Janet E. McDonagh

Growing up and moving on: Transition from pediatric to adult care

Abstract:  The development of transitional care is one of the major challenges for the twenty‐first century as the survival rates and medical outcomes for child and adolescent recipients of transplants continue to improve. Such developments must include both paediatric and adult providers and is likely to require training of professionals in both arenas. Transition is a multidimensional process with transfer to adult care, only one event within that process. The aim of this paper is to present the philosophy of transition and an evidence‐based approach to transitional care in terms of the need for it, proposed models of care and the evidence of the benefits of transitional care programmes. Examples of some key clinical aspects of transitional care including communication skills, parenting, self advocacy, vocation will be presented. Adherence issues will be presented in accompanying papers in this journal. Finally, potential barriers to successful transition will be explored.

Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis:

This article describes the development and initial evaluation of an evidence-based transitional care programme recently implemented in a multicentre controlled trial in the United Kingdom. The individual components of the programme are described. Evaluation of the acceptability and utilization of these components employed questionnaires administered to users (adolescents with juvenile idiopathic arthritis and their parents) and providers (rheumatology health professionals). The results confirm the acceptability and utilization of the programme components in addition to further innovative developments during the course of the study. In conclusion, the evidence-based transitional care programme components reported here are acceptable and useful to both user and provider and are potentially feasible in clinical practice in a revised format.

Lost in transition? Between paediatric and adult services

Its time to improve the transition of adolescents from paediatric to adult services

Disease activity, severity, and damage in the UK juvenile-onset systemic lupus erythematosus cohort

OBJECTIVE The UK Juvenile-Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. METHODS Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n=198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. RESULTS Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4-14.5 years). Male patients were younger than female patients (P<0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non-Caucasian UK patients (P<0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. CONCLUSION The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease-associated damage could be seen.

Growing up and moving on. A multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care

Objective: To assess the provisions made for the transfer of adolescents with juvenile idiopathic arthritis to adult rheumatology clinics in the UK and the impact of a transitional care programme. Methods: An audit of the documentation of the provisions made for transfer in 10 centres participating in a controlled trial of transitional care. Each centre conducted a retrospective case note audit of the recent patients transferred to adult care before and 12–24 months after the start of the trial. Demographic details, age when transition was first discussed, age at transfer, transitional issues, multidisciplinary team involvement, adolescent self advocacy, and readiness were documented. Results: There were improvements at follow up in documentation of transitional issues, disease specific educational needs, adolescent readiness, and parental needs with the exception of dental care, dietary calcium, and home exercise programmes. The age at which the concept of an independent clinic visit was introduced was lower (mean (SD): 16.8 (1.06) v 15.8 (1.46) years, p = 0.01) but there were no other changes in age related transitional milestones. Significantly more participants had preparatory visits to the adult clinic, had a transition plan, and had joint injections while awake at follow up. Conclusions: The improvement in documentation suggests that involvement in the research project increased awareness of transitional issues. The difficulty of changing policy into practice was highlighted, with room for improvement, particularly at the paediatric/adult interface. The reasons for this are likely to be multiple, including resources and lack of specific training.

Transition of care from paediatric to adult rheumatology

The origin of paediatric rheumatology in the UK mainly lies in adult rheumatology and this has proved invaluable in terms of transition provision, education and training, and collaborative research. The last 5 years have seen adolescent rheumatology gather momentum with the creation of an objective evidence base, a sound foundation for future work addressing the many unanswered questions and hypotheses in the area of transitional care. The aim of this paper is to review the evidence supporting the recent developments in transitional care within rheumatology. Acknowledging the non-categorical nature of transition, the author will also refer to evidence from other chronic illnesses which has informed these developments.

Transitioning care of the pediatric recipient to adult caregivers.

The development of transitional care is one of the major challenges for the twenty-first century as the survival rates and medical outcomes for child and adolescent recipients of solid organ transplants continue to improve. Such developments must include pediatric and adult care providers and require training of professionals in both arenas. Transition is a process in which the transfer to adult care is only one event within that process. The key elements of transition for pediatric recipients are discussed, and the importance of a coordinated, structured, multidisciplinary approach involving the adolescents themselves is highlighted.

Development of additional autoimmune diseases in a population of patients with systemic lupus erythematosus

OBJECTIVE In view of the recognised clustering of autoimmune diseases (AID), the chronology of development of other autoimmune diseases in systemic lupus erythematosus (SLE) patients was considered. METHODS A retrospective review of a well documented population of 215 patients with SLE was undertaken. The duration of follow up ranged from 2 to 18 years. RESULTS Of these 215 patients, 65 (30%) had at least one other AID—including 51 (24%) having one other AID, 12 (6%) having two and two (1%) having three other AID in addition to their SLE. Twelve different autoimmune diseases were identified. The majority of patients developed a further AID after SLE had been diagnosed (62%) reflecting the relatively early age of onset of SLE. There was no significant difference in the age of onset of rheumatoid arthritis, Sjögrens syndrome and hypothyroidism that had developed before SLE compared with those who developed these diseases after SLE. However, those who developed autoimmune thrombocytopenia (AITP) before SLE were significantly younger than those who developed AITP after SLE (16.7 v38.7 years respectively, p<0.05). CONCLUSIONS Physicians caring for SLE patients should remain alert to the possible development of a second AID during follow up. Further well matched case-control studies are required to define the exact relation between SLE and other AID.

Report of a Muscular Dystrophy Campaign funded workshop Birmingham, UK, January 16th 2004. Osteoporosis in Duchenne muscular dystrophy; its prevalence, treatment and prevention.

A Muscular Dystrophy Campaign funded workshop to look into the potential problems of osteoporosis occurring in boys with DMD treated with steroids took place in Birmingham (UK) on the 16th January 2004. Fourteen participants met from varied backgrounds including, paediatric neuromuscular disease, neurology, paediatric and adult metabolic bone disease, paediatric rheumatology, genetics, physiotherapy and medical physics together with a representative from the Muscular Dystrophy Campaign. The aims of the workshop were to assess the evidence for the risk of osteoporosis in Duchenne muscular dystrophy (DMD), to assess the adverse effects of corticosteroid (steroid) treatment relating to bone mineral density and longitudinal growth and to assess the current evidence for the prevention and treatment of osteoporosis. Steroids are increasingly used in boys with DMD following the evidence from randomised controlled trials on their short-term benefit. However, the balance between long-term benefit and side effects has not been established. Long-term steroid use may be associated with significant side effects including weight gain, growth failure, cataracts and osteoporosis, so the development of strategies to prevent or treat these complications is important. We reviewed the literature to determine

The challenges and opportunities for transitional care research

McDonagh JE, Kelly DA. The challenges and opportunities for transitional care research.
Pediatr Transplantation 2010: 14:688–700.