Background/Purpose:

Transition from pediatric to adult care is a difficult process with the potential for negative impact on medical, psychological and social outcomes.  In this study we assessed the social and health related outcomes of a cohort of pSLE patients transitioned to adult care. 

Methods: We conducted a cross-sectional observational survey based on a telephone questionnaire of young adults with pSLE diagnosed and treated at Children’s Hospital Los Angeles between 1992 and 2007. All patients met ACR criteria for SLE at diagnosis and had originally participated in a SLE genetic study prior to their transition. Outcome measures were self-reported survey responses related to transition of care, medication knowledge and adherence, employment status and disease related damage. 

Results:

After an average follow-up period of 5 years since transition (SD 3.7 years) 51 of the original 150 pSLE patients could be contacted of whom 41 consented to participate in the study. 2 were deceased. Median age at the time of interview was 24 years (range 18-34 years), median disease duration was 11.2 years (range 6-21 years), The patients were primarily female (90%) and Hispanic (71%). A significantly lower need for hospitalizations was seen in those patients who had been referred to the adult physician by their pediatric rheumatologist (8/18; 44%), compared to those who had no assistance in the referral process (15/19; 56%), (p=0.04). 38/41(93%) reported that they saw a physician regularly, 35/41 (85%) a rheumatologist. 20/41 (49%) had had an appointment with a physician within the last month, 16/41 (39%) within the last 6 months. Three patients (2 with active disease) had no regular interaction with a medical professional at all.  22/41(54%) of patients experienced difficulties with the transition process; 13/41 (31.7%) due to loss of insurance and 10/41 (24%) reported difficulties due to emotional readjustment. Patients reported taking on average 4 medications and 78% reported full compliance. Compliance did not increase with age or extent of end-organ involvement. 16/41 (39%) of patients were unemployed, and 9/16 (56%) of those reported this to be lupus-related (p=0.01). At the time of the interview 37/41 (90%) of patients reported symptoms with involvement of 3 or more organ systems in two thirds.  Most symptoms were mild and managed as an outpatient and 34/41 (83%) felt their lupus was under good control. 9/24 (37.5%) with renal involvement at disease onset had undergone or were awaiting renal transplant and (36%) reported either new or ongoing neuropsychiatric symptoms which were associated with unemployment (10/15 vs 6/26; p=0.009).

Conclusion:

The majority of our patients successfully transitioned from pediatric to adult rheumatologic care. However frequent challenges during transition were  loss of insurance and emotional attachments to the former pediatric provider. This highlights the importance of a structured transition process by pediatric rheumatologists to their adult colleagues including preparation for the emotional readjustment and guidance for financial and insurance matters.  Morbidity remains high in pSLE through adulthood, with renal and CNS manifestations as the leading cause for disease related unemployment.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/long-term-follow-up-of-a-pediatric-lupus-cohort-transition-of-care-and-health-related-outcomes/