IntroductionPsychosocial 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 analysisSPIN 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 disseminationThe 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.
The literature suggests that childhood maltreatment is related to a higher probability of developing psychopathology and disease in adulthood. However, some authors have questioned the reliability of self-reports of maltreatment, suggesting that psychopathology at the time of evaluation affects self-reports. We evaluated the reliability of the self-reports of 79 young adults who were identified in childhood by Child Protective Services by comparing two moments of evaluation. Psychological and physical symptoms were tested to evaluate their interference with the reports. We found good to excellent agreement, with no significant correlation between the changes in self-reported experiences and the changes in physical and psychological symptoms, suggesting that the reliability of reports is not related to the health state at the time of the report. Keywords Adverse childhood experiences. Reliability. Retrospective reports Research has demonstrated the relationship between adverse childhood experiences and psychopathology (Herrenkohl,
According to these results, it is necessary to validate them with qualitative and quantitative studies (reviewer #2, comment #3); it is necessary to promote a new awareness of the weight loss process and to empower patients before and after bariatric surgery.
Firefighters experience a wide range of traumatic events while on duty and are at risk to develop psychopathology and posttraumatic stress disorder (PTSD). According to cognitive models, the person's interpretation of the traumatic event is responsible for the development of PTSD rather than the traumatic event itself. This cross-sectional study aimed to explore the contribution of perceived threat to explain PTSD symptoms in Portuguese firefighters, after adjusting for potential confounding factors. A sample of 397 firefighters completed self-report measures of exposure to traumatic events, psychopathology, and PTSD. Perceived threat explained unique variance in PTSD symptoms, R(2) = .40, ΔR(2) = .02, F(10, 367) = 24.55, p < .001, Cohen's f(2) =.03, after adjusting for psychopathology, number, recency, and frequency of the events, and other potential confounding variables. The association between psychopathology and PTSD was also moderated by perceived threat, R(2) = .43, ΔR(2) = .03, F(11, 366) = 25.33, p < .001, Cohen's f(2) =.05. Firefighters may benefit from interventions that focus on perceived threat to prevent PTSD symptoms.
The relationship between war exposure and post-traumatic stress disorder (PTSD) has been largely investigated but the impact of the combat experience on physical health has only recently merited attention. The authors investigated the relationship between war exposure and psychological and physical health among 350 Portuguese colonial war veterans. The role of current PTSD symptoms as a mediator of these relationships was also investigated. The results showed that 39% of the veterans met criteria for current PTSD diagnosis and psychological distress was present in half of the sample. Pain, fatigue, and sleep problems were the most reported physical symptoms and mental health and gastro-intestinal problems, the most reported illnesses. Combat exposure variables were significant predictors of current health. The results indicated that veterans with higher exposure to war trauma maintained higher current levels of psychological distress and presented more physical health problems and physical symptoms than those less exposed. Mediation analyses showed that current PTSD was a full mediator of the relationship between war exposure and physical health outcomes.
Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.
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