Background/Purpose: Collaborative research efforts have allowed great strides to advance treatment and care for pediatric patients living with chronic vasculitis. However, little research has been published examining the psychosocial impact of pediatric vasculitis. In adults with vasculitis,  anxiety, depression, and fatigue have often been associated with lower quality of life. The opportunity to better understand the functional impact of chronic health conditions like pediatric vasculitis represents an important area of study. Patient reported outcomes captured in the PedVas registry enable a direct assessment of parent and youth psychosocial functioning and shed light on this area of care.

Methods: Data collected from 2021-2024 from the Pediatric vasculitis initiative (PedVas), a large international  registry for chronic childhood  vasculitis, was used for this study. Dyads who completed parent and self-report versions of the PedsQL, PROMIS Fatigue and Depression scales at study entry were eligible for inclusion.

Results: Thirty-six parent-youth dyads were included. 52% of the sample were teens (ages 13-18) and 22% were children (ages 8 to 12). Diagnoses included granulomatosis with polyangiitis (38.9%), microscopic polyangiitis (19.4%), ANCA positive pauci-immune glomerulonephritis (16.7%), Takayasu’s arteritis (13.9%), polyarteritis nodosa (5.6%), and eosinophilic granulomatosis with polyangiitis (5.6%). Overall means of PedsQL and PROMIS fatigue and depression scales were within the average range for age based on parent and youth report. PedsQL and PROMIS fatigue ratings did not significantly differ between parent and youth report. 14% of youth on the PROMIS report elevated levels of depression and fatigue (≥1.5 SD worse than average). Closer examination of PedsQL items indicate that teens endorsed elevated emotional symptoms, reporting ‘often’ or ‘almost always’ feel angry (16%) , have trouble sleeping (16%), or worry about what will happen to me (26%).

Conclusion: Overall, parent and youth ratings from the PedVas registry indicate relatively intact functioning on psychosocial measures. A small subset of youth report higher rates of anxiety, depression, and fatigue that may impact quality of life, suggesting the potential for youth with vasculitis to benefit from routine screening in these areas. Close monitoring of youth and families by psychology/mental health care providers serve as an important aspect of healthcare care integration to ensure that their psychosocial needs are being met over time. Further exploration of psychosocial functioning linked with medical severity is recommended to better understand the relation between disease severity and psychosocial outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/parent-and-youth-report-of-psychosocial-functioning-in-chronic-childhood-vasculitis/