Inpatient mortality in transition-aged youth with rheumatic disease: an analysis of the National Inpatient Sample.

BACKGROUND: Transition from pediatric to adult care is a vulnerable time for youth with chronic diseases. In youth with rheumatic disease, studies show high rates of loss to follow up and increased disease activity. However, mortality data are lacking. In this study, we assessed whether transitional age is a risk factor for inpatient mortality. METHODS: We analyzed the 2012-2014 National Inpatient Sample database, a representative sample of discharges in the United States. Individuals with rheumatic diseases were identified by International Statistical Classification of Disease - 9 (ICD-9) codes at time of discharge. Youth were categorized into three age groups: pre-transitional (11-17), transitional (18-24) and post transitional (25-31). We fitted univariable and multivariable logistic regression models to assess whether transitional age was a risk factor for inpatient mortality. RESULTS: There were 30,269 hospital discharges which met our inclusion criteria of diagnosis and age. There were 195 inpatient deaths (0.7%). The most common causes of death were infection (39.5%), pulmonary disease (13.8%), and cardiac disease (11.2%). The Odds ratio for inpatient mortality of a transitional-aged individual was 1.18 compared to controls (p = 0.3). Black race (OR = 1.4), male sex (OR = 1.75), and a diagnosis of systemic sclerosis (OR = 4.81) or vasculitis (OR = 2.85) were the greatest risk factors of inpatient mortality. CONCLUSION: Transitional age was not a risk factor for inpatient mortality in this study. We did identify other risk factors other than age. Further studies are required to assess if there is an increased risk of mortality in outpatients of the transitional age group.

Living in rural New England amplifies the risk of depression in patients with HIV.

BACKGROUND: The importance of depression as a complication of HIV infection is increasingly understood, and people living in rural areas are at increased risk for depression. However, it is not known whether living in rural areas amplifies the risk of depression in patients with HIV. METHODS: We compared the prevalence of depression between rural and metropolitan HIV patients seen at the Dartmouth-Hitchcock HIV Program in a retrospective cohort study. Using the validated Rural-Urban Commuting Area Score, we categorized patients as living in small town/rural areas, micropolitan or metropolitan towns. Then, using a multivariate logistic regression model to adjust for demographic factors that differed between rural and metropolitan patients, we estimated the impact of living in rural areas on the odds of depression. RESULTS: Among 646 patients with HIV (185 small town/rural, 145 micropolitan, 316 metropolitan), rural patients were older, white, male, and men who have sex with men (ANOVA, F-statistic < 0.05). The prevalence of depression was highest in rural patients (59.5 vs. 51.7 vs. 41.2%, F statistic < 0.001), particularly rural patients on antiretroviral therapy (72.4 vs. 53.5 vs. 38.2%, F-statistic < 0.001. A multivariate logistic regression model showed that the odds of depression in rural patients with HIV were 1.34 (P < 0.001). CONCLUSION: HIV-infected patients living in rural areas, particularly those on antiretroviral therapy, are highly vulnerable to depression.

Assessment of transition readiness in adolescents and young adults with chronic health conditions.

BACKGROUND: Transition from pediatric to adult health care is a vulnerable period for adolescents and young adults. Challenges include paucity of validated measures to assess patients' transition readiness. We evaluated the Transition Readiness Assessment Questionnaire (TRAQ) in adolescents and young adults with rheumatic, gastrointestinal, and endocrine disorders. We examined whether baseline TRAQ scores and other demographic variables predicted transition to adult care over a three year follow up period. METHODS: In this descriptive study at a single institution, eighty-nine adolescents at a single pediatric academic medical center completed demographic and medical history surveys and the TRAQ and were followed over 3 years by telephone interview to determine whether they had transitioned to adult subspecialty care. Transition was defined as attending at least one adult subspecialty appointment. Multivariable logistic regression and Cox proportional hazards regression models were used to determine whether TRAQ scores predicted time to transition. RESULTS: Of the participants, 56% had rheumatic, 21% endocrine, and 23% gastrointestinal conditions. The TRAQ self-management domain score was not significantly associated with age, gender, socioeconomic status, or specialty. The TRAQ self-advocacy score increased with age. Baseline TRAQ scores did not predict transition or time to transition over three years. CONCLUSION: In this cohort of adolescents and young adults who were 16 to 23 years of age at enrollment, 48% transitioned to adult care over three years of follow up. Nearly half reported not discussing transition with provider or seeing provider independently for part of visit. Older age but not other demographic variables nor baseline TRAQ score predicted transition or time to transition to an adult subspecialty provider; however, a there was a trend towards shorter time to transition with the highest quartile TRAQ scores.

Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists.

OBJECTIVE: To describe treatment practices for childhood pure membranous lupus nephritis (MLN). METHODS: Survey study of Childhood Arthritis and Rheumatology Research Alliance and American Society of Pediatric Nephrology members. RESULTS: There were 117 respondents who completed the survey (60 pediatric nephrologists, 57 pediatric rheumatologists). Steroids and nonsteroid immunosuppression (NSI) were routinely used by the majority for MLN. Mycophenolate mofetil was the favored initial NSI. Nephrologists used steroids (60% vs 93%) and NSI (53% vs 87%) less often than did rheumatologists for MLN without nephrotic syndrome (NS). CONCLUSION: Pediatric rheumatologists and nephrologists both recommend steroids and NSI for children with MLN, with or without NS.

Quantitative evaluation of a pediatric rheumatology transition program.

BACKGROUND: Transition from pediatric to adult care can be a challenging process which leaves young people vulnerable to interruptions of care and worsening disease status. Efforts to improve transition processes and outcomes have included development of individualized transition plans, creation of transition clinics, and utilization of transition coordinators. Few interventions have assessed transition outcomes quantitatively. METHODS: We assessed transition outcome and satisfaction of a social worker-centered transition program in a pediatric rheumatology clinic. The social worker met with patients who were 16 years or older and their families, provided transition education materials, assisted patients in developing an individualized transition plan, assisted in making appointments with an adult rheumatologist at time of transfer of care, and followed up with patients to assess transition outcomes. Patients were contacted 6-8 months after initial appointment with the adult rheumatologist to assess whether they remained in the care of the adult provider. Participants then completed a questionnaire to rate their satisfaction with the transition program. RESULTS: 210 adolescents and young adults participated in the transition program. Twenty-six similarly aged patients were eligible for transition services but did not participate in the program and were used as controls. Of the patients who participated in the program, 42% were considered to have transitioned successfully to adult care compared to 23% of controls (p-value = 0.002) of all patients. In the survey of satisfaction, 81% of participants said that they were satisfied with the transition process. CONCLUSIONS: This study shows that a social worker transition coordinator can significantly improve the rate of pediatric rheumatology patients who successfully transition to adult care. Furthermore, patients are largely satisfied with this process.