The role of the multi-disciplinary team (MDT) in Gastroenterology: The Transition Experience in IBD Care
June 11, 2021 | Mary Hamzawi
Mary Hamzawi is a paediatric nurse, working in adult medicine since July 2018. She has fifteen years’ experience in an Inflammatory Bowel Disease (IBD) Nurse Specialist Role. She has been instrumental in putting systems in place to improve patient care and promote better outcomes for people living with IBD, especially adolescents. She works at the Centre for Colorectal Disease, St Vincent’s University Hospital in Ireland.
Transition has been defined as "a multi-faceted, active process that attends to adolescents' medical, psychosocial, and educational/vocational needs as they move from child to adult centred care" (Blum et al., 1993).
Adolescence is a time of significant change, and these young people are shaping their own identity, achieving independence from parents, starting relationships outside the family, and planning their future. According to WHO (2004), adolescents' critical challenges include injuries from risk-taking behaviour, sexual and reproductive health, unhealthy behaviours related to substance misuse, poor diet and physical activity. Mental health disorders are the second largest cause of Co-morbidity in adolescents. Transition is an essential milestone for adolescents with Inflammatory Bowel Disease (IBD) as the impact of living with a chronic disease can extend beyond physical manifestations.
In Ireland, adolescents with IBD transition to adult services aged 16 years. I have worked as a clinical nurse specialist (CNS) in paediatric gastroenterology since 2006. I worked in a busy national tertiary referral centre catering for children with IBD from all over Ireland. IBD in children is a complex disease, and management involves making sure the child and their family understand the condition and its implication on HRQOL. Achieving remission and sustaining it is a priority in management. Awareness of the need to move on to adult services is also critical and ensuring the adolescent and their family are ready is essential.
Within the paediatric service, we took a progressive approach in establishing strong working relationships with our adult colleagues and, where possible, setting up transition clinics. For adolescents, the need to move on to a new healthcare team can compound the already difficult transition to adulthood, leading to non-compliance and adverse clinical outcomes. Adolescent-friendly health services are needed to address these challenges and promote optimal health for young people, reducing the health services burden.
My experience from paediatrics is that children often allow their parents to manage their disease and do not take any self-management responsibility. As the child grows closer to transition time, we encouraged self-management and seeing the adolescent independently for periods at clinic review. Families develop strong, trusting relationships with their paediatric team, and this can cause anxiety when moving on to adult services. Research has demonstrated building trusting relationships with the adult team to be one of the most beneficial contributors to patient outcomes.
Transition clinics, where the adult consultant and nurse specialist attend a paediatric hospital clinic, are very beneficial, to meet those transitioning in the coming months. Adolescents and their families are reassured when they meet the adult team in the paediatric hospital's familiar surroundings. The paediatric nurse specialist will then attend the patient’s first adult hospital clinic appointment, providing a familiar face.
As a CNS, I moved from paediatric to adult IBD service two and a half years ago, and the move has had a more significant impact on me than I expected. I was naïve and did not expect to feel as isolated as I did. The hospital's size alone intimidated me; the number of patients seen at a clinic within a designated time, the availability of resources (colonoscopy and IV therapies) and the can-do attitude was inspiring. However, I was concerned the lack of a multidisciplinary team approach may be impacting the younger patient cohort. Paediatric gastroenterology care is multidisciplinary (MDT) and focuses on all aspects of patient’s needs. There is an emphasis on growth and development. Reaching puberty and true height potential is an important outcome.
The adult gastroenterology department is a university-affiliated unit in a Joint Commission accredited (JCI) hospital. It provides high-quality inpatient and outpatient care for the full spectrum of gastrointestinal diseases. Almost 5,000 patients attend the IBD service, and only circa 300 patients are between 16-24 years old
The gastroenterology team was more extensive than any I had previously worked with. As well as IBD specialist consultants, there is an incredible resource of specialist registrars and research registrars. Shortly after my arrival, the team appointed a dedicated clinical psychologist for IBD patients, giving me the perfect opportunity to discuss this younger patient cohort's needs.
There was no dedicated dietitian at this time. However, we were very fortunate in that the dietitian allocated to GI was interested in IBD and very happy to come on board in reviewing the possibility of developing a young person's clinic for 16-24year olds with an MDT approach. We discussed the prospect with the consultants who approved the project. One of the barriers addressed was the small patient numbers, considering the time investment from the MDT.
Developing a multidisciplinary pathway to include dietetic, psychology, surgical and nursing input at outpatient clinics would provide a holistic approach to care. This early intervention will lead to better engagement, compliance thus improving the adolescents' quality of life, empowering them with appropriate support and knowledge.
We decided to do a pilot study on the next group of adolescents transitioning into the service and followed their journey for a year. In 2019, 8 patients transitioning into the IBD service were assigned to the pilot structured MDT pathway. The first meeting included a 'meet and greet' session where each team member briefly introduced themselves and their role. Review by consultant followed this. The adolescent met with the Consultant, Clinical Nurse Specialist, psychologist and dietitian at subsequent clinic appointments. Adolescents and their parents completed short patient experience questionnaires after each visit.
At the end of the year, excellent satisfaction rates were reported by those attending. Nonetheless, 50% of adolescents preferred to see the consultant only at clinics. This finding has not been further investigated. It could be that this very young patient cohort is well and has no interest in discussing their disease or in attending a clinic and want to leave quickly. 37.5% opted for full MDT review, and 12.5% requested psychology input plus consultant at clinic appointments. Parents felt they would benefit from more information about the hospital and service before they arrived.
We have subsequently completed a welcome booklet, which has received very positive feedback from colleagues and new adolescents to the service and their parents. It also secured support from the Irish Health Service Executive Spark funding towards printing costs. HSE Spark funding allocates funding to a select number of new innovative projects in healthcare. The aim is to launch the booklet on the gastroenterology department website. Following on from the one-year pilot study, the MDT is currently conducting a pilot RCT over two years reviewing patient outcomes to steer the young person IBD clinic's design for 16-24 year olds.