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.

Personal Reasons for Interest in Audit

Paediatrics

Personal experience of difficulties of falling between paediatric and adult care

Similar age to those transitioning

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

• First teenage epilepsy clinic – Liverpool 1991

• University Hospital of Wales, Cardiff - 1996 (17 years) Specialist Tertiary Teenage Clinic

• ABHB – past 18 months

• Joint clinics are emerging as a way of facilitating the transfer to adult care

http://www.wales.nhs.uk/nhswalesaboutus/structure10

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

Objectives for Audit

1. Current Practice

2. Professionals’ perspectives

3. Views of patients and parents/carers

Case ascertainment

Records of notes of patients discharged from Paediatric Epilepsy Specialist Nurse services

Learning Disability Transition Database

Consultant-led & Nurse-led Transition Clinic Lists

What we did:

1. Case Notes Review

2. Questionnaire to professionals

3. Questionnaire to patients and parents/carers

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

First Appointments in Adult setting:

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)

16/22 (73%) patients attended a joint clinic:

17/22 (77%) had additional problems recorded

15/22 (68%) had medications altered

What did Professionals Think?

73% of Paediatric Professionals rated current transition as ‘Poor’

Confusion regarding Referral Pathways…

1. All to Adult Neurologist

(A) Based on complexity and control of epilepsy:

(B) Based on learning disabilities:

(C) Based on complexity/control of epilepsy & whether additional 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

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…

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

At handover, adult specialists wanted to know about medication history, diagnostic work-up and lifestyle

Information provided “incomplete” and “variable”

8/20 (40%) professionals had received training in

transition

14/20 were aware of transition policies – only 3 felt able

to adhere to them

Views of Professionals

“Explicit transition care pathway”

“Better coordinated approach between Paeds and Adult Neurology and Learning disability services, and health, education and social services”

Main areas for improvement:

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”

What did Patients and Parents Think?

45% of patients and parents/carers found transition ‘difficult’ or ‘very difficult’

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”

Did patients and parents/carers feel they received enough information?

6/11 (55%) of patients felt supported throughout their transition

5/11 (45%) felt in control of the process

“ I don’t think anyone feels in control as

healthcare worker ‘knows best’ ”

“ I wanted better understanding and to

be treated as an individual ”

Young people’s views:

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”

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’ ”

“My paediatrician came to my first meeting

with the neurologist. This was helpful and

ensured a seamless transition”

http://www.bigstockphoto.com/image-6644085/stock-vector-two-cartoon-doctors

Discussion

Transition is difficult for patients with epilepsy

Joint clinics are deemed successful by patients and professionals

Transition overall is still rated poorly

Key elements for good transition:

A process, spanning the teenage years.

• Patient centered transition plan

• All professionals working together towards a joint goal

• Training of professionals

• Resources

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

Limitations

Case ascertainment – lack of database

Retrospective analysis

Risk of bias with questionnaires

Conclusion

• 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.

• Good elements emerging• Scope for improvement

• Care pathways to be refined locally, • collaborating widely • specific needs of each patient - control of epilepsy, extent

of comorbidities, professionals involved in their care.

ABHB are currently developing an electronic database - highlight patients approaching 14 years

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

Any Questions?

Thank you.

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: http://www.nice.org.uk/nicemedia/live/13635/57779/57779.pdf. 2. Department of Health (DH). (2008). Transition: Moving on Well. Available at: http://www.bacdis.org.uk/policy/documents/transition_moving-on-well.pdf.

3. Epilepsy12 Audit – Action Planning 2012. (2012). Gwent Action Plan. Available at: http://www.rcpch.ac.uk/system/files/protected/page/Gwent.pdf.

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. http://www.wales.nhs.uk/sitesplus/866/home

References