Home Oxygen Therapy for Children. An Official American Thoracic Society Clinical Practice Guideline.

BACKGROUND: Home oxygen therapy is often required in children with chronic respiratory conditions. This document provides an evidence-based clinical practice guideline on the implementation, monitoring, and discontinuation of home oxygen therapy for the pediatric population. METHODS: A multidisciplinary panel identified pertinent questions regarding home oxygen therapy in children, conducted systematic reviews of the relevant literature, and applied the Grading of Recommendations, Assessment, Development, and Evaluation approach to rate the quality of evidence and strength of clinical recommendations. RESULTS: After considering the panel's confidence in the estimated effects, the balance of desirable (benefits) and undesirable (harms and burdens) consequences of treatment, patient values and preferences, cost, and feasibility, recommendations were developed for or against home oxygen therapy specific to pediatric lung and pulmonary vascular diseases. CONCLUSIONS: Although home oxygen therapy is commonly required in the care of children, there is a striking lack of empirical evidence regarding implementation, monitoring, and discontinuation of supplemental oxygen therapy. The panel formulated and provided the rationale for clinical recommendations for home oxygen therapy based on scant empirical evidence, expert opinion, and clinical experience to aid clinicians in the management of these complex pediatric patients and identified important areas for future research.

ChILD Family Education.

The Children's Interstitial Lung Disease (chILD) Foundation and chILD Research Cooperative identified a need for accurate and understandable chILD-related information for families. As a result, collaboration with the University of Alabama at Birmingham (UAB) Pediatric Pulmonary Center (PPC) produced "Get Up And Go With chILD!," a comprehensive, chILD-specific family education resource. Families and clinicians from multiple backgrounds and perspectives submitted content suggestions and copies of currently used family education and health management materials. Families provided information about the helpful and unhelpful information they had received in the past, the information they wished they had received, and their educational preferences. The resultant booklet is comprehensive, containing the education topics identified as critical for inclusion by families and clinicians, and is written at a seventh grade reading level. Available both in print and online, the online version contains live links to interactive Web sites, support groups, teaching videos, and downloadable forms and tools. If health education is to be understandable, useable, efficient, cost-effective, and of superior quality, if it is to improve people's lives by facilitating a change in their attitudes, beliefs, knowledge, skill levels, and behavior, an interdisciplinary, family-centered approach is crucial. This is resource intensive, but the initial costs of producing materials in this manner far outweigh the potential costs of poorly developed and delivered health education. Through an iterative, well-coordinated, collaborative process between families and clinicians from a variety of backgrounds and perspectives, "Get Up And Go With chILD!" exemplified this approach.