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The dualistic model of passion has been linked to several psychological constructs related to well-being in runners. Evidence suggests that investigating the interaction of passion subtypes might increase our understanding of the relationship between passion and indices of well-being. This study used both person- and variable-centered analyses to investigate the relationship between passion, multidimensional well-being, and psychological distress in 219 adult marathon runners. We performed a canonical correlation multivariate analysis to determine the relationship between passion types and psychological outcomes, as well as a multivariate analysis of variance to compare passion sub-types to indices of well-being. Results indicated that harmonious passion was significantly and positively related to multidimensional well-being and negatively related to psychological distress, while obsessive passion was significantly and positively related to psychological distress. Minor differences in well-being and distress between passion subtype clusters were also noted. A discussion of these findings includes the potential benefit of considering the harmonious and obsessive passion subtype interaction when examining these measures of well-being in marathon runners. Keywords: passion; well-being; cluster analysis; marathon running; psychological distress, Many anecdotes exist that suggest following one's passion will reap benefits and improve a person's quality of life. This idea that passion is associated with positive outcomes has become more [...]

Between July 2020 and January 2021, 230 principal caregivers completed a questionnaire to measure proxy-assessed health-related quality of life outcomes (HRQoL), behavioral outcomes in children with syndromic autism spectrum disorders and COVID-19 induced changes to lifestyle and environments. HRQoL and behavioral outcomes reported earlier during the pandemic were generally worse compared to those reported later. COVID-19 induced reduction to a caregiver's mental health appointments, and hours spent watching TV were associated with decreases in HRQoL and increased the likelihood of problematic behaviors. Increasing time outdoors and time away from digital devices were positively associated with HRQoL and behaviors and might protect children from COVID-19 induced restrictions., Author(s): Corneliu Bolbocean [sup.1] , Kayla B Rhidenour [sup.2] , Maria McCormack [sup.3] [sup.4] , Bernhard Suter [sup.4] , J Lloyd Holder [sup.3] [sup.4] Author Affiliations: (1) grid.4991.5, 0000 0004 [...]

In recent years, plentiful data has emerged indicating the detrimental effects of loneliness on well-being. One of the challenges for researchers dealing with this issue is to find the mechanism underlying the relationship. The present study investigated 293 adults, aged 19-40, and examined whether authenticity and rumination functioned as mediators in the relationship between loneliness and well-being (and its three domains - pleasure, engagement, and meaning). The results of the study confirmed the loneliness-well-being link and, additionally, revealed potential mechanisms explaining this relationship, which were of different character in the cases of the particular domains of well-being. As it turned out, authenticity was the sole significant mediator in the relationship between loneliness and meaning, and rumination played the role of key mediator between loneliness and pleasure. Both these mediators had their share in the indirect effects of loneliness on engagement and overall well-being. The relations revealed between loneliness and authenticity are, in turn, congruent with recent conceptualizations of authenticity, which emphasize the interpersonal sources of this variable., Author(s): Dominik Borawski [sup.1] Author Affiliations: (1) grid.411821.f, 0000 0001 2292 9126, Department of Psychology, Institute of Pedagogy and Psychology, The Jan Kochanowski University in Kielce, , ul. Krakowska 11, [...]

Purpose: The aim of this study was to investigate a structured approach for effective speech therapy (ST) for dysarthria and speech-related quality of life in patients with sporadic spinocerebellar degeneration (SCD), including cerebellar-type multiple-system atrophy and cerebellar cortical atrophy. Method: Twenty-two patients with SCD (cerebellar-type multiple system atrophy, 15 patients; cerebellar cortical atrophy, seven patients) who underwent intensive ST were examined. Dysarthria was evaluated using the Scale for Assessment and Rating of Ataxia Speech Dysfunction, Assessment of Motor Speech for Dysarthria Articulation, oral diadochokinesis (OD), and Voice Handicap Index-10 (VHI-10). Respiratory muscle strength (inspiratory and expiratory pressure) and respiratory-phonatory coordination (maximum phonation time) were measured. Cognitive function was evaluated using the Montreal Cognitive Assessment and the word fluency test. Mood was evaluated using the Hospital Anxiety and Depression Scale. The relationships between dysarthria scales (particularly, VHI-10) and clinical data were analyzed using stepwise regression. The differences in outcomes after intensive ST were analyzed using the Wilcoxon signed-rank test. The alpha level (p) for statistical significance was set at .0125 by Bonferroni correction. Results: For both pre- and post-ST, the patient's OD (p = .002) and maximum phonation time (p = .002) significantly improved, except for Speech Dysfunction scores of the Scale for Assessment and Rating of Ataxia (p = .705) and the VHI-10 (p = .018). The Assessment of Motor Speech for Dysarthria Articulation, OD, and inspiratory pressure were identified as independent variables of VHI-10 (adjusted [R.sup.2] = .820) for speech-related quality of life; no correlations among the Montreal Cognitive Assessment, word fluency test, and Hospital Anxiety and Depression Scale scores were observed. Conclusion: OD and VHI-10 showed improvements due to changes in speech function and respiratory-phonatory coordination, justifying intensive ST treatment for dysarthria in patients with SCD., Spinocerebellar degeneration (SCD) refers to a group of sporadic and hereditary neurodegenerative diseases characterized by lesions in the cerebellum and/or spinal cord. Roughly 30% of SCD cases are hereditary, mostly [...]

Introduction The quality of the mother-child relationship in the first year of life has far reaching implications across the life course (Bornstein in Annu Rev Psychol 65:121-158, 2014 (See CR13)). Yet little is known about predictors of maternal bonding and emotional availability in early infancy. In this study we examined the extent to which postnatal bonding, maternal mental health, and substance use at 8-weeks postpartum predicted mother-infant bonding (self-report) and mother emotional availability (observational) at 12-months of age. Methods Data were obtained from an Australian longitudinal cohort study of pregnancy (n = 308). Data were collected during pregnancy, at birth, and postnatally at 8-weeks and 12-months. Results The results show strong continuity between postnatal bonding at 8-weeks and 12-months. Early postpartum stress and depression were associated with bonding at 12-months; however, the effect did not persist after adjustment for bonding at 8-weeks. Tobacco use at 8-weeks, but no other indicators of mental health, predicted lower emotional availability scores at 12-months. Discussion Results suggest that the mother's felt bond to her child is stable across the first year of life and that early bonding is a more robust indicator of bonding at 12-months than a mother's mental health or substance use. These findings point to the importance of clinical and public health investments in establishing a strong bond between mother and child in the early postpartum period., Author(s): Larissa Rossen [sup.1] , Richard P. Mattick [sup.1] , Judy Wilson [sup.1] , Philip J. Clare [sup.1] , Lucinda Burns [sup.1] , Steve Allsop [sup.2] , Elizabeth J. Elliott [...]

Introduction The cardinal symptom of pulmonary hypertension (PH) is dyspnea on exertion, leading to decreased activity in daily living. The aim of this study was to analyze daily physical activity in incident patients with arterial or chronic thromboembolic PH (PAH/CTEPH) and to investigate its correlation with pulmonary hemodynamics, symptoms, exercise capacity, and other outcomes. Methods Incident patients with PAH/CTEPH had a 1-week activity assessment by the arm-worn accelerometer SenseWear within - 3 months/+ 2 weeks of the diagnostic right heart catheterization (RHC) and baseline assessments including 6-minute walking distance (6MWD). Activity was correlated to RHC data at rest and exercise and to other outcomes. Results Thirty-nine PH-patients (24 PAH, 15 CTEPH, 23 females, 65(54;73) years, mean pulmonary artery pressure (mPAP) 38(30;46) mmHg, cardiac output (CO) 5.2(4.6;6.3) l/min, 6MWD 458(300;593) m) were included. 64% had a sedentary lifestyle ( < 5000 steps/day), 26% were moderately active (5000-9999 steps/day), and 10% were active. In a multivariate stepwise regression analysis including age, gender, 6MWD and hemodynamics at rest and during exercise (heart rate, mPAP, stroke volume), the 6MWD was the only independent predictor of steps/day (B = 16.8 (95% CI 11.6-22.0), p < 0.001). Conclusion Daily physical activity as steps/day assessed in incident patients with PAH/CTEPH did not well correlate with invasive hemodynamics at rest or during exercise, but very well with the 6MWD. Whether daily activity assessments provide additional information to simple walk distance on risk factor profiles during follow-up in patients with PAH/CTEPH remains to be clarified., Author(s): Stéphanie Saxer [sup.1] [sup.2] , Mona Lichtblau [sup.1] , Charlotte Berlier [sup.1] , Elisabeth D. Hasler [sup.1] , Esther I. Schwarz [sup.1] , Silvia Ulrich [sup.1] Author Affiliations: (Aff1) [...]

A course of action often suggested in an attempt to improve employment outcomes of adults with autism spectrum disorder, is to match between special interests and job opportunities. In this commentary, we propose that the match may be more complicated than it seems, possibly overseeing more pressing employment needs that should be answered such as: the job's characteristics, labor market demands, and stress resulting from job expectations. Self determination theory of motivation is suggested as a lens through which the association between special interests and a paying job can be examined, highlighting important considerations that hold the potential to increase employment success. Recommendations for new research directions and vocational rehabilitation practice are discussed., Author(s): Yael Goldfarb [sup.1] , Eynat Gal [sup.1] , Ofer Golan [sup.2] Author Affiliations: (Aff1) 0000 0004 1937 0562, grid.18098.38, Department of Occupational Therapy, University of Haifa, , Haifa, Israel [...]

The goal of this study was to examine caregiver agreement to hear about local research opportunities by joining a clinical research registry. Data from this cross-sectional study were gathered, between 2014 and 2017, across two outpatient clinics: (1) a multidisciplinary Autism Spectrum Disorder (ASD) clinic (N = 5228) and (2) a general psychology clinic serving youth with, or at risk for, a neurodevelopmental disorder (NDD; N = 5040). Overall, more than 8 in 10 caregivers agreed to join the registry. Several child clinical characteristics, as well as racial and sociodemographic factors, were predictive of parental agreement. Findings suggest caregivers of youth with ASD and NDD are amenable to joining the local research enterprise, however further work is needed to understand why some caregivers decline., Author(s): L. Kalb [sup.1] [sup.2] [sup.4] , L. Jacobson [sup.1] [sup.3] , C. Zisman [sup.1] , E. Mahone [sup.1] [sup.3] , R. Landa [sup.2] [sup.3] , G. Azad [sup.2] [sup.4] [...]

A randomized, 13-weeks, placebo-controlled double-blind study in 125 subjects aged 2-17.5 years with Autism Spectrum Disorder or Smith-Magenis syndrome and insomnia demonstrated efficacy and safety of easily-swallowed prolonged-release melatonin mini-tablets (PedPRM; 2-5 mg) in improving sleep duration and onset. Treatment effects on child behavior and caregiver's quality of life were evaluated. PedPRM treatment resulted in significant improvement in externalizing but not internalizing behavior (Strengths and Difficulties questionnaire; SDQ) compared to placebo (p = 0.021) with clinically-relevant improvements in 53.7% of PedPRM-treated versus 27.6% of placebo-treated subjects (p = 0.008). Caregivers' quality of life also improved with PedPRM versus placebo (p = 0.010) and correlated with the change in total SDQ (p = 0.0005). PedPRM alleviates insomnia-related difficulties, particularly externalizing behavior in the children, subsequently improving caregivers' quality of life., Author(s): Carmen M. Schroder [sup.1] [sup.2] , Beth A. Malow [sup.3] , Athanasios Maras [sup.4] , Raun D. Melmed [sup.5] , Robert L. Findling [sup.6] , John Breddy [sup.7] , [...]

Purpose Bronchial Thermoplasty (BT) is indicated in patients suffering from severe and symptomatic bronchial asthma despite maximal medical therapy. However, treatment of the right middle lobe (RML) bronchus is currently not recommended. The aim of this study was to investigate the safety and efficacy of BT if the RML bronchus is included. Methods BT was performed in 17 consecutive patients, quality of life and pulmonary function were characterized before and 90 days after BT completion. Furthermore, we performed a clean-up bronchoscopy following every BT. This study was approved by the IRB of the University of Essen (No. 17-7356 BO) and registered as a retrospective observational study at the German Clinical Trials Registry (No. DRKS 00011550). Results The median baseline values of FEV1 and Asthma Questionnaire of Life Quality (AQLQ) were 1.33 l (0.91; 1.73) and 3.01 (2.76; 3.61), respectively, and significantly improved 90 days after treatment with FEV 1 at 1.75 l (p-value 0.002) and AQLQ 3.8 (p-value < 0.05). Also the amount of oral corticosteroid necessity decreased significantly. No severe adverse events occurred due to the procedure. Clean-up bronchoscopies-when performed-revealed significant fibrinous exudation after every BT procedure. Conclusion BT including the RML bronchus is feasible. Functionally limited patients with severe asthma could potentially profit. Due to the relevant fibrinous exudation, BT should be followed by clean-up bronchoscopy, not only after RML treatment., Author(s): Stephan Eisenmann [sup.1] [sup.2] , Wolfgang Schütte [sup.3] , Faustina Funke [sup.1] , Filiz Oezkan [sup.1] , Shaheen Islam [sup.4] , Kaid Darwiche [sup.1] Author Affiliations: (Aff1) Interventional Pneumology, [...]

Introduction Exercise-induced bronchoconstriction (EIB) is very common in athletes. Cardiopulmonary exercise tests (CPET) have traditionally been used for the diagnosis of EIB. However, alternative indirect bronchoprovocation tests have recently been used as surrogate tests. One of these is the eucapnic voluntary hyperventilation (EVH). This meta-analysis studied the agreement between the two tests. Methods An extensive search in PubMed and Medline was conducted for studies where participants underwent both CPET and EVH with measurement of forced expiratory volume in 1-second (FEV.sub.1). After extracting data using two-by-two contingency tables, pooled positive and negative agreements were first calculated between the two tests, with EVH benchmarked against CPET, and then, pooled positive and negative agreements were calculated with CPET benchmarked against EVH. Results The pooled positive and negative agreements between EVH and CPET (with CPET as the reference) were 0.62 [(95% confidence interval 0.54-0.70), I.sup.2 77%] and 0.61 [(0.56-0.65)), I.sup.2 81%]. The pooled positive and negative agreements between CPET and EVH (with EVH as the reference) were 0.36 [(0.30-0.42), I.sup.2 93%] and 0.82 [(0.77-0.86), I.sup.2 78%]. The average of positive test results with EVH across all studies was greater than that of CPETs (58.84% vs. 39.51%). Conclusions Results of this meta-analysis show poor positive agreement between the two tests but high negative agreement (specifically using EVH as reference), suggesting that either test can be used for correctly identifying those without EIB. Results also suggest that the chances of a test resulting positive are higher with EVH than with CPET., Author(s): Imran H. Iftikhar [sup.1] , Meredith Greer [sup.1] , Ahmadu Jaiteh [sup.1] Author Affiliations: (Aff1) 0000 0001 0941 6502, grid.189967.8, Division of Pulmonary, Allergy, Critical Care & Sleep Medicine, [...]

Recent research showed group B patients express higher mortality compared to group C patients when GOLD A-D grouping is used. We aimed to compare the prognostic accuracy of three GOLD classification systems, I-IV ('pre-2011'), A-D ('2011-2016') and A-D ('2017-present') in relation to mortality, exacerbation risk, quality of life (QoL) assessment and specific treatments use in a real-life COPD cohort. We used the data of 720 patients from the Czech Multicenter Research Database of COPD. Four-year mortality and time-to-exacerbation using the GOLD 'pre-2011', '2011-2016' and '2017-present' classification schemes were assessed. Moreover, distribution of specific treatments use and QoL measures were analyzed. The GOLD I-IV classification system showed gradual increase in 4-year mortality across the stages (GOLD II 18.8%, III 28.5%, IV 38.7%) (p = 0.001). Using the A-D '2011-2016' classification scheme, group C patients had lower mortality (16.7%) than group B (18.7%) (p = 0.009). The A-D '2017-present' classification showed higher mortality in group B (25.5%) compared to group C (20%) (p = 0.05). For additional outcomes, the GOLD I-IV scheme showed highest match between the calculated 4-year exacerbation risk and QoL measures and GOLD stage/grouping. In terms of specific treatment distributions, various patterns for each GOLD classification system were observed with best match of GOLD '2017-present' system to the layout of GOLD groups and categories. We conclude the GOLD I-IV classification system had the highest accuracy related to mortality, QoL measures and exacerbation risk prediction, while the A-D '2017-present' scheme was most accurate within severity of symptoms prediction reflected also by more frequent specific treatments use., Author(s): Marek Plutinsky [sup.1] , Kristian Brat [sup.1] , Michal Svoboda [sup.2] , Jaromir Zatloukal [sup.3] , Patrice Popelkova [sup.4] , Vladimir Koblizek [sup.5] Author Affiliations: (Aff1) 0000 0001 2194 [...]

Purpose The clinical manifestations of sarcoidosis vary widely, depending on the intensity of the inflammation and the organ systems affected. Hence, sarcoidosis patients may suffer from a great variety of symptoms. The aim of this study was to compare the self-reported burden of sarcoidosis patients in Denmark, Germany and the Netherlands, especially the prevalence of fatigue and small fiber neuropathy (SFN)-related symptoms, as well as differences in treatment strategies. Methods A cross-sectional web-based anonymous survey about complaints was conducted among sarcoidosis patients. Patients were invited to take part through the sarcoidosis patient societies as well as through outpatient sarcoidosis clinics in these countries. Results The questionnaire was completed by 1072 sarcoidosis patients (152 Danish, 532 German and 388 Dutch). Almost all patients reported having sarcoidosis-associated symptoms (organ-related as well as non-specific, non-organ related). Fatigue was reported by almost all respondents (90%), followed by pulmonary symptoms (72.4%). More than 50% of the respondents were being treated with prednisone, which was comparable in all three countries. In contrast, second- and third-line treatment differed substantially between Denmark, Germany and the Netherlands. Conclusion Sarcoidosis patients in Denmark, Germany and the Netherlands present with similar self-reported symptoms, organ-related as well as non-specific, non-organ related. Fatigue (90%) and symptoms associated with SFN (86%) were highly prevalent in all three countries., Author(s): M. Voortman [sup.1] [sup.2] [sup.3] , C. M. R. Hendriks [sup.1] [sup.3] [sup.4] , M. D. P. Elfferich [sup.3] , F. Bonella [sup.5] , J. Møller [sup.6] , J. [...]

Introduction: Multiple comorbidities among HIV-positive individuals may increase the potential for polypharmacy causing drug-to-drug interactions and older individuals with comorbidities, particularly those with cognitive impairment, may have difficulty in adhering to complex medications. However, the effects of age-associated comorbidities on the treatment outcomes of combination antiretroviral therapy (cART) are not well known. In this study, we investigated the effects of age-associated comorbidities on therapeutic outcomes of cART in HIV-positive adults in Asian countries. Methods: Patients enrolled in the TREAT Asia HIV Observational Database cohort and on cART for more than six months were analysed. Comorbidities included hypertension, diabetes, dyslipidaemia and impaired renal function. Treatment outcomes of patients [greater than or equal to]50 years of age with comorbidities were compared with those Results: The incidence of virologic failure was 7.72/100 person-years. Virological failure was less likely in patients with better adherence and higher CD4 count at cART initiation. Those acquiring HIV through intravenous drug use were more likely to have virological failure compared to those infected through heterosexual contact. On univariate analysis, patients aged Conclusions: In our Asia regional cohort, age-associated comorbidities did not affect virologic outcomes of cART. Among those with comorbidities, patients Keywords: HIV; cART; age-associated comorbidity; immunological failure; virological failure; TAHOD (TREAT Asia HIV Observational Database), 1 | INTRODUCTION Combination antiretroviral therapy (cART) has dramatically improved the survival and quality of life for people living with HIV [1-3]. A growing proportion of patients are over the [...]

This study used an online survey to examine mental health professionals' awareness of and experiences with persons with aphasia (PWA) and professionals' confidence in treating depression in persons with aphasia. Although the majority of respondents were familiar with aphasia and understood it to be a type of communication disorders, only about half also indicated experience treating persons with aphasia. Further, nearly half reported little or no confidence in providing services to this population. Level of education and years of experience were associated with greater confidence. The results guide future research and training to improve service provision and thus quality of life for persons with aphasia. Keywords: aphasia, counseling, psychosocial, stroke, The ability to communicate is essential in today's world, and it can be accomplished through a variety of means including spoken words, written words, gestures, prosody of speech, and facial [...]

Earnings of people with intellectual and developmental disability (IDD) in a labor market can be a useful indicator of the quality of employment, economic mobility, and the quality of life of people with disabilities. To develop a more complete picture of employment outcomes for people with disabilities, weekly wage was examined applying quantile regression technique. Rehabilitation Services Administration Case Service Report (RSA-911) data from FY 2014 was used for both Ordinary Least Square (OLS) and quantile regression analyses. Quantile regression technique allows us to analyze a set of exploratory variables at different quantiles of the weekly wage distribution in comparison with OLS estimation. Results suggest that the income disparity is significant, particularly at more extreme ends of quantiles, which is the lower or higher weekly wage distribution. Findings indicated that males earned more than females, individuals with no significant disability earned more than individuals with the most significant disability, individuals whose primary source of financial support is public support or family/friends/other support earned less of their own income, and people with cerebral palsy or epilepsy earned more, and people with multiple-disabilities earned less than people with IDD. Moreover, the results indicate that the quantile regression estimates of demographics, disability types, significant disability status, and primary sources of financial support show different patterns of changes and consistent upward or downward trends across quantiles of weekly wage distribution in comparison with the OLS estimates. This study provides additional insight into the importance of understanding earnings and the variability that may be able to be addressed by targeted approaches by rehabilitation professionals and policymakers. Key Words: weekly earnings, employment outcome, intellectual and developmental disabilities (IDD), quantile regression, RSA-911, Over the last decade, policy shifts have placed increased attention on integrated employment of people with disabilities. Yet despite various policies, directives, and legislation, people with disabilities continue to face [...]

The link between happiness and overall inequality is best studied using an index that incorporates different aspects of inequality, and is measured consistently in different countries. One such index is the degree to which happiness itself varies among individuals. Its correlation with both happiness levels and social trust is substantially stronger than the corresponding correlation for income inequality. This remains so after allowing for bounded scale reporting, including a purely ordinal measure of dispersion. Moreover, the correlation is stronger for individuals who profess to care most about inequality. The link between happiness and inequality may thus be stronger than previously appreciated. (JEL I31, D6, D63, D31), I. INTRODUCTION Current research into the impact of inequality on happiness is focused on income inequality, typically using the Gini coefficient of income as a proxy for the level of [...]

We searched the Cochrane Central Register of Controlled Trials to provide an overview of evidence from randomized controlled trials (RCTs) of therapeutic interventions for autism spectrum disorders. From the final survey (529 RCTs), the mean size was 49 participants (standard deviation 50, range 1-479, median 36, mode 40), with a sharp increase in the number of RCTs from 2008. The most frequently evaluated intervention was antipsychotic treatment (n = 44, 3006 participants). The journal with the most RCTs was the Journal of Autism and Developmental Disorders (N = 104). Most trials were small in size, emphasising the need for research groups to collaborate to generate higher quality data with greater applicability to clinical practice., Author(s): Samuel Tromans [sup.1] [sup.2] , Clive Adams [sup.3] Author Affiliations: (Aff1) grid.420868.0, Psychiatry of Intellectual Disability, Agnes Unit, Leicestershire Partnership NHS Trust, , Leicester, UK (Aff2) 0000 0004 1936 [...]

Research suggests that individuals with autism spectrum disorder (ASD) have significant difficulties with adaptive behavior skills including daily living and functional communication skills. Few studies have examined the developmental trajectory of adaptive behavior across childhood and adolescence. The present study examined longitudinal trajectories of adaptive behavior in a community-based clinic sample of 186 individuals with ASD. The overall pattern indicated an initial increase in adaptive behavior during early childhood followed by a plateau in skills during adolescence for individuals of all IQ groups. Given the importance of adaptive behavior for employment and quality of life, this study emphasizes the importance of targeting adaptive behavior during adolescence to insure continued gains., Author(s): Allison T. Meyer [sup.1] [sup.6] , Patrick S. Powell [sup.2] , Nicole Butera [sup.3] , Mark R. Klinger [sup.4] , Laura G. Klinger [sup.5] Author Affiliations: (Aff1) 0000000122483208, grid.10698.36, [...]

Author(s): Evelien Snauwaert [sup.1] , Wim Van Biesen [sup.2] , Ann Raes [sup.3] , Griet Glorieux [sup.2] , Raymond Vanholder [sup.2] , Johan Vande Walle [sup.3] , Sunny Eloot [sup.2] [...]

Children with autism experience challenges with emotion regulation. It is unclear how children's management of their emotions is associated with their family's quality of life. Forty-three preschoolers with autism and 28 typically developing preschoolers were coded on emotion regulation strategies used during low-level stress tasks. Parents reported on their quality of life and family functioning, and their child's internalizing and externalizing behaviors. More externalizing behaviors across groups and use of two emotion regulation strategies (self-soothing, deep exhalation) in the autism group predicted lower family quality of life. Findings suggest that children's emotional outbursts and reduced use of passive comforting strategies are linked to lower family quality of life., Author(s): Heather Joy Nuske [sup.1] [sup.2] , Darren Hedley [sup.2] , Chen Hsiang Tseng [sup.3] , Sander Begeer [sup.4] , Cheryl Dissanayake [sup.2] Author Affiliations: (Aff1) 0000 0004 1936 8972, [...]

Introduction I. Homelessness, Public Property, and Quality-of-Life Rules II. The Structure of Quality-of-Life Rules That Regulate Need-Alleviation III. Affirmative Duties to Alleviate One's Needs in Private Versus Traditional Affirmative Duties [...], Many legal theorists have examined the ways in which homeless people are--and can be--regulated differently than people with homes. Previously applied legal theories have invaluably contributed to understanding how quality-of-life offences disproportionately impact homeless people&apos;s negative freedom or violate their constitutional rights. Despite this, they have certain shortcomings in that they fail to address the harm to homeless people&apos;s freedom from potential interference, rather than just actual interference, and the state&apos;s capacity to enact rules that disproportionately impact those without access to housing. This article argues that the republican theory of freedom (or republicanism) demonstrates how and why quality-of-life offences undermine homeless people&apos;s freedom but does so in ways that address those shortcomings. Applying Philip Pettit&apos;s republican theory of freedom as non-domination, the author argues that existing theoretical accounts, which are concerned with actual interference experienced by homeless people, fail to capture the risk of potential non-egalitarian interference when attempting to lawfully alleviate their needs in private. This risk can lead to homeless people abandoning their preferences, altering their pursuits, or being deferential towards others in order to avoid interference. Consistent with this theory of freedom, the author argues that homeless people who adopt these coping mechanisms to avoid actual interference are not meaningfully free and, furthermore, that the types of non-egalitarian trade-offs that homeless people must make to obey quality-of-life rules suggests that their freedom is undermined in ways ignored by negative freedom and constitutional theories. The author argues that while theorists recognise that quality-of-life offences may disproportionately affect homeless people because they live in public, they rarely address the non-egalitarian implications of the state&apos;s greater capacity to regulate how homeless people alleviate their needs without the privacy of a home. Republicanism thus offers insight into how public authority&apos;s greater capacity to regulate common property and protect its value raises important egalitarianism concerns for those who have no private place to live.

A disease registry uses observational study methods to collect defined data on patients with a particular condition for a predetermined purpose. By providing comprehensive standardised data on patients with kidney disease, renal registries aim to provide a 'real world' representation of practice patterns, treatment and patient outcomes that may not be captured accurately by other methods, including randomised controlled trials. Additionally, using registries to measure variations in outcomes and audit care against standards is crucial to understanding how to improve quality of care for patients in an efficacious and cost-effective manner. Registries also have the potential to be a powerful scientific tool that can monitor and support the translational process between research and routine clinical practice, although their limitations must be borne in mind. In this review, we describe the role of the UK Renal Registry as a tool to support translational research. We describe its involvement across each stage of the translational pathway: from hypothesis generation, study design and data collection, to reporting of long-term outcomes and quality improvement initiatives. Furthermore we explore how this role may bring about improvements in care for adults and children with kidney disease., Author(s): Lucy A. Plumb [sup.1] [sup.2] , Alexander J. Hamilton [sup.1] [sup.2] , Carol D. Inward [sup.3] , Yoav Ben-Shlomo [sup.1] [sup.2] , Fergus J. Caskey [sup.1] [sup.2] [sup.4] Author [...]

A process evaluation was conducted to determine the effectiveness, usability, and barriers and facilitators related to the Better OutcOmes & Successful Transitions for Autism (BOOST-A[TM]), an online transition planning program. Adolescents on the autism spectrum (n = 33) and their parents (n = 39) provided feedback via an online questionnaire. Of these, 13 participants were interviewed to gain in-depth information about their experiences. Data were analyzed using descriptive statistics and thematic analysis. Four themes were identified: (i) taking action to overcome inertia, (ii) new insights that led to clear plans for the future, (iii) adolescent empowerment through strengths focus, and (iv) having a champion to guide the way. The process evaluation revealed why BOOST-A[TM] was beneficial to some participants more than others. Trial registration #ACTRN12615000119594, Author(s): Megan Hatfield [sup.1] [sup.2] , Marita Falkmer [sup.1] [sup.2] [sup.3] , Torbjörn Falkmer [sup.1] [sup.2] [sup.4] , Marina Ciccarelli [sup.1] [sup.2] Author Affiliations: (1) School of Occupational Therapy and [...]

Background Chronic kidney disease (CKD) in childhood is characterised by the accumulation of uraemic toxins resulting in a multisystem disorder that has a negative impact on quality of life. Childhood CKD is predominantly defined by a decrease in glomerular filtration rate, estimated (eGFR) by a single serum measurement of endogenous biomarkers, e.g. creatinine. The objective of this study was to evaluate how accurately eGFR predicts the concentration of uraemic toxins in a paediatric CKD cohort. Methods In 65 children (10.8 [5.1; 14.7] years) with CKD (eGFR 44 [20; 64] mL/min/1.73 m.sup.2), serum concentrations were determined of small solutes (uric acid [UA], urea, symmetric dimethylarginine [SDMA], asymmetric dimethylarginine [ADMA]), middle molecules ([beta]2-microglobulin [[beta]2M], complement factor D [CfD]) and protein-bound solutes (p-cresylglucuronide [pCG], hippuric acid, indole acetic acid, indoxyl sulphate [IxS], p-cresylsulfate [pCS] and 3-carboxy-4-methyl-5-propyl-furanpropionic acid [CMPF]). Spearman's correlation coefficients (r) were calculated to correlate uraemic toxin concentrations with three different eGFR equations, based on either serum creatinine or [beta]2M. Results Updated Schwartz eGFR was correlated reasonably well with concentrations of creatinine (r = -0.98), urea (r.sub.s = -0.84), SDMA (r = -0.82) and middle molecules CfD and [beta]2M (both r.sub.s = -0.90). In contrast, poor correlation coefficients were found for CMPF (r.sub.s = -0.32), UA (r.sub.s = -0.45), ADMA (r.sub.s = -0.47) and pCG (r.sub.s = -0.48). The other toxins, all protein-bound, had r.sub.s between -0.75 and -0.57. Comparable correlations were found between the three evaluated eGFR equations and uraemic toxin concentrations. Conclusions This study demonstrates that eGFR poorly predicts concentrations of protein-bound uraemic toxins, UA and ADMA in childhood CKD. Therefore, eGFR only partially reflects the complexity of the accumulation pattern of uraemic toxins in childhood CKD., Author(s): Evelien Snauwaert [sup.1] , Wim Van Biesen [sup.2] , Ann Raes [sup.3] , Els Holvoet [sup.2] , Griet Glorieux [sup.2] , Koen Van Hoeck [sup.4] , Maria Van Dyck [...]

Background Darbepoetin alfa is a commonly prescribed erythropoiesis-stimulating agent (ESA) for correcting anemia in pediatric chronic kidney disease (CKD) patients. However, little information exists on its use in ESA-naïve patients. This study evaluated the efficacy and safety of darbepoetin alfa in pediatric patients initiating ESA therapy. Methods One-hundred sixteen pediatric ESA-naïve subjects (aged 1-18 years) with CKD stages 3-5D and hemoglobin (Hb) Results In both groups, mean Hb concentrations increased to [greater than or equal to]11.0 g/dl over the first 3 months of treatment and remained stable within the 10.0-12.0 g/dl target range. The median time to achieve hemoglobin [greater than or equal to]10 g/dl was slightly longer for subjects Conclusions Darbepoetin alfa can be safely administered either QW or Q2W to ESA-naïve pediatric patients with CKD-related anemia to achieve Hb targets of 10.0-12.0 g/dl., Author(s): Bradley A. Warady [sup.1] , John Barcia [sup.2] , Nadine Benador [sup.3] , Augustina Jankauskiene [sup.4] , Kurt Olson [sup.5] , Ludmila Podracka [sup.6] , Aleksey Shavkin [sup.7] , [...]

Background Growth retardation and its impact on adult height is considered to be one of the most common complications in patients with chronic kidney disease (CKD). Treatment with recombinant human growth hormone (rhGH) has been effective in improving growth in kidney transplantation (KTx) patients, but little data are available on adult height in patients who began rhGh treatment in late puberty. Methods Near-adult height was evaluated in 13 KTx patients treated with rhGH [growth hormone group (GHGr); dose 9.33 mg/m.sup.2 per week] for a period of at least 18 months. At initiation of rhGH treatment, testicular volume was >8 ml and serum testosterone was >1 ng/ml compared with the control group (CGr) of ten KTx patients who did not receive rHGH. All subjects were of similar chronological age and bone age and had similar creatinine clearance (CrCl) levels, cumulative corticoid dose, height standard deviation score (SDS), target height SDS, and target height:initial height at the beginning of the study. Results Near-adult height was significantly greater in the GHGr than in the CGr (-1.8 ± 0.8 vs. -2.9 ± 1.1; p = 0.018). The difference between initial height and near-adult height in the GHGr revealed a significant height gain (initial height -3.1 ± 1.1; near-adult height -1.8 ± 0.8 SDS, respectively; delta 1.2 ± 0.3; p = 0.021). The CrCl level was not significantly different between the GHGr and CGr at either at study initiation or when attaining near-adult height (p = 0.74 and p = 0.23, respectively). Conclusions Treatment with rhGH was effective in improving adult height in KTx patients who began treatment in late puberty, without any effect on renal function., Author(s): Silvia Gil [sup.1] , Mariana Aziz [sup.1] , Marta Adragna [sup.2] , Marta Monteverde [sup.2] , Alicia Belgorosky [sup.1] [sup.3] Author Affiliations: (1) Department of Endocrinology, Hospital Nacional de [...]

Well-being, Disability, and Choosing Children, MATTHEW J. BARKER and ROBERT A. WILSON The view that it is better for life to be created free from disability is pervasive in both [...]

Four years after the Revolution of Dignity, the Ukrainian society is passing through multiple parallel transitions. More often than not, the problematique of Ukraine is framed as a discussion of the speed and extent of reforms' adoption. This article highlights the need to look in a more organic, interrelated manner, with attention to the sociospatial context that embeds all of the potential institutional change targeted by reforms. Using interviews and group discussions with public servants and civil society actors actively involved in the ongoing reform processes, this article zooms out from the rather fragmented reforms discussion to embed it in a broader societal context. It highlights crucial developments in the four quadrants of the social quality debate: the socioeconomic, the sociopolitical, the sociocultural/welfare, and the socioenvironmental dimension of societal life in postrevolution Ukraine. Keywords: reforms, 'the social,' social quality, societal embedding, transition, Ukraine, Background: The Society 'Under Reform' Four years ago, mass protests were in full range in Ukraine, with demonstratofs demanding a better society. Beyond the call for dignified conditions of life [...]

This article explores the development of appropriate conceptualizations of public health, and, more importantly, adequate practices and methodologies to be applied in today's societal context. Popular concepts like 'positive health,' 'comprehensive approaches,' and 'participation' represent only specific components of larger complexities. My intention is to come up with useful notions for a more holistic comprehension of public health. First, two strands of reasoning, on which my argument is based, are discussed: (1) interpretations regarding major public health discourses of the past two centuries; (2) critical appraisal of influential societal tendencies (to be able to identify what today is 'appropriate'). Then, based on these interpretations, notions are developed regarding ontological, epistemological, and societal aspects of public health. This leads us to the discussion of adequate methodologies for today's practice of public health. I argue that emancipated participation of citizen communities--organized as cooperatives--ought to be a cornerstone in elaborations of contemporary public health. Keywords: agora, comprehensiveness, cooperatives, epistemology, ontology, participation, public health, social quality, 'Positive health,' 'comprehensive approaches,' and 'participation' have become popular concepts in today's theoretical public health discourse. Each of these emphasizes a specific component of complex public health issues, which are [...]

This study examined vocational/educational disruption in the 2-3 years after high school for 36 youth with autism spectrum disorder (ASD). Data were collected three times from parents: during youth's last year of high school and two times after high school exit. Data were coded into categories indicating any versus no disruptions in postsecondary vocation/education, and group differences in individual (behavior problems, IQ, adaptive behavior, autism severity, stress reactivity) and family (parent depression, anxiety, quality of life; family income and climate) factors were examined. One-half of youth had experienced a postsecondary vocational/educational disruption; parents of those with a disruption had more depressive and anxiety symptoms and lower quality of life while their son/daughter was still in high school., Author(s): Julie Lounds Taylor [sup.1] [sup.2] , Leann Smith DaWalt [sup.3] Author Affiliations: (1) Department of Pediatrics, Vanderbilt University Medical Center, 0000 0004 1936 9916, grid.412807.8, , Nashville, TN, USA [...]

Introduction of the so-called biocompatible peritoneal dialysis (PD) fluids was based on a large body of experimental evidence and various clinical trials suggesting important clinical benefits. Of these, until now, only preservation of residual renal function-likely due to lower glucose degradation product load and, in case of icodextrin, improved fluid and blood pressure control-have consistently been proven, whereas the impact on important clinical endpoints such as infectious complications, preservation of PD membrane transport function, and patient outcome, are still debated. In view of the high morbidity and mortality rates of PD patients, novel approaches are warranted and comprise the search for alternative osmotic agents and enrichment of PD fluids with specific pharmacologic agents, such as alanyl-glutamine, potentially counteracting local but also systemic sequelae of uremia and PD., Author(s): Claus Peter Schmitt [sup.1] , Christoph Aufricht [sup.2] Author Affiliations: (1) Pediatric Nephrology, Center for Pediatric and Adolescent Medicine, Im Neuenheimer Feld 430, 69120, Heidelberg, Germany (2) Division of [...]

Objectives To assess the associations of perceived financial satisfaction and health-related quality of life (HRQoL) and depressive symptoms in an unselected pregnant population in early pregnancy. Methods 750 consecutive pregnant women attending the first communal ultrasound examination before gestational week 14 were invited to participate. Questionnaires assessing HRQoL (15D), depressive symptoms (Edinburgh Depression Scale, EPDS), medical, obstetric, and socioeconomic status were handed out. The participants were divided into three groups according to their satisfaction with their financial status, (unsatisfied, somewhat satisfied, and satisfied). Main outcome measures were 15D and EPDS-scores and dimensions of HRQoL. Results 325 (43,3%) questionnaires were returned. The mean 15D-score for HRQoL was 0,926 (SD 0,056). The financially unsatisfied women had lower HRQoL than women in more satisfied groups (0.906, 0.923 and 0.931, p = 0.012). The result remained significant, even after adjusting for age and education(p = 0.032). The unsatisfied women had a higher mean body mass index (BMI) (25.4, 24.4 and 23.2 kg/m.sup.2, p for linearity = 0.002), were more often smokers, (13 vs. 4 and 3%, p = 0.029), and had experienced at least one abortion (18, 14 and 7%, p = 0.017). Dimensions of depression, distress and sleep explained the differences between the groups. 27% of unsatisfied women scored EPDS [greater than or equal to]10 points suggesting increased risk of depression. Conclusions Financial satisfaction in early pregnancy associates with HRQoL and risk of perinatal depressive symptoms. Unsatisfied women more often have risk factors for unfavourable pregnancy outcomes which may influence the later health and wellbeing of the mother and child., Author(s): Niina Sahrakorpi [sup.1] [sup.7] , Saila B. Koivusalo [sup.1] [sup.7] , Johan G. Eriksson [sup.2] [sup.3] , Hannu Kautiainen [sup.2] , Beata Stach-Lempinen [sup.4] , Risto P. Roine [sup.5] [...]