Background: Few studies have systematically analyzed information regarding chronic medical conditions and available treatments on social media. Celiac disease (CD) is an exemplar of the need to investigate web-based educational sources. CD is an autoimmune condition wherein the ingestion of gluten causes intestinal damage and, if left untreated by a strict gluten-free diet (GFD), can result in significant nutritional deficiencies leading to cancer, bone disease, and death. Adherence to the GFD can be difficult owing to cost and negative stigma, including misinformation about what gluten is and who should avoid it. Given the significant impact that negative stigma and common misunderstandings have on the treatment of CD, this condition was chosen to systematically investigate the scope and nature of sources and information distributed through social media. Objective: To address concerns related to educational social media sources, this study explored trends on the social media platform Twitter about CD and the GFD to identify primary influencers and the type of information disseminated by these influencers. Methods: This cross-sectional study used data mining to collect tweets and users who used the hashtags #celiac and #glutenfree from an 8-month time frame. Tweets were then analyzed to describe who is disseminating information via this platform and the content, source, and frequency of such information. Results: More content was posted for #glutenfree (1501.8 tweets per day) than for #celiac (69 tweets per day). A substantial proportion of the content was produced by a small percentage of contributors (ie, “Superuser”), who could be categorized as self-promotors (eg, bloggers, writers, authors; 13.9% of #glutenfree tweets and 22.7% of #celiac tweets), self-identified female family members (eg, mother; 4.3% of #glutenfree tweets and 8% of #celiac tweets), or commercial entities (eg, restaurants and bakeries). On the other hand, relatively few self-identified scientific, nonprofit, and medical provider users made substantial contributions on Twitter related to the GFD or CD (1% of #glutenfree tweets and 3.1% of #celiac tweets, respectively). Conclusions: Most material on Twitter was provided by self-promoters, commercial entities, or self-identified female family members, which may not have been supported by current medical and scientific practices. Researchers and medical providers could potentially benefit from contributing more to this space to enhance the web-based resources for patients and families.

INTRODUCTION: Quality of life (QOL) is critical in screening and management of chronic medical conditions, including celiac disease (CD). The aim of this project was to develop a CD-specific pediatric QOL measure (Celiac Disease Life Inventory of Family Experiences [CDLIFE]) with parallel self-report and parent-report forms by generating items through concept elicitation interviews, iterative refinement using cognitive debriefing interviews, and evaluating its psychometric properties and validity. METHODS: Concept elicitation interviews were conducted to develop items (9 youth ages 8–19 years with CD; 10 parents of youth with CD), followed by cognitive interviews with additional stakeholders (3 youth with CD, 3 parents, and 8 clinicians) and item administration (parent/youth reports: n = 103/102). Analyses included response frequencies, internal consistency reliability, exploratory factor analyses, and correlations with related measures (Patient-Reported Outcomes Measurement Information System, Pediatric Quality of Life Inventory, and Gluten-Free Diet-Visual Analog Scale). RESULTS: From concept elicitation interviews, 42 youth and 45 parent items were developed. Cognitive debriefing interviews yielded 36 refined items. Psychometric analyses identified 15 items to remove due to ceiling/floor effects, poor item-to-test correlations, and youth-parent mismatch or conceptual mismatch. Total score internal consistency was high (αs = 0.89–0.90). A 4-factor model solution had the best fit (Social Impact, External Support, Adaptive Vigilance, Eating Behaviors/Adjustment) with a fifth single-item domain (Financial Resources). The final CDLIFE (21 items) total scores correlated with most related measures in expected directions for parent and youth forms. DISCUSSION: The CDLIFE may facilitate insight into CD-specific QOL for youth ages 2–18 years, capturing important dimensions of physical and socioemotional health. Administering the CDLIFE will help identify and track families needing support.