family education programme nephrotic syndrome family education programme nephrotic syndrome ......
TRANSCRIPT
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
Family educationprogrammme
nephrotic syndrome
Family educationprogrammme
nephrotic syndrome
Relapsing disease• >50% 80-90%
- 35-50% frequent relapser or steroid dependent
• persistent disease in adulthood: 7-42%
Family educationprogrammme
nephrotic syndrome
Health related qualityof life (HRQoL)
Rüth EM et al., 2004, J Pediatr
Family educationprogrammme
nephrotic syndrome
Psychosocialadjustment
Rüth EM et al., 2004, J Pediatr
Family educationprogrammme
nephrotic syndrome
Family education programme nephrotic syndrome
Pipilotta und der Nierendetektiv
Family educationprogrammme
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
Family educationprogrammme
nephrotic syndrome
Organisation• 4-6 children (similar age) + parents + siblings• team
- doctors- psychologists- nurses
• all-day• 4 units (children/ parents)
Family educationprogrammme
nephrotic syndrome
Family educationprogrammme
nephrotic syndrome
Family educationprogrammme
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.
Family educationprogrammme
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.
Family educationprogrammme
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:
Family educationprogrammme
nephrotic syndrome
vessel
protein
vessel
urinarybladder
kidney-sieve (=glomerulus)
vesselvessel
kidney-sieve (=glomerulus)
proteinurinarybladder
Family educationprogrammme
nephrotic syndrome
Family educationprogrammme
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
Family educationprogrammme
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
Family educationprogrammme
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
*Wilcoxon-Test **p<0,05
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)
Family educationprogrammme
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
*Wilcoxon-Test **p<0,05
Family educationprogrammme
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
Family educationprogrammme
nephrotic syndrome
Family educationprogrammme
nephrotic syndrome
foundation:
T. Volkmar M. R. Benz F. Kusser E. M. RüthMünchen München München Erlangen
contact: [email protected] or www.fsns.de