HaemoPREF: Further evaluation of patient perception and preference for treatment in a real world setting.

INTRODUCTION: Adherence to haemophilia A (HA) treatment may be influenced by patients' beliefs about their condition and treatment. Furthermore, difficulties administering treatment may lead to poor adherence. New treatment strategies aim to reduce the burden associated with administration and to improve patient perception of treatment, which, in turn, increase adherence levels. AIMS: This study aimed to examine patient perception of HA treatment and related factors using patient-reported outcome (PRO) questionnaires and to confirm the psychometric properties of a recently developed questionnaire, the HaemoPREF. METHODS: A non-interventional, cross-sectional, questionnaire study was conducted with adult HA patients in Spain (n=31), Germany (n=10) and Italy (n=48), who were using ReFacto AF with the FuseNGo administration device. Patients completed the HaemoPREF and other questionnaires measuring related constructs: treatment adherence, satisfaction and well-being, online at two time points. Correlational, regression and psychometric analyses were conducted. RESULTS: PRO scores indicated that patients are satisfied with and adherent to their treatment. Multivariate regression of the HaemoPREF global score identified a number of significant predictors (P≤.05). The HaemoPREF Global Score had a moderate relationship with subscales on the related questionnaires (mean correlation=0.43; range=0.39-0.48). The HaemoPREF demonstrated good test-retest reliability (intraclass correlation coefficient=0.82), internal consistency reliability (Cronbach's alpha range=0.69-0.82) and convergent validity with measures of treatment satisfaction (Spearman correlation coefficient, r=.48) and well-being (r=.41). CONCLUSION: The findings suggest that patients using ReFacto AF with FuseNGo were satisfied with and adherent to their treatment. The HaemoPREF can identify important concepts relating to patient treatment experience in HA.

Simeprevir added to peginterferon and ribavirin lessens time with fatigue, depressive symptoms and functional limitations in patients with chronic hepatitis C compared with peginterferon and ribavirin: results from 1161 patients in the QUEST-1, QUEST-2 and PROMISE studies.

The value of adding simeprevir (SMV) vs placebo (PBO) to peginterferon and ribavirin (PR) for treatment of chronic hepatitis C virus infection was examined using patient-reported outcomes (PROs); further, concordance of PROs with virology endpoints and adverse events (AEs) was explored. Patients (n = 768 SMV/PR, n = 393 PBO/PR) rated fatigue (FSS), depressive symptoms (CES-D) and functional impairment (WPAI: Hepatitis C Productivity, Daily Activity and Absenteeism) at baseline and throughout treatment in three randomised, double-blind trials comparing the addition of SMV or PBO during initial 12 weeks of PR. PR was administered for 48 weeks (PBO group) and 24/48 weeks (SMV group) using a response-guided therapy (RGT) approach. Mean PRO scores (except Absenteeism) worsened from baseline to Week 4 to the same extent in both groups but reverted after Week 24 for SMV/PR and only after Week 48 for PBO/PR. Accordingly, there was a significantly lower area under the curve (baseline-Week 60, AUC60 ) and fewer weeks with clinically important worsening of scores in the SMV/PR group at any time point. Incidences of patients with fatigue and anaemia AEs were similar in both groups, but FSS scores showed that clinically important increases in fatigue lasted a mean of 6.9 weeks longer with PBO/PR (P < 0.001). PRO score subgroup analysis indicated better outcomes for patients who met the criteria for RGT or achieved sustained virological response 12 weeks post-treatment (SVR12); differences in mean PRO scores associated with fibrosis level were only observed with PBO/PR. Greater efficacy of SMV/PR enabled reduced treatment duration and reduced time with PR-related AEs without adding to AE severity.

Development and psychometric evaluation of a novel tool for assessing patient perception and preference for haemophilia treatment (HaemoPREF).

Prophylactic use of treatment is important for good outcomes in haemophilia, yet adherence can be suboptimal. To better understand the relationship between treatment adherence and patients' beliefs about treatment there is a need to quantify patients' treatment attitudes. The aim of this study was to develop a brief, clinically relevant, patient-reported outcome (PRO) to measure ease of use and patients' preference for haemophilia treatment. A 40-item questionnaire was completed by male adults with haemophilia A from Austria, Germany, Italy, Spain and the UK. Robust statistical methods for item evaluation including item-level statistics, dimensionality analyses and input from clinical and outcomes experts were used to inform item reduction. Retained items were subjected to psychometric evaluation including exploratory factor analysis (EFA), known-groups validity and internal consistency reliability. 273 patients completed the questionnaire. Of the 40 items, 28 items were flagged for possible deletion based on item-level statistics, three of which were retained due to clinical relevance. Two items had acceptable statistical performance but were deleted based on low clinical relevance. A total of 13 items were retained. EFA produced a conceptually defined 5-factor solution. The survey had acceptable known-groups validity and internal consistency. Refinements were made to wording and scoring, and one new item was added to assess general ease of use, resulting in a 14-item questionnaire - the HaemoPREF. Preliminary measurement properties of the HaemoPREF support the instrument to evaluate patient perception and preference for haemophilia treatment. Further psychometric evaluation is required to examine and confirm the measurement properties of the scale.

Discrimination reported by people with schizophrenia: cross-national variations in relation to the Human Development Index.

AIMS: Mental health related stigma and discrimination is a universal phenomenon and a contributor to the adversity experienced by people with schizophrenia. Research has produced inconsistent findings on how discrimination differs across settings and the contextual factors that underpin these differences. This study investigates the association between country-level Human Development Index (HDI) and experienced and anticipated discrimination reported by people with schizophrenia. METHODS: This study is a secondary data analysis of a global cross-sectional survey completed by people living with schizophrenia across 29 countries, between 2005 and 2008. Experienced and anticipated discrimination were assessed using the Discrimination and Stigma Scale (DISC-10). Countries were classified according to their 2006 HDI. Negative binomial and Poisson regression analyses with a robust standard errors approach were conducted to investigate associations between country-level HDI and discrimination. RESULTS: In the regression analyses, no evidence was found for a linear association between HDI and experienced or anticipated discrimination. Further exploratory analyses showed a significant non-linear association between HDI ratings and experienced discrimination. Participants in "high" and "very high" HDI countries reported more experienced discrimination compared to those in "medium" HDI countries. CONCLUSIONS: HDI does, to some extent, appear to be associated with how far discrimination is experienced across different contexts. More high-quality cross-national research, including research focused on "medium" and "low" countries, is needed to substantiate these findings and identify underlying factors that may explain the pattern observed for experienced discrimination, including generating new datasets that would enable for these analyses to be repeated and contrasted with more recent data. An in-depth understanding of these factors will further aid the adaptation of cross-cultural and context specific anti-stigma interventions in future.

Association between public views of mental illness and self-stigma among individuals with mental illness in 14 European countries.

BACKGROUND: Little is known about how the views of the public are related to self-stigma among people with mental health problems. Despite increasing activity aimed at reducing mental illness stigma, there is little evidence to guide and inform specific anti-stigma campaign development and messages to be used in mass campaigns. A better understanding of the association between public knowledge, attitudes and behaviours and the internalization of stigma among people with mental health problems is needed. METHOD: This study links two large, international datasets to explore the association between public stigma in 14 European countries (Eurobarometer survey) and individual reports of self-stigma, perceived discrimination and empowerment among persons with mental illness (n=1835) residing in those countries [the Global Alliance of Mental Illness Advocacy Networks (GAMIAN) study]. RESULTS: Individuals with mental illness living in countries with less stigmatizing attitudes, higher rates of help-seeking and treatment utilization and better perceived access to information had lower rates of self-stigma and perceived discrimination and those living in countries where the public felt more comfortable talking to people with mental illness had less self-stigma and felt more empowered. CONCLUSIONS: Targeting the general public through mass anti-stigma interventions may lead to a virtuous cycle by disrupting the negative feedback engendered by public stigma, thereby reducing self-stigma among people with mental health problems. A combined approach involving knowledge, attitudes and behaviour is needed; mass interventions that facilitate disclosure and positive social contact may be the most effective. Improving availability of information about mental health issues and facilitating access to care and help-seeking also show promise with regard to stigma.

Anticipated discrimination among people with schizophrenia.

OBJECTIVE: The aim of this study was to evaluate the level of anticipated discrimination in people with schizophrenia (n = 732) from 27 countries in the International Study of Discrimination and Stigma Outcomes (INDIGO). METHOD: Anticipated discrimination was assessed through four questions of Discrimination and Stigma Scale. Twenty-five individuals were identified at each site who were reasonably representative of all such treated cases within the local area. RESULTS: Sixty-four per cent of the participants reported that they had stopped themselves from applying for work, training or education because of anticipated discrimination. Seventy-two per cent of them reported that they felt the need to conceal their diagnosis. Expecting to be avoided by others who know about their diagnosis was highly associated with decisions to conceal their diagnosis. Those who concealed their diagnosis were younger and more educated. The participants who perceived discrimination by others were more likely to stop themselves from looking for a close relationship. Anticipated discrimination in finding and keeping work was more common in the absence than in the presence of experienced discrimination, and the similar findings applied to intimate relationships. CONCLUSION: This study shows that anticipated discrimination among people with schizophrenia is common, but is not necessarily associated with experienced discrimination.

How much does mental health discrimination cost: valuing experienced discrimination in relation to healthcare care costs and community participation.

AIMS: This study builds on existing research on the prevalence and consequences of mental illness discrimination by investigating and quantifying the relationships between experienced discrimination and costs of healthcare and leisure activities/social participation among secondary mental health service users in England. METHODS: We use data from the Mental Illness-Related Investigations on Discrimination (MIRIAD) study (n = 202) and a subsample of the Viewpoint study (n = 190). We examine experiences of discrimination due to mental illness in the domains of personal relationships, community activities, and health care, and how such experienced discrimination relates to patterns of service use and engagement in leisure activities. RESULTS: Our findings show that the cost of health services used for individuals who reported previous experiences of discrimination in a healthcare setting was almost twice as high as for those who did not report any discrimination during the last 12 months (Relative Risk: 1.73; 95% Confidence Interval (CI): 1.39, 2.17) and this was maintained after controlling for symptoms and functioning. Experienced discrimination in healthcare (Relative Risk: 0.83; 95% CI: 0.81, 0.84) or in relationships (Relative Risk: 0.89; 95% CI: 0.87, 0.91), however, was associated with lower participation in, and hence lower costs of, leisure activities. Individuals who reported any discrimination in a healthcare setting had, on average, £434 higher costs associated with health service use while reported discrimination in the community was associated with increased leisure costs of £32. CONCLUSIONS: These findings make an important initial step towards understanding the magnitude of the costs of mental health-related discrimination.

[Mechanical nail pathology]. / Pathologie unguéale mécanique.

Nails are submitted to a lot of trauma in the everyday life; their response to these traumatisms is various and they show themselves in misleading clinical manifestations leading often to misdiagnosis such onychomycosis or nail pathology of another origin. As for toenails dystrophies, repeated microtraumatisms in the shoes are the main cause and these dystrophies often reveal biomechanical disorders. As for fingernails, except the occupational pathology which is not related in this paper, nails dystrophies are particularly self-inflicted due to an obsessional-compulsive disorder. We are describing here the different nails dystrophies of mechanical aetiology, the different original factors and their mechanisms, as well as signs leading to the diagnosis.

Disclosure of a mental health problem in the employment context: qualitative study of beliefs and experiences.

Aims. Decisions regarding disclosure of a mental health problem are complex and can involve reconciling conflicting needs and values. This article provides a qualitative account of the beliefs and experiences of mental health service users regarding disclosure in employment contexts. Methods. Total sample of 45 individuals were interviewed in two study phases. In phase one, semi-structured interviews were carried out with 15 mental health service users. The transcripts were analysed using interpretative phenomenological analysis (IPA). In phase two, identified themes were further explored through interviews with mental health service users (n = 30) in three employment contexts: in paid employment (n = 10); in study or voluntary work (n = 10); and currently unemployed (n = 10). These were analysed using directed content analysis. Results. Four super-ordinate themes were drawn from phase one analysis: (1) public understanding of mental health problems; (2) the employment context; (3) personal impact of labelling and (4) disclosure needs. These themes were reflective of the content of phase two interviews. Conclusions. Greater emphasis needs to be placed on considering the societal, employment and interpersonal influences which form the basis for disclosure beliefs and experiences.