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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
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
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)
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)
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 ?
??
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)
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)
Public Health – Dresden Medical School
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 ]
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
Public Health – Dresden Medical School
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
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.
Ptosis 38.7% 45.5% p = .037
* Multiple answers possible
Public Health – Dresden Medical School
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
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.
Physiotherapists 8.2% 17.7% p = .000
Non-medical practitioner - 13.8% -
No differences: Annual visits at the doctor
Public Health – Dresden Medical School
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.
Therapies *
* Multiple answers possible
Public Health – Dresden Medical School
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%
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 !
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
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%
Public Health – Dresden Medical School
Quality of life (Analogue-scale)
CAM No CAM
0
10
20
30
40
50
60
70
80
90
100
**
healthy
references
Public Health – Dresden Medical School
Quality of life (SF-36)
physical physical bodily general vitality social emotional mental
0
10
20
30
40
50
60
70
80
90
100
No CAM CAM
**
**
**
** **
***
**
***
functioning functioning
role role
health
pain health
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 !

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92.ppt

  • 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] 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 ]
  • 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 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
  • 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. Ptosis 38.7% 45.5% p = .037 * Multiple answers possible
  • 12. Public Health – Dresden Medical School Symptoms – Differences * No CAM (n = 1055) CAM (n = 463) Statistical difference 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
  • 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. Physiotherapists 8.2% 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. 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. Therapies * * Multiple answers possible
  • 15. Public Health – Dresden Medical School 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% 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 !
  • 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) CAM No CAM 0 10 20 30 40 50 60 70 80 90 100 ** healthy references
  • 19. Public Health – Dresden Medical School Quality of life (SF-36) physical physical bodily general vitality social emotional mental 0 10 20 30 40 50 60 70 80 90 100 No CAM CAM ** ** ** ** ** *** ** *** functioning functioning role role health pain health
  • 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 !