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