1. Improving newborn screening outcomes for babies December 2015 Quality indicators

2. The newborn metabolic screening programme (NMSP) Over 20 rare, mostly genetic disorders screened for - many can lead to serious disability or death if not detected early. The role of LMCs, core midwives, phlebotomists and midwifery leaders is critical in ensuring early detection. The programme is monitored against quality indicators to check that each part of the programme is working well.

3. Important steps in the NMSP pathway Antenatal information Parents receive and understand information about newborn metabolic screening Informed consent Information given, the offer of screening is made and informed consent /decline obtained Sample taken High quality sample taken at 48 hrs or as soon as possible afterwards. Sample posted Sample registered at LabPLUS Check for result Fastpost or courier only Tested and reported When in doubt Phone 0800LabLINK

4. Four areas for quality improvement Ensuring… 1.Every consented baby has a newborn metabolic screening result 2.Samples are taken at the best possible time (48-72 hours) 3.All samples are of good quality 4.All blood spot cards reach the lab in the shortest time (sample transit times).

5. 1. Ensuring every consented baby has a newborn screening result Around 60,000 babies a year born in NZ …..the Ministry of Health strongly recommends that all newborn babies have newborn metabolic screening Metabolic screening is completed for ≥99% of all newborns. Screening is not completed for around 500 babies annually. Possible reasons for babies without screening results:  declined screening (anecdotally very few)  screening not offered or completed  samples taken but not received by the laboratory.

6. What can you do to ensure every baby is screened? Discuss newborn metabolic screening during the woman’s pregnancy. Communicate clearly to parents that screening is strongly recommended. Good communication when a baby in your care transfers before screening. For all consented babies in your care, check for a report from LabPLUS within 10 days of the sample being posted. If none, call 0800 522 7587 (0800LABLINK). A baby’s life may depend on it. Help to ensure we have an accurate record of declines – if parents agree, send the blood spot card to lab noting the decline.

7. Discussion questions What reasons could there be for babies not being offered metabolic screening? How might you respond to parents who decline newborn metabolic screening for their baby? Who or what can you use to support parents in their decision making? E.g. resources, specialists…

8. 2. Ensuring samples are taken at the right time NSU standard = 95% of samples taken between 48- 72 hours Best practice is to take samples at 48 hours or as soon as possible after this.

9. Detecting PKU: abnormal phenylalanine levels are detected from 48 hours don’t take samples too early Detecting fatty acid oxidation disorders: best time to detect abnormal metabolites is around 24-80 hours. The best time to take the sample is between 48 and 72 hours Why is sampling time important?

10. NMSP Indicator 1: 95% of samples taken at 48-72 hours Percentage of samples taken at 48 to 72 hours, by DHB, January to December 2014

11. What are common reasons for samples being taken a) too early (before 48 hours)? b) too late? How can these factors be influenced by: a)processes within the facility? b)referring practitioners (e.g. LMCs)? One reason for late sampling is consent initially refused because the mother didn’t want to wake baby. How can the explanation of most accurate test time best be given in this situation? Discussion questions

12. 3. Ensuring all samples are of good quality Why it’s important: Accurate testing relies on a high quality blood spot sample. Unsatisfactory samples require a repeat sample:  time, inconvenience  delay in testing  more distress to baby and parents   costs.

13. How good is our sample taking? Reasons for unsatisfactory samples in 2014  In 2014, 98.3% of samples nationally were ‘satisfactory’.  That means 995 unsatisfactory samples required a repeat. NMSP Indicator 3: 99% of samples satisfactory for testing.

14. The most common reason for inadequate samples is layered or insufficient blood. Front of card Back of card These samples will give unreliable results and require a repeat sample to be collected Poor samples..

15. 3mm 2.2µL blood?blood

16. Other reasons for poor quality samples… Contaminated sample (e.g. powders, other substances spilt on the card) Blood not dried properly, flap folded onto wet blood Sample heated (e.g. left in hot car) Put in wet plastic bag (or plastic bag in a warm place) Too old (over 1 month before it reaches the lab) No demographics on the card (or different demographics top and bottom)

17.  Use an approved slicing lancet.  Wait for a really good drop of blood to form.  Soak blood through from one side to fill circle.  Check other side is full to the edges too.  Completely fill one spot before starting on the next. Back of card This is a good quality sample - four complete circles that are evenly soaked both sides of the card Front of card To obtain a good quality sample…

18. Check out the instructions and education on newborn metabolic sampling…  On the back of the blood spot card.  Learn on-line http://learnonline.health.nz..earn midwifery points for completing the screening modules. http://learnonline.health.nz  Call the screening educator at LabPLUS for assistance or queries 021478763 … ask for training from the lancet suppliers.

19. Have I completed all the details correctly on the card? Do you /your facility have a specific place for drying samples horizontally away from heat? Do you use a high quality slicing lancet supplied by NSU and ordered through LabPLUS ? Protect valuable samples from getting wet, coffee spills etc

20. What are the most common difficulties you experience in getting a good sample? A relaxed mother and baby can assist you with taking a high quality sample. What can you do to make the mother and her baby comfortable? Discussion questions

21. 4. Ensuring all samples reach the lab ASAP ‘ Transit time’ = the time taken for a blood spot card to reach the laboratory from the date the sample was taken. NSU standard = 4 calendar days

22. Why are transit times so important? A delayed sample may mean a delayed diagnosis and delayed treatment. For some disorders, e.g. PKU, galactosaemia, congenital adrenal hyperplasia, there can be serious harm to baby or death within 7- 10 days. In 2014 there were two cases of delayed diagnosis due to samples not being received by the laboratory in a timely way.

23. Percentage of samples received by the lab within four days, by DHB, July– Sept. 2015 NMSP Indicator 4: 95% of bloodspot cards received by the laboratory within four calendar days of being taken

24. Fewer babies have very delayed screening samples…

25. Be aware of and prevent failure points…. Sample mislaid from drying /posting place Sample/envelope incorrectly labelled Sample delayed in being posted/ not posted/lost Sample taken to facility but left in wrong place/after collection time Sample taken to facility but after post collected/prior to weekend How can you improve transit times for babies in your care?

26. Look after samples carefully ‘Post me ASAP: any delay is not OK’ Use a FastPost box (or courier) See list of all the FastPost mailboxes by DHB region Review processes for posting samples at your facility, check they are posted every day. Do…

27. Don’t… Don’t use standard post. From June 2015 services from standard boxes reduced, risking significant delays.. ……a baby’s life could depend on it Don’t leave samples where they can get wet, damaged by flies or found by dogs. Don’t have it hanging around in your handbag.

28. How to audit transit times of samples you are responsible for…  Look for the transit time on results report from the lab - each screening result now includes transit time of the sample and whether it met the four day standard.  From time to time NSU will send a report letter to individual LMCs with a summary of their transit times.  Look for the latest NMSP monitoring data to see how your DHB is doing. Talk with your DHB facility about blood spot card processes (how and when they are taken and posted).  You may receive a phone call for very late samples from LabPLUS staff. *where there are clear repeated, prolonged delays with no adequate explanation,these are reported to the National Screening Unit and/or Midwifery Council

29. Discussion questions What are common reasons for delays in sample transit to the laboratory? Consider: Processes in facilities, LMCs, postal systems. What else can be done to reduce transit times to improve outcomes for babies? What can you do?

30. Do you receive texts from the lab? You can now receive notification by text when a second sample is required (non-urgent positive test results only). To receive text rather than phone calls, please send a text to 021704781 with your name and registration number. Ensure your phone is password protected and kept safe, and that you delegate responsibility for any follow-up requests if unable to do so. Ensure your answerphone messages are current if you are unable to receive texts. Critical results will always be phoned !

31. Looking ahead  Continuous quality improvement of the programme  Ongoing review of screened disorders  Roll out of new information systems: Maternity Clinical Information System and NCHIP (National Child Health Information System) will help us to track unscreened babies. Approximately 50 babies each year are diagnosed with a rare disorder through the newborn metabolic screening programme

32. Thank you for the great work you are doing to ensure timely collection and posting of high quality newborn screening samples for all New Zealand babies www.nsu.govt.nz www.learnOnline.health.nz