Patients with childhood-onset systemic lupus erythematosus (SLE) who transitioned to adult care without a formal transitioning process had long periods without care despite having moderate disease activity and also frequently reported anxiety and depression in a retrospective study of 50 patients during a 3-year period at Brigham and Women’s Hospital Lupus Center in Boston.
Dr. Mary Beth Son of Boston Children’s Hospital and her colleagues found that the patients went a mean of nearly 9 months from their last pediatric rheumatology visit to their first adult rheumatology visit, and 72% had at least one gap in care, defined as no appointments in a recommended time frame. A total of 32% had more than one missed appointment, although there was an average of only 9% of appointments missed per patient. The investigators determined that missed appointments were significantly associated with white race, education below the high school level, and medication nonadherence (Lupus. 2016 Mar 23. doi: 10.1177/0961203316640913).
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“The finding of lower educational level leading to a suboptimal transition outcome may help to delineate an at-risk population that requires further support during the process of transition. ... Although missed appointments weren’t prominent, the majority of our patients experienced gaps in care whereby they didn’t schedule appointments within the recommended time frame per the treating physician. The lack of appropriate scheduling with its concomitant potentially serious consequences demonstrates the need to educate transition patients regarding the importance of scheduling their own appointments,” the investigators wrote.
Scores of the SLE Disease Activity Index remained stable from a mean of 5.7 at baseline to 4.7 at year 3, but Systemic Lupus International Collaborating Clinics/ACR Damage Index for Systemic Lupus Erythematosus scores rose significantly from 0.46 to 0.78. Depression and anxiety diagnoses or symptoms increased significantly from 10% to 26%, and the investigators noted that “more than one-quarter of them required support from social work for a variety of serious circumstances including homelessness, substance abuse, and incarceration.”
The patients were diagnosed at a mean age of 14.5 years, and most were white (42%), African American (22%), Hispanic (22%), or Asian (10%). They had a mean age of 19.5 years at their first Lupus Center visit and 21.9 years at their last.
The investigators noted that the patients’ relatively high socioeconomic status (zip code–based annual household income of $50,000-$100,000 in 60% and $100,000 or more in 32%) may limit the generalizability of the study.
The authors reported having no relevant conflicts of interest. Dr. Son was supported by a Boston Children’s Hospital Career Development Fellowship and another author’s grant from the National Institutes of Health helped to support the study.