Angela Costa Maia

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context

Introduction Psychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN. Methods and analysis SPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500–2000 patients from centres across the world within a period of 5 years (2013–2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions. Ethics and dissemination The use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Experiências adversas na infância e tentativas de suicídio em adultos com obesidade mórbida

Introduction: Suicide attempts are often associated with eating disorders, both anorexia and bulimia. Likewise, a high incidence of suicide has been observed among obese patients. Previous studies have shown that adverse experiences in childhood may be a risk factor for suicide attempts. Objectives: To characterize and to understand the relationship between adverse experiences and suicide attempts in 100 morbidly obese patients referred for bariatric surgery. Methods: A total of 100 patients were selected from September 2007 to October 2007 and from January 2008 to January 2009. Of these, 20 patients were females. Mean age was 38.89±9.87 years, and mean maximum weight was 136.43±14 kg. The Portuguese version of the Family ACE (Adverse Childhood Experiences) Questionnaire was used to assess the occurrence of adverse events. Results: 88% of the patients reported the existence of at least one adverse experience in childhood, and 25% reported at least one previous suicide attempt. Adversity in childhood was associated with an increased risk for suicide attempts (odds ratio = 2.026). Conclusion: These data should be taken into account in the assessment and monitoring of these patients.

Using Optimal Test Assembly Methods for Shortening Patient-Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale-6: A Scleroderma Patient-Centered Intervention Network Cohort Study.

To develop and validate a short form of the Cochin Hand Function Scale (CHFS), which measures hand disability, for use in systemic sclerosis, using objective criteria and reproducible techniques.

Psychological and health comorbidities before and after bariatric surgery: a longitudinal study

INTRODUCTION Morbid obesity has multiple implications for psychological and physical health. Bariatric surgery has been selected as the treatment of choice for this chronic disease, despite the controversial impact of the surgery on psychosocial health. The objective of this study was to describe candidates for bariatric surgery and analyze changes in weight, psychopathology, personality, and health problems and complaints at 6- and 12- month follow-up assessments. METHODS Thirty obese patients (20 women and 10 men) with a mean age of 39.17±8.81 years were evaluated in different dimensions before surgery and 6 and 12 months after the procedure. RESULTS Six and 12 months after bariatric surgery, patients reported significant weight loss and a significant reduction in the number of health problems and complaints. The rates of self-reported psychopathology were low before surgery, and there were no statistically significant changes over time. The conscientiousness, extraversion, and agreeableness dimensions increased, but neuroticism and openness remained unchanged. All changes had a medium effect size. CONCLUSIONS Our results suggest that patients experience significant health improvements and some positive personality changes after bariatric surgery. Even though these findings underscore the role of bariatric surgery as a relevant treatment for morbid obesity, more in-depth longitudinal studies are needed to elucidate the evolution of patients after the procedure.

Violência contra crianças e adolescentes no Amazonas: análise dos registros

Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.

Avaliação psicométrica de três questionários sobre o historial familiar

Resumen pt: A adversidade durante a infância tem sido um dos temas alvo de numerosos estudos no âmbito da Psicologia, devido a sua prevalencia e ao forte impacto no ...CONTEXTO: A familia e a arena primaria na qual a crianca desenvolve a sua sociabilizacao. As experiencias tidas neste sistema podem constituir um factor protector ou de risco, contribuindo para a sua vulnerabilidade ou resiliencia diante de desordens mentais quando adulto. A avaliacao da historia familiar de experiencias emocionais relevantes e problematica, e o uso de instrumentos psicometricos pode auxiliar a superar certas limitacoes metodologicas. OBJECTIVOS: Desenvolver tres subquestionarios para avaliacao das experiencias emocionais decorridas no contexto familiar da infância ate a adolescencia. Esses instrumentos sao adaptacoes para o portugues do Family Background Questionnaire (FBQ) tratando dos cuidados paliativos e do ambiente familiar e sao administrados retrospectivamente a adultos. METODOS: Tres versoes do FBQ que tratam de (1) cuidados paternos, (2) cuidados maternos e (3) ambiente familiar foram produzidas. Os questionarios foram aplicados a 280 participantes. A avaliacao das propriedades psicometricas desses questionarios teve como base a determinacao da consistencia interna, analise factorial e correlacao de Spearman. RESULTADOS: Os tres questionarios mostraram-se adequados para avaliacao de seus respectivos dominios. CONCLUSOES: A avaliacao objetiva das primeiras experiencias emocionais no contexto familiar produz insights importantes para a compreensao do desenvolvimento psicologico, com implicacoes clinicas e de investigacao.

THU0593 Frequency and Impact of Disease Symptoms Experienced by Patients with Systemic Sclerosis: A Comparison among Five European Countries

Background Systemic sclerosis (SSc) is a complex autoimmune disease with heterogeneous manifestations. The symptoms experienced by patients with SSc are important targets for health professionals like physiotherapists and occupational therapists. Objectives 1) To compare the prevalence in symptoms and their impact on daily functioning; and 2) to compare the use of physiotherapy and/or occupational therapy reported by patients with SSc across five European countries. Methods Patients with SSc across Europe were invited to complete an online survey through announcements by European patient associations. The survey was based on a Canadian questionnaire [1] consisting of questionnaires on sociodemographics, disease characteristics, quality of life, the prevalence and impact of 40 symptoms, and the use of physiotherapy and occupational therapy. Differences in frequency and impact of SSc symptoms among countries were examined by determining 95% confidence intervals (CIs) using the method recommended by Agresti and Coull [2]. Countries with more than 50 responding participants were included in the analyses. Results In total, 569 patients were included in the analyses, living in the Netherlands (N= 240), France (N= 123), the United Kingdom (N= 92), Spain (N= 61), and Switzerland (N= 53). The five most frequently reported symptoms (% (range among countries)) were fatigue (76%–96%), Raynaud’s phenomenon (83%–98%), joint pain (80%–92%), muscle pain (70%–86%), and shortness of breath (65%–86%). French and Dutch participants more often reported fatigue than Spanish patients (96%, 95% and 76%, respectively), whereas Spanish participants more often reported shortness of breath than Dutch patients (86% and 65%, respectively). Furthermore, if present, difficulty walking, swollen joints, and joint pain affected most frequently daily functioning. Use of physiotherapy and/or occupational therapy ranged from 48% (the Netherlands) to 21% (Switzerland). In the Netherlands and in France use of physiotherapy and/or occupational therapy was associated with the number of symptoms (r = 0.17, P = 0.01 and r = 0.25, P = 0.01, respectively). Conclusions European patients with SSc experience a broad range of symptoms with impact on daily functioning. There is a substantial variation in the use of physiotherapy and occupational therapy across the European countries. The results suggest that the provided care delivered by a physiotherapist or an occupational therapist is not yet optimally tuned to the needs of the patient in all countries. References Bassel M, Hudson M, Taillefer SS, Schieir O, Baron M, Thombs BD. Frequency and impact of symptoms experienced by patients with systemic sclerosis: results from a Canadian National Survey. Rheumatology 2011; 50: 762-7. Agresti A, Coull BA. Approximate is better than “exact” for interval estimation of binomial proportions. Am Stat. 1998; 52: 119-26. Disclosure of Interest None Declared

Violence against children and adolescents in Amazonas: analysis of the reports

Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.

Violencia contra los niños y adolescentes en el Amazonas: análisis de los registros

Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.Introduction: Violence against children and adolescents is a widespread phenomenon, but little is known about the contexts in which it occurs and its consequences. The objective of this study was to characterize violence in the inner state of Amazonas. Method: We analyzed 193 records from Txain Report on Violence against Children and Adolescents. Results: Most of the official records have missing information. Physical abuse is the most frequently reported type of violence, and most victims are female, between 12 and 15 years. The perpetrators are predominantly male and unknown from victims. Regarding health consequences, there is reference to some injuries, but the data are quite lacking in relation to mental health. Conclusion: These data suggest the need of improvement in the registration, information and intervention procedures outside of large cities.