Personal Child Health Record Insert for Babies Born

Personal Child Health Record Insert for Babies Born with Down Syndrome What’s New? Dr Liz Marder Launch of 3 rd Edition South Shields 24 th June 2011

What’s Old? • History of PCHR insert for children with Down syndrome • Evaluation of the First Edition • How has it been used since? What’s New? • Why we produced the updates • How we produced the updates • So… What is New?

How the PCHR insert was first conceived………. . • 1994 Conference at RSM –Medical Issues in Down Syndrome. Consensus and Controversy- Highlighted need for Guidelines • July 1995 Guideline working group established • 1997 DSMIG Launched • 1997 concept of PCHR insert born , as best way of disseminating the good practice described in Guidelines • 1998 Guidelines working group designed PCHR 1 st edition • Funding obtained via the DSA • 1999 DSMIS set up to distribute and evaluate

The Birth of the PCHR insert • 1 st edition was launched in March 1999. • press release led to news items in the popular press and health journals. • Flyers sent to paediatricians via the RCPCH , and Health Visitors via the CPHVA journal. • insert sent to all parent members of the UK DSA’s with Child <5 • also available free of charge from DSMIG/DSMIS for children <5 or born within the study period. • Inserts could also be purchased by health professionals or services.

Why did we make PCHR Insert? • Parents of new babies with Down’s syndrome need information • Health professionals caring for babies with Down’s syndrome need advice • DSMIG developed guidelines and information resources, and needed to disseminate

The 14 page PCHR insert Ist Edition included : • General information on Down’s syndrome • expected developmental progress • possible health problems • suggested schedule of health checks • advice re: immunisation, feeding and growth • Down’s specific growth charts • Sources of additional help and advice

How we evaluated the 1 st edition………. . • Each insert contained a parent questionnaire with a pre-paid reply envelope. • Questions included on • demographic data, • content • usefulness • clarity.

Results from evaluation of 1 st edition………. . • 1 st year (Mar 99 – Feb 2000) • 1615 inserts sent direct to via the DSAs • 942 were requested from DSMIG. • The insert reached over 70% of the target population • (This is a minimum, as a further 1278 were sold to health professionals and authorities, some of which will also have reached children with Down’s syndrome. ) • Postcodes of families who had received inserts, and health services who had purchased them, showed wide coverage throughout the UK. • 957 questionnaires were returned in the first 6 months, representing 40% of the total inserts distributed in the study year

Parental Responses Do you think the insert will be useful ?

Parental Responses Do you find the insert easy to understand?

Parental Responses What do you think about the amount of information included within the insert?

Parental Responses Do you think any particular part will be useful?

Overall the growth charts were thought to be most useful. “ I am glad we have a chart to suit my son. ” Parents commented that : - • Appropriate growth chart reduced anxiety for them and their health visitor. • Concern that growth charts for first 3 months of life were not included. NB amended in 2 nd edition

The chart showing expected developmental progress was seen to be second most useful overall, but with mixed responses. Parents of children aged under 1 Year found it most useful “helped to put my mind at ease with regards to his development. ” However concern was expressed by some: • Unease about comparing children • Anxiety or disappointment if child’s development didn’t fall in the expected range

The schedule of health checks was valued by many parents But some were concerned that listing health problems may be depressing for new parents Other comments Wished they had it earlier Useful also for health visitor and GP Some terminology difficult to understand Dislike of some wording

Conclusions • The 1 st edition of the insert was well received by parents • Seen to be useful. • The insert reached the majority of the target audience • Health services were prepared to purchase for distribution to new parents.

What Happened Next? • The information gathered was used to revise the insert for a 2 nd edition launched in 2000 • New UK Growth charts for children with Down’s syndrome including 0 -3 months replaced the previous Growth Charts • Production and distribution of the insert was taken over by Harlow Printing Ltd. ,

Who has been buying the PCHR inserts? • Since May 2002 no. inserts sold 19050 ( no of babies born with Down syndrome in UK over same time approx 6700) • Approx 80 single orders • Most orders for 20 or 40 inserts • 48 orders for more than 100 • 2 Trusts ordered 400 • Nottingham ordered 200 – 2 for each baby! • A. N. other area ordered approx 3 for each baby • DSA ordered 500 • Where purchaser known, mainly NHS organisations, plus DSA, University, and Forces • Orders from all over UK , and Ireland

The 3 rd Edition • Always planned to update. • Began to look dated, and out of keeping with the new PCHR • Growth Charts needed updating , in line with new WHO Growth Charts • DSMIG working group November 2009 Working Group met 3 times and lots of electronic communication • Consultation with Parent organisations – DHG and DSA , and individual parent and DSMIG parent members • Great support from Harlow, especially re formatting and artwork • Culminating in our Launch today!

What is new in the 3 rd Edition? General • Different font • More spaced out • Down Syndrome , not Down’s • Line Drawings • Looks overall more like the standard PCHR • Additional information pages • New set up for growth section • 24 pages in total

What is new in the 3 rd Edition? Development • 4 separate pages instead of single page • Line drawings • Clearer layout • Describes “typical children” rather than “ other children” • Developmental parameters described as in main PCHR • Finding out about moving • Finding out about hands • Finding out about words • Finding out about people

What is new in the 3 rd Edition? Health • New sections on • Constipation • Breathing( Sruao) • Teeth • Blood disorders • Neck problems • Still only brief comments – not meant to be a text book • Minor changes to wordings

What is new in the 3 rd Edition? Feeding • Wording changed to be more friendly and direct – e. g “ your baby “ rather than “ the baby” • Suggests breast feeding support groups • Added “ you may even have to wake up your baby” Immunisation • New section • Advises importance of routine immunisations • Suggests additional immunisations may be recommended

What is new in the 3 rd Edition? Schedule of health checks • Clearer layout • All ages on one chart • Use of bold to show when each check is suggested • Refers to www. dsmig. org. uk • Hearing – updated to include universal screening • Heart – suggest ongoing review , removes dental advice • Growth - suggests BMI if concern re overweight • Breathing – suggests discussion of SRUAO at every check , and low threshold for sleep studies • Blood – adds new born FBC/film and follow up if abnormal

What is new in the 3 rd Edition? Sources of help and advice • Contact info all updated • Added reference to • Contact a Family • Early Support Programme

What is new in the 3 rd Edition? Growth Charts • Growth Charts in separate section with foldout page of associated information , so can be read alongside charts • Appearance changed to be in keeping with new A 4 charts and the main PCHR • Clearer format • Text changed in line with information on A 4 charts • More detailed explanations • Explanation clearly divided into pretem, newborn , and young babies , and older children • Charts broken down into same age bands as WHO chart and main PCHR

I think it reads very well, and has a good supportive tone It all looks very informative, concise and good This is really helpful. I wish it had been available when G was born

Thank- you to ………… • Down’s Syndrome Associations for funding • Harlow Printing Ltd. , for endless patience , help , advice and generosity • Members of DSMIG(UK) • The 957 parents who returned questionnaires from 1 st edition, and the parents who reviewed draft of 3 rd Edition • Joyce Judson and Lyn Nixon for running DSMIG office • All the children and their families who have taught us so much about Down Syndrome