1. Public Health – Dresden Medical School Complementary care seeking behavior in patients with Myasthenia gravis J. Klewer 1, L. Wondzinski 1, A. Friedrich 1, R. Amman 2, D. Pöhlau 3, J. Kugler 1 1 Public Health, Dresden Medical School, Dresden, Germany 2 German Myasthenia Association, Bremen, Germany 3 Dept. of Neurology, Kamillus-Hospital, Asbach, Germany

2. Public Health – Dresden Medical School Myasthenia gravis Incidence: 2-20 per 1 Mio. residents Prevalence: 50-100 per 1 Mio. residents  Autoimmune disease caused by antibodies  Defect in neuromuscular transmission with muscle weakness and fatigue

3. Public Health – Dresden Medical School Myasthenia gravis - Symptoms  Age at onset: 20-40 years  In 60-80% of the patients associated with thymomas  Often: initial weakness of ocular muscles (ptosis, diplopia)  Facial muscle weakness; speech, chewing and swallowing difficulties  The patterns of muscle involvement varies between individuals; heterogeneous progress of the muscle weakness (limb weakness, respiratory muscle weakness)

4. Public Health – Dresden Medical School - Spontaneous remission rate in 20% of the patients. - In the past: 30% of the patients died within 3 years. - Today: Around 5% of the patients deteriorate and die (mainly due to wrong therapies) - With therapy: Normal life expectancy & fit for work ! Myasthenia gravis – Therapy und Prognosis - Immunosuppression (i.e. Prednisolone, Azathioprine) - Anticholinesterase treatment (i.e. Pyridostigmine) - Thymectomy (Thymoma)

5. Public Health – Dresden Medical School Study aims Studies evaluating medical care and quality of life in German Myasthenia gravis patients are still lacking: ? Demographical data of German M.g. patients ? ? M.g. related complaints and disabilities ? ? Therapeutical course ? By whom ? ? Financial burdens due to M.g. ? In detail ? ? Inasmuch M.g. patients seek for CAM ? ? Relations between request for CAM and subjective quality of life ? ??

6. Public Health – Dresden Medical School  Questionnaire-based study in collaboration with the “German Myasthenia Association”, the self-help organization for M.g. patients in Germany.  2150 M.g. patients living in Germany and suffering from confirmed M.g. were asked to work on a mailed anonymous questionnaire.  A cover letter and pre-paid envelope to return the questionnaire have been included. Methods Response rate  70,6% (n = 1518)

7. Public Health – Dresden Medical School Methods Self-completed questionnaire:  Demographical data data  Physical complaints/ disabilities  Therapeutical course  M.g. related financial burden  Use of CAM  Quality of life (SF –36, Analogue-scale)

8. Public Health – Dresden Medical School Sample Sample (n = 1518) Age 56.7 years [3-94 years] 56.7 years [3-94 years] Gender f = 60.7% m = 39.3% Marital status single = 13.1% single = 13.1% married = 66.3% married = 66.3% divorced = 7.1% divorced = 7.1% widowed = 10.6% widowed = 10.6% Household – net income Median: 1600 USD [70-50. 000 USD] Health insurance statutory health insurance = 87% Years since M.g. onset 12.9 years [0-68 years ] Years since diagnosis of M.g. 10.2 years [0-53 years ]

9. Public Health – Dresden Medical School Patients seeking for CAM  Spent money for non-medical practitioners  Reported treatment by non-medical practitioners  Spent money for CAM  Admitted use of CAM

10. Public Health – Dresden Medical School Samples - Differences No CAM (n = 1055) CAM (n = 463) Statistical difference Age 57.3 years 57.3 years 55.3 years p =.030 Gender f = 55.5% m = 45.5% f = 73.2% m = 27.8% p =.000 Marital status single = 12.4% single = 12.4% married = 70.2% married = 70.2% divorced = 5.9% divorced = 5.9% widowed = 10.3% widowed = 10.3% single = 15.3% single = 15.3% married = 60.9% married = 60.9% divorced = 10.3% divorced = 10.3% widowed = 11.8% widowed = 11.8% p =.005 M.g. onset 11.9 years ago 15.3 years ago p =.000 Diagnosis of M.g. 9.5 years ago 11.8 years ago p =.000 Age (diagnosis) 47.9 years ago 43.5 years ago p =.000 No differences: Place of residency (small/ big towns), Net income, Secondary school qualification Secondary school qualification

11. Public Health – Dresden Medical School Symptoms – Differences * No CAM (n = 1055) CAM (n = 463) Statistical difference Muscle weakness (during/ after physical strain) 75.9%82.5% p =.011 Arm/ hand weakness 71.3%76.7% p =.024 Walking difficulties 70.3%75,2%n.s. Swallowing difficulties 43.9%51.0% p =.045 Chewing difficulties 37.1%49.3% p =.000 Problems with defecation 39.1%45.2%n.s. Ptosis38.7%45.5% p =.037 * Multiple answers possible

12. Public Health – Dresden Medical School Symptoms – Differences * No CAM (n = 1055) CAM (n = 463) Statistical difference Diplopia35.1%47.7% p =.000 Head drooping 29.4%40.9% p =.000 Speech difficulties 29.7%39.4% p =.039 Reduced facial expression 26.4%36.8% p =.000 Difficulties to urinate 27.2%27.7%n.s. Sexual problems 20.9%24.1%n.s. Muscle weakness (without strain) 19.4%20.7%n.s. * Multiple answers possible

13. Public Health – Dresden Medical School Therapists * * Multiple answers possible No CAM (n = 1055) CAM (n = 463) Statistical difference Neurologist (medical practice) 62.2%60.3%n.s. General practitioner/ Family doctor 49.5%52.7%n.s. Hospital doctors 38.9%38.7%n.s. Physician (medical practice) 16.4%16.8%n.s. Physiotherapists8.2%17.7% p =.000 Non-medical practitioner -13.8%- No differences: Annual visits at the doctor

14. Public Health – Dresden Medical School No CAM (n = 1055) CAM (n = 463) Statistical difference Anticholinesterase treatment 95.8%94.9%n.s. Azathioprine78.7%78.3%n.s. Steroids65.8%65.2%n.s. Thymectomy56.4%62.2%n.s. Immunglobulines18.7%23.1%n.s. Plasmapheresis/ Immunoadsorption 16.5%15.5%n.s. Therapies * * Multiple answers possible

15. Public Health – Dresden Medical School No CAM (n = 1055) CAM (n = 463) Statistical difference non22.7%10.4% p =.000 up to 25 USD/ month 35.3%17.8% up to 50 USD/ month 20.7%25.8% up to 250 USD/ month 17.2%34.4% Up to 500 USD/ month 3.4%8.7% More than 500 USD/ month 0.8%2.9% Amount of money spent due to Myasthenia gravis  No correlation between net income and amount of money spent ! and amount of money spent !

16. Public Health – Dresden Medical School No CAM (n = 1055) CAM (n = 463) OTC-drugs 10 USD (2-175 $) 10 USD (3-200 $) pain killer 5 USD (1-200 $) 7,5 USD (2-100 $) homeopathic/ alternative drugs -- 15 USD (5-500 $) physiotherapy/ occupational therapy 20 USD (3-250 $) 20 USD (5-300 $) alternative treatments -- 42 USD (5-400 $) Taxi/ Transportation 30 USD (3-350 $) 30 USD (3-300$) Actual illness related amount of money spent per month * * Multiple answers possible

17. Public Health – Dresden Medical School Used CAM methods vitamins = 38.7% specific diets = 10.6% homeopathy = 32.8% electromagnetism = 6.6% antioxidant substances = 28.7% acupuncture = 28.7% (magic) crystals = 4.5% heavy metal detoxification = 9.9%

18. Public Health – Dresden Medical School Quality of life (Analogue-scale)

19. Public Health – Dresden Medical School Quality of life (SF-36)

20. Public Health – Dresden Medical School Conclusions  The investigated M.g. patients seeking for CAM included more females and suffered significantly longer from M.g. !  Especially increased disabilities and reduced quality of life were associated with use of CAM !  Successful managed care in M.g. patients depends not only on evidence-based therapies but also on additional measures improving quality of life !  Patients seeking for CAM require intensified attention to improve their physical situation and quality of life !