Background The transition from childhood to becoming an adult for those with a juvenile rheumatic disease can be challenging, having to cope both with the natural changes that comes with this age as well as tackling the impact of their chronic disease. Health care workers have a responsibility in supporting and enabling them in this process. Transitional care is not just the transition of patients from pediatric to adult care. It is a complex and ongoing process. In the recent years there has been increased focus on transitional care, and the literature is clear on the importance of this matter. The main focus in the literature has been in pediatrics, with preparing the adolescents before they are transferred to the adult rheumatology clinic. In our clinic, which is in adult rheumatology, we identified that we had challenges with patients transferring from pediatrics. They repeatedly did not show up for their appointment, and many patients did not adhere to their medical treatment, which can have a big detrimental effect on their current and future health status. Many patients indicated frustration about having to see different doctors and nurses each time they visited the clinic. The cooperation and communication between the pediatric clinic and our clinic was also not optimal.
Objectives The object of this project was to improve transitional care for patients with rheumatic diseases, with focus on continuity. Helping the young to become independent and capable of taking responsibility for their health, and improving cooperation and communication between pediatric and adult care.
Methods Developing a nurse led clinical pathway for patients aged 18 to 25 years in an adult outpatient rheumatology clinic, in collaboration with a multidisciplinary team, with cooperation from nurses and rheumatologists from both pediatric and adult care, a physiotherapist, an occupational therapist, a social worker and a patient representative.
Results The clinical pathway was approved in July 2014, and the work on implementing it in daily practice started immediately after this. The pathways timeline goes from the patients last visit in pediatric care, and until they turn 25 years. Shortly after their last visit at the pediatric clinic, the patients are contacted by their patient coordinator, who is a nurse in the adult rheumatology clinic, and who will be the patients primary contact. Patients meet their patient coordinator at every visit at the clinic. The patient coordinator also carries out individual nursing consultation replacing the rheumatologist consultations, with patients that fulfill certain criteria. There is a focus on continuity and multidisciplinary team work in the pathway. Patients are referred to physiotherapy, occupational therapy or social workers when there is an identified need. There is also ongoing work on developing an educational program as part of the clinical pathway.
Conclusions The clinical pathway improves transitional care for patients with juvenile rheumatic diseases. Our experience so far is that patients appreciate the continuity, and the role of the patient coordinator. Very few patients miss out on their appointments. We have experienced improved cooperation and communication between the pediatric and the adult clinic.
Disclosure of Interest None declared