US Adult Rheumatologists’ Perspectives on the Transition Process for Young Adults With Rheumatic Conditions

Abstract

Objective To assess the attitudes and common practices of adult rheumatologists in the US regarding health care transition (HCT) for young adults with rheumatic diseases. Methods An anonymous online survey was sent to US adult rheumatologist members of the American College of Rheumatology to collect demographic data and information on attitudes and common practices regarding the transition process. Results Of 4,064 contacted rheumatologists, 203 (5%) completed the survey. Almost half of respondents (45.1%) were never trained in transition practices, and 74.7% were not familiar with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Consensus Statement About Transitions for Youth with Special Healthcare Needs. Only 56.2% felt comfortable caring for former pediatric patients. The vast majority of respondents (90.7%) did not have a multidisciplinary transition team, and 37% did not have a plan for transitioning pediatric patients into their practice. Most adult rheumatologists were unsatisfied with the current transition process (92.9%), due to insufficient resources, personnel (91.1%), and time in clinic (86.9%). They also were unsatisfied with referral data received concerning previous treatments (48.9%), hospitalization history (48%), disease activity index (45.1%), medical history summary (43.9%), comorbidities (36.4%), medication list (34.1%), and disease classification (32.6%). Three major barriers to HCT were lack of insurance reimbursement (33.7%), knowledge about community resources (30.8%), and lapses in care between primary provider and specialist (27.8%). Conclusion This survey identified substantial gaps in knowledge and resources regarding HCT for young adults with rheumatic diseases. These may be best addressed by further training, research, dedicated resources, adequate payment, and practice guidelines.

National Priorities for High-quality Rheumatology Transition Care for Youth in Canada

“…Phase 1) Needs Assessment: We developed a survey for Canadian rheumatologists (Appendix) based on two previous surveys conducted in the United States (12,15). We sought to identify current involvement in transition care, preparation activities for providing this care, and awareness of existing transition resources.…”

Pediatric rheumatology: addressing the transition to adult-orientated health care

“…A survey of pediatric rheumatologists in the Childhood Arthritis and Rheumatology Research Alliance and a survey of transition practices and attitudes among adult rheumatologists in the American College of Rheumatology (ACR) revealed low provider familiarity with transition resources and recommendations, inadequate training in the transition issues of YA, and lack of the necessary time and available personnel to facilitate the transition process. 16 , 17 Insufficient communication between pediatric and adult providers can impede successful transition and decrease the quality of patient care. As part of the ACR survey, nearly half of the adult providers reported dissatisfaction with the patient information they received from the pediatric provider.…”

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study

“… 9 10 Unmet training needs in both paediatrics and adult specialists perpetuates the clinical challenge of transitional care. 11 12 Forty-five per cent of adult rheumatologists reported no transitional care training in recent data from the USA. 11 …”

“… 11 12 Forty-five per cent of adult rheumatologists reported no transitional care training in recent data from the USA. 11 …”