Digital Health Literacy Shapes Care for Children With Rheumatic Disease, Review Finds

Children and adolescents living with rheumatic diseases increasingly rely on digital health technologies to track symptoms, manage medications, and stay connected with their care teams. Yet a new scoping review published in PLOS Digital Health suggests that the benefits of these tools depend heavily on something often overlooked in pediatric medicine: digital health literacy, the knowledge and skills required to use technology and the internet to manage and communicate about health. The study, led by Craig Eling and colleagues including Alan M. Rosenberg and Jennifer N. Stinson, systematically mapped the factors that help or hinder digital health literacy among young rheumatic disease patients and their primary caregivers, and found that psychological capability stands out as the dominant determinant.

The research team searched five major databases—MEDLINE, CINAHL, Embase, Web of Science, and ProQuest—for English-language, full-text primary research studies relevant to pediatric rheumatic disease. From 5,789 unique records, 44 studies met the inclusion criteria. The review followed the Joanna Briggs Institute scoping review framework and conformed to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews, known as PRISMA-ScR, lending methodological rigor to the synthesis. The protocol was registered on the Open Science Framework, allowing independent verification of the review’s pre-specified approach.

A striking finding emerged from the analysis: none of the 44 included studies explicitly addressed the concept or impact of digital health literacy itself. Instead, the researchers identified promoting and detracting factors that matched the definition of digital health literacy and coded them accordingly. This gap reveals how a foundational competency for modern pediatric care has remained largely invisible in the research literature, even as digital tools proliferate in clinical practice. The authors argue that recognizing low digital health literacy and enacting targeted educational interventions are essential steps toward empowering digital health users.

To organize the findings, the team mapped facilitators and barriers to the Capability, Opportunity, and Motivation Model of Behavior, widely known as the COM-B Model. This behavioral science framework decomposes any behavior—in this case, effectively using digital health technology—into three components: capability, the physical and psychological capacity to perform it; opportunity, the external factors that make it possible; and motivation, the internal processes that energize and direct it. Applying COM-B to digital health literacy allowed the researchers to classify each identified factor into a coherent theoretical structure rather than a loose catalog of observations.

The COM-B domain of psychological capability emerged as a prominent source of both facilitators and barriers to digital health literacy. Psychological capability encompasses the knowledge, cognitive skills, memory, attention, and decision processes a user brings to a digital tool. For children and adolescents with rheumatic diseases, whose developmental stage varies enormously from early childhood through young adulthood, this domain is especially consequential. A symptom-tracking app that suits a college-aged patient may overwhelm a younger child, and caregiver understanding often mediates how effectively technology is used at home.

Within this domain, the review found that the design, function, language, and presentation of digital health technologies—crafted to meet the developmental and educational needs of the user—were essential to improving digital health literacy. In practical terms, this means interfaces must be age-appropriate, text must be readable, navigation must be intuitive, and content must align with the user’s health knowledge and cognitive maturity. Tools that fail on these dimensions can inadvertently exclude the very patients they are meant to help, widening rather than narrowing gaps in access to digital care.

The physical opportunity domain also yielded important findings. When healthcare providers fostered quality communication and answered the medical and technical questions that arose from digital health use, digital health literacy improved. This positions clinicians not merely as prescribers of apps and portals but as active educators who must be prepared to troubleshoot both the medical content and the technology itself. A caregiver confused by a laboratory results portal, or a teenager unsure how to interpret data from a wearable device, needs responsive guidance from the clinical team for the technology to translate into better health outcomes.

The implications of the review extend across multiple sectors of the health system. The authors emphasize that addressing digital health literacy requires consideration across clinical, administrative, design, and research contexts. Clinicians need training to recognize when patients and families struggle with digital tools. Administrators shape the systems and workflows that determine whether digital health resources are accessible and well supported. Designers of health technology must incorporate developmental and educational needs from the outset rather than retrofitting them later. And researchers must begin measuring digital health literacy directly, since the review showed the concept is rarely named, let alone evaluated, in the pediatric rheumatology literature.

Pediatric rheumatic diseases—including juvenile idiopathic arthritis, lupus, and juvenile dermatomyositis—are chronic conditions that demand sustained self-management, frequent monitoring, and coordination among families, patients, and specialists. Digital health technologies promise to ease this burden by enabling remote symptom reporting, medication reminders, telehealth visits, and shared decision-making. But the review’s findings make clear that these promises rest on a behavioral foundation that cannot be assumed. Without adequate digital health literacy, even the most sophisticated platform becomes a source of frustration, error, or disengagement rather than empowerment.

As health systems accelerate the digitization of pediatric care, the study offers a roadmap grounded in behavioral science. By anchoring facilitators and barriers to the COM-B Model, the researchers provide a framework that intervention designers can use to build targeted solutions—educational programs to strengthen psychological capability, communication practices to expand physical opportunity, and technology design that meets users where they are. The message for clinicians, developers, and policymakers alike is that digital health equity for children with rheumatic diseases will not come from technology alone; it will come from deliberately building the knowledge and skills that allow young patients and their caregivers to use that technology well.

Subject of Research: Digital health literacy facilitators and barriers in pediatric rheumatic disease, mapped to the COM-B behavior model in a scoping review of 44 studies

Article Title: Identifying facilitators of and barriers to digital health literacy in pediatric rheumatic disease: A scoping review

Article References: Identifying facilitators of and barriers to digital health literacy in pediatric rheumatic disease: A scoping review. (n.d.). https://doi.org/10.1371/journal.pdig.0001777

Image Credits: AI Generated

DOI: 10.1371/journal.pdig.0001777

Keywords: digital health literacy, pediatric rheumatology, scoping review, COM-B model, health technology, caregivers, chronic disease management, PLOS Digital Health, Identifying, facilitators, barriers, digital