The aim of developing and implementing the Newcastle Adolescent and Young Adult (AYA) transitional care service was to improve AYA’s experience of transition by providing age-appropriate care in an age-appropriate environment. This is a rheumatology specific service but has potential for application to other chronic diseases. The service is in keeping with NICE Guidance (NG43) on transition from children’s to adults’ services for young people using health or social care services and the overarching principles set out in Section 1.1 and the associated Quality Standard (QS140) Statement 1 for planning transition. Improvements to the service include:
- The opportunity for AYAs to meet members of the transitional care team and discuss transition in the paediatric setting prior to transitioning to the AYA transitional service
- The opportunity for AYAs to attend the local peripheral clinic (which is easy to access and is a ‘Young Adult Friendly’ clinical space which has achieved Department of Health ‘You’re Welcome’ accreditation)
- The opportunity for AYAs to book appointments with the transitional care team in the evening so patients can be seen at a time that suits them.
The new service has the potential to improve non-attendance rates, compliance, self-management and ultimately clinical outcomes.
Aims and objectives
To improve AYA’s experience of transition by providing age-appropriate care in an age-appropriate environment in keeping with NICE Guideline (NG43) and Quality Standard (QS140) and to gain a deeper understanding of what AYAs want from a transitional care service.
- To evaluate what AYAs felt about the pre-existing transitional care service
- To implement changes to the transitional care service
- To obtain Department of Health ‘You’re Welcome’ accreditation
- To evaluate the new transitional care service and to gain a deeper understanding of the specific health care needs of AYAs.
- To audit the transitional care service against NICE guidance (NG43 and QS140) and EULAR standards and recommendations for transitional care
- To empower a group of AYAs who attend the transitional care service to present research data at the national rheumatology conference.
Reasons for implementing your project
When I began running the AYA clinic in 2014 I conducted a small action research project utilising patient questionnaires in order gain an understanding of what AYAs felt about the service. Results from this action research demonstrated that AYAs valued a transitional care service with some continuity between paediatric and adult healthcare that, at the time, I was not able to provide. It also confirmed my suspicion that many AYAs felt that the clinic at the Freeman Hospital was not ‘Young Adult Friendly’ and did not fit in with Department of Health ‘You’re Welcome’ criteria or NICE guidance.
AYAs were being seen in the paediatric service before being transferred across to the adult service. AYAs reported that they would have liked the opportunity to meet me prior to attending the service at the Freeman. AYAs did not like the clinical environment at the Freeman Hospital consisting of a corridor that was accessed by walking through the rest of the musculoskeletal outpatient department. AYAs also reported that they would like access to appointments in the evening and that car parking at the Freeman Hospital was difficult and expensive. Other areas that needed work included understanding of confidentiality, how to make comments and suggestions and information on display regarding sexual and mental health.
I realised that the AYA service needed redesigning and redeveloping into a transitional care service to fit with the needs of the patients. I created the Newcastle transitional care service with an aim to integrate age-appropriate care in an age-appropriate setting and improve the AYAs experience, and hopefully the clinical outcomes, of transition in the North East.
How did you implement the project
Developing and implementing a new AYA transition service required a number of steps:
- I ensured my learning was up-to-date by completing the EULAR on-line course in paediatric rheumatology and attending the EuTEACH Adolescent Health Summer School.
- I began attending adolescent clinics at the Great North Children’s Hospital (GNCH) in order to meet AYAs who were transitioning across to the adult service in Newcastle.
- I set up a peripheral clinic alongside a rheumatology specialist nurse with an interest in adolescent health in a local primary care setting that allowed me to run clinics into the evening and was easily accessible to AYAs (situated right next to a metro station and with ample and free parking)
- I set up and began chairing regular NEAR (North East Adolescent Rheumatology) meetings in order to build a network of interested rheumatologists in the region and to share learning and expertise.
- I applied for and obtained a pharmaceutical grant of £40,000 that allowed me to employ a social scientist to conduct some robust qualitative research looking at what AYAs wanted from a transitional care service and to implement further changes.
- Results from this qualitative research were presented at the national rheumatology conference (BSR) by AYAs who attended the clinic and were involved in the research.
- I built links with adolescent rheumatology bodies such as BSR-BSPAR and BANNAR.
- I obtained Department of Health ‘You’re Welcome’ accreditation for the AYA transitional care clinic (which included work on displaying information on a number of topics including confidentiality as well as mental and sexual health.
- The service is currently being audited against NICE transitional care guidance (QS140 and NG43) and European standards of care.
YAs aged between 16-24 and receiving care for Juvenile Idiopathic Arthritis (JIA) were invited to participate in focus groups or individual face-to-face or telephone interviews (between March-October 2016). These groups were led by a social scientist experienced in qualitative research methods.18 YAs participated (16 females and 2 males) as well as 5 nurses from paediatric and adult services.
Results from the qualitative research evaluating what AYAs wanted from a transitional care service could be separated into three main themes:
- The approach to YAs
- Physical space and environment
- What YAs want from a YA service.
AYAs valued the interpersonal approach of the local transitional care service and it made then feel recognised as a unique patient group. They reported that the transitional care team worked with them to foster independence and a good quality of life. AYAs valued being given a choice in decisions being made about their care and flexibility with which their treatment plan is being developed and agreed upon. They felt that the approach taken by the transition team allowed them to feel in control of their condition.
AYAs valued the clinical environment and flexibility provided by the local transitional care clinic. They found the primary care setting to be less intimidating than a hospital setting and it helped them to perceive their condition as less daunting.
AYAs identified several key elements that they view as important in a transitional care service. These included access to peer support, age-appropriate and up-to-date information about their condition (as well as signposting how to access this information), flexible ‘light touch’ support and a flexible appointment structure.
The local transitional care service is characterised by:
- Recognising AYAs as a unique and distinct patient group.
- Treating AYAs within their wider psychosocial context and taking into account life changes that shape this particular group.
- Aiming to provide AYAs with flexible, person-centred health-care in a non-hospital setting, therefore contributing to normalising their condition and increasing confidence in self-management.
Due to the nature of this service development and implementation project as well as its qualitative evaluation, improvements are difficult to quantify although I feel it has improved non-attendance rates and therefore potentially compliance, self-management and ultimately clinical outcomes. Evidence of quality service provision has been demonstrated by results from service evaluation audits but most importantly from the qualitative research project. The results of this research were presented at the national rheumatology conference this year by AYAs who attend the transitional care service.
Key learning points
Paediatric and adult health care services approach AYAs differently. Some of these differences have a real impact on how AYAs view their condition and the health care they receive, expect, and require. Some AYAs (especially those who have been diagnosed at a young age and have received most of their health care in a paediatric hospital) are used to a caring, well-resourced, person-centred environment that they experience as comfortable and sometimes describe in familial terms. AYAs often find the experience of moving into adult health care as somewhat of a shock.
Transitional care services, whether in rheumatology or any other medical specialty that deals with AYAs with chronic conditions, should recognise AYAs as a unique patient group. They are often a challenging group of patients to manage but ultimately are also extremely rewarding. Services should treat transitioning AYAs within their wider psychosocial context and aim to provide flexible, person-centred health-care in order to ‘normalise’ their condition and increase confidence in self-management.
There are a number of outcomes from the AYA service development project that are currently being addressed by on-going work. These outcomes include:
- Establishing a peer support system (either online or face to face)
- Developing introduction packs for AYAs who are transitioning to the service to include age appropriate information
- Establishing and promoting good links and communication between health care teams across regional rheumatology paediatric, transitional care and adult services
- Expanding the use of technology in contacting and connecting with AYAs
- Training and educating health care professionals involved in AYA care to promote a ‘youth friendly’ environment
- Re-auditing the service against NICE transitional care guidelines (QS140 and NG43) and European standards of care
I applied for and was awarded a grant of £40,000 from pharmaceutical companies (Abbvie, Roche and UCB) for the AYA transitional care service development project.