Today was the first day of the British Society for Paediatric & Adolescent Rheumatology (BSPAR) annual meeting and the organizers had done a fantastic job of filling the schedule with very interesting (and entertaining!) presentations. Important issues such as patient sexual health, uveitis and the usefulness of ultrasound for paediatric rheumatologists were covered.
However, the key theme that seemed to run throughout the day was the issue of transitioning patients to adult care and maintaining continuity of care.
The day started off with a presentation by Polly Livermore from Great Ormond Street Children’s Hospital in London who outlined the key functions and duties of an advanced practitioner nurse and how such a position helps in running paediatric rheumatologic departments more efficiently. Other presentations throughout this session also highlighted the importance of support medical staff, such as youth workers, to delivering the best quality care and maintaining continuity of care.
There was also a presentation by Dr John Ioannou, also from Great Ormond Street Children’s Hospital, who talked specifically about integrated transitional care for juvenile patients with rheumatologic diseases. Sociable Pharma’s recent primary research found that patient transitioning is one of the key challenges doctors face in their practice, and that there are numerous ways of dealing (or not) with this issue.
The importance of maintaining continuity of care seems a straightforward issue; however, some of the knock-on consequences are not immediately apparent. If patients are not guided through the critical period when they are no longer treated within a paediatric setting but are not yet assigned an adult specialist, they can ‘fall through the cracks’ of the medical system. The consequences of that can include poorer treatment outcomes, possible disability and increased medical costs when the patient re-enters the system.
Dr Ioannou’s presentation also drew attention to two other important factors. First, patients whose transition is not appropriately managed are exposed to additional stress and there is currently some evidence that suggests this may increase the rate of disease flare-ups. Additionally, if patients are not guided through to their adult specialist, they can be missed from continuing in cohort studies. The presenters all seemed to agree that these studies are an incredibly important evidence source for long-term outcomes. Without optimal transitioning, it is almost impossible to keep track of the patients involved when they move to the adult treatment setting.
Dr Ioannou shared the experiences of his team and outlined some best practice insights into managing adolescents transitioning to adult care.
The key points from his practice are:
1) The importance of close collaboration between adult and paediatric rheumatologists; in his practice they jointly run clinics during which patients are introduced to the adult rheumatologists by their paediatric specialist. This allows patients to become more comfortable with their new team and can facilitate the transition to adult care. Dr Ioannou pointed out that simply having a familiar face when the patients first come to see them in the adult setting can have a big impact.
2) The transition should be individualized and coordinated by a specified member of staff
3) A dedicated adolescent clinic has been set up and patients are transitioned directly into this dedicated service for young adults. This ensures continuity of care during the critical period.
4) A nurse was hired to work specifically with young adults and to help with transitioning patients. She attends both the adult and adolescent clinics, and she runs a service dedicated to young adults. She also facilitates the coordination of any research that is being undertaken.
Tomorrow is set to continue with an agenda full of interesting talks and we will report more about what was discussed at BSPAR in future blog posts.