Corrigendum to: Associations between illness cognitions and health-related quality of life in the first year after diagnosis of amyotrophic lateral sclerosis (vol 132, 109974, 2020)

The authors regret that in the original published article the first and surnames for two authors were presented in the incorrect order and should be swapped around. The correct names for the second and fifth authors are M.W.M. Post and J.M.A. Visser-Meily respectively. The authors would like to apologise for any inconvenience caused

Associations between illness cognitions and health-related quality of life in the first year after diagnosis of amyotrophic lateral sclerosis

Objective: To describe illness cognitions among patients with amyotrophic lateral sclerosis (ALS), to study crosssectional associations between illness cognitions and health-related quality of life (HRQoL) and to study the predictive value of illness cognitions measured shortly after the diagnosis for HRQoL at follow-up. Methods: Prospective longitudinal design. We administered Self-report questionnaires at study onset (n = 72) and follow-up (n = 48). Median follow-up period was 10.0 months. At baseline median ALS Functional Rating Scale-Revised was 43, median time since onset of symptoms was 13.6 months, 79% of patients presented with spinal onset. Illness cognitions Helplessness, Acceptance and Disease Benefits were measured with the Illness Cognitions Questionnaire (ICQ) and HRQoL with the ALS Assessment Questionnaire (ALSAQ-40). Correlational and regression analyses were used. Results: Patients experienced more Helplessness at follow-up. We found no significant changes in Acceptance or Disease Benefits at follow-up. In cross-sectional analyses, Helplessness was independently related to worse HRQoL at baseline (beta = 0.44; p =.001) and Acceptance and Disease Benefits were independently related to worse HRQoL at follow-up (beta = -0.17, p =.045) and (beta = -0.186, p =.03 respectively). Longitudinal analyses showed that, adjusted for disease severity at baseline, Helplessness at baseline was a predictor of worse HRQoL at follow-up (beta = 0.43; p =.006). None of the illness cognitions were a significant predictor of HRQoL with adjustment for baseline HRQoL. Conclusion: Helplessness was independently associated with HRQoL in the cross-sectional and longitudinal analyses. These results can help us identify patients shortly after diagnosis who might benefit from psychological interventions

Participation and autonomy in the first 10 months after diagnosis of ALS:a longitudinal study

Introduction: More insight is needed into participation in daily activities and autonomy among patients with amyotrophic lateral sclerosis (ALS). Aims of this study were (1) to describe the course of participation restrictions and autonomy in participation during the first 10 months after diagnosis; (2) to study the influence of the rate of ALS progression on the course of participation. Methods: Secondary analysis of data from the longitudinal multicenter FACTS-2-ALS study. Self-report questionnaires were administered at inclusion (T0; n = 71), at 4 months (T1), 7 months (T2), 10 months (T3) after inclusion. Median duration of follow-up was 10.0 months. Participation restrictions were assessed using the sum of the Mobility Range and Social Behavior subscales of the Sickness Impact profile-68 (SIPSOC). Autonomy in participation was assessed using the Impact on Participation and Autonomy (IPA) Questionnaire. Fast disease progression was defined as an increase of 1.1 points per month or more on the ALS Functional Rating Scale. Results: Patients reported participation restrictions in all subscales while having mild physical limitations. There was a decrease of participation over time (restrictions and autonomy). This decrease was greatest in patients with fast disease progression. Disease progression negatively influenced movement-related participation more than social interaction domains. Rate of disease progression was more strongly related to SIPSOC scores compared to IPA scores. Discussion: Preserving participation may be an important determinant of quality of care for patients with ALS. Rate of progression of the disease should be taken into account as it was found to be significantly associated with the level of participation

Temperament in preadolescence is associated with weight and eating pathology in young adulthood

Objective Few longitudinal studies have investigated the role of temperament traits on weight and eating problems thus far. We investigated whether temperament in preadolescence influences body weight and the development of eating pathology in adolescence and young adulthood. Method This study used data from TRAILS (Tracking Adolescents' Individual Lives Survey), a Dutch community cohort study (N = 2,230) from preadolescence into adulthood. At age 11, the temperament dimensions negative affectivity and effortful control were measured with the Early Adolescent Temperament Questionnaire-Revised. Body mass index (BMI) was measured at all assessment waves. At age 19, the prevalence of eating disorders was investigated by two-stage screening including interviews by eating disorder experts. At age 22 and 26, the Eating Disorder Diagnostic Scale was used to assess the level of eating pathology. Results Higher negative affectivity in preadolescence was associated with higher BMI and eating pathology in young adulthood. Lower effortful control in preadolescence was found to be a risk factor for the development of obesity in young adulthood. No association was found between effortful control in preadolescence and eating pathology in later life. Discussion Both negative affectivity and effortful control play a role in the development of weight or eating problems during adolescence

Revisiting land cover observations to address the needs of the climate modeling community

Improving systematic observations of land cover, as an Essential Climate Variable, should contribute to a better understanding of the global climate system and thus improve our ability to predict climatic change. The aim of this paper is to bring global land cover observations closer to meeting the needs of climate science. First, consultation mechanisms were established with the climate modeling community to identify its specific requirements in terms of satellite-based global land cover products. This assessment highlighted specific needs in terms of land cover characterization, accuracy of products, as well as stability and consistency needs that are currently not met or even addressed. The current land cover representation and mapping techniques were then called into question to specifically focus on the critical need of stable products expressed by climate users. Decoupling the stable and dynamic components of the land cover characterization and using a multi-year dataset were proposed as two key approaches to allow generating consistent suites of global land cover products over time

Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases

BACKGROUND: Poor monitoring of respiratory function may lead to late initiation of non-invasive ventilation (NIV) in patients with motor neuron diseases (MND). Monitoring could be improved by remotely assessing hypoventilation symptoms between clinic visits. We aimed to determine which patient-reported hypoventilation symptoms are best for screening reduced respiratory function in patients with MND, and compared them to the respiratory domain of the amyotrophic lateral sclerosis functional rating scale (ALSFRS-R). METHODS: This prospective multi-center study included 100 patients with MND, who were able to perform a supine vital capacity test. Reduced respiratory function was defined as a predicted supine vital capacity ≤ 80%. We developed a 14-item hypoventilation symptom questionnaire (HYSQ) based on guidelines, expert opinion and think-aloud interviews with patients. Symptoms of the HYSQ were related to dyspnea, sleep quality, sleepiness/fatigue and pneumonia. The diagnostic performances of these symptoms and the ALSFRS-R respiratory domain were determined from the receiver operating characteristic (ROC) curves, area under the curve (AUC), sensitivity, specificity, predictive values and accuracy. RESULTS: Dyspnea-related symptoms (dyspnea while eating/talking, while lying flat and during light activity) were combined into the MND Dyspnea Scale (MND-DS). ROC curves showed that the MND-DS had the best diagnostic performance, with the highest AUC = 0.72, sensitivity = 75% and accuracy = 71%. Sleep-quality symptoms, sleepiness/fatigue-related symptoms and the ALSFRS-R respiratory domain showed weak diagnostic performance. CONCLUSION: The diagnostic performance of the MND-DS was better than the respiratory domain of the ALSFRS-R for screening reduced respiratory function in patients with MND, and is, therefore, the preferred method for (remotely) monitoring respiratory function

Design of a multicentered randomized controlled trial on the clinical and cost effectiveness of schema therapy for personality disorders

<p>Abstract</p> <p>Background</p> <p>Despite international guidelines describing psychotherapy as first choice for people with personality disorders (PDs), well-designed research on the effectiveness and cost-effectiveness of psychotherapy for PD is scarce. Schema therapy (ST) is a specific form of psychological treatment that proved to be effective for borderline PD. Randomized controlled studies on the effectiveness of ST for other PDs are lacking. Another not yet tested new specialized treatment is Clarification Oriented Psychotherapy (COP). The aim of this project is to perform an effectiveness study as well as an economic evaluation study (cost effectiveness as well as cost-utility) comparing ST versus COP versus treatment as usual (TAU). In this study, we focus on avoidant, dependent, obsessive-compulsive, paranoid, histrionic and narcissistic PD.</p> <p>Methods/Design</p> <p>In a multicentered randomized controlled trial, ST, and COP as an extra experimental condition, are compared to TAU. Minimal 300 patients are recruited in 12 mental health institutes throughout the Netherlands, and receive an extensive screening prior to enrolment in the study. When eligible, they are randomly assigned to one of the intervention groups. An economic evaluation and a qualitative research study on patient and therapist perspectives on ST are embedded in this trial. Outcome assessments (both for clinical effectiveness and economic evaluation) take place at 6,12,18,24 and 36 months after start of treatment. Primary outcome is recovery from PD; secondary measures include general psychopathological complaints, social functioning and quality of life. Data for the cost-effectiveness and cost-utility analyses are collected by using a retrospective cost interview. Information on patient and therapist perspectives is gathered using in-depth interviews and focus groups, and focuses on possible helpful and impeding aspects of ST.</p> <p>Discussion</p> <p>This trial is the first to compare ST and COP head-to-head with TAU for people with a cluster C, paranoid, histrionic and/or narcissistic PD. By combining clinical effectiveness data with an economic evaluation and with direct information from primary stakeholders, this trial offers a complete and thorough view on ST as a contribution to the improvement of treatment for this PD patient group.</p> <p>Trial registration</p> <p>Netherlands Trial Register (NTR): <a href="http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=566">NTR566</a></p