Paediatric IBD transition survey

(1)

1. Email address *

Baseline paediatric IBD transition services

What were your transition arrangements prior to COVID-19

2.

Mark only one oval.

Other:

<12 years of age

<14 years of age

<16 years of age

<18 years of age

Paediatric IBD transition survey

We are working on a UK-wide collaboration aiming to compile the current UK picture on transition services for patients with IBD, specifically from a paediatric perspective. We are aiming to address the following questions-

1. What are the transitional pathways in the UK for paediatric IBD patients?

2. How has COVID-19 impacted on this?

3. How can we develop lessons learnt to improve the service for patients?

We are not collecting patient identifiable data. We hope these data will be used to report overall practice and aid with planning response/resourcing.

Please complete this form only reflecting the situation in your centre within the last year.

When completing this please bear in mind the following definitions-

Transfer- the point at which the paediatric team have transferred the patient care to adult physicians (the next appointment will be the adult team only)

Transition- the process of planning, preparing and moving from paediatric care to adult care.

Transition is a gradual process of change, including preparation work, joint clinics and continues after transfer of care.

* Required

At what age do you start the transition process in your unit for those transitioning to the local adult team? *

(2)

3.

Other:

<12 years of age

<14 years of age

<16 years of age

<18 years of age

4.

Other:

16 years of age 17 years of age 18 years of age 19 years of age

5.

Other:

16 years of age 17 years of age 18 years of age 19 years of age

At what age do you start the transition process in your unit for those transitioning to network district general hospitals? *

At what age do you aim to complete transfer of care for those transitioning to the local adult team? *

At what age do you aim to complete transfer of care for those transitioning to network district general hospitals? *

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6.

7.

8.

9.

Other:

Check all that apply.

To transfer care to local adult unit To transfer to District General Hospitals No clinics

10.

Other:

Adult gastroenterologist Paediatric gastroenterologist Adult clinical nurse specialist Paediatric clinical nurse specialist Adult dietitian

Paediatric dietitian Adult psychology Paediatric psychology Adult surgeon

Paediatric surgeon

How many IBD patients do you estimate you look after in your service? *

Of all the IBD patients in your service, what proportion are currently in the transition process (%)? *

How many IBD patients do you estimate are transferred per year from your paediatric service? *

Do you have joint paediatric + adult transition clinic? Select all that apply *

Who routinely joins the joint transition clinics? Select all that apply *

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11.

Other:

Paediatric surgeon

12.

13.

14.

15.

Yes, for example Ready Steady Go Yes, local documentation only

Who joins the joint transition clinic for patients who require them? Select all that apply *

In total, how many transition related clinics do you undertake in a year? *

If applicable, how many clinical nurse specialist preparation clinics do you undertake in a year? *

If applicable, how many transfer specific clinics do you undertake in a year? *

Does your hospital use a structured planning tool for transition? *

(5)

16.

Other:

Patient held records

Virtual interaction with teams (e-clinics) Patient information resources

Peer-peer support None

17.

Yes No

18.

Other:

Sexual health Contraception Pregnancy

Education or work Selfcare

Do you routinely use digital resources in the transition process? Select all that apply *

Do you routinely use of paper transition materials/hand-outs for the transitional process? *

Specific transition topics discussed during clinics- Select all that apply *

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19.

Other:

Adult clinics

Adult biologics infusion location None

20.

Yes No

21.

Other:

Yes No

22.

Other:

Yes No

Is a visit to adult services part of the transitional preparation in your service?

Select all that apply *

Are primary care invited to participate in the transition process? *

Do you have a lead paediatric gastroenterologist for transition? *

Do you have a lead adult gastroenterologist for transition in your local adult hospital? *

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23.

Other:

Yes- all Yes- some None

24.

Other:

Yes No

25.

Other:

Paediatric team Adult team

Combined responsibility

26.

Other:

After first joint clinic After final joint clinic After first adult clinic

Do you have a lead adult gastroenterologist for transition in your network district general hospitals? *

Do you have a lead paediatric clinical nurse specialist for transition? *

During the transition process (and before final transfer of care) who is responsible for monitoring blood and stool tests? *

When do you deem transfer of care to be complete? *

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27.

Other:

Combined responsibility

28.

Other:

29.

Other:

Prior to transfer of care, but before having first Adult GI appointment, who is responsible for monitoring blood and stool tests? *

Who performs endoscopic assessment in patients during transition aged 16-18 if transfer of care has not occurred? *

Who performs endoscopic assessment in patients during transition aged 16-18 if transfer of care has occurred? *

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30.

Other:

Paediatric surgeons Adult surgeons Both

31.

Other:

Yes No

32.

Other:

Yes No

Changes due to COVID-19, directly related to IBD transition.

Please answer based on the period from April-July 2020

If required, which surgeons are involved with surgical decision making in patients during the transition process? *

Do you have adult units within your network who will not give monoclonal infusions to <18 year olds? *

Do you perform cancer screening for ulcerative colitis with disease duration >10 years? *

(10)

33.

Other:

Yes No

34.

Other:

Telephone clinics Video conferencing Unable to review virtually

35.

Are you able to physically review patients in your transition related clinics (preparatory or young person clinics, joint transition or transfer clinics) during COVID-19? *

Are you able to review patients virtually in your transition related clinics during COVID-19? Select all that apply *

Estimate how many young people transferred care to adult services during these months (April-July 2020)? *

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36.

Other:

Paediatric surgeon

37.

Other:

Paediatric surgeon

Who routinely joins the transition clinic during COVID-19? Select all that apply *

Who joins the joint transition clinic for patients who require them? Select all that apply *

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38.

Other:

Overwhelmingly positively Moderately positive Some good, some bad Poor engagement No engagement at all Not applicable

39.

Other:

Overwhelmingly positively Moderately positive Some good, some bad Poor engagement No engagement at all Not applicable

40.

Other:

Joint decision making

How do you perceive patients engaged with virtual clinics during COVID-19? *

Has your service sought any feedback from young people on the virtual clinics, and if so has it been? *

Who has decided patient shielding groups during COVID-19 for young people in transition but pre-transfer of care? *

(13)

41.

Building from COVID-19- what opportunities are there for improving IBD transition 42.

Other:

Patient held records

Virtual interaction with teams (e-clinics) Patient information resources

Peer-peer support None

43.

Other:

Yes

No, prefer locally developed resources

Have you identified any specific barriers to transition due to COVID-19 that are no identified through previous questions? *

What additional digital resources may help with the transition process? Select all that apply *

Would having clear and available national resources be helpful in the transition process? *

(14)

44.

Other:

Yes No

Not applicable

45.

46.

Other:

Yes No

This would be desirable in the future

Are there any plans to develop a virtual resource to replace visit to the adult services pre-transfer of care? *

If you do plan to develop virtual resources please elaborate on this *

Do you plan to invite primary care into the more complex transitional consultations when carried out virtually? *

(15)

47.

This content is neither created nor endorsed by Google.

Are there any other resources or lessons from COVID-19 that have been useful in engaging young people in the transition process? *

Paediatric IBD transition survey

Paediatric IBD transition survey

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