H. Jansen, A. Malfroot, C. Sevens, AM. Depoorter - PowerPoint PPT Presentation

Title: H. Jansen, A. Malfroot, C. Sevens, AM. Depoorter


1
Czech Republic11 - 14 June 2008
Socio Economic and QoL status in the Belgian CF
Registry

• H. Jansen, A. Malfroot, C. Sevens, AM. Depoorter

Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
2
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Aims
Description of the Socio Economic Status (SES)
and Quality of Life (QoL) variables of persons
with CF in Belgium
- - -
Not discussed in this presentation
relation between SES/QoL parameters and disease
outcome
identification of possible SES/QoL parameters to
use in future CF Registry questionnaires
assessment of role of the CF Registry in the
management of Quality of Life and Socio Economic
Status variables (minimal set of additional
questions to the annual registry Questionnaire)
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
3
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Methods procedure
- - - - -
QoL questionnaire validated Flemish and French
translations of the Cystic Fibrosis Questionnaire
(CFQ-R) for age groups (years) 6 (Quittner et
Al. 2005)1. Parents questionnaire filled in at
home, patients questionnaire filled in a by
trained interviewer SES questionnaire extract
from the Belgian "Health Interview Survey"
questionnaire (1997 - 2004) (HIS) Flemish and
French versions for all age groups 2 existing
annual registration of genetic and clinical
parameters of the Belgian CF Registry (BMR-RBM)3
a unique code for each questionnaire, identical
to the registry code informed consent in the
medical file at the CF center
Methods analysis
Descriptive and multivariate analysis with
Statistic Analytic Software (SAS)
1. Quittner AL, Buu A, Messer MA, Modi AC,
Watrous M. Development and validation of The
Cystic Fibrosis Questionnaire in the United
States a health-related quality-of-life measure
for cystic fibrosis. Chest 2005
128(4)2347-2354. 2. Health interview survey in
Belgium, Institute of Public Health 2004,
http//www.iph.fgov.be/epidemio/epien/index4.htm 3
. The Belgian Cystic Fibrosis Registry, Institute
of Public Health, http//www.iph.fgov.be/epidemio/
epien/index20.htm
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
4
Preliminary results
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Questionnaire response
7 CF-Reference centers
1036 patients
? 10 CF care units

• 6 CF care units participated

QoL and SES questionnaires reception closed May
5th, 2008 Clinical registry data reception
closed May 30th, 2008 (2 centers not ready)
study response ratio 74.9
Enrollment criteria CF patient present in
waiting room during spare time of the interviewer
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
5
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Beside yourself how many people are there in the
household ?
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
6
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
INCOME
In case you do not want to answer please state
if this is more than 2000
What is the monthly available income of the
household? ( )
Gross available income analysis of equivalent
income ongoing
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
7
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
EXPENDITURE FOR HEALTH CARE
How much was refunded by your health insurance?
( )
How much did the household spend last month on
healthcare? ( )
Equivalent income has to be calculated
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
8
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Housing by income
HIS Health Interview Survey IPH Belgium 2004
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
9
BMR_ID
Housing environment
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
HIS Health Interview Survey IPH Belgium 2004
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
10
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Environmental conditions
Study questions - difference between lt 2000
and gt 2000 statistically significant ? -
difference between the CF population and the
national population ?
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
11
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Education
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
12
Education
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
13
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Work
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
14
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Work
Study questions - difference between the CF
population and the national population ?
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
15
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Work
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
16
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Quality of Life
CFQ-R questionnaires data control and validation
are ongoing 70 of data ready for processing
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
17
BMR_ID
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
To do Categorized by disease severity according
to pulmonary functioning tests
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
18
The work is not finished yet !
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Preliminary results, full dataset not completely
analysed yet, relationship SES - QoL
ongoing Several study questions to be solved
Which SES and/or QoL parameters are determinants
of disease outcome?
age at diagnosis FEV1predicted weight / height
Z-scores age of PA / BCC colonization onset .
SES
?
QoL
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be
19
Authors H. Jansen, A. Malfroot, C. Sevens, AM
Depoorter
Acknowledgments
Scientific Institute of Public Health WIV-ISP
Rue Juliette Wytsmanstraat 14 1050 Brussels
Belgium T 32 2 642 50 30 F 32 2 642 54 10
BMR-RBM Belgisch Mucoviscidose Register
Registre Belge de la Mucoviscidose 32 2 642 87
86 F 32 2 642 54 10 e-mail
Herwig.Jansen_at_iph.fgov.be