Family education programme nephrotic syndrome Family education programme nephrotic syndrome ... nephrotic syndrome ... Microsoft PowerPoint - 1.5_Benz.ppt Author:

Family education programme nephrotic syndrome

Marcus R. Benz1, E.-M. Rüth2, F. Kusser1, T. Volkmar1, H. Fehrenbach3, D. Kleinert3, J. Dötsch2, L.T. Weber1

1 Paediatric Nephrology, Dr. von Haunersches Kinderspital, children’s university hospital, Munich, Germany2 Paediatric Nephrology, children’s university hospital, Erlangen, Germany3 Paediatric Nephrology, children’s hospital, Memmingen, Germany

Pipilotta und der Nierendetektiv

Family educationprogrammme

nephrotic syndrome

• heavy proteinuria (> 1g/m2 x d)

• hypoalbuminaemia (<25 g/L)

Nephrotic syndrome in childhood


nephrotic syndrome


nephrotic syndrome

Relapsing disease• >50% 80-90%

- 35-50% frequent relapser or steroid dependent

• persistent disease in adulthood: 7-42%


nephrotic syndrome

Health related qualityof life (HRQoL)

Rüth EM et al., 2004, J Pediatr


nephrotic syndrome

Psychosocialadjustment

Rüth EM et al., 2004, J Pediatr


nephrotic syndrome

Family education programme nephrotic syndrome

Pipilotta und der Nierendetektiv


nephrotic syndrome

Improvement of HRQoLImprovement psychosocial adjustment

Improvement of state of health

Acceptance of nephroticsyndrom as a

chronic-relapsing disease

• less side-effects of the drugs• less hospitalization • less days absent of school

Improvement of family interaction

Enhancement of self-

confidence

Knowledge-transfer

Early detection of relapse

Management in remission

Coping in the family

Interdisciplinary team

Age-appropriate didactics

Pragmatic coping strategies

Family as important network


nephrotic syndrome

Organisation• 4-6 children (similar age) + parents + siblings• team

- doctors- psychologists- nurses

• all-day• 4 units (children/ parents)


nephrotic syndrome


nephrotic syndrome


nephrotic syndrome

Sieve-model

Sieve with more bigger wholes, big amount of proteins passes.

Sieve with big wholes, little amount of proteins passes.

Sieve with small wholes, but proteins do not pass.


nephrotic syndrome

protein

++++++++++tracenegativ

Sieve-model

Sieve with more bigger wholes, big amount of proteins passes.

Sieve with big wholes, little amount of proteins passes.

Sieve with small wholes, but proteins do not pass.


nephrotic syndrome

Detective „Mr. Kidney“ is after the protein

1. Urine dipstickIs there protein in the urine?Measurement: Daily in the morning

2. scales:Gain of weight?Measurement: daily, if albustix is positive

3. mirror:Are there any oedema visible?

4. protocol:All results will be collected and written down in hereVery important!!!

These are his tools:


nephrotic syndrome

vessel

protein

vessel

urinarybladder

kidney-sieve (=glomerulus)

vesselvessel

kidney-sieve (=glomerulus)

proteinurinarybladder


nephrotic syndrome


nephrotic syndrome

Evaluation before and 6 months after intervention

• HRQoL (TACQOL-PF und TACQOL-CF)• psychosocial adjustment – children (CBCL)• psychosocial adjustment – children in school (TRF)• psychological adjustment – parents (BSI) • disease specific questionnaire • life events of family• family relationship index


nephrotic syndrome

Participants

4,3 (0,6 - 8,4)Interval: diagnosis to programme

3frequent relapser

4steroid dependent

2steroid resistant

5infrequent relapser

Clinical course

9,0 (5,8 - 11,9)Age at programme

4,6 (1,8 - 10,1)Age at diagnosis

7 female7 maleGender

n = 14


nephrotic syndrome

HRQoL (TACQOL-PF) – mothers

0,03**2,312,12,911,014Emotion (negative)

0,352,031,21,730,814Autonomy

0,01**1,7430,44,227,414Motor

0,112,926,34,324,314Body

0,822,4313,82,313,714Emotion (positive)

0,242,429,92,929,114Social

0,265,527,05,625,914cognition

SDmeanSDmeann

p *6 months afterintervention

before intervention

*Wilcoxon-Test **p<0,05

Psychological adjustment – parents (BSI)

0,05**44,649,013father

0,01**43,648,714mother

meanmeann

p *6 monthsafter

Beforeintervention

before intervention

6 monthsafter intervention


never rarely sometimes frequently(e.g. infections) (e.g. daily dipstick)

never rarely sometimes frequently(e.g. infections) (e.g. daily dipstick)

thoughts of relapse (mother)


nephrotic syndrome

CBCL - motherInternalizing score: withdrawn, somatic complaints, anxiety/depression,

thought problemsExternalizing score: social problems, attention problems, delinquent and

aggressive behaviour

0,118,247,78,352,613Externalizing-Score

0,03**8,151,012,157,513Internalizing-Score

0,02**8,250,810,555,913Total-Score

SDmeanSDmeann

p *6 months after intervention

Before interventionmother



nephrotic syndrome

ConclusionFamiliy education programme nephrotic syndrome:• „empowerment“ as aim • improves HRQoL • improves psychosocial adjustment• possible new component in the integrated treatment of nephrotic syndrome in childhood


nephrotic syndrome


nephrotic syndrome

foundation:

T. Volkmar M. R. Benz F. Kusser E. M. RüthMünchen München München Erlangen

contact: [email protected] or www.fsns.de

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Family education programme nephrotic syndrome Family education programme nephrotic syndrome ... nephrotic syndrome ... Microsoft PowerPoint - 1.5_Benz.ppt Author: