A questionnaire for assessing the impact of socio-economic factors in MG

1. A questionnaire for assessing the impact of socio-economic factors in MG A.H. Maniaol, C. Tallaksen Department of Neurology Oslo University Hospital, Ullevål

2. Determinants of health • Socio-economic factors • Environment • Health behaviours • Biological and personal factors ECHI: European community health indicators* *The ECHI project; health indicators for the European Community; www.ec.europa.eu

3. Determinants of health • Education • Occupation • Employment • Poverty and income distrubution Socio-economic factors • Socio-economic factors: • social and economic factors that characterize the individual or group within the social structure • 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

4. How could socio-economic factors affect health? • Mediators: • Social: education, occupation, living conditions, lifestyle… • Economic: health-care access, payment of medications.. • Psychosocial : emotions, stress, depression, anxeity • Biological hypothesis? Low SES Psychosocial stress ↑ autonomic and neuroendocrine response Immune system ↑↑ • Ref. Socio-economic status and health, a neurobiological perspective • Roy J.; Medical hypothesis(2004) 62, 222-227 Post-stress infection, disease autoimmunity ?

5. Modifying factors in MG Demographic and socio-economic factors Drugs Alcohol ? Stress Diet Infections Smoking Environmental factors Hormones Myasthenia gravis Genes Immune system

6. Socio-economic factors in MG and other autoimmune diseases 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)

7. Socio-economic factors in MG Few MG studies have reported the influence of socio-economic factors • Summary • Few studies! • Lack of power- larger-scale studies needed! • Social aspects in Myasthenia Gravis • L. Kaukiainen et.al Actaneurol.Scan 55, 377-384, 1977 • 210 of 240 (88%), prevalence 5,2 per 100 000 (1975) • more intermediary-school and university level • higher social class • greater part live in urban areas • A study of social, medical and emotional problems in 26 patients • J. Sneddon, Lancet 1980;1;526-528 1977 • 26 of 30 answered a questionnaire • Social factors, stress, temperature seemed to have an impact on disease onset and course • But, this study should be considered as a pilot study

8. Socio-economic factors in other autoimmune diseases • Type 1 diabetes: • Hassan K, J Pediatr 2006 Oct;149(4):526-31 • Kakleas K, Diabetes Metab 2009 Nov;35(5):339-50 • RA: • Liao KP, CurrOpinRheumatol 2009 May;21(3):279-83. • SLE: • Meller S, Autoimmun Rev 2005 Apr;4(4):242-6. • Inflammatory bowel diseases: • Li X, InflammBowel Dis 2009 Apr;15(4):608-15 • Nahon S,InflammBowel Dis 2009 Apr;15(4):594-8 • MS: • Marrie R, MultScler 2008 Sep;14(8):1091-8 • Lowis GW,Sci Total Environ 1992 Sep 11;126(1-2):139-64.

9. ......Socio-economic factors in other autoimmune diseases • SES important environmental modifying factor • SES affects • Risk of disease • Disease outcome • Mortality • Comorbidity • Risk of hospitalization • Health related quality of life (HRQoL) • Other environmental factors related to SES: • Health behaviors (smoking, alcohol, diet) • Psychosocial factors (stress, depression, mental health)

10. How to develop such a questionnaire • EuroMyasthenia 2006-2009 • 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?

11. 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 Item selection/reduction Specialist advice Patient comments Test-retest reliability 4-6 months interval 28 patients included (first responders) 24 participated (n=24) Criterion validity Specificity and sensitivity MG questions of symptoms at disease onset (n=24) Questions modified according to results Establishment of a final version

12. How to develop such a questionnaire? Already validated questions Questions to validate • Socio-economic status* • Education • Occupation • Income • Employment • Disability • Health behavior* • Smoking • Alcohol • Drugs • Coffee, tea, vitamins • Physical activity • MG specific questions • Onset • Clinical characteristics • Disease severity • Treatment • Comorbidity other autoimmune diseases • Follow up • Disease information • Women Results *www.ntnu.no/hunt/inenglish

13. How to develop such a questionnaire? Final version: Modifying questions of MG clinical characteristics Pilot version:

14. Final questionnaire* • Valid and reliable • Measures environmental 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

15. Future aspects • Use the questionnaire in larger-scale epidemiological studies (case-control, cross-sectional) • Norway: On-going postal survey from Nov. 2009 • All MG patients in Norway (515) • HRQoL included • 3 week response rate: 240 • Adapt and translate to other languages • Reproduce epidemiological findings • Compare data between countries • Genetic-environment studies, epigenetics

16. Conclusive remarks • The impact of socio-economic factors and other environmental factors in MG are still unknown • The questionnaire for assessing these factors is now ready! • Collaborative networks are essential

17. Acknowledgments • Sonia Berrih-Aknin • Nicole Kerlero-de-Rosbo • All associated and collaborative partners in the EuroMyasthenia Network • MG patients in Norway • Funding: The Norwegian Association for patients with muscle diseases