scholarly journals English version of the self-administered Fabry Pain Questionnaire for adult patients

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Ana Jovanovic ◽  
Philipp Klassen ◽  
Peter Heuschmann ◽  
Claudia Sommer ◽  
Mark Roberts ◽  
...  
Keyword(s):  
Intraclass Correlation ◽  
The Self ◽  
English Version ◽  
Self Administration ◽  
High Agreement ◽  
Pain Questionnaire ◽  
Face To Face ◽  
Burning Pain ◽  
The Individual ◽  
First Pain

Abstract Background Pain is an early symptom of Fabry disease (FD) and is characterized by a unique phenotype with mainly episodic acral and triggerable burning pain. Recently, we designed and validated the first pain questionnaire for adult FD patients in an interview and a self-administered version in German: the Würzburg Fabry Pain Questionnaire (FPQ). We now report the validation of the English version of the self-administered FPQ (enFPQ). Methods After two forward–backward translations of the FPQ by native German and native English speakers, the enFPQ was applied at The Mark Holland Metabolic Unit, Manchester, UK for validation. Consecutive patients with genetically ascertained FD and current or previous FD pain underwent a face-to-face interview using the enFPQ. Two weeks later, patients filled in the self-administered enFPQ at home. The agreement between entries collected by supervised administration and self-administration of the enFPQ was assessed via Gwet’s AC1-statistics (AC1) for nominal-scaled scores and intraclass correlation coefficient (ICC) for interval-scaled elements. Results Eighty-three FD patients underwent the face-to-face interview and 54 patients sent back a completed self-administered version of the enFPQ 2 weeks later. We found high agreement with a mean AC1-statistics of 0.725 for 55 items, and very high agreement with a mean ICC of 0.811 for 9 items. Conclusions We provide the validated English version of the FPQ for self-administration in adult FD patients. The enFPQ collects detailed information on the individual FD pain phenotype and thus builds a solid basis for better pain classification and treatment in patients with FD.

Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R

2019 ◽  
Vol 91 (1) ◽  
pp. 75-81 ◽  
Author(s):  
Leonhard A Bakker ◽  
Carin D Schröder ◽  
Harold H G Tan ◽  
Simone M A G Vugts ◽  
Ruben P A van Eijk ◽  
...  
Keyword(s):  
Rating Scale ◽  
Clinical Care ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
The Self ◽  
Coefficient Alpha ◽  
Rater Agreement ◽  
Self Administration ◽  
Limits Of Agreement ◽  
Rater Reliability

ObjectiveThe Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is widely applied to assess disease severity and progression in patients with motor neuron disease (MND). The objective of the study is to assess the inter-rater and intra-rater reproducibility, i.e., the inter-rater and intra-rater reliability and agreement, of a self-administration version of the ALSFRS-R for use in apps, online platforms, clinical care and trials.MethodsThe self-administration version of the ALSFRS-R was developed based on both patient and expert feedback. To assess the inter-rater reproducibility, 59 patients with MND filled out the ALSFRS-R online and were subsequently assessed on the ALSFRS-R by three raters. To assess the intra-rater reproducibility, patients were invited on two occasions to complete the ALSFRS-R online. Reliability was assessed with intraclass correlation coefficients, agreement was assessed with Bland-Altman plots and paired samples t-tests, and internal consistency was examined with Cronbach’s coefficient alpha.ResultsThe self-administration version of the ALSFRS-R demonstrated excellent inter-rater and intra-rater reliability. The assessment of inter-rater agreement demonstrated small systematic differences between patients and raters and acceptable limits of agreement. The assessment of intra-rater agreement demonstrated no systematic changes between time points; limits of agreement were 4.3 points for the total score and ranged from 1.6 to 2.4 points for the domain scores. Coefficient alpha values were acceptable.DiscussionThe self-administration version of the ALSFRS-R demonstrates high reproducibility and can be used in apps and online portals for both individual comparisons, facilitating the management of clinical care and group comparisons in clinical trials.

scholarly journals La riscoperta dell'amicizia nell'età adulta in tempo di pandemia

2021 ◽  
Vol 11 (2) ◽  
Author(s):  
Federico Zannoni
Keyword(s):  
Social Isolation ◽  
The Self ◽  
Mutual Assistance ◽  
Face To Face ◽  
The Social ◽  
The World ◽  
The Individual ◽  
Relationship Of ◽  
Collective Dimension ◽  
Over Time

In recent decades we have witnessed the disruptive rise of an ultraliberalism which, by enhancing the autonomy of the individual, has given the collective dimension a primarily instrumental connotation; the affirmation of the “self-centered man” (Bertin’s definition), that pursues the experience of the world above all on the level of “possession”, has intertwined with the crisis, especially among adults, in the practice of friendship, understood as a relationship of voluntary, free interdependence, which continues over time through manifestations of sharing, complicity, intimacy, affection and mutual assistance. The social isolation resulting from the pandemic event has led to the reconsideration of the importance of friendships and to the search for new opportunities for meeting, online or face to face (possibly respecting the current restrictive rules for the containment of the epidemic), in which “being together” is predominant over “doing something together”.

Collection of Ego-Centered Network Data with Computer-Assisted Interviews

Methodology ◽  
2006 ◽  
Vol 2 (1) ◽  
pp. 7-15 ◽  
Author(s):  
Joachim Gerich ◽  
Roland Lehner
Keyword(s):  
Survey Methods ◽  
A Priori ◽  
Dynamic Structure ◽  
Computer Assisted ◽  
Network Data ◽  
Great Effort ◽  
Self Administration ◽  
Face To Face ◽  
Full Network

Although ego-centered network data provide information that is limited in various ways as compared with full network data, an ego-centered design can be used without the need for a priori and researcher-defined network borders. Moreover, ego-centered network data can be obtained with traditional survey methods. However, due to the dynamic structure of the questionnaires involved, a great effort is required on the part of either respondents (with self-administration) or interviewers (with face-to-face interviews). As an alternative, we will show the advantages of using CASI (computer-assisted self-administered interview) methods for the collection of ego-centered network data as applied in a study on the role of social networks in substance use among college students.

Manageable Self in the Early Hellenistic Era

2010 ◽  
Vol 39 (2) ◽  
pp. 34-36
Author(s):  
Vaia Touna
Keyword(s):  
Social Economic ◽  
Ancient Greece ◽  
The Self ◽  
Hellenistic Period ◽  
Political Conditions ◽  
The Individual

This paper argues that the rise of what is commonly termed "personal religion" during the Classic-Hellenistic period is not the result of an inner need or even quality of the self, as often argued by those who see in ancient Greece foreshadowing of Christianity, but rather was the result of social, economic, and political conditions that made it possible for Hellenistic Greeks to redefine the perception of the individual and its relationship to others.

Monkey on My Back. An Autoethnographic Narrative of a Therapeutic Experience

2020 ◽  
Author(s):  
Adam Wiesner
Keyword(s):  
Personal Experience ◽  
Meaning Making ◽  
The Self ◽  
Symbolic Language ◽  
Discursive Practices ◽  
Therapeutic Experience ◽  
Postmodern Philosophy ◽  
The Moment ◽  
The Individual ◽  
Global Uncertainty

With a conscious attempt to contribute to contemporary discussions in mad/trans/queer/monster studies, the monograph approaches complex postmodern theories and contextualizes them from an autoethnographic methodological perspective. As the self-explanatory subtitle reads, the book introduces several topics as revelatory fields for the author’s self-exploration at the moment of an intense epistemological and ontological crisis. Reflexively written, it does not solely focus on a personal experience, as it also aims at bridging the gap between the individual and the collective in times of global uncertainty. There are no solid outcomes defined; nevertheless, the narrative points to a certain—more fluid—way out. Through introducing alternative ways of hermeneutics and meaning-making, the book offers a synthesis of postmodern philosophy and therapy, evolutionary astrology as a symbolic language, embodied inquiry, and Buddhist thought that together represent a critical attempt to challenge the pathologizing discursive practices of modern disciplines during the neoliberal capitalist era.

Epilogue

2017 ◽  
Author(s):  
Joshua S. Walden
Keyword(s):  
The Body ◽  
The Self ◽  
The Individual ◽  
Relationship Of ◽  
The Relationship

The book’s epilogue explores the place of musical portraiture in the context of posthumous depictions of the deceased, and in relation to the so-called posthuman condition, which describes contemporary changes in the relationship of the individual with such aspects of life as technology and the body. It first examines Alfred Hitchcock’s Vertigo to view how Bernard Herrmann’s score relates to issues of portraiture and the depiction of the identity of the deceased. It then considers the work of cyborg composer-artist Neil Harbisson, who has aimed, through the use of new capabilities of hybridity between the body and technology, to convey something akin to visual likeness in his series of Sound Portraits. The epilogue shows how an examination of contemporary views of posthumous and posthuman identities helps to illuminate the ways music represents the self throughout the genre of musical portraiture.

Pathways to Success Through Identity-Based Motivation

2015 ◽  
Author(s):  
Daphna Oyserman
Keyword(s):  
The Self ◽  
The Core ◽  
Very Young Children ◽  
The Future ◽  
Identity Based ◽  
Future Self ◽  
Fidelity Measures ◽  
The Individual ◽  
Taking Action ◽  
Minimal Effort

Everyone can imagine their future self, even very young children, and this future self is usually positive and education-linked. To make progress toward an aspired future or away from a feared future requires people to plan and take action. Unfortunately, most people often start too late and commit minimal effort to ineffective strategies that lead their attention elsewhere. As a result, their high hopes and earnest resolutions often fall short. In Pathways to Success Through Identity-Based Motivation Daphna Oyserman focuses on situational constraints and affordances that trigger or impede taking action. Focusing on when the future-self matters and how to reduce the shortfall between the self that one aspires to become and the outcomes that one actually attains, Oyserman introduces the reader to the core theoretical framework of identity-based motivation (IBM) theory. IBM theory is the prediction that people prefer to act in identity-congruent ways but that the identity-to-behavior link is opaque for a number of reasons (the future feels far away, difficulty of working on goals is misinterpreted, and strategies for attaining goals do not feel identity-congruent). Oyserman's book goes on to also include the stakes and how the importance of education comes into play as it improves the lives of the individual, their family, and their society. The framework of IBM theory and how to achieve it is broken down into three parts: how to translate identity-based motivation into a practical intervention, an outline of the intervention, and empirical evidence that it works. In addition, the book also includes an implementation manual and fidelity measures for educators utilizing this book to intervene for the improvement of academic outcomes.

Notes from the Trenches

2018 ◽  
Author(s):  
David Wendell Moller
Keyword(s):  
Personal Autonomy ◽  
Employment Opportunity ◽  
The Self ◽  
Deep South ◽  
Spiritual Beliefs ◽  
Urban Living ◽  
Life And Death ◽  
Personal Empowerment ◽  
Self Worth ◽  
The Individual

This chapter details the vicissitudes of race and poverty shaped J. W. Green’s upbringing in the Deep South as well as his adjustment to urban living as an adult. His lack of education, employment opportunity, and personal empowerment led to a “life on the streets.” Stoic faith saw him through a life and death in poverty. Mr. Green teaches us that everyone comes to this phase of life with strengths to cull from their cultural and spiritual beliefs. Mr. Green also teaches us that dignified dying does not require the unfettered exercise of personal autonomy, although a deep and abiding respect for the self-worth of the individual is necessary.

The Crisis of Becoming-Nature in Howard Barker’s Recent Dramas

2020 ◽  
Vol 8 (1) ◽  
pp. 100-114
Author(s):  
Karoline Gritzner
Keyword(s):  
Recent Work ◽  
Human Body ◽  
Elderly Women ◽  
Young Men ◽  
Human Agency ◽  
The Self ◽  
Love Relationships ◽  
Late Style ◽  
Life Force ◽  
The Individual

AbstractThis article discusses how in Howard Barker’s recent work the idea of the subject’s crisis hinges on the introduction of an impersonal or transpersonal life force that persists beyond human agency. The article considers Barker’s metaphorical treatment of the images of land and stone and their interrelationship with the human body, where the notion of subjective crisis results from an awareness of objective forces that transcend the self. In “Immense Kiss” (2018) and “Critique of Pure Feeling” (2018), the idea of crisis, whilst still dominant, seems to lose its intermittent character of singular rupture and reveals itself as a permanent force of dissolution and reification. In these plays, the evocation of nonhuman nature in the love relationships between young men and elderly women affirms the existence of something that goes beyond the individual, which Barker approaches with a late-style poetic sensibility.

scholarly journals Risk Factors for Oral Health in Anorexia Nervosa: Comparison of a Self-Report Questionnaire and a Face-to-Face Interview

2021 ◽  
Vol 18 (8) ◽  
pp. 4212
Author(s):  
Hélène Rangé ◽  
Alice Pallier ◽  
Aminata Ali ◽  
Caroline Huas ◽  
Pierre Colon ◽  
...  
Keyword(s):  
Risk Factors ◽  
Anorexia Nervosa ◽  
Oral Health ◽  
Statistical Tests ◽  
The Self ◽  
Self Report ◽  
Short Version ◽  
Oral Diseases ◽  
Face To Face ◽  
Local Risk

Behavioral, nutritional, and local risk factors for oral health are frequent in people with anorexia nervosa. However no self-report questionnaire is available for screening in clinical practice or for research purposes. The objective of this study was to design a questionnaire to identify risk factors and symptoms of oral diseases and to test its reliability as a self-report form among people with anorexia nervosa. A 26-item questionnaire was designed based on a sound literature review performed by a group of dentists, psychiatrists, and epidemiologists specialized in the field of eating disorders. Sixty-nine anorexia nervosa inpatients (mean age 18.72 ± 5.1) were included from four specialized units. The questionnaire was first self-reported by the patients, then the same questionnaire was administrated by a dentist during a structured face-to-face interview as the gold standard. The concordance between the two forms was evaluated globally and item per item using Cohen’s kappa statistical tests. The overall concordance between the self-report questionnaire and the face-to-face structured interview was 55%. Of the 26 items, 19 showed significant concordance. Items relating to water intake, extracted teeth, gingival status, and oral hygiene had the best concordance (all kappa coefficients > 0.4). A questionnaire that identifies risk factors and symptoms of oral diseases in anorexia nervosa was developed and tested. The 26-item form of the questionnaire (long version) is moderately reliable as a self-reported form. A short version of the questionnaire, including the 10 most reliable items, is recommended for oral risk assessment in patients with anorexia nervosa. The clinical value of the self-administered questionnaire remains to be evaluated.

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