ESPN 50th Annual Meeting

ESPN 2017


 
Outpatient Nephrotic Syndrome with physician and specialized nurse
MARJA KENSELAAR 1 MARJOLEINE VAN DER ZIJDE 1 EISKE DORRESTEIN 1

1- ERASMUS MC
 
Introduction:

Objectives 1. Improving care for children with nephrotic syndrome by introducing the specialized nurse at the outpatient clinic. 2. Developing written information regarding the care for children with nephrotic syndrome. 3. Stimulating self-management for the patients and their care-givers.

Material and methods:

Method • Children suffering steroid sensitive nephrotic syndrome have their consult in the morning at the same outpatient clinic. The patients are alternately seen by a dedicated pediatric nephrologist and one of the two specialized nurses, supervised by the pediatric nephrologist. By doing this, we aimed more time for consultation. Furthermore the different caretakers would guarantee a more multidisciplinary approach. • All patients have received a letter with information before their first visit, regarding the new organization of our care. • To measure the quality of care we performed a Dutch validated survey among all children visiting our outpatient clinic with nephrotic syndrome over 12 years of age and all parents. The same questionnaire was repeated 1 year after introducing the specialized nurse care. • Literature search was performed, but revealed only scarce data on this subject.

Results:

Results At baseline 32 parents and 25 kids returned a completed survey. After 1 year we received surveys of 36 parents and 33 kids. Results were analyzed and details will be presented. Noticeably more contacts by mail or phone with parents were recorded.

Conclusions:

Conclusions • Parents know to find us for questions and they contact us easier. • The same faces at the outpatient clinic. • Written information regarding nephrotic syndrome is completed. • Preliminary results surveys: score after 1 year 3.3 points higher. Further analysis will follow.