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Transition in Epilepsy

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1 Transition in Epilepsy
The Transition of Patients with Epilepsy from Paediatric to Adult Care Services across the Aneurin Bevan Health Board Kostov, C., Lewis, H., Syed, N., Lawthom, C., James, L., Capeling, L., Spender-Thomas, K., Barber, M. Hello everyone. Thank you very much for inviting me here to speak today, I have learnt so much and met so many exciting new people over the last few days. It is an honour to be presenting myself. I am a 4th year medical student at Cardiff University, and will be presenting the results of an audit I completed in July. I had just 8 weeks to complete the audit from start (including planning) to finish, and had not yet studied Paediatrics or Neurology, so I am sure you can imagine it was quite a challenge to take on.

2 Personal Reasons for Interest in Audit
Paediatrics Personal experience of difficulties of falling between paediatric and adult care Similar age to those transitioning So why did I choose to do this audit as I had so little experience in the topic? I have always been passionate in Paediatrics, and wanted to do a project in that field. When my consultant suggested this audit, I reconated with the topics and problems she was describing, and new it was something I could relate to and immerse myself in. My brother fought cancer from the age of 18 to 20. He was on the adult oncology wards with people averaging 3 times his age, and being treated partly by paediatric oncologists, as he had a form of bone cancer mainly seen in children, and partly by adult specialists. Though the care he received was fantastic, the logistics of co-ordinating between several teams I am sure you can imagine was a nightmare. Needless to say he is all good and well now, 5 years on from this. As well as my personal experiences, I believe the fact I am of similar age to the participants in the audit affected my interpretations and furthered my interests for yielding this data.

3 Background - Epilepsy Newly emerging sub-specialism Paediatricians developing specialist interest Transition is recognized as an area for improvement in the care of young people with epilepsy1,2 In my project I focussed on the transition of patients with epilepsy from paediatric to adult care. As patients with epilepsy often have other co-morbidities, they can find transitions particularly challenging. Epilepsy is a fairly new subspecialism within paediatrics, and therefore services may be a little less well developed than in subspecialisms such as Diabetes Mellitus or Cystic Fibrosis. NICE and the Department of Health have highlighted transition as area for improvement in epilepsy care for young people.

4 Joint clinics are emerging as a way of facilitating the transfer to adult care
First teenage epilepsy clinic – Liverpool 1991 University Hospital of Wales, Cardiff (17 years) Specialist Tertiary Teenage Clinic ABHB – past 18 months An emerging solution to try and facilitate the transition of young patients with epilepsy into adult care has been the establishment of Joint Clinics. This allows the young adult to have an appointment with both their paediatrician and new adult neurologist before leaving paediatrics, enabling them to accustom to the different environment and also assisting with the transfer of key information. This also helps the young person and their families establish points of contact, to avoid them feeling lost between 2 systems. The First teenage clinic in the UK for epilepsy was set up in Liverpool in 1991. A slightly different clinic runs at the University Hospital of Wales, whereby they accept teenagers with complex epilepsies from various areas, and may follow them up in a joint clinic for a period of time. Over the past 18 months, the Aneurin Bevan Health Board, where I completed my audit, has been running joint clinic appointments for patients transitioning to adult care. This may be consultant or nurse-led.

5 It serves an estimated 21% if welsh population (5)
Aneurin Bevan Heath Bpard encompasses Gwent, Newport, Caerphilly, and Monmouthshire It serves an estimated 21% if welsh population (5)

6 “establish a transition care pathway
An Action Plan following the results of the ‘Epilepsy12’ National Audit suggested that ABHB: “establish a transition care pathway and to formalize handover clinics” 3 We set up an audit to review the effectiveness of these joint clinics. Also, feedback to ABHB from the results of local ‘Epilepy12’ Audit data suggested that ABHB establish a transition care pathway and formalize their handover clinics.

7 Objectives for Audit Current Practice Professionals’ perspectives
Views of patients and parents/carers In our audit, we wanted to appraise current practice for the transition of patients with epilepsy from paediatric to adult care, and seek the views of professionals involved, as well as patients and their carers. Professionals involved paediatricians with or without specialist interest in epilepsy, Adult neurologists and Learning disability consultants as well as Specialist Nurses in Paediatric and Adult epilepsy, and in learning disabilities.

8 Case ascertainment Learning Disability Transition Database
Records of notes of patients discharged from Paediatric Epilepsy Specialist Nurse services Learning Disability Transition Database Consultant-led & Nurse-led Transition Clinic Lists We wanted to include all patients who had transitioned between March 2012 – 2013 in our audit. Case ascertainment was quite difficult, as there was no database available for identifying the patients who had transitioned in the highlighted period, so we had to rely on a multitude of paper records. I spent a long afternoon searching through the notes of patients that the Paediatric Epilepsy nurse specialists had discharged, identifying those who had transitioned between March We also identified the patients who had attended a transition clinic. Lastly, we had access to a database which identified the patients with learning difficulties and epilepsy who has transitioned during the period. This yielded a total of 34 patients.

9 What we did: Case Notes Review Questionnaire to professionals
Questionnaire to patients and parents/carers Firstly, we did a case notes review of all the patients involved, focussing on letters of referral at the time of transition, and notes from a transition clinic or first appointment in adult clinic. 34 young people received a questionnaire by post asking about their experiences of transitioning to adult care, their opinions and their thoughts for improvements. This was either filled out by the young adult themselves if possible, or a parent or carer. 37 healthcare professionals received a questionnaire by , seeking their experiences and perspectives of the current transition procedures. 11 quastionnaires were returned by patients and carers, and 20 by professionals involved.

10 Results 19/34 (56%) of patients had learning disabilities
22/34 (62%) had other co-morbidities (Cerebral Palsy, Autism, Sensory impairment) 24/34 patients were referred: 7/24 (29%) of referrals made requested advice regarding diagnosis, investigations and medication Only 13/24 (54%) referrals made based on age alone 19 of our patients had learning disabilities, and 22 had other co-morbodities, notably cerebral palsy and autism. From this information, you can get an idea of just how difficult the transitioning from paediatric care is for this cohort of young people. At referrala significant number of Paediatricians wanted to ask advice from their adult colleagues. Only 13/24 (54%) referrals were based on age alone, whereas 7/24 (29%) requested advice regarding diagnosis, investigations or medications. Due to the difficulties with our case ascertainment, we identified some patients who had not yet been referred, and others who had been seen in joint/adult clinic but had no explicit referral in their notes.

11 First Appointments in Adult setting:
16/22 (73%) patients attended a joint clinic: 17/22 (77%) had additional problems recorded 15/22 (68%) had medications altered Only 3 patients had transitional planning meetings recorded 2 attended by educational / social workers Only 2 patients had a transition coordinator documented (62% had co-morbidities) 22 of our patients had evidence of an appointment in an adult setting for their epilepsy. Of these, 16 had attended a joint clinic. Here, 77% had additional problems recorded which were not mentioned in the referral letter, ranging from concerns over learning to drive, non-compliance with medications, and co-morbidities. NICE states all patients with epilepsy should have a transition coordinator allocated. It is advised that patients with complex health needs should have a transitional planning meeting attended by all agencies involved in their care at the time of transition Despite this, only 3 patients had transitional planning meetings recorded, of which only 2 were attended by educational and/or social workers. Only 2 patients had a transition coordinator documented. NB: Medications altered: 5 had a drug added, 4 had dose increased, 1 had dose reduced, 2 had decision made to wean off meds, 3 switched to a once daily formalation

12 73% of Paediatric Professionals rated current transition as ‘Poor’
What did Professionals Think? Questionnaires were returned by 11 paediatric and 9 adult professionals. As you can see from this graph, 8/11 (73%) paediatric professionals rated current transition practices in ABHB as ‘poor’. The response from adult professionals was more varied, but no professionals rated it as ‘very good’, 73% of Paediatric Professionals rated current transition as ‘Poor’

13 10/11 (91%) of paediatric professionals felt a transition proforma
Confusion regarding Referral Pathways… 1. All to Adult Neurologist (A) Based on complexity and control of epilepsy: (B) Based on learning disabilities: 2. Complex epilepsy to teenage clinic UHW, all others to adult neurologist 3. Complex to adult neurologist, well controlled to GP 4. Learning disability to Learning Disability/Psychiatry services and LD nurse, all others to GP Between 11 Paediatric professionals, 5 different pathways described Paediatric professionals were asked in an open text question to state their current practice for referral of patients with epilepsy Some responded that they refer all paediatric patients with epilepsy to an adult neurologist. Most paediatric professionals seemed to describe that they either decided whom to refer an epilepsy patient on the basis of the complexity and control of their epilepsy, or on the basis of their learning difficulties. The two options depending on the complexity of a patients epilepsy included sending them to UHW’s tertiary teenage clinic if severe, and if not to an adult neurologist; whilst other professionals were directing patients with well-controlled epilepsy back to the care of their GP, and all others to an adult neurologist. If patients had learning difficulties, professionals described that they tended to be referred to the Learning disability services. (C) Based on complexity/control of epilepsy & whether additional learning disabilities: 5. Learning disabilities to Psychiatrist, complex epilepsy to adult neurologist, all others to GP. 10/11 (91%) of paediatric professionals felt a transition proforma would be helpful…

14 Collaborative working between professionals:
Only 4/8 (50%) of consultant paediatricians felt they work closely with adult neurologists, and vice-versa 3/6 (50%). 4/9 adult and 4/11 paediatricians ran transition clinics Collaborative working between professionals is really important, and can be very complex at the time of transition. Only 50% of consultant paediatricians felt they work closely with adult neurologists, and exactly the same vice-versa. At handover, adult specialists identified that information was often “incomplete” and “variable” on the referral letters received. They wanted to know more about the medication history, diagnostic work-up and lifestyle of their new patients. At handover, adult specialists wanted to know about medication history, diagnostic work-up and lifestyle Information provided “incomplete” and “variable”

15 8/20 (40%) professionals had received training in transition
14/20 were aware of transition policies – only 3 felt able to adhere to them 40% of professionals described having received some sort of training of transition, whether it be set teaching days or seminars. 14 were aware of transition policies, but only 3 professionals stated that they felt able to adhere to the policies.

16 Main areas for improvement:
Views of Professionals Main areas for improvement: “Explicit transition care pathway” “Better coordinated approach between Paeds and Adult Neurology and Learning disability services, and health, education and social services” Professionals felt that the main areas for improvement were an “explicit transition care pathway”, and a “Better coordinated approach between Paeds and Adult Neurology and Learning disability services, and health, education and social services”

17 Views of Professionals…
“Current practice variable with no uniformity in provision of transition services” “It is crucial that ABHB recognize and support both paediatric and adult epilepsy services in the implementation of transition services/care” Furthermore, they felt that ““Current practice variable with no uniformity in provision of transition services” One professional emphasized that: “It is crucial that ABHB recognize and support both paediatric and adult epilepsy services in the implementation of transition services/care”

18 What did Patients and Parents Think?
45 % of patients and carers reported that they found their experience of transitioning to adult services difficult or very difficult. This tended to be the patients with comorbidities, but there was no real divide. 45% of patients and parents/carers found transition ‘difficult’ or ‘very difficult’

19 Several thought the process should have started much sooner
Some patients reported a “very traumatic experience” and found it “difficult to cope with change” Several thought the process should have started much sooner 6/11 (55%) attended joint clinics: 5 patients thought they were helpful One parent reported the “first appointment was useful then it drastically fell apart” Patients gave a spectrum of opinions about their transitions. Responses ranged from patients finding transition very difficult and traumatic, to feeling the process went quite smoothly. Several mentioned that they would have liked the process to be initiated much sooner. 5 of the 6 patients who attended joint clinics found them helpful. However one parent did expressthat he “first appointment was useful but then it drastically fell apart”

20 Did patients and parents/carers feel they received enough information?
This graph illustrates whether young people or their carers felt they received no, not enough or yes enough information of key topics highlighted by NICE as being important to cover during transition. The results only show patients who felt information would have been applicable to them. As you can see, information was particularly lacking in psychological/emotional support, sleep patterns and living allowance. These topics can all be very important for young people at such a critical stage of life. One young person did not tick any of the boxes but stated, “all would have been useful as nothing was discussed”.

21 6/11 (55%) of patients felt supported throughout their transition
5/11 (45%) felt in control of the process Young people’s views: “ I don’t think anyone feels in control as healthcare worker ‘knows best’ ” Only 55% of respondents said that they felt supported throughout their transition, and only 45% felt in control of their own move to adult care. One young person reported, “I don’t think anyone feels in control as healthcare worker ‘knows best” Another sadly stated that they would have liked better understanding and to be treated as an individual. “ I wanted better understanding and to be treated as an individual ”

22 Views of Patients and Parents / Carers
Difficulties faced in Adult Care: “Confusion regarding person responsible for providing/updating epilepsy care plan” “All therapies..severely curtained leaving [young person] more isolated and less likely to achieve any goals” Difficulties that young people and their carers faced in adult care included confusion regarding who was responsible for their care, and struggling as therapies and services were less readily available to them.

23 Views of Patients and Parents/Carers…
“Transition should start at 14 when multiple problems with at least two appointments with consultants from paediatrics and adults so that all information is handed over properly” “Information needs to be made more readily available..I did feel somewhat ‘in the dark’ ” As mentioned before, they felt that the process of transition should begin sooner rather than later, and also that they would have liked information to be more readily available and accessible for them.

24 “My paediatrician came to my first meeting
with the neurologist. This was helpful and ensured a seamless transition” Some patients and carers were very satisfied with their transition, particularly if they had had a joint clinic. One particular patient expressed, that their joint clinic was “helpful and ensured a seamless transition”

25 Discussion Transition is difficult for patients with epilepsy
Joint clinics are deemed successful by patients and professionals Transition overall is still rated poorly So as you can see, transition from paediatric to adult care is an incredibly difficult time for young people with epilepsy. Joint clinics are popular with both professionals and patients, but transition overall is still rated quite poorly by all those involved.

26 A process, spanning the teenage years.
Key elements for good transition: Patient centered transition plan All professionals working together towards a joint goal Training of professionals Resources So what do I think we need for transition to be successful? Having all care plans individualised and tailored to the needs of the specific individual being considered is crucial. Patients should be at the centre of their own transition, and should feel empowered that they are leading the journey themselves. All professionals involved should have methods for communicating and ensure they are working towards the same goal. Ideally, professionals would meet together to plan and discuss the transition, and a coordinator would be allocated. Training of professionals in transition processes is needed. This will also encourage a shift in attitudes towards recognizing the importance of good transition and the specific needs of young people with epilepsy. Resources are then needed to allow recommendations to be translated into clinics practice, and also provide adequate time and funding for the delivery of joint clinics. Most importantly, transition cannot occur in a single clinic, but should be a process that is introduced and set up early, to ensure patients are ready and confident for their transition to adult care. There will always be snitches at such a difficult time, but it is the joint responsibility of all involved to ensure this goes as smoothly as possible. A process, spanning the teenage years.

27 What is needed? Care pathways to be refined
Clarification of referral pathways Roles and responsibilities of professionals involved in transition clearly defined Access to joint clinics Efficient transfer of information So what can we do now? It is crucial that a transition Care pathway be refined locally, setting definite expectations for transition. To establish this, ABHB must collaborate with other centres and collate information. The specific needs of each patient such as the control of their epilepsy, extent of comorbidities, and professionals involved in care must be considered individually. Pathways should have input from all agencies involved so that there is a mutual understanding of what transition is and how it should be approached. This inclused referral processed and responsibilities of allprofessionals involved. A structured and consistent approach is needed to consolidate services and ensure uniformity & equality of care provided to all young people with epilepsy. Patients who could benefit should all have access to joint clinics. This could mean between epilepsy nurse specialists or consultants. Even those discharged to GP should still be introduced to the adult epilepsy nurse service, so that they can know how to access help and advice.

28 Limitations Case ascertainment – lack of database
Retrospective analysis Risk of bias with questionnaires Due to the lack of an epilepsy database there were difficulties with case ascertainment. However, I think the conclusions drawn from the project are applicable to ABHB, and possible to wider instances of transition clinics in other health boards, for epilepsy and possibly other conditions too, The retrospective case analysis renders our results dependent on the accuracy and completeness of medical records. There is a risk of bias based on which respondents chose to return questionnaires, though we seem to have obtained fairly mixed responses.

29 Conclusion Good elements emerging Scope for improvement
Proforma and formalisation of care pathways –clarification; promote equality of care Consider views of: Patients and parents/carers Professionals in primary health Paediatricians and Adult neurologists Learning disability services ..In medical and specialist nursing professions. In conclusion, transition in epilepsy services in ABHB shows good elements emerging, but there is definite scope for improvement. The formalisation of pathways is essential to standardise transition practices across ABHB and promote equality of care. Collaborative multi-agency working is key. Professionals should be consulted from primary health, paediatric and adult neurology, and learning disability services, in both medical and specialist nursing professions in order to create a working care pathway.

30 Care pathways to be refined locally,
collaborating widely specific needs of each patient - control of epilepsy, extent of comorbidities, professionals involved in their care. As was said before, we will collaborate widely to establish care pathways, and ensure that patients are each considered individually for transitional planning. ABHB are currently working on developing an electronic database for Epilepsy . This would have helped our case ascertainment & will enable patients to be identified as they approach transition age, for example at 14 years. ABHB are currently developing an electronic database - highlight patients approaching 14 years

31 Personal Reflections Difficulties of an Audit! Qualitative Data
Working between paediatric and adult teams Patients and parents forthcoming and grateful for giving feedback Huge amount of willingness and motivation for improvements What did I learn personally? The difficulties not only of doing my first audit, but doing it bridge between two different specialties. Collaborating across teams and hospitals was certainly a challenge. I really enjoyed the many clinics that I got to sit in, both for epilepsy and general paediatric neurology, so I am very grateful to my teams for that. I was impressed by the enthusiasm and energy for change that I received both from questionnaires and informally in conversation. Hopefully this audit will soon be presented to the health board and contribute towards the establishment of formalised pathways for transition.

32 Any Questions? Thank you.
Thank you so much for listening to me, and thank you again for inviting me to be a part of this wonderful conference. Does anyone have any questions? Any Questions?

33 References References
1. National Institute for Clinical Excellence (NICE). (2012). The Epilepsies: Diagnosis and Management of the Epilepsies in Adults and Children in Primary and Secondary Care. Available at: 2. Department of Health (DH). (2008). Transition: Moving on Well. Available at: 3. Epilepsy12 Audit – Action Planning (2012). Gwent Action Plan. Available at: 4. Aneurin Bevan Health Board. (2012). Policy for Transition of the Young Person with Healthcare needs between Children’s Services and Adult Services within the Aneurin Bevan Health Board. 5.

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