Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

Does Treewidth Help in Modal Satisfiability?

Many tractable algorithms for solving the Constraint Satisfaction Problem (CSP) have been developed using the notion of the treewidth of some graph derived from the input CSP instance. In particular, the incidence graph of the CSP instance is one such graph. We introduce the notion of an incidence graph for modal logic formulae in a certain normal form. We investigate the parameterized complexity of modal satisfiability with the modal depth of the formula and the treewidth of the incidence graph as parameters. For various combinations of Euclidean, reflexive, symmetric and transitive models, we show either that modal satisfiability is FPT, or that it is W[1]-hard. In particular, modal satisfiability in general models is FPT, while it is W[1]-hard in transitive models. As might be expected, modal satisfiability in transitive and Euclidean models is FPT.Comment: Full version of the paper appearing in MFCS 2010. Change from v1: improved section 5 to avoid exponential blow-up in formula siz

Propositional Dynamic Logic for Message-Passing Systems

We examine a bidirectional propositional dynamic logic (PDL) for finite and infinite message sequence charts (MSCs) extending LTL and TLC-. By this kind of multi-modal logic we can express properties both in the entire future and in the past of an event. Path expressions strengthen the classical until operator of temporal logic. For every formula defining an MSC language, we construct a communicating finite-state machine (CFM) accepting the same language. The CFM obtained has size exponential in the size of the formula. This synthesis problem is solved in full generality, i.e., also for MSCs with unbounded channels. The model checking problem for CFMs and HMSCs turns out to be in PSPACE for existentially bounded MSCs. Finally, we show that, for PDL with intersection, the semantics of a formula cannot be captured by a CFM anymore

Value of systolic pulmonary arterial pressure as a prognostic factor of death in the systemic sclerosis EUSTAR population.

The aim of this study was to assess the prognostic value of systolic pulmonary artery pressure (sPAP) estimated by echocardiography in the multinational European League Against Rheumatism Scleroderma Trial and Research (EUSTAR) cohort.Data for patients with echocardiography documented between 1 January 2005 and 31 December 2011 were extracted from the EUSTAR database. Stepwise forward multivariable statistical Cox pulmonary hypertension analysis was used to examine the independent effect on survival of selected variables.Based on our selection criteria, 1476 patients were included in the analysis; 87\% of patients were female, with a mean age of 56.3 years (s.d. 13.5) and 31\% had diffuse SSc. The mean duration of follow-up was 2.0 years (s.d. 1.2, median 1.9). Taking index sPAP of 50 mmHg. In a multivariable Cox model, sPAP and the diffusing capacity for carbon monoxide (DLCO) were independently associated with the risk of death [HR 1.833 (95\% CI 1.035, 3.247) and HR 0.973 (95\% CI 0.955, 0.991), respectively]. sPAP was an independent risk factor for death with a HR of 3.02 (95\% CI 1.91, 4.78) for sPAP ≥36 mmHg.An estimated sPAP >36 mmHg at baseline echocardiography was significantly and independently associated with reduced survival, regardless of the presence of pulmonary hypertension based on right heart catheterization

On the Complexity of Query Result Diversification

Query result diversification is a bi-criteria optimization problem for ranking query results. Given a database D, a query Q and a positive integer k, it is to find a set of k tuples from Q(D) such that the tuples are as relevant as possible to the query, and at the same time, as diverse as possible to each other. Subsets of Q(D) are ranked by an objective function defined in terms of relevance and diversity. Query result diversification has found a variety of applications in databases, information retrieval and operations research. This paper studies the complexity of result diversification for relational queries. We identify three problems in connection with query result diversification, to determine whether there exists a set of k tuples that is ranked above a bound with respect to relevance and diversity, to assess the rank of a given k-element set, and to count how many k-element sets are ranked above a given bound. We study these problems for a variety of query languages and for three objective functions. We establish the upper and lower bounds of these problems, all matching, for both combined complexity and data complexity. We also investigate several special settings of these problems, identifying tractable cases. 1

Development and validation of a patient-reported outcome measure for systemic sclerosis: the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire

OBJECTIVES: Patient-reported outcome measures (PROMs) are important for clinical practice and research. Given the high unmet need, our aim was to develop a comprehensive PROM for systemic sclerosis (SSc), jointly with patient experts. METHODS: This European Alliance of Associations for Rheumatology (EULAR)-endorsed project involved 11 European SSc centres. Relevant health dimensions were chosen and prioritised by patients. The resulting Systemic Sclerosis Impact of Disease (ScleroID) questionnaire was subsequently weighted and validated by Outcome Measures in Rheumatology criteria in an observational cohort study, cross-sectionally and longitudinally. As comparators, SSc-Health Assessment Questionnaire (HAQ), EuroQol Five Dimensional (EQ-5D), Short Form-36 (SF-36) were included. RESULTS: Initially, 17 health dimensions were selected and prioritised. The top 10 health dimensions were selected for the ScleroID questionnaire. Importantly, Raynaud's phenomenon, impaired hand function, pain and fatigue had the highest patient-reported disease impact. The validation cohort study included 472 patients with a baseline visit, from which 109 had a test-retest reliability visit and 113 had a follow-up visit (85% female, 38% diffuse SSc, mean age 58 years, mean disease duration 9 years). The total ScleroID score showed strong Pearson correlation coefficients with comparators (SSc-HAQ, 0.73; Patient's global assessment, Visual Analogue Scale 0.77; HAQ-Disability Index, 0.62; SF-36 physical score, -0.62; each p<0.001). The internal consistency was strong: Cronbach's alpha was 0.87, similar to SSc-HAQ (0.88) and higher than EQ-5D (0.77). The ScleroID had excellent reliability and good sensitivity to change, superior to all comparators (intraclass correlation coefficient 0.84; standardised response mean 0.57). CONCLUSIONS: We have developed and validated the EULAR ScleroID, which is a novel, brief, disease-specific, patient-derived, disease impact PROM, suitable for research and clinical use in SSc