Healthcare Professionals Identify Challenges to Providing Care for Children with Lupus
According to new research from the New Jersey Chapter of the American Academy of Pediatrics (NJAAP), Pediatric Alliance for Lupus (PAL), healthcare professionals (HCPs) need more educational support and resources to support the care and treatment of patients with childhood-onset lupus (cSLE). Survey responses and in-depth interviews from the statewide New Jersey initiative revealed HCPs face significant barriers to caring for children with this complex autoimmune disease and their families.
To identify opportunities to improve cSLE care, the PAL initiative collaborators conducted surveys with 45 HCPs and found:
- Nearly half (49%) reported being just somewhat comfortable or not very comfortable providing routine care to children with lupus
- Over two-thirds (68%) felt just somewhat comfortable or not very comfortable conducting rheumatologic exams
- The vast majority (85%) wanted to increase their comfort level in caring for children with lupus
- 56% reported a need for relevant websites
- 44% and reported a need for user-friendly print materials
- 42% reported a need for and language-appropriate materials
Three additional in-depth HCP interviews underscored these challenges, as well as the need for enhanced communication and collaboration among pediatricians, subspecialists, and parents to provide the best possible comprehensive and coordinated care.
To help address these needs, PAL collaborators provided educational opportunities to 268 HCPs, which resulted in significant improvements in knowledge of lupus screening and diagnosis, approaches to adolescent care and transition to adult care and the educational tools for childhood lupus.
The Lupus Foundation of America (LFA) also collaborated with PAL and NJAAP to develop digital and print resources, translate key resources into Spanish and Mandarin Chinese and disseminate materials to HCPs and communities. The LFA is proud to support research and care efforts to ensure more relevant, age-appropriate and culturally and linguistically sensitive materials are widely available to people with cSLE, their caregivers and their healthcare providers.