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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
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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

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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)

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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 !
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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 ?

??
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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)
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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)

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Sample
Sample (n 1518)
Age 56.7 years 3-94 years
Gender f 60.7 m 39.3
Marital status single 13.1 married 66.3 divorced 7.1 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
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Patients seeking for CAM

• Spent money for non-medical practitioners
• Reported treatment by non-medical practitioners
• Spent money for CAM
• Admitted use of CAM

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Samples - Differences
No CAM (n 1055) CAM (n 463) Statistical difference
Age 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 married 70.2 divorced 5.9 widowed 10.3 single 15.3 married 60.9 divorced 10.3 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
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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.
Ptosis 38.7 45.5 p .037
Multiple answers possible
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Symptoms Differences
No CAM (n 1055) CAM (n 463) Statistical difference
Diplopia 35.1 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
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Therapists
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.
Physiotherapists 8.2 17.7 p .000
Non-medical practitioner - 13.8 -
No differences Annual visits at the doctor
Multiple answers possible
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Therapies
No CAM (n 1055) CAM (n 463) Statistical difference
Anticholinesterase treatment 95.8 94.9 n.s.
Azathioprine 78.7 78.3 n.s.
Steroids 65.8 65.2 n.s.
Thymectomy 56.4 62.2 n.s.
Immunglobulines 18.7 23.1 n.s.
Plasmapheresis/ Immunoadsorption 16.5 15.5 n.s.
Multiple answers possible
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Amount of money spent due to Myasthenia gravis
No CAM (n 1055) CAM (n 463) Statistical difference
non 22.7 10.4 p .000
up to 25 USD/ month 35.3 17.8 p .000
up to 50 USD/ month 20.7 25.8 p .000
up to 250 USD/ month 17.2 34.4 p .000
Up to 500 USD/ month 3.4 8.7 p .000
More than 500 USD/ month 0.8 2.9 p .000

• No correlation between net income
• and amount of money spent !

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Actual illness related amount of money spent per
month
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)
Multiple answers possible
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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
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Quality of life (Analogue-scale)
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Quality of life (SF-36)
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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 !