In this guest blog, Arvind Nagra, Consultant Paediatric Nephrologist and Clinical Lead for Transition at Southampton Children’s Hospital, shares evidence and experience on empowering young people with long-term conditions as they move towards adult health services.
Patients often refer to the move to adult services as “falling off a cliff” into the unknown” and find the whole idea frightening and daunting. I received a couple of texts from the mother of a young woman called Katie, describing some of the challenges and successes of moving towards adult care with a long term condition. Katie is 17 years old and was diagnosed with kidney disease when she was 8 years old. She will soon need a kidney transplant.
“Following events of last week, I now really appreciate the importance of transition! Sadly when in Scotland last week, Katie on her 17th birthday! became very ill with sickness. We drove across the highlands to Inverness hosp. Staff were great but coz k was just 17 that day, in Scotland she was an adult…so was put on adult ward..Quite difficult for her as all other patients v old- a real reality check for life going forward. And hard to prepare our teenagers for this huge leap. Happily k recovered and we celebrated her birthday in Scotland 2 days later. But just to say…without ready steady go (RSG)…I think k and me would have really struggled to adapt to adults. It was hard but we coped! So thank you for RSG! “
“.something cheerful. Katie came back from her college trip to Iceland last night. She had a fantastic time:-) she managed her medication, food and fluids fine. Her tutor said Katie was great. One of her room mates had recently been diagnosed with a serious medical condition and k said it was nice as she was able to help her as she understood:-) A huge step towards independence for her.”
Katie confidently jumping off a cliff into the deep sea (with the right skills and equipment!)
Happily for Katie and her family- Katie is happy to jump off that cliff – after appropriate safety checks!!! Both she and her family are confident that she now has the skills and knowledge to manage her condition in adult services. Katie’s confidence has been achieved by working through a structured transition programme called Ready Steady Go (RSG). Information about RSG, including a patient information video, can be found atwww.uhs.nhs.uk/readysteadygo (1; see also 2) and you can read more about it later in the blog.
What is transition?
As a health professional involved with transition for over 10 years I use the following working definition of transition: a process of empowerment which equips young people with the knowledge and skills necessary to manage their own healthcare in paediatric and adult services whilst ensuring the adult team are engaged and ready to receive them. Transition should be a gradual process of empowerment for both patient and carers that allows the young person (YP) to gain the confidence to fulfil their own unique potential for managing their long term condition.
What’s the evidence for transition?
Studies have shown that morbidity and mortality increase for Young Persons (YP) following the move from paediatric to adult services when there has been little or no transition (3, 4, 5). Effective transition has been shown to improve long-term outcomes (6, 7, 8, 9) and to improve YP and carer experience as happened for Katie. The conclusions of a recent Cochrane review (10) support the need for an effective transition programme to deliver transition for YP moving to adult services. The review goes on to say that they could only identify four studies, involving 238 people with a limited number of clinical conditions, to evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services. There was evidence of improvement in patients’ knowledge of their condition in one study, and improvements in self-efficacy and confidence in another. However, since few studies were eligible for this review, and the follow-up periods of the studies were short ( 4 months – 12 months) the reviewers concluded that the overall certainty of the body of this evidence was low as the data provided was inadequate to determine either the full impact of the interventions or the sustainability of the outcomes.
A document published in 2014 by the Institute of Public Policy Research (11) also recognised the importance of empowering adult patients with a long term condition as evidence shows improved outcomes and anticipated reduced costs to the NHS. The sister programme to RSG for use in adult services called ‘Hello to adult services’ helps to deliver holistic care and empowerment for these patients facing the challenges of living with a long term condition.
Despite the evidence of the risks associated with a poorly managed move to adult services and availability of potential solutions, studies continue to show that the move remains ad hoc and an unsatisfactory experience for a significant number of YP and their families.
Successful transition: obstacles and solutions
Some healthcare professionals report they have transition arrangements in place but on closer examination it appears that they are simply transferring the YP to adult services with no empowerment of the YP or carer- this is transfer not transition
Others report they are unable to start transition as they do not have a transition nurse or transition clinic set up. I would argue that, with an appropriate programme, empowering YP and equipping them with the knowledge and skills to manage their healthcare can occur in any clinic.
There are some who state that transition cannot occur without the presence of an adult physician in the paediatric clinic. Joint clinics with the adult team are the ideal but transition should not be delayed due to the non-availability or identification of an adult team. Transition should focus on preparing the YP for the adult service whilst an adult team in primary, secondary or tertiary care is being identified. Those YP that are being transferred to primary care for long term follow-up should undergo the same transition process.
Some healthcare professionals and carers assume that YP with significant learning difficulties are not able to be involved in the transition process. However, studies show these young people should also be prepared for adult services as much as they are able, whilst at the same time also empowering their carers. For many of these YP the carer will continue to be their advocate in adult services.
It is a common belief amongst some healthcare professionals that transition should start a year or so prior to transfer to adult services. Studies show that starting transition at around 11 to 12 years of age leads to better knowledge and skills resulting in improved long term outcomes. For many YP this is also a time of change as they are moving from junior to secondary school, are ‘feeling like big boys’ and girls’ and are ready to take more responsibility.
Another common assumption amongst some paediatricians is that their specialty and locality requires a unique approach to transition. Yet many of the issues faced by YP during transition are generic regardless of the nature of their long term condition. This allows a generic programme to be adopted. In Katie’s case she was able to provide support and empathise with another YP of her age diagnosed with a long term condition.
The Ready Steady Go (RSG) programme
RSG is a generic programme that uses a holistic approach addressing the medical, psychosocial and vocational needs of the YP within YP friendly services. RSG empowers YP by equipping them with the knowledge and skills necessary to manage their healthcare in paediatric and adult services. Empowerment is a major part of transition as recognised in the Cochrane review. RSG also recognises that the patient’s family/carers are essential to the delivery of effective transition. .
RSG delivers high quality transition for YP across all sub-specialties which is in line with recent publications on Transition. RSG is easy to implement and requires very little additional resource. It has been widely and enthusiastically adopted across the UK and is leading to cultural change in healthcare practice where implemented – both nationally and internationally.
Cable and Davis (6) conducted a service evaluation of the ‘Ready Steady Go’ transition programme in YP with type 1 diabetes. They compared the outcomes of using the structured RSG programme (only had time to do ’Go’) and compared it with no structured programme. They found more than a 50% reduction in diabetes related hospital admissions and an increase in the number attending adult outpatient clinics in those on a structured transition programme compared to those not on a structured programme. They anticipate showing better diabetic control with an improvement in HbA1C now that they have started to use RSG at an earlier age – so watch this space!
The beauty of the RSG programme is that it is a generic programme that can be used for any long-term condition- with no age or sub-speciality barrier. This allows the healthcare team and YP with a long-term condition that involves multiple specialties, to use a single transition tool. It also enables the YP to experience supportive camaraderie through being on the same programme as their peers.
RSG is helping many young people, including Katie, gain the confidence to make their voice heard, be involved in their healthcare and be their best selves.
A final word from mum on where Katie is having completed ‘Go’:
“Katie is now extremely confident in clinic on her own. She is fearless to ask questions. She will argue her case and disagree if she feels appropriate! Katie completely understands her medication. Katie is empowered to live life to the full and challenge future expectations!”
Conflict of interest : The Ready Steady Go materials were developed by the Transition Steering Group led by Dr Arvind Nagra, paediatric nephrologist and clinical lead for transitional care at Southampton Children’s Hospital, University Hospital Southampton NHS Foundation Trust based on the work of: 1. S Whitehouse and MC Paone. Bridging the gap from youth to adulthood. Contemporary Pediatrics; 1998, December. 13-16. 2. Paone MC, Wigle M, Saewyc E. The ON TRAC model for transitional care of adolescents. Prog Transplant 2006;16:291-302 3. Janet E McDonagh et al, J Child Health Care 2006;10(1):22-42.
References:
Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, While A, Gibson F. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews 2016, Issue 4. Art. No.: CD009794. DOI: 10.1002/14651858.CD009794.pub2.
Additional references can be found here.