A questionnaire for assessing the impact
of socio-economic factors in MG
A . H . M A N I A O L , C . TA L L A K S E N
D E PA R T M E N T O F N E U R O L O G Y
O S L O U N I V E R S I T Y H O S P I TA L , U L L E V Å L
Determinants of health
ECHI: European community health indicators*
o Socio-economic factors
o Environment
o Health behaviours
o Biological and personal factors
*The ECHI project; health indicators for the European Community; www.ec.europa.eu
Determinants of health
Socio-economic factors
o Socio-economic factors:
social and economic factors that characterize the
individual or group within the social structure
o Occupation
Measure SES
Socio-economic status (SES):
ooEmployment
an individual `s or group`s social and economic position
o Poverty
income distrubution
within and
a hierarchal
social structure, measured by socioeconomic factors
o Education
How could socio-economic factors affect health?
o Mediators:
o Social: education,
occupation, living
conditions, lifestyle…
o Economic: health-care
access, payment of
medications..
o Psychosocial : emotions,
stress, depression, anxeity
Ref. Socio-economic status and
health, a neurobiological perspective
•Roy J.; Medical hypothesis(2004) 62,
222-227
o Biological hypothesis?
Low SES
Psychosocial stress
↑ autonomic and
neuroendocrine response
Immune system ↑↑
Post-stress
infection, disease
autoimmunity ?
Modifying factors in MG
Demographic and socio-economic factors
Drugs
Alcohol
Diet
Smoking
?
Stress
Infections
Environmental
factors
Hormones
Myasthenia
gravis
Genes
Immune system
Socio-economic factors in MG and other
autoimmune diseases
Search terms “socio-economic factors” and “disease” and hits in databases
Disease
Prevalence
rate per 100
000*
PubMe Medlin EMBAS
d
e
E
Type 1 diabetes
300-600
643
618
209
Rheumatoid
arthritis
300-800
675
597
218
Systemic lupus
erythematosus
30-100
205
162
137
Inflammatory
bowel diseases
100-200 (CD) 237
150-290 (UC)
216
14
362
102
Multiple sclerosis 100-180
403
*Recent prevalence data for autoimmune diseases; G.S Cooper et al./ Journal of Autoimmunity (2009)
Socio-economic factors in MG
Few MG studies have reported the influence of
socio-economic
Summary factors
oo Social
A
study
of social,
medical andGravis
emotional
Few
studies!
aspects
in Myasthenia
problems
inet.al
26 patients
L.
Kaukiainen
Acta neurol.Scan 55, 377-384, 1977
Lack
of powerlarger-scale
studies
needed!
J. Sneddon,
Lancetprevalence
1980;1;526-528
1977
oo 210
of 240
(88%),
5,2 per
100 000
(1975)
o
o
o
o
26 of 30
answered a questionnaire
more
intermediary-school
and university level
Social factors,
stress, temperature seemed to have an
higher
social class
impact on
disease
and
course
greater
part
live inonset
urban
areas
But, this study should be considered as a pilot study
Socio-economic factors in other autoimmune
diseases Type 1 diabetes:
Disease
RA:
Socio-economic
•Hassan K, J Pediatr 2006
Oct;149(4):526-31
• Kakleas K, Diabetes Metab 2009
statusNov;35(5):339-50
(SES)
•Liao 1KP,
Curr Opin Rheumatol
- Low SES  poor glycemic control, psychiatric -and eating
Type
diabetes
2009 May;21(3):279-83. disorders, impaired QoL
SLE: RA (not RF-neg RA)
- lower SES  increases risk RF-pos
Rheumatoid
•Meller S, Autoimmun Rev 2005
arthritis
(RA)
Increases
risk
40%
without
university
degree
Inflammatory bowel diseases:
Apr;4(4):242-6.
•Li X, Inflamm Bowel Dis 2009
- lower SES worsen outcome and prognosis
Systemic
lupus
Apr;15(4):608-15
• Nahon S, Inflamm Bowel- lower
Dis SES increases mortality
erythematosus
MS:
2009 Apr;15(4):594-8
•Marrie R, Mult Scler 2008
not CD
Inflammatory bowel - lower SES  increases risk UC,
Sep;14(8):1091-8
diseases (CD) (UC)
- higher SES increases risk CD!
• Lowis GW, Sci Total Environ
1992 Sep 11;126(1-2):139-64.
-higher SES (urban areas), lower SES (rural areas) 
Multiple sclerosis
increases risk of disease, affects hospitalization and comorbidity
......Socio-economic factors in other
autoimmune diseases
o SES important environmental modifying factor
o SES affects

Risk of disease

Disease outcome
Mortality
Comorbidity
Risk of hospitalization
Health related quality of life (HRQoL)




o Other environmental factors related to SES:
Health behaviors (smoking, alcohol, diet)
 Psychosocial factors (stress, depression, mental health)

How to develop such a questionnaire
o EuroMyasthenia 2006-2009
o Aim of questionnaire:
 Self-administered
 MG specific
 Feasible for patients
 Standardized in clinical characteristics
 Standardized in assessing health determinants (ECHI)
 Valid and reliable
 Easy to adapt and translate for collaborative partners
 Suitable in large-scale epidemiological studies
How?
How to develop such a questionnaire?
S tage1: Development of a draft questionnaire
Literature review and question development
Stage 2: Pilot study of 68 MG patients
57 participants tested and gave critical feedback
Stage 3: Validity and reliability tests
Self-made MG specific questions
Content validity
Test-retest reliability
Criterion validity
Item selection/reduction
4-6 months interval
Specificity and sensitivity
Specialist advice
28 patients included (first MG questions of
responders)
symptoms at disease
onset (n=24)
24 participated (n=24)
Patient comments
Questions modified according to results
Establishment of a final version
How to develop such a questionnaire?
Already validated questions
o Socio-economic status*
Education
 Occupation
 Income
 Employment
 Disability

o Health behavior*
Smoking
 Alcohol
 Drugs
 Coffee, tea, vitamins
 Physical activity

*www.ntnu.no/hunt/inenglish
Questions to validate
o MG specific questions
Onset
 Clinical characteristics
 Disease severity
 Treatment
 Comorbidity other
autoimmune diseases
 Follow up
 Disease information
 Women

Results
How to develop such a questionnaire?
Final version:
Modifying questions of MG clinical
characteristics
Pilot version:
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Do
ub
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Kappa (95%CI)
Test-retest reliability
Symptoms of regional muscle weakness
Question 21a
Question 21b revised
Final questionnaire*
o Valid and reliable
o Measures environmental
o
o
o
o
factors (SES)
May be combined with QoL
questionnaires, depression
scale etc. psychological
aspects
Suitable for large-scale studies
Easy to translate and adapt
Designed in Cardiff TeleForm
software; direct scan into a
database
*Submitted for publication in Neuroepidemiology
Future aspects
o Use the questionnaire in larger-scale epidemiological
studies (case-control, cross-sectional)
o Norway: On-going postal survey from Nov. 2009



All MG patients in Norway (515)
HRQoL included
3 week response rate: 240
o Adapt and translate to other languages
 Reproduce epidemiological findings
 Compare data between countries
o Genetic-environment studies, epigenetics
Conclusive remarks
o The impact of socio-economic factors and other
environmental factors in MG are still unknown
o The questionnaire for assessing these factors is now ready!
o Collaborative networks are essential
Acknowledgments
o Sonia Berrih-Aknin
o Nicole Kerlero-de-Rosbo
o All associated and collaborative partners in the
EuroMyasthenia Network
o MG patients in Norway
o Funding: The Norwegian Association for patients with
muscle diseases