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

Translation, Adaptation and Validation of the Coronary Revascularization Outcome Questionnaire (CROQ) into Greek

Date of Acceptance: 31/05/2015Evaluating the impact of coronary revascularization on patients’ health related quality of life with a patient-based and disease-specific tool is important for drawing conclusions about treatment and outcomes. This study reports on the translation, adaptation and psychometric evaluation of a Greek version of the Coronary Revascularization Outcome Questionnaire (CROQ-Gr)Peer reviewe

Obesity and treatment meanings in bariatric surgery candidates: a qualitative study

Background This study used a qualitative approach to comprehend how the morbid obese conceptualize and deal with obesity and obesity treatment, with the particular aim of exploring the expectations and beliefs about the exigencies and the impact of bariatric surgery. Methods The study population included 30 morbid obese patients (20 women and 10 men) with a mean age of 39.17 years (SD = 8.81) and a mean body mass index of 47.5 (SD = 8.2) interviewed individually before surgery using open-ended questions. The interviews were audiotaped, transcribed, and then coded according to grounded analysis methodology. Results Three main thematic areas emerged from the data: obesity, eating behavior, and treatment. Obesity is described as a stable and hereditary trait. Although participants recognize that personal eating behavior exacerbates this condition, patients see their eating behavior as difficult to change and control. Food seems to be an ever-present dimension and a coping strategy, and to follow an adequate diet plan is described as a huge sacrifice. Bariatric surgery emerges as the only treatment for obesity, and participants highlight this moment as the beginning of a new life where health professionals have the main role. Bariatric surgery candidates see their eating behavior as out of their control, and to commit to its demands is seen as a big sacrifice. For these patients, surgery is understood as a miracle moment that will change their lives without requiring an active role or their participation. Conclusion According to these results, it is necessary to validate them with qualitative and quantitative studies; it is necessary to promote a new awareness of the weight loss process and to empower patients before and after bariatric surgery.Bolsa de doutoramento SFRH/BD/37069/2007 da Fundação para a Ciência e a Tecnologia (FCT

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

The factor structure of the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in thirteen distinct populations

There is considerable evidence that self-criticism plays a major role in the vulnerability to and recovery from psychopathology. Methods to measure this process, and its change over time, are therefore important for research in psychopathology and well-being. This study examined the factor structure of a widely used measure, the Forms of Self-Criticising/Attacking & Self-Reassuring Scale in thirteen nonclinical samples (N = 7510) from twelve different countries: Australia (N = 319), Canada (N = 383), Switzerland (N = 230), Israel (N = 476), Italy (N = 389), Japan (N = 264), the Netherlands (N = 360), Portugal (N = 764), Slovakia (N = 1326), Taiwan (N = 417), the United Kingdom 1 (N = 1570), the United Kingdom 2 (N = 883), and USA (N = 331). This study used more advanced analyses than prior reports: a bifactor item-response theory model, a two-tier item-response theory model, and a non-parametric item-response theory (Mokken) scale analysis. Although the original three-factor solution for the FSCRS (distinguishing between Inadequate-Self, Hated-Self, and Reassured-Self) had an acceptable fit, two-tier models, with two general factors (Self-criticism and Self-reassurance) demonstrated the best fit across all samples. This study provides preliminary evidence suggesting that this two-factor structure can be used in a range of nonclinical contexts across countries and cultures. Inadequate-Self and Hated-Self might not by distinct factors in nonclinical samples. Future work may benefit from distinguishing between self-correction versus shame-based self-criticism.Peer reviewe

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

Peer-Victimization and Mental Health Problems in Adolescents: Are Parental and School Support Protective?

The aim of this study was to investigate the frequency and effects of peer-victimization on mental health problems among adolescents. Parental and school support were assumed as protective factors that might interact with one another in acting as buffers for adolescents against the risk of peer-victimization. Besides these protective factors, age and gender were additionally considered as moderating factors. The Social and Health Assessment survey was conducted among 986 students aged 11–18 years in order to assess peer-victimization, risk and protective factors and mental health problems. For mental health problems, the Strengths and Difficulties Questionnaire (SDQ) was used. Effects of peer-victimization on mental health problems were additionally compared with normative SDQ data in order to obtain information about clinically relevant psychopathology in our study sample. Results of this study show that peer-victimization carries a serious risk for mental health problems in adolescents. School support is effective in both male and female adolescents by acting as a buffer against the effect of victimization, and school support gains increasing importance in more senior students. Parental support seems to be protective against maladjustment, especially in peer-victimized girls entering secondary school. Since the effect of peer-victimization can be reduced by parental and school support, educational interventions are of great importance in cases of peer-victimization