Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Synthesis

Objective.Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondy-loarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describepatients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence.Methods.Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesiswas used to analyze the findings.Results.From 56 studies involving 1,383 adult patients (RA [n=1,149], SpA [n=191], not specified [n=43]), we identified 6themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health,daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflictingand confusing advice, prognostic uncertainty with changingtreatment regimens), powerful social influences (swayed byothers’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuingpeer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologicagent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing life-style intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line).Conclusion.Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease iden-tity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectationthat medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive envi-ronment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes

Establishing a core outcome set for peritoneal dialysis : report of the SONG-PD (standardized outcomes in nephrology-peritoneal dialysis) consensus workshop

Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are diverse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD

Medication Use During Neonatal and Pediatric Critical Care Transport

ABSTRACT The Pediatric Critical Care Unit (PCCU) at the Children's Hospital of Western Ontario provides a transport service and team (critical care physician, critical care nurse, respiratory therapist) which transports critically ill newborns, infants, and children. The purpose of this study was to identify the medications used during transport and to determine age-related differences. Results of a prospective study of all drugs administered by the transport team to 174 patients during their stabilization and transport from November 1, 1987 through October 31, 1988 are presented. One hundred and twenty-one (69.5%) patients received at least one medication. The most frequently administered medications were antibiotics (38.5% of patients), followed by morphine (27.0%), anticonvulsants (23.6%), neuromuscular blockers (14.4%), respiratory drugs (11.5%), inotropes (10.9%), and sedatives (7.5%). Miscellaneous medications were administered to 48.8% of patients. The use of different classes of drugs varied with age; anticonvulsants were most frequently administered to children, sedatives and respiratory medications to infants, and antibiotics and miscellaneous medications to newborns. The wide range of medications used may reflect the diversity of diseases causing critical illness which reinforces that transport teams must have access to and knowledge of a variety of medications. The formulary of medications taken by the critical care transport team is included.RÉSUMÉLe Service Pédiatrique des soins intensifs (SPSJ) du Children's Hospital of Western 0ntario assure un service de transport et une équipe de réanimation (comprenant un médecin de réanimation, un(e) infirmier(e) de réanimation, un thérapeute des voies respiratoires qui transporte des nouveau-nés, des nourrissons et des enfants gravement malades. Le but de cette étude était d'identifier l'utilisation des médicaments pendant le transport afin de déterminer les différences par rapport à l'âge. Les résultats d'une étude en perspective de tous les médicaments dispensés par l’équipe de transport chez 174 malades pendant leur stabilisation et leur transport entre le 1er novembre l 987 et 31 octobre 1988 sont présentés. Cent vingt et un malades (69.5%) ont reçu au moins un médicament. Les médicaments les plus fréquemment utilisés étaient des antibiotiques (38.5% des malades) suivi par la morphine (27.0%), des anticonvulsivants (23.6%), des agents bloquants neuromusculaires (14.4%), des médicaments des voies respiratoires (11,5%), des inotropes (10.9%), et des sédatifs (7.5%). Divers médicaments ont été dispensés chez 48.8% des malades. L'utilisation de catégories différentes de médicaments a varié selon l'âge; des anticonvulsivants étaient plus fréquemment administrés chez des enfants, des sédatifs et des médicaments des voies respiratoires étaient administrés chez des nourrissons et des antibiotiques et divers médicaments étaient administrés chez les nouveau-nés. La grande série des médicaments utilisée peut refléter la diversité des maladies entraînant un état grave et d'où le besoin d'assurer que l'équipe de transport ait accès aux divers médicaments et en possède la connaissance. Le formulaire des médicaments pris par t'équipe de transport de réanimation est inclus

“It’s not me, it’s not really me.” : insights from patients on living with systemic sclerosis : an interview study

Objectives: Patients with systemic sclerosis suffer severe physical limitations and psychological morbidity but their lived experience remains underrepresented and is reflected in the scarcity of evidence based patient-centered interventions. We aimed to describe patients' perspectives of systemic sclerosis to inform strategies to improve their care. Methods: Face-to-face semi-structured interviews were conducted with 30 adult patients with limited or diffuse systemic sclerosis in Australia. Transcripts were thematically analyzed using HyperRESEARCH software. Results: Six themes were identified: bodily malfunction (restrictive pain, debilitating physical changes, pervasive exhaustion); deprivation of social function (loss of work and career, social isolation, threat to traditional roles, loss of intimacy); disintegration of identity (stigmatizing physical changes, disassociated self-image, extinguished hopes, alone and powerless, invisibility of illness); insecurity of care (unrecognized disease, ambiguity around diagnosis and cause, information insufficiency, resigning to treatment limitations, seeking reassurance, fear of progression); avoiding the sick role (evading thoughts of sickness, protecting family, favorable comparison); and perseverance and hope (positive stoicism, optimism about treatment and monitoring, taking control of own health, pursuing alternative treatments, transcending illness through support). Conclusions: Systemic sclerosis inflicts major bodily and social restrictions that crushes patients' identity and self-image. Uncertainties about the cause, diagnosis and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism. Access to psychosocial care to support the patients' role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self-efficacy, adherence and outcomes in patients with systemic sclerosis

Habitat features influence catch rates of near-shore bull shark (Carcharhinus leucas) in the Queensland Shark Control Program, Australia 1996–2012

Understanding shark habitat use is vital for informing better ecological management of coastal areas and shark populations. The Queensland Shark Control Program (QSCP) operates over ∼1800 km of Queensland coastline. Between 1996 and 2012, catch, total length and sex were recorded from most of the 1992 bull shark (Carcharhinus leucas) caught on drum lines and gill-nets as part of the QSCP (sex and length was not successfully recorded for all individuals). Gear was set at multiple sites within ten locations. Analysis of monthly catch data resulted in a zero-inflated dataset for the 17 years of records. Five models were trialled for suitability of standardising the bull shark catch per unit effort (CPUE) using available habitat and environmental data. Three separate models for presence-absence and presence-only were run and outputs combined using a delta-lognormal framework for generalized linear and generalized additive models. The delta-lognormal generalized linear model approach resulted in best fit to explain patterns in CPUE. Greater CPUE occurred on drum lines, and greater numbers of bull sharks were caught on both gear types in summer months, with tropical sites, and sites with greater adjacent wetland habitats catching consistently more bull sharks compared to sub-tropical sites. The CPUE data did not support a hypothesis of population decline indicative of coastal overfishing. However, the total length of sharks declined slightly through time for those caught in the tropics; subtropical catches were dominated by females and a large proportion of all bull sharks caught were smaller than the size-at-maturity reported for this species. These factors suggest that growth and sex overfishing of Queensland bull shark populations may be occurring but are not yet detectable in the available data. The data highlight available coastal wetlands, river size, length of coastline and distance to the 50 m depth contour are important for consideration in future whole of lifecycle bull shark management. As concerns for shark populations grow, there is an increasing requirement to collate available data from control programs, fisheries, ecological and research datasets to identify sustainable management options and enable informed stock assessments of bull shark and other threatened shark species

Habitat features influence catch rates of near-shore bull shark (Carcharhinus leucas) in the Queensland Shark Control Program, Australia 1996–2012

Understanding shark habitat use is vital for informing better ecological management of coastal areas and shark populations. The Queensland Shark Control Program (QSCP) operates over ∼1800 km of Queensland coastline. Between 1996 and 2012, catch, total length and sex were recorded from most of the 1992 bull shark (Carcharhinus leucas) caught on drum lines and gill-nets as part of the QSCP (sex and length was not successfully recorded for all individuals). Gear was set at multiple sites within ten locations. Analysis of monthly catch data resulted in a zero-inflated dataset for the 17 years of records. Five models were trialled for suitability of standardising the bull shark catch per unit effort (CPUE) using available habitat and environmental data. Three separate models for presence-absence and presence-only were run and outputs combined using a delta-lognormal framework for generalized linear and generalized additive models. The delta-lognormal generalized linear model approach resulted in best fit to explain patterns in CPUE. Greater CPUE occurred on drum lines, and greater numbers of bull sharks were caught on both gear types in summer months, with tropical sites, and sites with greater adjacent wetland habitats catching consistently more bull sharks compared to sub-tropical sites. The CPUE data did not support a hypothesis of population decline indicative of coastal overfishing. However, the total length of sharks declined slightly through time for those caught in the tropics; subtropical catches were dominated by females and a large proportion of all bull sharks caught were smaller than the size-at-maturity reported for this species. These factors suggest that growth and sex overfishing of Queensland bull shark populations may be occurring but are not yet detectable in the available data. The data highlight available coastal wetlands, river size, length of coastline and distance to the 50 m depth contour are important for consideration in future whole of lifecycle bull shark management. As concerns for shark populations grow, there is an increasing requirement to collate available data from control programs, fisheries, ecological and research datasets to identify sustainable management options and enable informed stock assessments of bull shark and other threatened shark species

THE FILE ASSIGNMENT PROBLEM

Climate and weather-based drivers of shark movement are poorly known, yet vital for determining measures for effective conservation of shark populations and the management of shark-human interactions at different time scales. The bull shark, Carcharhinus leucas, an IUCN ‘Near-threatened’ species, is globally distributed in subtropical to tropical regions and is implicated in many attacks on humans because of its euryhaline habitat-use. However, drivers determining rapid transitions of this species among habitats along the freshwater-estuarine-marine continuum are yet to be fully understood. To identify triggers for movement by this species into beach areas we used conditional (binomial and gamma) generalised linear modelling (CGLM) of historical bull shark catches from the Queensland Shark Control Program (QSCP) collected from 1996 to 2007 across 1783 km of the Queensland coastline, Australia. We then compared catches before and after key weather events (such as floods) between 2006 and 2014 and used passive long-term acoustic telemetry to monitor movements of bull sharks into beach areas to test the model predictions. The CGLM showed that bull shark catch (occurrence) in beach areas is driven by rainfall and further influenced by sea surface temperature. Our model suggests that ≥100 mm total rainfall in the catchment associated with each beach area is significantly correlated with increased bull shark catch 1–8 days after the rainfall, a relationship also confirmed by the movements of acoustic tagged sharks between estuarine and beach areas. These trends provide the first predictive relationship for identifying increased risk of bull shark-human interactions in beach areas. They also suggest that the activity patterns of bull sharks are correlated with rainfall and this makes them particularly susceptible to localised, short-term changes in weather and long-term climate change. Keywords: Weather, Climatic variables, Acoustic tags, Human interactio

The Scope and Consistency of Outcomes Reported in Trials in Patients with Systemic Sclerosis

International audienceOBJECTIVE: The core outcome set for trials in systemic sclerosis (SSc) was developed in 2008 and comprises eleven domains and thirty-one measures, leading to the development of a composite index (CRISS). We aimed to assess the scope, and consistency of outcomes reported in trials of SSc, and the uptake of this core set and CRISS. METHODS: MEDLINE, Cochrane CENTRAL, Embase and clinicaltrials gov were searched to identify randomized trials published from 2000 to 29 April 2018 in adults with limited or diffuse SSc. Outcomes and measures were recorded for each trial, classified into domains and the frequency of outcomes before after publication of the publication of the core set calculated. RESULTS: From 152 trials, 4193 outcomes were classified into 84 domains. The three most common domains were health-related quality of life and function (59%, 130 measures), skin (47%, 59 measures) and pulmonary (45%, 168 measures). After the publication of the core outcome set, no trial reported the complete core set with adherence to each of the eleven domains ranging from 6.1% to 54.4% and adherence to each of the thirty-one measures ranging from 0 to 48.1%. The five measures required for CRISS were reported completely in 11% of trials. CONCLUSION: Despite recognition that uniform acquisition and reporting of outcomes would enable a better evaluation of proposed SSc therapeutics, the outcome domains and measures reported in randomized trials in systemic sclerosis remain very inconsistent, with little impact of the core outcome set. This article is protected by copyright. All rights reserved

Outcome Measures in Rheumatology - Interventions for medication Adherence (OMERACT-Adherence) Core Domain Set for Trials of Interventions for Medication Adherence in Rheumatology: 5 Phase Study Protocol

Background: Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a reduction in disease flares and the risk of re-fracture in osteoporosis, and the slowing of disease progression in RA. However, medication adherence remains suboptimal, as treatment regimens can be complex and difficult to continue long term. Many trials have been conducted to improve adherence to medication. Core domains, which are the outcomes of most relevance to patients and clinicians, are a pivotal component of any trial. These core domains should be measured consistently, so that all relevant trials can be combined in systematic reviews and meta-analyses to reach conclusions that are more valid. Failure to do this severely limits the potential for trial-based evidence to inform decisions on how to support medication adherence. The Outcome Measures in Rheumatology (OMERACT) – Interventions for Medication Adherence study by the OMERACT-Adherence Group aims to develop a core domain set for interventions that aim to support medication adherence in rheumatology. Methods/design: This OMERACT-Adherence study has five phases: (1) a systematic review to identify outcome domains that have been reported in interventions focused on supporting medication adherence in rheumatology; (2) semi-structured stakeholder interviews with patients and caregivers to determine their views on the core domains; (3) focus groups using the nominal group technique with patients and caregivers to identify and rank domains that are relevant to them, including the reasons for their choices; (4) an international three-round modified Delphi survey involving patients with diverse rheumatic conditions, caregivers, health professionals, researchers and other stakeholders to develop a preliminary core domain set; and (5) a stakeholder workshop with OMERACT members to review, vote on and reach a consensus on the core domain set for interventions to support medication adherence in rheumatology. Discussion: Establishing a core domain set to be reported in all intervention studies undertaken to support patients with medication adherence will enhance the relevance and the impact of these results and improve the lives of people with rheumatic conditions.Pharmaceutical Sciences, Faculty ofNon UBCReviewedFacult