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As telehealth is an emerging and rapidly changing form of pediatric rheumatology care, engaging patients, caregivers, and rheumatologists will help streamline care to improve satisfaction and overall experience.
While telehealth is a promising structure of healthcare for pediatric patients with rheumatic diseases, improved engagement and training for patients, caregivers, and clinicians may help patient experience, according to a study published in Pediatric Rheumatology.1
“While telehealth has been examined in adult rheumatology and other pediatric subspecialties, studies characterizing and assessing pediatric rheumatology telehealth implementation are sparse and were conducted prior to the COVID-19 pandemic,” investigators explained.
Patients who had an initial telehealth visit with a rheumatology clinician between April and June 2020 at the Children’s Hospital of Philadelphia (CHOP) were included in this study. All eligible patients and/or caregivers were sent a post-visit survey that contained a modified Telehealth Usability Questionnaire (TUQ), a Telemedicine Satisfaction and Usefulness Questionnaire (TSUQ), and questions regarding clinical and demographic characteristics. The TUQ total and subscale, which included satisfaction, reliability, effectiveness, and usefulness, were classified via a 5-point Likert scale in which 1 was defined as “strongly disagree” and 5 was defined as “strongly agree.” The relationship between clinical and demographic characteristics were analyzed using univariate linear regression models.
A total of 248 patients and caregivers responded to the survey. Juvenile idiopathic arthritis (JIA) was the most common diagnosed condition (33.5%), 59.7% were currently receiving medications, and most had been clinically diagnosed for more than 6 months (72.6%).
The average TUQ score was 4 and the majority (81%) were satisfied with their telehealth experience. However, usefulness had the lowest rating (p < 0.001). Within that domain, respondents agreed that telehealth saved more time when compared with traditional appointments (median = 5). However, telehealth was deemed less convenient (median = 4, IQR: 3–5) and did not provide their rheumatology needs (median = 4, IQR: 3–4).
Ease of use was reported as simple, pleasant, and easy (median = 5). However, “like using platform” was scored significantly lower (median = 4, IQR: 3–5); p < 0.001). Interestingly, while visual communications scores were lower, the effectiveness domain and verbal communication questions were rated highly (median = 5, IQR: 4–5). Scores were also high for comfort and communication; however, respondents were more likely to be unsatisfied in the subscales of convenience, receiving services, meeting with a rheumatologist in person, and providing for a patient’s needs.
Demographics, including age and race, and clinical features, such as disease duration, glucocorticoid usage, and diagnosis, did not play a role in telehealth satisfaction regarding TUQ scores.
The rapidly changing telehealth platform limited the study, as implementation and training changed and improved throughout the study period, which may have ultimately increased satisfaction in patients. Only 42% of patients and caregivers completed the survey, which may be representative of a more engaged percentage of the population and may hinder generalizability. Technological reliability, respondents who did not speak English, those who were unable to access care, and physician perspectives were not assessed in this study.
“These data provide the foundation for understanding patient and caregivers’ satisfaction with telehealth in pediatric rheumatology and suggest that it is a promising mode of healthcare delivery,” investigators concluded. “Further work is needed to design specific telehealth processes for pediatric rheumatology populations and assess outcomes. Given that telehealth is a rapidly emerging form of pediatric rheumatology care, we will need to engage patients, caregivers, multidisciplinary healthcare providers, and our health network technology partners to design interventions to streamline care to improve patient satisfaction and overall experience.”
Waqar-Cowles LN, Chuo J, Weiss PF, Gmuca S, LaNoue M, Burnham JM. Evaluation of pediatric rheumatology telehealth satisfaction during the COVID-19 pandemic. Pediatr Rheumatol Online J. 2021;19(1):170. Published 2021 Dec 9. doi:10.1186/s12969-021-00649-4