NSPKU Survey - Clinic services for PKU (Adults 18 +) what you have experienced & what you want

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Thank you for completing this survey. The survey needs to be completed by adults aged 18 or older with PKU or carers/family members of people with PKU aged 18 or older.

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?
Please fill out only 1 survey per patient with PKU. Carers or family members can also complete the survey. Only complete the survey if you use (or are 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. Are you...?

An adult with PKU (aged 18 or over)

A carer or family member of a person with PKU aged 18 or older

Clear selection

2. Are you (or the person with PKU) male or female?

Male

Female

Other

Do not wish to say

Clear selection

3. Where do you (or the 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

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

Metabolic clinic for adults 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

Clinic with a consultant/doctor who is not a metabolic specialist and without input from a specialist in metabolic conditions

Don't know

I don't go to a clinic and I don't have any plans to go

I don't go to a clinic but I am considering making contact with a clinic/going back to clinic

Other:

Clear selection

4. If you go to clinic, 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

6. How would you describe your diet on a typical day (or the diet of the person with PKU)? Tick the box which is the best description. You can write a comment under "other" if you wish.

I eat a restricted phenylalanine diet and take a protein substitute

I eat a partially restricted diet (which usually cuts out most high protein food) and regularly take a protein substitute

I eat a partially restricted diet (which usually cuts out most high protein food) but do not take protein substitute

I do not restrict my diet and do not take protein substitute

Other:

Clear selection

7. When did you/ the person with PKU have a clinic appointment in person or remotely (phone or videocall)?

Less than 1 year ago

1-2 years ago

2-5 years ago

5-10 years ago

More than 10 years ago

Clear selection

8. How often do you/the person with PKU take blood tests at home? Tick any that apply

Every week

Every month

Every few months

Rarely

Never

I do a blood test when I feel I need to - this is MORE often than my clinic would like me to

I do a blood test when I feel I need to - this is NOT as often as my clinic would like

Other:

9. How long does it take to receive the results of blood tests (from the date of posting)

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

10. Describe the support that you (or the person with PKU) receives from dietitians. You can tick as may as you think apply to you.

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

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

I cannot easily contact my dietitian if I want help

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

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

I have enough support from my dietitian

Not applicable - do not go to clinic

11. Do you (or the person with PKU) experience any of the following problems? Tick any that apply.

Can be forgetful, disorganised or have "foggy brain"

Anxiety about travelling to unfamiliar places

Severe anxiety or panic attacks

A learning disability

Tiredness which impacts on your activities of daily living

Chronic pain

Eating disorder, such as anorexia, bulimia or binge eating

Only willing to eat a very small range of foods

Behavioural problems

A psychiatric diagnosis

None of these issues

Other:

12. Do you have problems or issues that affect your ability to get hospital care for your PKU? Tick any of the boxes that apply to you. You can write a comment under "other" if you wish.

I don't go to a metabolic clinic because of health or mental health issues (e.g anxiety, problems with coping with a journey)

I go to a metabolic clinic, but the health or mental health issues I experience (e.g anxiety, problems coping with a journey) mean this is stressful or difficult

I have been discharged from my hospital, or threatened with discharge, because I missed an appointment

I don't go to the clinic because it is too expensive to travel there

I don't go to the clinic as I cannot take time off work or organise childcare

I don't go to clinic as it does not seem helpful

Other:

13. If you (or the person with PKU) stopped attending a specialist clinic for a year or more (currently or in the past) can you tell us why? If you have any comments about how returning to clinic could be made easier please tell us.

14. If you are a woman with PKU, tell us about your experience of how Maternal PKU, pregnancy, being a new mum and contraception is dealt with? Tick any that you agree with. You can write a comment under "other" if you wish.

The issues of Maternal PKU and pregnancy were explained appropriately to me

I feel that Maternal PKU and pregnancy is dealt with in a way that is insensitive or heavy-handed

I am comfortable discussing pregnancy planning or contraception with my consultant

I am not comfortable discussing pregnancy planning or contraception with my consultant

Not applicable - not female

I think there needs to be more support after you have given birth

Other:

15. Do you have any feedback or suggestions about how reproductive health/Maternal PKU/pregnancy is dealt with?

16. Tell us your experiences of discussing and explaining target phenylalanine levels now and in the past. Tick any that apply to you. You can write any additional comments under "other" if you wish.

My current clinic informed me of the risk of higher phenylalanine levels in adulthood

My current clinic has not informed me of the risk of higher phenylalanine levels in adulthood

My current clinic supports my personal choices about how to manage PKU and provides me with information about the risks

In my past experience, my clinic informed me of the risk of higher phenylalanine levels in adulthood

In my past experience, my clinic did not inform me of the risk higher phenylalanine levels in adulthood

Other:

Clear selection

17. What help have you (or the person with PKU) received for mental health or cognitive problems? Tick the one that best describes your situation. You can write additional comments under "Other" if you wish.

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

My metabolic clinic referred me for support to the community mental health team

My metabolic team referred me to a counsellor/psychologist who does not work as part of my metabolic team

My metabolic team referred me to a psychiatrist

I obtained treatment via my GP

I paid for treatment or support privately

I did not want any help

I do not have any mental health or cognitive problems

Other:

Clear selection

18. Do you want to make any comments about your experience of mental health support for people with PKU?

19. 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 I typically eat - either a 3 day food record or discussion of what I ate within a day

Check of height and weight

Blood test taken at the hospital

A discussion of how you manage in your life and if you have any problems relating to your PKU

Check of neurocognitive functions

Discussion of wellbeing and quality of life

Check on any psychiatric disturbances experienced

Brain scan

Medication check

Other:

20. Do you (or the person with PKU) have physical problems which you are concerned are related to PKU or the PKU diet? Tick any that apply to you. You can add additional comments under "Other" if you wish.

Diabetes

Weight problems

Tremor or shaky hands

Disturbed sleep or frequent nightmares

Vitamin B12 deficiency

Iron deficiency

Hair loss or thinning hair

Problems with walking such as unsteadiness

Dizziness

Gall bladder problems

Chronic pain or pain in the joints

Digestive problems

Problems with bones, such as low bone density or bone fractures

Problems with oral health, including teeth, or mouth ulcers

Other:

21. Describe your experience of clinic appointments. Tick any statements that apply to you. You can add comments under "other" if you wish.

I am encouraged and supported to discuss the issues I am experiencing

I can't adequately discuss the problems or concerns I have 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

The overall experience is good

The overall experience is NOT good

I don't go to clinic - not applicable

Other:

22. What is your opinion about increasing the use of communications technology (e.g telephone or videocalls) 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 phone/videocall appointments would be helpful.

I would like all my appointments as phone/videocall appointments

I would like a mix of face to face clinic appointments with telephone/videocall appointments

I don't agree with using phone/videocall appointments.

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

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

Using phone/videocall for an appointment was/will be difficult for me to manage

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

I'm concerned that phone/videocall appointments do not include a full blood test or weight check

I'm concerned that physical signs and symptoms might be missed in phone/videocall appointments

I do not have technology at home to allow a videocall (eg no internet, or no laptop or tablet)

I find it difficult to hear or follow what is being discussed on a phone or a videocall

Other:

23. Have you had experience of phone/videocall appointments with your metabolic clinic during the coronavirus pandemic? Do you have comments about your experience of this?

24. Tell us about your thoughts about support from family, friends or others at clinic. Tick any statements you agree with. You can add any comments under "other" if you wish.

I have a brother or sister with PKU and we like to have our clinic visits on the same day.

I like to have my parent/friend/partner attend clinic visits with me

I would welcome the chance to meet other patients with PKU during a clinic visit.

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

Other:

25. Tell us about wider practical and social support you are offered in clinic. Tick the box if you DO get offered help with any of the following things. You can add a comment under "other" if you wish.

Help with menu planning

Help with making shopping lists or shopping skills

Help with recipes

Help sorting out problems with getting low protein food or supplements

Help with applying for state benefits (e.g Personal Independence Payment)

Communicating to help with education or workplace issues

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

Other:

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

Very unsatisfied

Very satisfied

Clear selection

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

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