expert guidelines for the management of pregnancy, birth, and postpartum recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Design Scoping Review and Expert Co-creation. Setting United Kingdom, United States of America, Canada, France, Sweden, Luxembourg, Germany, Italy, and the Netherlands. Sample Co-creators (n = 15) included expertise from patients and clinicians from the International Consortium on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders, facilitated by the Ehlers-Danlos Society. Methods A scoping review using Embase, Medline, the Cochrane Central Register of Controlled Trials and CINHAL was conducted from May 2022 to September 2023. Articles were included if they reported primary research findings in relation to childbearing with hEDS/HSD, including case reports. No language limitations were placed on our search, and our team had the ability to translate and screen articles retrieved in English, French, Spanish, Italian, Russian, Swedish, Norwegian, Dutch, Danish, German, and Portuguese. The Mixed Methods Appraisal Tool was used to assess bias and quality appraise articles selected. The co-creation of guidelines was based on descriptive evidence synthesis along with practical and clinical experience supported by patient and public involvement activities. Results Primary research studies (n = 14) and case studies (n = 21) including a total of 1,260,317 participants informed the co-creation of guidelines in four overarching categories: 1) Preconceptual: conception and screening, 2) Antenatal: risk assessment, management of miscarriage and termination of pregnancy, gastrointestinal issues and mobility, 3) Intrapartum: risk assessment, birth choices (mode of birth and intended place of birth), mobility in labor and anesthesia, and 4) Postpartum: wound healing, pelvic health, care of the newborn and infant feeding. Guidelines were also included in relation to pain management, mental health, nutrition and the common co-morbidities of postural orthostatic tachycardia syndrome, other forms of dysautonomia, and mast cell diseases. Conclusions There is limited high quality evidence available. Individualized strategies are proposed for the management of childbearing people with hEDS/HSD throughout pregnancy, birth, and the postpartum period. A multidisciplinary approach is advised to address frequently seen issues in this population such as tissue fragility, joint hypermobility, and pain, as well as common comorbidities, including dysautonomia and mast cell diseases.</p

Structure of alpha-synuclein fibrils derived from human Lewy body dementia tissue

The defining feature of Parkinson disease (PD) and Lewy body dementia (LBD) is the accumulation of alpha-synuclein (Asyn) fibrils in Lewy bodies and Lewy neurites. Here we develop and validate a method to amplify Asyn fibrils extracted from LBD postmortem tissue samples and use solid state nuclear magnetic resonance (SSNMR) studies to determine atomic resolution structure. Amplified LBD Asyn fibrils comprise a mixture of single protofilament and two protofilament fibrils with very low twist. The protofilament fold is highly similar to the fold determined by a recent cryo-electron microscopy study for a minority population of twisted single protofilament fibrils extracted from LBD tissue. These results expand the structural characterization of LBD Asyn fibrils and approaches for studying disease mechanisms, imaging agents and therapeutics targeting Asyn

Project overview and update on WEAVE: the next generation wide-field spectroscopy facility for the William Herschel Telescope

We present an overview of and status report on the WEAVE next-generation spectroscopy facility for the William Herschel Telescope (WHT). WEAVE principally targets optical ground-based follow up of upcoming ground-based (LOFAR) and space-based (Gaia) surveys. WEAVE is a multi-object and multi-IFU facility utilizing a new 2-degree prime focus field of view at the WHT, with a buffered pick-and-place positioner system hosting 1000 multi-object (MOS) fibres, 20 integral field units, or a single large IFU for each observation. The fibres are fed to a single spectrograph, with a pair of 8k(spectral) x 6k (spatial) pixel cameras, located within the WHT GHRIL enclosure on the telescope Nasmyth platform, supporting observations at R~5000 over the full 370-1000nm wavelength range in a single exposure, or a high resolution mode with limited coverage in each arm at R~20000. The project is now in the final design and early procurement phase, with commissioning at the telescope expected in 2017.Comment: 11 pages, 11 Figures, Summary of a presentation to Astronomical Telescopes and Instrumentation 201

When Flexibility Is Stable: Implicit Long-Term Shaping of Olfactory Preferences

Preferences are traditionally assumed to be stable. However, empirical evidence such as preference modulation following choices calls this assumption into question. The evolution of such postchoice preference over long time spans, even when choices have been explicitly forgotten, has so far not been studied. In two experiments, we investigated this question by using a variant of the free choice paradigm: In a first session, participants evaluated the pleasantness of a number of odors. We then formed pairs of similarly rated odors, and asked participants to choose their favorite, for each pair. Participants were then presented with all odors again, and asked for another pleasantness rating. In a second session 1 week later, a third pleasantness rating was obtained, and participants were again asked to choose between the same options. Results suggested postchoice preference modulation immediately and 1 week after choice for both chosen and rejected options, even when choices were not explicitly remembered. A third experiment, using another paradigm, confirmed that choice can have a modulatory impact on preferences, and that this modulation can be long-lasting. Taken together, these findings suggest that although preferences appear to be flexible because they are modulated by choices, this modulation also appears to be stable over time and even without explicit recollection of the choice. These results bring a new argument to the idea that postchoice preference modulation could rely on implicit mechanisms, and are consistent with the recent proposal that cognitive dissonance reduction could to some extent be implicit

A Twenty-First Century Assessment of Values Across the Global

This article provides current Schwartz Values Survey (SVS) data from samples of business managers and professionals across 50 societies that are culturally and socioeconomically diverse. We report the society scores for SVS values dimensions for both individual- and societallevel analyses. At the individual-level, we report on the ten circumplex values sub-dimensions and two sets of values dimensions (collectivism and individualism; openness to change, conservation, self-enhancement, and self- transcendence). At the societal-level, we report on the values dimensions of embeddedness, hierarchy, mastery, affective autonomy, intellectual autonomy, egalitarianism, and harmony. For each society, we report the Cronbach’s a statistics for each values dimension scale to assess their internal consistency (reliability) as well as report interrater agreement (IRA) analyses to assess the acceptability of using aggregated individual level values scores to represent country values. We also examined whether societal development level is related to systematic variation in the measurement and importance of values. Thus, the contributions of our evaluation of the SVS values dimensions are two-fold. First, we identify the SVS dimensions that have cross-culturally internally reliable structures and withinsociety agreement for business professionals. Second, we report the society cultural values scores developed from the twenty-first century data that can be used as macro-level predictors in multilevel and single-level international business research

Ethical preferences for influencing superiors: A 41-society study

With a 41-society sample of 9990 managers and professionals, we used hierarchical linear modeling to investigate the impact of both macro-level and micro-level predictors on subordinate influence ethics. While we found that both macro-level and micro-level predictors contributed to the model definition, we also found global agreement for a subordinate influence ethics hierarchy. Thus our findings provide evidence that developing a global model of subordinate ethics is possible, and should be based upon multiple criteria and multilevel variables