Adherence to prophylaxis in adolescents and young adults with severe haemophilia A, a qualitative study with patients

Introduction: Reported levels of adherence to prophylaxis among young people with haemophilia (YPH) vary widely and are predominately based on estimations made by healthcare professionals and parents. Reasons for (non)adherence among YPH in particular have not been evidenced. Aim: to examine experiences in relation to prophylaxis with YPH themselves, and barriers and facilitators to their adherence. Methods: 11 Participants were recruited in five haemophilia centres across England and Wales. All patients who met the inclusion criteria (aged 12-25, diagnosed with haemophilia, on prophylaxis) were approached during a routine check-up appointment, and all participants who agreed to take part were interviewed. Interviews were audio recorded, transcribed and analysed using Interpretative Phenomenological Analysis. Results: Self-reported adherence to prophylaxis was good. Few participants admitted to intentionally skipping injections although they reported sometimes forgetting. However, due to the increasingly personalised and flexible approach to prophylaxis, adherence is not straightforward to define. Barriers to adherence included a busy lifestyle, dislike of the intravenous injection, venous access issues, anxiety or stress and being out of one’s normal routine. Support was an important facilitator to adherence, including support from health professionals at the haemophilia centre as well as friends. Parents appear to be very involved with their child’s haemophilia management, even after they leave home. Conclusion: What this study adds is that the increasingly flexible and personalised approach to managing prophylaxis in haemophilia may sometimes lead to confusion around treatment frequency and dosing. This may lead to accidental non-adherence, which is distinct from both skipping and forgetting. Advice from haemophilia teams may not always be consistent and is likely to be interpreted differently by different individuals. Some additional training and education of patients and their families to increase their knowledge and skills around prophylaxis may reduce this confusion and therefore is likely to improve adherence further

A confirmatory factor analysis and validation of the forms of self-criticism/reassurance scale

Objective: Several studies have used the Forms of Self-Criticism/Reassurance Scale (FSCRS; Gilbert, Clarke, Hempel, Miles, & Irons, 2004) when exploring the role of emotion regulation in psychopathology. However, psychometric evaluation of the FSCRS is limited. The present study sought to confirm the factor structure of the FSCRS based on theoretical and empirical grounds in a large sample of the general population. / Method: The FSCRS was completed by a large sample of men and women (N= 1,570) as part of an online survey. The data were randomly split in order to perform both independent exploratory (EFA) and confirmatory factor analyses (CFA). One-, two- and three-factor solutions were examined. / Results: A three-factor model of reassured-self (RS) and the two types of self-criticism, inadequate-self (IS), and hated-self (HS), proved to be the best-fitting measurement model in this sample (χ2= 800.3, df= 148, p < .001; CFI [comparative fit index]= .966, TLI [Tucker Lewis index]= .961, RMSEA [root mean square error of the approximation]= .074). Although very similar to the original questionnaire, there were some differences in terms of the items that were retained. Validity was confirmed with the shortened FSCRS showing the same associations with mood and sex as the original version of the FSCRS. / Conclusion: A three-factor model (RS, IS and HS) provided the best-fitting structure and confirmed the separation of different types of self-criticism. Future research should explore the degree to which these separable aspects of self-criticism are theoretically and clinically meaningful and to identify the role of self-reassurance in ameliorating their effects

A Multilevel Multidimensional Finite Mixture Item Response Model to Cluster Respondents and Countries: The Forms of Self-Criticising/Attacking and Self-Reassuring Scale

The aim of this study was to test the multilevel multidimensional finite mixture item response model of the Forms of Self-Criticising/Attacking and Self-Reassuring Scale (FSCRS) to cluster respondents and countries from 13 samples (N = 7,714) and from 12 countries. The practical goal was to learn how many discrete classes there are on the level of individuals (i.e., how many cut-offs are to be used) and countries (i.e., the magnitude of similarities and dissimilarities among them). We employed the multilevel multidimensional finite mixture approach which is based on an extended class of multidimensional latent class Item Response Theory (IRT) models. Individuals and countries are partitioned into discrete latent classes with different levels of self-criticism and self-reassurance, taking into account at the same time the multidimensional structure of the construct. This approach was applied to the analysis of the relationships between observed characteristics and latent trait at different levels (individuals and countries), and across different dimensions using the three-dimensional measure of the FSCRS. Results showed that respondents' scores were dependent on unobserved (latent class) individual and country membership, the multidimensional structure of the instrument, and justified the use of a multilevel multidimensional finite mixture item response model in the comparative psychological assessment of individuals and countries. Latent class analysis of the FSCRS showed that individual participants and countries could be divided into discrete classes. Along with the previous findings that the FSCRS is psychometrically robust we can recommend using the FSCRS for measuring self-criticism

Multiple Group IRT Measurement Invariance Analysis of the Forms of Self-Criticising/Attacking and Self-Reassuring Scale in Thirteen International Samples

The purpose of this study was to examine the measurement invariance of the Forms of Self-Criticising/Attacking & Self-Reassuring Scale (FSCRS) in terms of Item Response Theory differential test functioning in thirteen distinct samples (N = 7714) from twelve different countries. We assessed differential test functioning for the three FSCRS subscales, Inadequate-Self, Hated-Self and Reassured-Self separately. 32 of the 78 pairwise comparisons between samples for Inadequate-Self, 42 of the 78 pairwise comparisons for Reassured-Self and 54 of the 78 pairwise comparisons for Hated-Self demonstrated no differential test functioning, i.e. measurement invariance. Hated-Self was the most invariant of the three subscales, suggesting that self-hatred is similarly perceived across different cultures. Nonetheless, all three subscales of FSCRS are sensitive to cross-cultural differences. Considering the possible cultural and linguistic differences in the expression of self-criticism and self-reassurance, future analyses of the meanings and connotations of these constructs across the world are necessary in order to develop or tailor a scale which allows cross-cultural comparisons of various treatment outcomes related to self-criticism

Factorial validity of the Toronto Alexithymia Scale (TAS-20) in clinical samples: A critical examination of the literature and a psychometric study in anorexia nervosa

There is extensive use of the 20-item Toronto Alexithymia Scale (TAS-20) in research and clinical practice in anorexia nervosa (AN), though it is not empirically established in this population. This study aims to examine the factorial validity of the TAS-20 in a Portuguese AN sample (N = 125), testing four different models (ranging from 1 to 4 factors) that were identified in critical examination of existing factor analytic studies. Results of confirmatory factor analysis (CFA) suggested that the three-factor solution, measuring difficulty identifying (DIF) and describing feelings (DDF), and externally oriented thinking (EOT), was the best fitting model. The quality of measurement improves if two EOT items (16 and 18) are eliminated. Internal consistency of EOT was low and decreased with age. The results provide support for the factorial validity of the TAS-20 in AN. Nevertheless, the measurement of EOT requires some caution and may be problematic in AN adolescents.Center for Psychology at the University of Porto, Portuguese Science Foundation (FCT UID/PSI/00050/2013) and EU FEDER through COMPETE 2020 program (POCI-01-0145-FEDER-007294info:eu-repo/semantics/acceptedVersio

Eating disorder subtypes differ in their rates of psychosocial improvement over treatment

Background: Individuals with Anorexia Nervosa (AN) are renowned for their poor short- and long-term treatment outcomes. To gain more insight into the reasons for these poor outcomes, the present study compared patients with AN-R (restrictive subtype), AN-BP (binge-purge subtype), bulimia nervosa (BN), and eating disorder not otherwise specified (EDNOS) over 12 weeks of specialized eating disorders treatment. Eighty-nine patients completed the Eating Disorder Examination- Questionnaire (EDE-Q) and various measures of psychosocial functioning at baseline, and again after weeks 3, 6, 9, and 12 of treatment. Results: Multilevel modeling revealed that, over the 12 weeks, patients with AN-BP and AN-R had slower improvements in global eating disorder pathology, shape concerns, and self-compassion than those with EDNOS and BN. Patients with AN-BP had slower improvements in shame, social safeness (i.e., feelings of warmth in one’s relationships), and received social support compared to those with AN-R, BN, and EDNOS. Conclusions: These findings support the need for more effective and comprehensive clinical interventions for patients with AN and especially AN-BP. Results also highlight not-yet studied processes that might contribute to the poor outcomes AN patients often face during and after treatment

Studies on Body Shame in Eating and Weight Disorders

Studies on body shame in eating and weight disorders