“We wanted to make sure we were including aspects of the disease experience that are important to the people this core set was intended to measure,” said Jennifer Horonjeff, PhD, a researcher at Columbia University Medical Center and a lead author of the study. This project is one of a long series of studies on the core set.
Dr. Horonjeff and colleagues at several North American pediatric rheumatology centers conducted 72-hour, moderated, virtual focus groups with a total of 24 adolescent and young adult arthritis patients and caregivers. Researchers included discussion guides “designed to look at the holistic patient journey, not just the physical, but also the social and mental health that goes with this disease,” she said.
Adolescents identified activity and participation, and the psychosocial impact of disease as important domains. Young adults most frequently cited psychosocial impact, said Dr. Horonjeff. Caregivers of patients younger than 15 cited psychosocial impact, and body function and structure. Caregivers of older teens most frequently mentioned activity and participation, and the secondary impact of disease on family and caregivers.
Participants also discussed qualities they associate with inactive disease, including no pain or swelling, ability to participate in activities and better mood. They also offered suggestions on how doctors could measure disease activity, including listening to the patient, said Dr. Horonjeff. Patients and caregivers identified several domains not included in ACR Pediatric 30, she said.
Infection Risks
Juvenile rheumatic disease patients on immunosuppressants have increased infection rates, and this varies depending on the drug, according to a 2016 study conducted by the Pediatric Rheumatology International Trials Organization (PRINTO) in Genova, Italy.4 The study measured infection rates in 6,969 arthritis patients using data from the Pharmachild registry.
Researchers analyzed young patients divided into the following cohorts: treated with methotrexate and no biologic; treated with one biologic and no methotrexate; treated with two biologics with or without methotrexate; and those taking neither methotrexate nor a biologic. One-third of patients taking methotrexate without a biologic were also on systemic corticosteroids, said Gabriella Giancane, MD, a rheumatologist at Istituto Giannina Gaslini in Genova and a co-author of the study. Etanercept was the most frequent first choice of treatment for patients who used a biologic.
Systemic corticosteroids increased infection risk in patients as much as 12 times, she said. Use of methotrexate, cyclosporine and thalidomide also caused significantly higher infection risk. Dr. Giancane said the biologics associated with higher rates of infectious events included rituximab, IL-1 inhibitors, such as anakinra, and among the TNF inhibitors, infliximab. Infection rates were increased by 5.1 times in patients receiving one biologic, and 6.6 times if they received two biologics, the study found.
Neonatal Lupus
Neonatal lupus (NL) may predispose patients to develop other autoimmune diseases later in life, especially the cardiac manifestation, according to a new study by researchers at the New York University School of Medicine.5 NL is associated with passively acquired autoimmunity due to exposure to the mother’s anti-Ro antibodies in utero, and its main clinical features are cutaneous and cardiac, said Aaron Garza Romero, MD, a lead author of the study.
