P0075EXPERT OPINION ON THE MULTIDISCIPLINARY MANAGEMENT OF CYSTINOSIS IN ADOLESCENT AND ADULT PATIENTS

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Nicholas Webb ◽  
Anibh M Das ◽  
Sally Hulton ◽  
Elena Levtchenko ◽  
Aude Servais ◽  
...  
Keyword(s):  
Well Being ◽  
The Body ◽  
Screening Tests ◽  
Published Data ◽  
Lysosomal Storage ◽  
Extensive Experience ◽  
Muscle Involvement ◽  
Clinical Recommendations ◽  
Chromosome 17P13 ◽  
Adolescents And Adults

Abstract Background and Aims Cystinosis is a rare autosomal recessive lysosomal storage disorder caused by mutations in the CTNS gene on chromosome 17p13. It affects between 1:150,000–1:200,000 live births, with a prevalence of approximately 1.6 per million. It is a life-long progressive disease which results in an abnormal lysosomal accumulation of the amino acid cystine in multiple organs and tissues of the body. The most common presentation of cystinosis (95%) is the infantile nephropathic form, with renal symptoms developing in the first few months of life. Over the next 10–20 years, extra-renal manifestations of cystinosis become apparent, which require multidisciplinary care. Here we describe a consensus-based programme with the objective of creating clinical recommendations to support HCPs with the management of adolescents and adults living with the multi-organ effects of cystinosis. Method The programme was led by a Steering Committee (SC) of European clinicians with expertise in managing cystinosis. Recommendations were developed using a quasi-Delphi methodology. The SC identified and prioritised a list of key questions. An Extended Faculty (EF) of additional specialists with extensive experience managing cystinosis in patients of all ages, were invited to answer the questions via an online digital platform. The consolidated answers of expert opinion were summarised into recommendations that were supported by evidence-based guidance and additional published data where possible. The EF were invited to agree / disagree with the draft clinical recommendations. Where there was disagreement, the SC members amended the recommendations and the EF re-voted on the revisions. This process continued until consensus was achieved on all final recommendations. Results The expert-agreed clinical recommendations reflect the multi-organ effects of cystinosis. Thus, advice on factors relating to the nervous system, muscle involvement, ophthalmology, cardio-respiratory system, dental care and nutrition, dermatology, endocrine system, and gastrointestinal and hepatological involvement, are given, along with renal considerations. Guidance on fertility and family planning that reflect some of the major advances in recent years, are also provided. Ideas on improving psychological well-being and adherence includes recommendations on the use of validated screening tests, increasing access to occupational therapy, and interacting with patient groups. The programme has also produced an online checklist to support HCPs in their daily clinical practice by providing a focus to guide regular consultations with the patient. Conclusion These expert recommendations offer HCPs relevant advice that support them in the management of adolescents and adults living with the multi-organ effects of cystinosis. The recommendations complement existing international and local guidance and aim to improve patient outcomes.

Integrating Focusing and Differentiation: A Therapeutic Path for Couples in Intimate Relationships

2018 ◽  
Vol 3 ◽  
Author(s):  
Evi Zohar
Keyword(s):  
Couples Therapy ◽  
Therapeutic Potential ◽  
Well Being ◽  
Point Of View ◽  
The Body ◽  
Self Awareness ◽  
Emotional Healing ◽  
Felt Sense ◽  
Inner World

Continuing the workshop I've given in the WPC Paris (2017), this article elaborates my discussion of the way I interlace Focusing with Differentiation Based Couples Therapy (Megged, 2017) under the systemic view, in order to facilitate processes of change and healing in working with intimate couples. This article presents the theory and rationale of integrating Differentiation (Bowen, 1978; Schnarch, 2009; Megged, 2017) and Focusing (Gendlin, 1981) approaches, and its therapeutic potential in couple's therapy. It is written from the point of view of a practicing professional in order to illustrate the experiential nature and dynamics of the suggested therapeutic path. Differentiation is a key to mutuality. It offers a solution to the central struggle of any long term intimate relationship: balancing two basic life forces - the drive for individuality and the drive for togetherness (Schnarch, 2009). Focusing is a body-oriented process of self-awareness and emotional healing, in which one learns to pay attention to the body and the ‘Felt Sense’, in order to unfold the implicit, keep it in motion at the precise pace it needs for carrying the next step forward (Gendlin, 1996). Combining Focusing and Differentiation perspectives can cultivate the kind of relationship where a conflict can be constructively and successfully held in the inner world of each partner, while taking into consideration the others' well-being. This creates the possibility for two people to build a mutual emotional field, open to changes, permeable and resilient.

Psychosocial Consequences of Body Weight and Obesity

2018 ◽  
pp. 274-286
Author(s):  
Deborah Carr ◽  
Vera K. Tsenkova
Keyword(s):  
Body Weight ◽  
Interpersonal Relationships ◽  
Large Scale ◽  
Well Being ◽  
The United States ◽  
Overweight And Obesity ◽  
The Body ◽  
Integrative Health ◽  
Psychosocial Consequences ◽  
Adults And Children

The body weight of U.S. adults and children has risen markedly over the past three decades. The physical health consequences of obesity are widely documented, and emerging research from the Midlife in the United States study and other large-scale surveys reveals the harmful impact of obesity on adults’ psychosocial and interpersonal well-being. This chapter synthesizes recent research on the psychosocial implications of body weight, with attention to explanatory mechanisms and subgroup differences in these patterns. A brief statistical portrait of body weight is provided, documenting rates and correlates of obesity, with a focus on race, gender, and socioeconomic status disparities. The consequences of body weight for three main outcomes are described: institutional and everyday discrimination, interpersonal relationships, and psychological well-being. The chapter concludes with a discussion of the ways that recent integrative health research on the psychosocial consequences of overweight and obesity inform our understanding of population health.

scholarly journals Transition from Emotional to Rational Advertising for Food Products on the Romanian Market

2017 ◽  
Vol 50 (1) ◽  
pp. 101-108
Author(s):  
A.F. Jităreanu ◽  
Elena Leonte ◽  
A. Chiran ◽  
Benedicta Drobotă
Keyword(s):  
Urban Areas ◽  
Eating Habits ◽  
Well Being ◽  
Point Of View ◽  
The Body ◽  
Positive Effects ◽  
New Methods ◽  
Brand Advertising ◽  
Tangible Evidence ◽  
Health And Well Being

Abstract Advertising helps to establish a set of assumptions that the consumer will bring to all other aspects of their engagement with a given brand. Advertising provides tangible evidence of the financial credibility and competitive presence of an organization. Persuasion is becoming more important in advertising. In marketing, persuasive advertising acts to establish wants/motivations and beliefs/attitudes by helping to formulate a conception of the brand as being one which people like those in the target audience would or should prefer. Considering the changes in lifestyle and eating habits of a significant part of the population in urban areas in Romania, the paper aims to analyse how brands manage to differentiate themselves from competitors, to reposition themselves on the market and influence consumers, meeting their increasingly varied needs. Food brands on the Romanian market are trying, lately, to identify new methods of differentiation and new benefits for their buyers. Given that more and more consumers are becoming increasingly concerned about what they eat and the products’ health effects, brands struggle to highlight the fact that their products offer real benefits for the body. The advertisements have become more diversified and underline the positive effects, from the health and well - being point of view, that those foods offer (no additives and preservatives, use of natural ingredients, various vitamins and minerals or the fact that they are dietary). Advertising messages’ diversification is obvious on the Romanian market, in the context of an increasing concern of the population for the growing level of information of some major consumer segments.

scholarly journals Medical Students’ Experience of Mindfulness Training in the UK: Well-Being, Coping Reserve, and Professional Development

2019 ◽  
Vol 2019 ◽  
pp. 1-10 ◽  
Author(s):  
Alice Malpass ◽  
Kate Binnie ◽  
Lauren Robson
Keyword(s):  
Medical Education ◽  
Mental Health Problems ◽  
Qualitative Interviews ◽  
General Medical Council ◽  
Well Being ◽  
Mindfulness Training ◽  
The Body ◽  
Free Text ◽  
Medical Council ◽  
The Uk

Medical school can be a stressful experience for students, resulting in stress-related mental health problems. Policy recommendations from the General Medical Council (GMC), the body responsible for improving medical education in the UK, recommend the use of mindfulness training to increase well-being and resilience to stress. Students participating in an eight-week mindfulness training between Autumn 2011 and Spring 2015 were invited to complete a free text survey at the end of their mindfulness course. In addition, six qualitative interviews were conducted lasting between 60 and 90 minutes. Interviews used a topic guide and were recorded and transcribed verbatim. We used the framework approach to analyse the data. Students reported a new relationship to their thoughts and feelings which gave a greater sense of control and resiliency, an ability to manage their workload better, and more acceptance of their limitations as learners. The small group context was important. Students described improved empathy and communication skills through building inner awareness of thoughts and feelings, noticing judgments, and developing attentive observation. The findings show how resiliency and coping reserve can be developed within medical education and the role of mindfulness in this process. We present a conceptual model of a learnt cycle of specific vulnerability and describe how MBCT intercepts at various junctures in this self-reinforcing cycle through the development of new coping strategies that embrace an “allowed vulnerability.”

scholarly journals Prevention of Advanced Cancer by Vitamin D3 Supplementation: Interaction by Body Mass Index Revisited

Nutrients ◽  
2021 ◽  
Vol 13 (5) ◽  
pp. 1408
Author(s):  
Hermann Brenner ◽  
Sabine Kuznia ◽  
Clarissa Laetsch ◽  
Tobias Niedermaier ◽  
Ben Schöttker
Keyword(s):  
Body Mass Index ◽  
Vitamin D ◽  
Cancer Patients ◽  
Body Mass ◽  
Advanced Cancer ◽  
Vitamin D3 ◽  
Normal Weight ◽  
The Body ◽  
Published Data ◽  
Vitamin D3 Supplementation

Meta-analyses of randomized controlled trials (RCTs) have demonstrated a protective effect of vitamin D3 (cholecalciferol) supplementation against cancer mortality. In the VITAL study, a RCT including 25,871 men ≥ 50 years and women ≥ 55 years, protective effects of vitamin D3 supplementation (2000 IU/day over a median of 5.3 years) with respect to incidence of any cancer and of advanced cancer (metastatic cancer or cancer death) were seen for normal-weight participants but not for overweight or obese participants. We aimed to explore potential reasons for this apparent variation of vitamin D effects by body mass index. We conducted complementary analyses of published data from the VITAL study on the association of body weight with cancer outcomes, stratified by vitamin D3 supplementation. Significantly increased risks of any cancer and of advanced cancer were seen among normal-weight participants compared to obese participants in the control group (relative risk (RR), 1.27; 95% confidence interval (CI), 1.07–1.52, and RR, 1.44; 95% CI, 1.04–1.97, respectively). No such patterns were seen in the intervention group. Among those with incident cancer, vitamin D3 supplementation was associated with a significantly reduced risk of advanced cancer (RR, 0.86; 95% CI, 0.74–0.99). The observed patterns point to pre-diagnostic weight loss of cancer patients and preventive effects of vitamin D3 supplementation from cancer progression as plausible explanations for the body mass index (BMI)—intervention interactions. Further research, including RCTs more comprehensively exploring the potential of adjuvant vitamin D therapy for cancer patients, should be pursued with priority.

scholarly journals Psychometric validation and refinement of the Interoception Sensory Questionnaire (ISQ) in adolescents and adults on the autism spectrum

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Evan Suzman ◽  
Zachary J. Williams ◽  
Jacob I. Feldman ◽  
Michelle Failla ◽  
Carissa J. Cascio ◽  
...  
Keyword(s):  
Autism Spectrum ◽  
The Body ◽  
Self Report ◽  
Psychometric Validation ◽  
Response Scale ◽  
Response Options ◽  
Response Choice ◽  
Autistic People ◽  
Adolescents And Adults ◽  
Sensory Questionnaire

Abstract Background Individuals on the autism spectrum are reported to display alterations in interoception, the sense of the internal state of the body. The Interoception Sensory Questionnaire (ISQ) is a 20-item self-report measure of interoception specifically intended to measure this construct in autistic people. The psychometrics of the ISQ, however, have not previously been evaluated in a large sample of autistic individuals. Methods Using confirmatory factor analysis, we evaluated the latent structure of the ISQ in a large online sample of adults on the autism spectrum and found that the unidimensional model fit the data poorly. Using misspecification analysis to identify areas of local misfit and item response theory to investigate the appropriateness of the seven-point response scale, we removed redundant items and collapsed the response options to put forth a novel eight-item, five-response choice ISQ. Results The revised, five-response choice ISQ (ISQ-8) showed much improved fit while maintaining high internal reliability. Differential item functioning (DIF) analyses indicated that the items of the ISQ-8 were answered in comparable ways by autistic adolescents and adults and across multiple other sociodemographic groups. Limitations Our results were limited by the fact that we did not collect data for typically developing controls, preventing the analysis of DIF by diagnostic status. Additionally, while this study proposes a new 5-response scale for the ISQ-8, our data were not collected using this method; thus, the psychometric properties for the revised version of this instrument require further investigation. Conclusion The ISQ-8 shows promise as a reliable and valid measure of interoception in adolescents and adults on the autism spectrum, but additional work is needed to examine its psychometrics in this population. A free online score calculator has been created to facilitate the use of ISQ-8 latent trait scores for further studies of autistic adolescents and adults (available at https://asdmeasures.shinyapps.io/ISQ_score/).

scholarly journals Psychological Consequences of the Delay in the Silent Mentor Programme During the COVID-19 Pandemic: Perspectives From Family Members of Silent Mentors

2021 ◽  
pp. 003022282110009
Author(s):  
Li Ping Wong ◽  
Sik Loo Tan ◽  
Haridah Alias ◽  
Thiam Eng Sia ◽  
Aik Saw
Keyword(s):  
Mental Health ◽  
Qualitative Interviews ◽  
Psychological Impact ◽  
Family Members ◽  
Well Being ◽  
The Body ◽  
Functional Health ◽  
Psychological Consequences ◽  
Negative Effect ◽  
Health And Well Being

The COVID-19 pandemic has put a hold on the Silent Mentor Programme (SMP); this pause has not only caused unprecedented challenges for the delivery of medical education but has forced changes in the programme ceremony sessions. We aimed to describe the psychological impact and experiences of family members of silent mentors during the COVID-19 pandemic using qualitative interviews. Many expressed feelings of remorse and unrest about the unprecedented delay of the SMP. The delay increased negative emotions particularly among some elderly family members; however, there was no prominent negative effect on their functional health and well-being. Several participants relayed the belief that the soul cannot rest until the body receives a proper burial while some worried about the deterioration of the physical condition of the mentors. In conclusion, findings provide insights into the importance of not overlooking the mental health implications of delaying the SMP in future outbreaks or crises.

scholarly journals The Embodiment of Insult: A Theory of Biobehavioral Response to Workplace Incivility

2021 ◽  
pp. 014920632198979
Author(s):  
Lilia M. Cortina ◽  
M. Sandy Hershcovis ◽  
Kathryn B. H. Clancy
Keyword(s):  
Behavioral Responses ◽  
Well Being ◽  
Workplace Incivility ◽  
The Body ◽  
Social Connections ◽  
The Novel ◽  
Target Response ◽  
Organizational Life ◽  
New Science ◽  
Broad Theory

This article builds a broad theory to explain how people respond, both biologically and behaviorally, when targeted with incivility in organizations. Central to our theorizing is a multifaceted framework that yields four quadrants of target response: reciprocation, retreat, relationship repair, and recruitment of support. We advance the novel argument that these behaviors not only stem from biological change within the body but also stimulate such change. Behavioral responses that revolve around affiliation and produce positive social connections are most likely to bring biological benefits. However, social and cultural features of an organization can stand in the way of affiliation, especially for employees holding marginalized identities. When incivility persists over time and employees lack access to the resources needed to recover, we theorize, downstream consequences can include harms to their physical health. Like other aspects of organizational life, this biobehavioral theory of incivility response is anything but simple. But it may help explain how seemingly “small” insults can sometimes have large effects, ultimately undermining workforce well-being. It may also suggest novel sites for incivility intervention, focusing on the relational and inclusive side of work. The overarching goal of this article is to motivate new science on workplace incivility, new knowledge, and ultimately, new solutions.

scholarly journals Trajectories of emotional well-being in mothers of adolescents and adults with autism.

2011 ◽  
Vol 47 (2) ◽  
pp. 551-561 ◽  
Author(s):  
Erin T. Barker ◽  
Sigan L. Hartley ◽  
Marsha Mailick Seltzer ◽  
Frank J. Floyd ◽  
Jan S. Greenberg ◽  
...  
Keyword(s):  
Well Being ◽  
Adults With Autism ◽  
Adolescents And Adults

PT Trim Fat Burn Reviews v1

2022 ◽  
Author(s):  
pttrimfatburn not provided
Keyword(s):  
Physical Health ◽  
Positive Relationship ◽  
Well Being ◽  
The Body ◽  
Psychological Well Being ◽  
Daily Routines

Creating a healthier lifestyle for the body and mind requires considering what we eat and drink and our daily routines and habits. Psychological well-being and physical health go hand in hand when you have a positive relationship with food.

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