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…

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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.

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Step by step – the methods to achieve

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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.

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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

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It works…

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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

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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

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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)

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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

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Questions?

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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 KapperMail: malekk@rm.dkTel: +45 7845 1661

Anne Grete Boje Mail: annboeje@rm.dkTel: +45 7845 1661

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