NSPKU Survey - Your experience of clinic services in Children's Hospitals for PKU (Children and young people 18 and under)

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Thank you for completing this survey. The survey can be completed by carers of patients with PKU up to the age of 18 who are currently using children's services or if your child left children's services within the last two years. Patients aged 16 and over can complete this survey independently.

What is this survey for?
We would like you to complete a survey about your experience of hospital services for PKU. NSPKU may provide data from the survey for publication in academic journals. The NSPKU may also publish data from the survey in support of its work communicating with the NHS or other institutions on behalf of people with PKU.

All the information you give will remain confidential and anonymous. Information that identifies you or your family will not be made public. If you answer the optional "free text" questions your written answers may be used in published materials but your name will not be used. The NSPKU will not know the identity or email addresses of people who complete the questionnaire.

Who should fill out the survey?
Carers or family members can complete the survey (or patient over the age of 16). There is also an optional question for comments directly from the child with PKU. Only complete the survey if the child with PKU uses (or is entitled to use) NHS services in the UK.

I need help completing the survey - what should I do?
If you find it difficult to complete the survey online - please telephone the NSPKU on 030 3040 1090, or email info@nspku.org so that you can give you answers over the telephone. It is OK to have a friend or relative help you read and fill out the questionnaire as long as the survey records your answers.

1. Is the child with PKU male or female?

Male

Female

Do not wish to say

Other:

Clear selection

2. Is the child/young person with PKU aged...

0-4 years

5-11 years

12-16 years

16 or 17 years

18 to 20 years

3. Where does the child or young person with PKU live? Pick one answer.

East of England

London

South East England

North East England or Yorkshire

South West England

North West England

Birmingham and Midlands

Scotland North (Highlands, Grampian and Tayside, Western Isles, Orkney and Shetland)

Scotland Central (Glasgow, Edinburgh, Forth Valley, Fife, Lothian, Lanarkshire, Ayreshire)

Scotland South (Dumfries and Galloway, Borders)

Wales - Cardiff and South Wales

Wales - North and Anglesey

Northern Ireland

Clear selection

4. Do you go to a hospital clinic for PKU care...

In the same part of the country where I live

In a different part of the country

Clear selection

5. What kind of PKU clinic do you go to?

Metabolic clinic for children with a specialist consultant and dietitian

Clinic with a consultant who is not a metabolic specialist with "shared care" or input from a specialist metabolic team

Local hospital or non specialist - Clinic with a consultant/doctor who is not a metabolic specialist and without input from a specialist in metabolic conditions

Not applicable - do not currently go to clinic

Other:

Clear selection

6. When did the child/young person with PKU last have a hospital appointment (face to face OR remote ie phone/videocall) for PKU care?

Within the last 3 months

Within the last 6 months

Within the last year

More than a year ago

Clear selection

7. How often do you or the patient take bloodspot tests at home?

Every week

Every 2 weeks

Every month

Every few months

Rarely

Never

Clear selection

8. How long does it take to receive the blood phenylalanine results of bloodspot tests (from the date of posting the sample)?

Less than 5 days

Between 5 days and 1 week

Between 1 week and 2 weeks

Between 2 weeks and 3 weeks

More than 3 weeks

Not applicable - not doing blood tests

Clear selection

9. Have you had enough support from the hospital clinic or a healthcare professional elsewhere with doing bloodspot tests? Tick any statement that applies to you. You can add additional comments under "Other" if you wish.

I was supported to learn how to take bloodspot tests and this has not been a problem

I have NOT been offered ongoing support or updated education on how to take bloodspot tests as my child got older. This would be helpful.

My child is a teenager and has not had encouragement or support with learning to take their own bloodspot tests

Other:

Clear selection

10. Describe the support that you (or the person with PKU) receives from dietitians. Tick any statements that apply to you. You can also add comments under "other" if you wish.

I am confident that my dietitian has a good understanding of PKU and the PKU diet

I am concerned that my dietitian does not have much expertise or experience of treating patients with PKU

If I have a question or concern I can get in contact with my dietitian

I cannot easily get in contact with my dietitian if I want help

I would like more support from my dietitian than is currently available

I have enough support from my dietitian

When my child's phenylalanine levels are too high or too low, I get information and help to know what changes should be made to my child's care

When my child's phenylalanine levels are too high or too low, I feel I do not get enough advice or help

I get information about new low protein foods that are available

I do not get information about new low protein foods that are available

I get enough support with my prescriptions and troubleshooting supply issues

I do not get enough support with my prescriptions or troubleshooting supply issues

I have had home visits from the dietitian as routine part of care

Other:

11. Has your child had any of the following problems? Tick any that apply. You can also add in comments under "other" if you wish.

Regularly having high phenylalanine levels above recommended levels

Child refusing protein supplements for long periods

Child is a very "picky" eater - will only eat very restricted range of foods

Child has problems at school such as learning difficulties or problems with behaviour

Child has anxiety, low mood or depression

Child has eating disorder

Child has gained too much weight

Persistent stomach problems, such as stomach pains, diarrhea, constipation, etc

Oral health problems including Tooth decay or problems with teeth or mouth ulcers

None/not applicable

Other:

12. If your child has had problems which might be associated with PKU, what support have you received? Tick any that apply. You can also add extra comments under "other" if you wish.

We received help from a psychologist who works as part of my metabolic team

My metabolic clinic referred me for support to a professional that works outside my metabolic team

I obtained treatment via my GP

I paid for treatment or support privately

Discussion with my metabolic team or dietitian that helped

Home visit from dietitian or other member of metabolic team

I wanted help for my child but did not receive it

We did not need any extra help.

We ask about problems at clinic and the metabolic team are unsure if the problems relate to PKU

We ask about problems when we see the GP and the GP is unsure if the problems relate to PKU

Other:

13. Where have you found information about managing your child's PKU? Tick any that applies. You can add information under "other" if you wish.

With education, support and discussion with my metabolic team

Attending events run by NSPKU or low protein food companies or reading information they provide

Information from the internet or Facebook/social media groups

Attending events run by my metabolic team

Other:

14. Tell us about what happens at your face to face clinic visits? Tick any boxes that apply to you (or the person with PKU).

A check of what the child typically eats

Check of height and weight

Blood test taken at the hospital from the child's arm

A discussion of how the child is developing/doing at school and if you have any problems relating to PKU

Updates on developments with low protein dietary products, protein substitutes or other PKU developments

Discussion of health problems relating to PKU and the child's general health

Discussion of mental wellbeing relating to PKU

Discussion of carer wellbeing and sources of support for the carer

Other:

15. Describe your experience of clinic appointments (tick any that apply to you)

I am encouraged and supported to discuss concerns and issues relating to my child's PKU

I can't adequately discuss the problems or concerns relating to my child's PKU at clinic appointments

The appointment is long enough and not rushed

The appointment is too short

The appointment is relaxed and supportive

The appointment is stressful

Not applicable - do not go to clinic

16. What is your opinion about increasing the use of communications technology (e.g telephone or videocall) to treat patients with PKU? Tick any statements that you agree with. You can write a comment under "other" if you wish.

I think using more telephone/videocall appointments would be helpful.

I would like to replace face to face clinic appointments with telephone/videocall appointments as much as possible

I don't agree with using more telephone/videocall appointments.

I would like clinic appointments at the hospital only

I think it will be harder to develop a good relationship with your consultant or dietitian if you do not meet them face to face

I think it will be harder for my child to develop independence or a good relationship with the consultant or dietitian if they do not meet them face to face

I think telephone/videocall appointments can be more relaxed and its easier to talk than in the hospital

Telephone/videocall appointments would allow me the chance to have care from a specialist metabolic centre further from my home. If remote appointments were available I might consider moving clinics to one further away.

We do not have technology at home for videocalls, eg no internet, or no laptop or tablet

Other:

17. Have you had experience of telephone/videocall appointments or advice from your metabolic clinic during the coronavirus pandemic? Do you have comments about your experience of this?

18. Tell us about your thoughts about support from family, friends or others at clinic. Tick any statements you agree with.

I would welcome the chance to meet other families with PKU as part of my visit to clinic

I would like the opportunity to get low protein food or supplement samples during clinic visits.

Other:

19. Does your clinic usually organise events for families with PKU? Tick any that apply. You can also add additional comments about this under "Other" if you wish.

Yes, and I attend

Yes, but I am not able to go

Yes and I do not want to go

Other:

Clear selection

20. If your child is older than 12, tell us if you and your child feel prepared for your child's transition to becoming an adult with PKU. Tick any boxes that apply. You can also add in extra comments under "other"

The metabolic team has made clear that the current recommendation is that levels should be kept below 600 umol for life.

My child is a girl and she has been appropriately counselled about Maternal PKU, contraception and being able to have a baby safely in the future

I know which clinic my child will attend as an adult

Moving to adult care or learning to be independent has never been discussed with me or my child

The clinic is helping my child gain skills to become independent with managing their PKU

I have concerns about my child moving to adult clinic services

Not applicable - my child is too young

Other:

21. Does your clinic help you with wider issues eg financial benefits and social and educational issues? Tick the boxes that apply. You can also add additional comments under "other" if applicable.

Advice and support about applying for benefits like Disability Living Allowance

Helping you tell your child's school or nursery about PKU and manage your child's dietary needs at school or nursery

Communicating with schools/teachers if your child experiences difficulties relating to PKU

Access to a social worker/support worker to help with issues we experience

Other:

Clear selection

22. Tell us about support for caregivers and the wider family. Tick any statements you agree with. You can also add additional comments under "other" if you wish.

Metabolic clinics should provide more support and counselling to help parents after the diagnosis of PKU

Caring for a child with PKU can impact the mental health and wellbeing of carers or the wider family and more support and understanding is needed

We have had all the support we have needed from my metabolic clinic

Metabolic clinics should provide access to genetic counselling for parents after the diagnosis

Other:

23. How satisfied are you with the support you get from your clinic for PKU?

Very Unsatisfied

Very Satisfied

Clear selection

24. Have you any comments or feedback about how metabolic consultations are organised or conducted, or how you would want this to change?

25. If you have more than one child with PKU can you comment on experience or preference of joint or separate appointments? If you were given the choice which would you prefer?

26. If the child or young person with PKU would like to add in any of their own comments about getting hospital care for PKU, they can write this here if they wish. Thank you.

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