a.h. maniaol, c. tallaksen department of neurology oslo university hospital, ullevÅl a...
TRANSCRIPT
A.H. MANIAOL, C. TALLAKSEN
DEPARTMENT OF NEUROLOGY
OSLO UNIVERSITY HOSPITAL, ULLEVÅL
A questionnaire for assessing the impact of socio-economic factors in MG
Determinants of health
o Socio-economic factors
o Environment
o Health behaviours
o Biological and personal factors
ECHI: European community health indicators*
*The ECHI project; health indicators for the European Community; www.ec.europa.eu
Determinants of health
o Education
o Occupation
o Employment
o Poverty and income distrubution
Socio-economic factors
o Socio-economic factors: social and economic factors that characterize the individual or group within the social structure
o Socio-economic status (SES):an individual `s or group`s social and economic position within a hierarchal social structure, measured by socio-economic factors
Measure SES
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
o Biological hypothesis?
Ref. Socio-economic status and health, a neurobiological perspective•Roy J.; Medical hypothesis(2004) 62, 222-227
Ref. Socio-economic status and health, a neurobiological perspective•Roy J.; Medical hypothesis(2004) 62, 222-227
Low SESPsychosocial stress
↑ autonomic and neuroendocrine response
Immune system ↑↑
infection, diseaseautoimmunity ?
Post-stress
Modifying factors in MG
Environmental factors
Genes Immune system
Myasthenia gravisMyasthenia gravis
Demographic and socio-economic factors
Smoking
Diet
AlcoholStress
Infections
Hormones
Drugs
?
Socio-economic factors in MG and other autoimmune diseases
Disease Prevalence
rate per 100 000*PubMed Medline EMBASE
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)
150-290 (UC)
237 216 14
Multiple sclerosis 100-180 403 362 102
Myasthenia gravis 8-15 11 8 6
Search terms “socio-economic factors” and “disease” and hits in databases
*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 factors
o Social aspects in Myasthenia GravisL. Kaukiainen et.al Acta neurol.Scan 55, 377-384, 1977
o 210 of 240 (88%), prevalence 5,2 per 100 000 (1975)o more intermediary-school and university level o higher social classo greater part live in urban areas
o A study of social, medical and emotional problems in 26 patients J. Sneddon, Lancet 1980;1;526-528 1977
o 26 of 30 answered a questionnaireo Social factors, stress, temperature seemed to have an
impact on disease onset and courseo But, this study should be considered as a pilot study
Socio-economic factors in other autoimmune diseases
Disease Socio-economic status (SES)Type 1 diabetes - Low SES poor glycemic control, psychiatric -and eating
disorders, impaired QoL
Rheumatoid arthritis (RA)
- lower SES increases risk RF-pos RA (not RF-neg RA)
- Increases risk 40% without university degree
Systemic lupus erythematosus
- lower SES worsen outcome and prognosis
- lower SES increases mortality
Inflammatory bowel diseases (CD) (UC)
- lower SES increases risk UC, not CD
- higher SES increases risk CD!
Multiple sclerosis -higher SES (urban areas), lower SES (rural areas) increases risk of disease, affects hospitalization and comorbidity
Type 1 diabetes:•Hassan K, J Pediatr 2006 Oct;149(4):526-31• Kakleas K, Diabetes Metab 2009 Nov;35(5):339-50
Type 1 diabetes:•Hassan K, J Pediatr 2006 Oct;149(4):526-31• Kakleas K, Diabetes Metab 2009 Nov;35(5):339-50RA:
•Liao KP, Curr Opin Rheumatol 2009 May;21(3):279-83.
RA:•Liao KP, Curr Opin Rheumatol 2009 May;21(3):279-83.
SLE:•Meller S, Autoimmun Rev 2005 Apr;4(4):242-6.
SLE:•Meller S, Autoimmun Rev 2005 Apr;4(4):242-6.
MS:•Marrie R, Mult Scler 2008 Sep;14(8):1091-8• Lowis GW, Sci Total Environ 1992 Sep 11;126(1-2):139-64.
MS:•Marrie R, Mult Scler 2008 Sep;14(8):1091-8• Lowis GW, Sci Total Environ 1992 Sep 11;126(1-2):139-64.
Inflammatory bowel diseases:•Li X, Inflamm Bowel Dis 2009 Apr;15(4):608-15• Nahon S, Inflamm Bowel Dis 2009 Apr;15(4):594-8
Inflammatory bowel diseases:•Li X, Inflamm Bowel Dis 2009 Apr;15(4):608-15• Nahon S, Inflamm Bowel Dis 2009 Apr;15(4):594-8
......Socio-economic factors in other autoimmune diseases
o SES important environmental modifying factoro 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 2006-2009o 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 validityItem selection/reduction
Specialist advice
Patient comments
Test-retest reliability4-6 months interval
28 patients included (first responders)
24 participated (n=24)
Criterion validitySpecificity and sensitivity
MG questions of symptoms at disease onset (n=24)
Questions modified according to resultsEstablishment of a final version
How to develop such a questionnaire?
o Socio-economic status* Education Occupation Income Employment Disability
o Health behavior* Smoking Alcohol Drugs Coffee, tea, vitamins Physical activity
o MG specific questions Onset Clinical characteristics Disease severity Treatment Comorbidity other
autoimmune diseases Follow up Disease information Women
Already validated questions Questions to validate
Results*www.ntnu.no/hunt/inenglish
How to develop such a questionnaire?
Modifying questions of MG clinical characteristics
Pilot version:
Final version:
Test-retest reliability
00,10,20,30,40,50,60,70,80,91
Symptoms of regional muscle weakness
Kap
pa (9
5%C
I)
Question 21a
Question 21b revised
Final questionnaire*
o Valid and reliableo Measures environmental
factors (SES)o May be combined with QoL
questionnaires, depression scale etc. psychological aspects
o Suitable for large-scale studieso Easy to translate and adapto 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