Continuation of the CARRA Registry as described in the protocol will support data collection on patients with pediatric-onset rheumatic diseases. The CARRA Registry will form the basis for future CARRA studies. In particular, this observational registry will be used to answer pressing questions about therapeutics used to treat pediatric rheumatic diseases, including safety questions.
OBJECTIVE: There is no standardized approach to the treatment of pediatric antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (ped-AAV). Because of the rarity of ped-AAV, randomized trials have not been feasible. The Childhood Arthritis and Rheumatology Research Alliance (CARRA) developed consensus treatment plans (CTPs) for severe ped-AAV to enable the future study of comparative effectiveness and safety.METHODS: A workgroup of CARRA members (rheumatologists and nephrologists) formed the AAV working group. This group performed a literature review on existing evidence-based treatments and guidelines for the management of AAV. They determined that the target population for CTP development was patients <18 years with new-onset granulomatosis with polyangiitis (GPA), microscopic polyangiitis, or renal-limited AAV (eosinophilic-GPA was excluded) with presentation confined to those with severe disease i.e. organ- or life-threatening. Face-to-face consensus conferences employed nominal group techniques to identify treatment strategies for remission-induction and remission-maintenance, data elements to be systematically collected, and outcomes to be measured over time.RESULTS: The ped-AAV workgroup developed two CTPs for each of the remission-induction and remission-maintenance of severe AAV. A corticosteroid-weaning regimen for induction and maintenance, a core dataset, and outcome measures were also defined. A random sample of CARRA membership voted acceptance of the CTPs for remission-induction and remission-maintenance with a 94% (75/80) and 98% (78/80) approval rate respectively.CONCLUSION: Consensus methodology established standardized CTPs for treating severe ped-AAV. These CTPs were in principle accepted by CARRA-wide membership for pragmatic comparative effectiveness evaluation in a long-term registry.
View details for DOI 10.1002/acr.24590
View details for PubMedID 33675161
View details for Web of Science ID 000542687800067
View details for DOI 10.1002/acr.23683
View details for Web of Science ID 000465600400002
OBJECTIVE: To identify behavioral health provider perspectives on gaps in mental health care for youth with rheumatologic conditions.METHODS: Social workers (n=34) and psychologists (n=8) at pediatric rheumatology centers in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed an online survey assessing current practices and mental health care needs of youth with rheumatologic conditions. Responses were compared to a published survey of CARRA rheumatologists (n=119). Thematic analysis of 20 semi-structured interviews with behavioral health providers was performed.RESULTS: One third of CARRA centers (n=100) had no affiliated social worker or psychologist. Only one behavioral health provider reported current universal mental health screening at their rheumatology clinic, yet routine depression screening was supported by >85% of behavioral health providers and rheumatologists. Support for anxiety screening was higher among behavioral health providers (90% vs 65%, p<0.01). Interviews illustrated a need for interventions addressing illness-related anxiety, adjustment/coping/distress, transition, parent/caregiver mental health, and peer support. Limited resources, lack of protocols, and patient cost/time burden were the most frequent barriers to intervention. Inadequate follow-up of mental health referrals was indicated by 52%. More behavioral health providers than rheumatologists favored mental health services in rheumatology settings (55% vs 19%, p<0.01). Only 7 social workers (21%) provided counseling/therapy, and interviews indicated their perceived under-utilization for these services.CONCLUSION: Behavioral health providers indicate an unmet need for mental health interventions addressing illness-related issues affecting youth with rheumatologic conditions. Implementation of mental health protocols and optimizing utilization of social workers may improve mental health care for these youth. This article is protected by copyright. All rights reserved.
View details for PubMedID 29953741
It is widely recognized that burnout is prevalent in medical culture and begins early in training. Studies show pediatricians and pediatric trainees experience burnout rates comparable to other specialties. Newly developed Accreditation Council for Graduate Medical Education (ACGME) core competencies in professionalism and personal development recognize the unacceptably high resident burnout rates and present an important opportunity for programs to improve residents experience throughout training. These competencies encourage healthy lifestyle practices and cultivation of self-awareness, self-regulation, empathy, mindfulness, and compassion—a paradigm shift from traditional medical training underpinned by a culture of unrealistic endurance and self-sacrifice. To date, few successful and sustainable programs in resident burnout prevention and wellness promotion have been described. The University of Arizona Center for Integrative Medicine Pediatric Integrative Medicine in Residency (PIMR) curriculum, developed in 2011, was designed in part to help pediatric programs meet new resident wellbeing requirements. The purpose of this paper is to detail levels of lifestyle behaviors, burnout, and wellbeing for the PIMR program’s first-year residents (N = 203), and to examine the impact of lifestyle behaviors on burnout and wellbeing. The potential of the PIMR to provide interventions addressing gaps in lifestyle behaviors with recognized association to burnout is discussed.
View details for PubMedID 29690631
Pediatric integrative medicine is an emerging field which, to date, has not been described in detail in academic medical centers in the United States. Early research of pediatric integrative medicine modalities shows promise for the treatment of common pediatric conditions such as irritable bowel syndrome, acute and chronic pain, headache, and allergy, among others. In light of the growing prevalence of pediatric illnesses and patient complexity, it is crucial to emphasize the patient's overall well-being. As academic centers around the world start to develop pediatric integrative medicine programs, the aim of this manuscript is to briefly highlight evidence of effective integrative treatments in pediatric subspecialties, to describe the establishment of our integrative medicine program, to summarize its early efforts, and to discuss potential barriers and keys to success.
View details for PubMedID 30545081
View details for Web of Science ID 000411824105128
View details for DOI 10.1542/peds.2017-1961
View details for Web of Science ID 000408820300051
View details for Web of Science ID 000399787200125
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Stanford Medicine is closely monitoring the COVID-19 pandemic. Get the latest news on COVID-19 testing, treatment, tracking data, and medical research.
Racism and discrimination are direct affronts to Stanford Medicine?s values. Read our leaders? pledge on racial equity.
A leader in the biomedical revolution, Stanford Medicine has a long tradition of leadership in pioneering research, creative teaching protocols and effective clinical therapies.
Stanford Medicine, one of the first medical centers in the country to conduct clinical tests for COVID-19, has remained at the cutting edge of coronavirus detection.
Our scientists have launched dozens of research projects as part of the global response to COVID-19. Some aim to prevent, diagnose and treat the disease; others aim to understand how it spreads and how people?s immune systems respond to it.
After six years at the NIH, Hannah Valantine has returned to Stanford with new ideas for building a more diverse and inclusive campus.
Digital health tools increase engagement in weight loss programs, helping users shed pounds, according to a new study.
Stanford Children's Health physician Alan Schroeder, MD, talks about his work caring for kids with COVID-19 symptoms.
Latest information on COVID-19
Stanford Medicine is closely monitoring the COVID-19 pandemic. Get the latest news on COVID-19 testing, treatment, tracking data, and medical research.
Racism and discrimination are direct affronts to Stanford Medicine?s values. Read our leaders? pledge on racial equity.
A leader in the biomedical revolution, Stanford Medicine has a long tradition of leadership in pioneering research, creative teaching protocols and effective clinical therapies.
Stanford Medicine, one of the first medical centers in the country to conduct clinical tests for COVID-19, has remained at the cutting edge of coronavirus detection.
Our scientists have launched dozens of research projects as part of the global response to COVID-19. Some aim to prevent, diagnose and treat the disease; others aim to understand how it spreads and how people?s immune systems respond to it.
After six years at the NIH, Hannah Valantine has returned to Stanford with new ideas for building a more diverse and inclusive campus.
Digital health tools increase engagement in weight loss programs, helping users shed pounds, according to a new study.
Stanford Children's Health physician Alan Schroeder, MD, talks about his work caring for kids with COVID-19 symptoms.