Family survey on the importance of bloodspots > 5 years of age

Importance of Newborn Bloodspots Survey

A new policy is proposed to destroy all newborn bloodspots (also known as heelprick tests, dried blood spots and Guthrie cards) at age 5 years. There has been no consultation. We understand that reasons are financial, relating to the cost of storage, rather than medical. Following an appeal by patients and doctors, Public Health England have now asked for evidence that the bloodspots are helpful to patients.

The bloodspot (Guthrie card) test is the only way of diagnosing congenital cytomegalovirus (CMV) in children and young people over 3 weeks of age. Without the bloodspot, congenital CMV cannot be diagnosed for children over three weeks of age and young people as the cause of their symptoms.

This survey has been designed in collaboration with CMV Action (www.cmvaction.org.uk) and a Consultant Audiovestibular Physician. The information gathered will be anonymous and shared with Public Health England and other stakeholders involved in the consultation. If you have more than one child/young person who has had the bloodspot CMV test then please kindly complete one survey per child/young person. If you have any questions about the survey please contact CMV Action (www.cmvaction.org.uk).

Please complete the survey by Monday 18th June. Thank you very much for taking the time to complete this survey.

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* 1. Are you a member of the NDCS, CMV Action or both?

CMV Action

NDCS

Both

Other (please specify)

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* 2. In which county/area of the UK/Ireland was your child/young person born?

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* 3. What symptoms/problems/signs prompted the investigation for congenital CMV for your child/young person?

Hearing loss

Balance problem

Epilepsy

Autism

Cerebral palsy

Developmental delay

Head scan appearance

Other (please specify)

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* 4. At what age (if known) did the symptoms/problems/signs start?

Other (please specify)

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* 5. Which type of medical doctor arranged the CMV investigations? e.g. Paediatrician, Audiovestibular Physician, Paediatric Infectious Diseases doctor, ENT surgeon, GP, Other

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* 6. Was the newborn bloodspot tested for CMV?

Yes

Don't know

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* 7. At what age (in years) was the newborn bloodspot tested for CMV?

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* 8. Was the result positive?

Yes

Don't know

Test has been requested - result not available yet

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* 9. If the test was positive, was it helpful to confirm congenital CMV as a cause of the symptoms?

Yes

Don't know

Not applicable

Comments

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* 10. Did the diagnosis of congenital CMV result in further medical checks?

	Yes	No	Don't know	Not applicable
Developmental checks	Developmental checks Yes	Developmental checks No	Developmental checks Don't know	Developmental checks Not applicable
Eye checks	Eye checks Yes	Eye checks No	Eye checks Don't know	Eye checks Not applicable
Balance function checks	Balance function checks Yes	Balance function checks No	Balance function checks Don't know	Balance function checks Not applicable
Referral to paediatric infectious diseases	Referral to paediatric infectious diseases Yes	Referral to paediatric infectious diseases No	Referral to paediatric infectious diseases Don't know	Referral to paediatric infectious diseases Not applicable

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* 16. If the bloodspot CMV test was negative, was it helpful to have had all the tests possible to check for congenital CMV?

Yes

Don't know

Not applicable

Comments

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* 17. What would have been the effect if the bloodspot had not been available for testing?

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* 18. Please add any further comments or suggestions on the importance of storing the bloodspots beyond age 5 years. Thank you for your help with this survey.