Family education programme nephrotic Family education programme nephrotic syndrome ... nephrotic syndrome

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  • Family education programme nephrotic syndrome

    Marcus R. Benz1, E.-M. Rth2, F. Kusser1, T. Volkmar1, H. Fehrenbach3, D. Kleinert3, J. Dtsch2, L.T. Weber1

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

    Pipilotta und der Nierendetektiv

  • Family educationprogrammme

    nephrotic syndrome

    heavy proteinuria (> 1g/m2 x d)

    hypoalbuminaemia (

  • 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)

    Rth EM et al., 2004, J Pediatr

  • Family educationprogrammme

    nephrotic syndrome

    Psychosocialadjustment

    Rth 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

  • 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

  • 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

  • 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. RthMnchen Mnchen Mnchen Erlangen

    contact: Marcus.Benz@med.uni-muenchen.de or www.fsns.de