1. Introduction Aarhus University Hospital offers any general treatment to citizens primarily in the Central Denmark Region. Aarhus University Hospital offers specialized treatment to all regions in Denmark. Malene Kapper, Nurse, Department of Pediatrics Anne-Grethe Boje Nurse, Department of Pediatrics Proud to present… Firenze, October 2012 Page 1

2. A Cultural Revolution of immunoglobulin treatment in Children with Immunodeficiency? A former routine with immunoglobulin for children with immunodefienciency started out with intravenous infusions (IV), reason being that the serum IgG level was in this way much faster adjusted. After a child had been on IV treatment for a period of 6-12 months, we formerly used to introduce the subcutaneously (SC) way as a treatment of opportunity. However, we experienced that it was difficult for the child and their parents to change between the two methods because they found the IV infusion in the out-clinic was a lot more convenient than a SC treatment at home. Firenze, October 2012 Page 2

3. 2007 idea generated 2008 project described 2009 project implemented 2012 use achieved experience every day Step by step – the methods to achieve Firenze, October 2012 Page 3

4. We had to do something! We sat down in the team and discussed the various ideas of transitions from Iv-Sc treatment and how to make a plan for it - that would work. Soon we discovered that there was not much sense in giving the Iv treatment before the Sc treatment. Actually we found out that especially the youngest children suffered from a lot of side effects from the Iv treatment such as head- & stomach ache, nausea and fever. Despite these side effects the parents continued to prefer the Iv treatment. Firenze, October 2012 Page 4

5. Why? Parents felt genuinely much safer in the hospital surroundings because of the responsibility involved Parents rejected to accept the responsibility involved in connection with home treatment of their own child Parents took advantage of the fact that they with the hospital solution were allowed to take a day off from work The parents and their child had a nice, peaceful and playful time together at the hospital without conflicts between them because these were projected towards hospital staff The parents had to learn to inject the child and had difficulties to cope with this They felt insecure about moving the ”hospital treatment” to their homes Firenze, October 2012 Page 5

6. It works… Firenze, October 2012 Page 6

7. Change of tactics Iv treatment is no longer an option from the beginning of the treatment program! The doctor makes a plan for the treatment The specialist nurses makes an agreement with the parents in writing The specialist nurses make a plan for Sc-training The training takes place in ”safe” surroundings The training takes place at the hospital Training takes about 3-4 lessons Firenze, October 2012 Page 7

8. The training phase In the training phase, we typically give a dose which is twice as big as a normal dose Aiming that the serum IgG-level is faster adjusted For 2 or 3 weeks we repeat this once a week During this phase the child and its parents have a lot of practical training Especially due to the fact that we use 2 pumps and 2 needles each time Firenze, October 2012 Page 8

9. Successful? We think so, because… Families do not have to spend time at hospital Most children can live a normal life Treatment does not dominate their activities Training at home gives a lot of experience We only see the children every 4-6 month Follow-up visits a month after start clear out any misunderstandings Reduce side effects We reduce the need for treatment rooms & staff (Management likes this too ;o) Firenze, October 2012 Page 9

10. Results & Discussion Today we only have 2 children in treatment with IVIG but 34 in subcutaneous way Only 1 child during the past 4 years with the method has changed the SC back to IV (compliance problems) Our impression is that both child and parents have learned to cope and appreciate the method and is very satisfactory for both parts Firenze, October 2012 Page 10

11. Questions? Firenze, October 2012 Page 11

12. Thank you for listening Hope you enjoyed ”the show”, and that it has been of use to you. If you want to contact any of us for further information and/or discussion, please feel free to contact us at Aarhus University Hospital; Malene Kapper Mail: malekk@rm.dk Tel: +45 7845 1661 Anne Grete Boje Mail: annboeje@rm.dk Tel: +45 7845 1661 Firenze, October 2012 Page 12