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Complementary care seeking behavior in patients with Myasthenia gravis

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

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Complementary care seeking behavior in patients with Myasthenia gravis

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  1. 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. 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. 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. Myasthenia gravis – Therapy und Prognosis • Immunosuppression (i.e. Prednisolone, Azathioprine) • Anticholinesterase treatment (i.e. Pyridostigmine) • Thymectomy (Thymoma) - 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 !

  5. 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. Methods • 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. Response rate 70,6% (n = 1518)

  7. 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. Sample

  9. 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. Samples - Differences No differences: Place of residency (small/ big towns), Net income, Secondary school qualification

  11. Symptoms – Differences * * Multiple answers possible

  12. Symptoms – Differences * * Multiple answers possible

  13. Therapists * No differences: Annual visits at the doctor * Multiple answers possible

  14. Therapies * * Multiple answers possible

  15. Amount of money spent due to Myasthenia gravis • No correlation between net income and amount of money spent !

  16. Actual illness related amount of money spent per month* * Multiple answers possible

  17. 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. Quality of life (Analogue-scale)

  19. Quality of life (SF-36)

  20. 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 !

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