Transition from pediatric to adult rheumatic care plagued by ‘lack of clear information’
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Caregivers of pediatric rheumatology patients transitioning to adult care reported a “lack of clear information” on the necessary procedures, according to data presented at the EULAR 2024 Congress.
“This paper explored the transition from pediatric to adult care,” Elsa Frazao Mateus, PhD, vice president of EULAR’s People with Arthritis/Rheumatism Across Europe committee, told attendees during a press conference at the meeting. “This, as we know, is a crucial moment. They start to take over their own lives.”
To examine the transition process from pediatric to adult care in patients with rheumatic disease, Antonella Celano, president of the Association of People with Rheumatic and Rare Diseases, based in Milan, Italy, and Matteo Santopietro, of WeResearch, also in Milan, conducted a qualitative and quantitative survey of 394 individuals overall. The analysis included data from caregivers of 308 patients with rheumatic diseases aged 14 to 20 years. This cohort was further divided into the caregivers of 139 patients who transitioned to adult care and 169 caregivers of patients who had not yet made the transition.
A second cohort of 86 patients aged 16 to 30 years with at least one rheumatic pathology was also surveyed. The researchers divided this cohort into 72 patients who transitioned and 14 who did not.
Interviews were conducted in August 2023.
According to the researchers, 24.7% of all caregivers in the first cohort reported that they did not have sufficient information about the transition. Among those in the first cohort who made the transition, 19.4% reported that they did not have complete information about the transition. Meanwhile, among those in the first cohort who had not made the transition, 29% reported that they did not have complete information.
“Up to 30% of caregivers felt they did not have enough information on the transition,” said Mateus, who was not involved with the study.
Mateus further described “often unstructured communications” about the transition that led to a “risk of interruption of therapeutic activity.”
Data from the second cohort provided information about deficiencies in continuity of care for pediatric and adolescent patients transitioning to adult care. The researchers reported that bureaucracy prolonged the transition process, that there was insufficient communication and coordination among specialist physicians, and that the emotional, psychological and empathetic aspects were lacking.
“If you are not used to dealing with the bureaucracy at age 18, it can make it more difficult,” Mateus said.
Pediatric patients who are suddenly charged with taking responsibility for their own health reported increasing feelings of loneliness, according to Mateus.
“Last but not least, there is the emotional and psychological aspect of adapting to a new medical environment,” she said. “This work highlighted that one of the main obstacles that families and patients face from pediatric to adult rheumatology care is a lack of clear information on the process. This is a very important issue and we need to address it and call more attention to it.”
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Celano A, Santopietro M. OP0172-PARE. Presented at: EULAR 2024 Congress; June 12 to June 15, 2024, Vienna, Austria.
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