Health care transition counseling for youth with arthritis: Comment on the article by Scal et al


Health care transition counseling for youth with arthritis: comment on the article by Scal et al

To the Editors:

There is an urgent need to develop the evidence base to support developments in transitional care (1). We therefore welcome the article by Scal et al on transition counseling recently published in Arthritis Care & Research (2). Acknowledging the differences between health services in the UK and the US, we would like to comment on the issues raised by the authors and share some related data from the UK.

The authors investigated parental reports of whether adolescents received information from providers about how their health needs will change in adulthood, prior to transfer. A key aspect of any such discussion is likely to include disease prognosis. As part of the UK multicenter, transitional-care research project referenced by Scal et al (3), a specifically developed knowledge questionnaire was completed by 308 adolescents with juvenile idiopathic arthritis and 301 of their caregivers. At baseline only 23.8% and 13.1% of adolescents and care givers, respectively, gave correct answers to simple questions regarding prognosis and only 48.3% and 13.1%, respectively, identified the name of their condition in adulthood (4). Educational interventions need to encompass such topics and address them in a timely and developmentally appropriate manner, particularly with respect to younger adolescents who have not yet developed abstract thought including the ability to imagine the future. In our study, participation in a transitional care program (5) was associated with a significant improvement in disease knowledge of both adolescents and parents (P < 0.001) (3).

Scal et al discuss the limitations of using parent-proxy data, particularly for young people seen independently in clinics. In the previously mentioned UK study (3, 5), disagreement between adolescent and parent-proxy reports was observed in 50% of pairings (6). The knowledge of parents (n = 303) was also significantly better than that of adolescents (n = 308) (P < 0.001) regardless of age (3), and although this represents a key resource for young people, it remains important that developmentally appropriate education programs be delivered specifically for young people themselves. Furthermore, we have observed a significant increase (from 25% to 80%) in the number of young people choosing to be seen independently at visits following the integration of our transitional care program into routine clinical practice (7, 8). The authors are to be congratulated on the presentation of data from “real life” rather than research settings. Since the time of our original study, we have faced the challenge of the translation of the transitional care programs into routine clinical practice within a large multidisciplinary team. In a recent audit of our service, 34% of 16-year-old patients did not yet have a documented target age for transfer, and 26% had not participated in a discussion of the target adult service (9). Our current institutional policy is to transfer patients between 16 and 18 years of age.

Scal et al note a further limitation of their survey in that it omits the psychosocial and vocational dimensions of transitional care. The paradigm shift from a medical model of care to a resilience-based model, which promotes healthy youth development (10) concomitant with specific disease management, will require a significant change in mindset for many clinicians. In the previously mentioned audit, although 80% of 16-year-old patients had a career plan, only 14% had held a part-time job (9) and this percentage is considerably lower than the 40% reported in their healthy UK peers (11). Both clinical practice and research need to consider the multidimensional nature of transition particularly with respect to outcome-based research.

Although the authors do not present data on the availability of coordinated structured transitional care programs, they do discuss key components of transitional care. This strategy echoes the sentiments of a recent review by Kennedy and Sawyer who warned against the disconnection of transitional care from the rest of adolescent health care (12). Transitional care is part of adolescent health, which ideally sits within both pediatrics and adult health care. Adolescent medicine is a recognized subspecialty in North America, but continues to be unrecognized as such in the UK. Adolescent health services therefore remain underdeveloped in secondary and tertiary care in the UK. It is anticipated that this situation will improve with the recent advent of a national e-learning adolescent health training initiative (, which includes modules on transition and chronic illness. This will be available to both pediatric and adult physicians and will hopefully address such deficiencies on the eastern side of the Atlantic.

Janet E. McDonagh MD, FRCP, MBBS*, Karen L. Shaw PhD*, * University of Birmingham, Birmingham, UK.