lena westbom mmcup fetal medicine
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Overview of postnatal
outcome in children born with
MMC in the Nordic countries.
Lena Westbom (SE), Ingrid Olsson
(SE), Petra Aden (NO)
Margareta Dahl (SE)
MMCUP
a secondary prevention follow-up
program in spinal dysraphism and
hydrocephalus
Göteborg150416
Swedish professional network for MMC/
Lena Westbom
Why follow up program?
- lifelong risk for complications
- complex medical needs *remember everything
- coordinated health care *stay healthy
- best treatment? *evidence missing
- new survivors, new health care personnel
Aims MMCUP
- to prevent complications and loss of
function
- to increase knowledge
- to improve cooperation
- to boost high quality of care – effective
interventions at the right time
(skip in-effective treatments)
Methods
Follow-up according to the
Swedish national guidelines in MMC/HC
Guidelines for medical follow-up
Swedish neuropaediatric society
2009-2013
Guidelines PT and OT follow-up
See links from www.mmcup.se
Methods
Standardised follow-up according to the Swedish national
guidelines in MMC/HC
Guidelines for medical follow-up
Swedish neuropaediatric society
2009-2013
Guidelines PT and OT follow-up
See links from www.mmcup.se
Measurements on body structure and function (PT, OT, UT)
Recording of interventions + indications (+ neurosurg, urol, ort)
Reports on daily function, activites and health (PROM)
Follow-up according to the
Swedish national guidelines in MMC/HC
Methods
standardised follow-up
early detection
early intervention
standardised evaluation
standardised follow-up
Comparisons
0
10
20
30
40
50
60
70
80
9502
01
9509
03
9603
05
9609
27
9704
15
9710
10
9803
04
9810
22
9902
15
Support in the choice of
treatment for each person
with SB/HC
National quality of care registry
- comparisons of results of
medical care and surgical
interventions
Follow-up program in SB/HC
Support process of care –
lists of planned investigations,
treatments, visits to the clinic
Senaste us Nästa us Pnr Namn
2010, Jan 2011, jan 020101-0011
M Jönsson
2011, april 2011, april 010101-0345
M Karlsson
2011, juli 2012, juli 040506-1234
S Pettersson
2011, aug 2012, aug 010101-0345
M Karlsson
2011, 2012, 000101-0135
aug-07
okt-07
dec-07
feb-08
apr-08
jun-08
aug-08
okt-08
dec-08
feb-09
apr-09
jun-09
aug-09
okt-09
dec-09
feb-10
apr-10
jun-10
aug-10
Hip abduction ROM and
functional bladder volume
and detrusor pressure
over time
Self-reports
Research
Health care
improvements
MMC/lipoMMC – prio 1Born > 2007 - start 2012
Older children and adults - prio 2Hydrocephalus without MMC; all spinal dysrafism
www.mmcup.se
MMCUP –Sweden Local habilitation centres
Hospitals
Regional MMCUP-teams/
Coordinator (UT, nurses)
Central team/RCSYD
Registry holder
Competence groups:
UTs/Urol
PTs
OTs
Ort
Nsurg
Nped/Neurol/Rehab drs
Pslg, Ped
www.mmcup.se
0
10
20
30
40
50
60
70
27 år 26 år 25 år 24 år 23 år 22 år 21 år 20 år 19 år 18 år 17 år 16 år 15 år 14 år 13 år 12 år 11 år 10 år 9 år 8 år 7 år 6 år 5 år 4 år 3 år 2 år 1 år 0 år
Number of persons born with MMC/lipoMMC i living in Sweden 2013
in each age group (total 821 persons)
MMC/lipoMMC in MMCUP birth years 2007 to 2014
142 children, of whom 14% born abroad
122 born in Sweden:
15 children per year
Incidence : 1.26/10 000
44% no hydrocephalus
33% closed celes
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Prenatalt (34) Postnatalt (12) Prenatalt (3) Postnatalt (15)
Öppet bråck Hudtäckt bråck
Naturlig förlossning Planerat kejsarsnitt Akut kejsarsnitt
Prenatal/postnatal diagnosis and mode of delivery in open and
closed MMC/LipoMMC, children born 2007-2013 in Sweden
Operations MMC/lipoMMC in MMCUP birth years 2007 to 2013 (n=112)
410 operations in all 112 children 0-6 years of age
Median 2-3 operations/child; range 0-16 op
256 were neurosurgical operations:
1/3 operations/reop on the cele
1/2 shunting op/reop
40 children only one shuntoperation
27 children reoperated 1-7 times
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