Pain care for patients with epidermolysis bullosa: best care practice guidelines.

BACKGROUND: Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB. METHODS: The process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care, research and dissemination of knowledge for EB patients worldwide. An international panel of experts in pain and palliative care who have extensive experience caring for patients with EB was assembled. Literature was reviewed and systematically evaluated. For areas of care without direct evidence, clinically relevant literature was assessed, and rounds of consensus building were conducted. The process involved a face-to-face consensus meeting that involved a family representative and methodologist, as well as the panel of clinical experts. During development, EB family input was obtained and the document was reviewed by a wide variety of experts representing several disciplines related to the care of patients with EB. RESULTS: The first evidence-based care guidelines for the care of pain in EB were produced. The guidelines are clinically relevant for care of patients of all subtypes and ages, and apply to practitioners of all disciplines involved in the care of patients with EB. When the evidence suggests that the diagnosis or treatment of painful conditions differs between adults and children, it will be so noted. CONCLUSIONS: Evidence-based care guidelines are a means of standardizing optimal care for EB patients, whose disease is often times horrific in its effects on quality of life, and whose care is resource-intensive and difficult. The guideline development process also highlighted areas for research in order to improve further the evidence base for future care.

A Guide for Schools on Student-Directed Suicide Prevention Programs Eligible for Implementation under the STANDUP Act, a Rapid Review and Evidence Synthesis.

This review evaluates the strength of evidence for school-based mental health and suicide prevention programs that meet the legal eligibility criteria of the Suicide Training and Awareness Nationally Delivered for Universal Prevention Act of 2021 (STANDUP Act). Included studies were aggregated by program and a program's overall body of evidence was evaluated using the LEGEND system. Requirements for implementation were also documented. We identified 29 studies, which, when aggregated, encompassed 12 unique programs that meet the statute's evidence-based criteria. All four outcomes described in the statute were measured, with help-seeking being the most commonly measured. Two programs were assigned a high level of evidence in decreasing suicidal thoughts and behaviors. The findings serve as a resource for school officials in identifying evidence-based mental health and suicide prevention programs and understanding the resources needed for implementation.

Clinical practice guideline: the diagnosis, management, and prevention of bronchiolitis.

This guideline is a revision of the clinical practice guideline, "Diagnosis and Management of Bronchiolitis," published by the American Academy of Pediatrics in 2006. The guideline applies to children from 1 through 23 months of age. Other exclusions are noted. Each key action statement indicates level of evidence, benefit-harm relationship, and level of recommendation. Key action statements are as follows:

Let Evidence Guide Every New Decision (LEGEND): an evidence evaluation system for point-of-care clinicians and guideline development teams.

OBJECTIVE: To develop tools for use by teams of point-of-care clinicians to improve access to evidence evaluation. METHOD: A search of the literature was conducted to review available evidence evaluation systems for their applicability to the project. Fourteen systems were reviewed in depth for strengths and limitations of the systems to meet the objective. Using these strengths and addressing the limitations, tools were developed and pilot-tested among an interprofessional team of clinicians. Results Five principles were drawn from the review of the literature and from our experience to guide development of six tools. The tools form a comprehensive evidence evaluation system known as Let Evidence Guide Every New Decision (LEGEND). LEGEND included a glossary, a table of evidence levels, an algorithm, a set of evidence appraisal forms, and worksheets to guide grading a body of evidence and judging the strength of a recommendation. CONCLUSION: LEGEND provides tools for point-of-care clinicians that assist them in synthesizing evidence from published studies. The tools provide a balance between quality processes and simplicity, use terminology friendly to multiple disciplines, assist comprehensively with the evidence evaluation process, incorporate factors familiar to the user, and provide flexibility for a diverse range of evidence evaluation projects and users.