Public Health – Dresden Medical School Complementary care seeking behavior in patients with...

Public Health – Dresden Medical School

Complementary care seeking behavior Complementary care seeking behavior

in patients with Myasthenia gravisin patients with Myasthenia gravis

J. Klewer J. Klewer 11, L. Wondzinski , L. Wondzinski 11, A. Friedrich , A. Friedrich 11, ,

R. Amman R. Amman 22, D. Pöhlau , D. Pöhlau 33, J. Kugler , J. Kugler 11

11 Public Health, Dresden Medical School, Dresden , Germany Public Health, Dresden Medical School, Dresden , Germany

22 German Myasthenia Association, Bremen, Germany German Myasthenia Association, Bremen, Germany

33 Dept. of Neurology, Kamillus-Hospital, Asbach, Germany Dept. of Neurology, Kamillus-Hospital, Asbach, Germany


Myasthenia gravisMyasthenia gravis

IncidenceIncidence: :

2-20 per 1 Mio. residents2-20 per 1 Mio. residents

PrevalencePrevalence: :

50-100 per 1 Mio. residents50-100 per 1 Mio. residents

Autoimmune disease caused by antibodiesAutoimmune disease caused by antibodies

Defect in neuromuscular transmission with Defect in neuromuscular transmission with muscle weakness and fatiguemuscle weakness and fatigue


Myasthenia gravis - SymptomsMyasthenia gravis - Symptoms

Age at onsetAge at onset: 20-40 years: 20-40 years

In 60-80% of the patients associated with thymomasIn 60-80% of the patients associated with thymomas

OftenOften: initial weakness of ocular muscles : initial weakness of ocular muscles (ptosis, diplopia)(ptosis, diplopia)

Facial muscle weakness; speech, chewing and swallowing Facial muscle weakness; speech, chewing and swallowing difficultiesdifficulties

The patterns of muscle involvement varies between The patterns of muscle involvement varies between individuals; heterogeneous progress of the muscle individuals; heterogeneous progress of the muscle weakness weakness (limb weakness, respiratory muscle weakness)(limb weakness, respiratory muscle weakness)


- - Spontaneous remission rate in 20% of the patients.Spontaneous remission rate in 20% of the patients.

- - In the past:In the past: 30% of the patients died within 3 years. 30% of the patients died within 3 years.

- - TodayToday:: Around 5% of the patients deteriorate and dieAround 5% of the patients deteriorate and die (mainly (mainly due to wrong due to wrong

therapies)therapies)

- - With therapyWith therapy: Normal life expectancy & fit for work !: Normal life expectancy & fit for work !

Myasthenia gravis – Therapy und PrognosisMyasthenia gravis – Therapy und Prognosis

- Immunosuppression Immunosuppression (i.e. Prednisolone, Azathioprine)(i.e. Prednisolone, Azathioprine)

- Anticholinesterase treatment Anticholinesterase treatment (i.e. Pyridostigmine)(i.e. Pyridostigmine)

- Thymectomy Thymectomy (Thymoma)(Thymoma)


Study aimsStudy aimsStudies evaluating medical care and quality of life Studies evaluating medical care and quality of life in German Myasthenia gravis patients are still lacking:in German Myasthenia gravis patients are still lacking:

? Demographical data of German M.g. patients Demographical data of German M.g. patients ??

? M.g. related complaints and disabilities M.g. related complaints and disabilities ??

? Therapeutical course Therapeutical course ?? By whom By whom ??

? Financial burdens due to M.g. Financial burdens due to M.g. ?? In detail In detail ??

? Inasmuch M.g. patients seek for CAM Inasmuch M.g. patients seek for CAM ??

? Relations between request for CAM and subjective Relations between request for CAM and subjective quality of life quality of life ??

????


Questionnaire-based study in collaboration with the Questionnaire-based study in collaboration with the “German Myasthenia Association”, the self-help “German Myasthenia Association”, the self-help organization for M.g. patients in Germany.organization for M.g. patients in Germany.

2150 M.g. patients living in Germany and suffering 2150 M.g. patients living in Germany and suffering from confirmed M.g. were asked to work on a mailed from confirmed M.g. were asked to work on a mailed anonymous questionnaire. anonymous questionnaire.

A cover letter and pre-paid envelope to return the A cover letter and pre-paid envelope to return the questionnaire have been included. questionnaire have been included.

MethodsMethods

Response rateResponse rate 70,6% 70,6% (n = (n = 1518)1518)


MethodsMethods

Self-completed questionnaire:Self-completed questionnaire:

Demographical data dataDemographical data data Physical complaints/ disabilitiesPhysical complaints/ disabilities Therapeutical courseTherapeutical course M.g. related financial burdenM.g. related financial burden Use of CAMUse of CAM Quality of life (SF –36, Analogue-scale)Quality of life (SF –36, Analogue-scale)


SampleSample

Sample (n = 1518)Sample (n = 1518)

AgeAge 56.7 years [3-94 years]56.7 years [3-94 years]

GenderGender f = 60.7% m = 39.3%f = 60.7% m = 39.3%

Marital statusMarital 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 incomeHousehold – net income Median:Median: 1600 USD [70-50 1600 USD [70-50..000 USD]000 USD]

Health insuranceHealth insurance statutory health insurancestatutory health insurance = 87% = 87%

Years since M.g. onset Years since M.g. onset 12.9 years [0-68 years ]12.9 years [0-68 years ]

Years since diagnosis of M.g. Years since diagnosis of M.g. 10.2 years [0-53 years ]10.2 years [0-53 years ]


Patients seeking for CAMPatients seeking for CAM

Spent money for non-medical practitionersSpent money for non-medical practitioners

Reported treatment by non-medical Reported treatment by non-medical practitionerspractitioners

Spent money for CAMSpent money for CAM

Admitted use of CAMAdmitted use of CAM


Samples - DifferencesSamples - DifferencesNo CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)

Statistical Statistical differencedifference

AgeAge 57.3 years57.3 years 55.3 years55.3 years p = .030p = .030

GenderGender f = 55.5% m = 45.5%f = 55.5% m = 45.5% f = 73.2% m = 27.8%f = 73.2% m = 27.8% p = .000p = .000

Marital statusMarital 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 = .005p = .005

M.g. onset M.g. onset 11.9 years ago11.9 years ago 15.3 years ago15.3 years ago p = .000p = .000

Diagnosis of M.g.Diagnosis of M.g. 9.5 years ago9.5 years ago 11.8 years ago11.8 years ago p = .000p = .000

Age (diagnosis)Age (diagnosis) 47.9 years ago47.9 years ago 43.5 years ago43.5 years ago p = .000p = .000

No differencesNo differences: Place of residency (small/ big towns), Net income,: Place of residency (small/ big towns), Net income, Secondary school qualificationSecondary school qualification


Symptoms – Differences Symptoms – Differences **

No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)


Muscle weakness Muscle weakness (during/ (during/ after physical strain)after physical strain) 75.9%75.9% 82.5%82.5% p = .011p = .011

Arm/ hand weaknessArm/ hand weakness 71.3%71.3% 76.7%76.7% p = .024p = .024

Walking difficultiesWalking difficulties 70.3%70.3% 75,2%75,2% n.s.n.s.

Swallowing difficultiesSwallowing difficulties 43.9%43.9% 51.0%51.0% p = .045p = .045

Chewing difficultiesChewing difficulties 37.1%37.1% 49.3%49.3% p = .000p = .000

Problems with defecationProblems with defecation 39.1%39.1% 45.2%45.2% n.s.n.s.

PtosisPtosis 38.7%38.7% 45.5%45.5% p = .037p = .037

** Multiple answers possible Multiple answers possible


Symptoms – Differences Symptoms – Differences **

No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)


DiplopiaDiplopia 35.1%35.1% 47.7%47.7% p = .000p = .000

Head droopingHead drooping 29.4%29.4% 40.9%40.9% p = .000p = .000

Speech difficultiesSpeech difficulties 29.7%29.7% 39.4%39.4% p = .039p = .039

Reduced facial expressionReduced facial expression 26.4%26.4% 36.8%36.8% p = .000p = .000

Difficulties to urinateDifficulties to urinate 27.2%27.2% 27.7%27.7% n.s.n.s.

Sexual problemsSexual problems 20.9%20.9% 24.1%24.1% n.s.n.s.

Muscle weakness Muscle weakness (without (without strain)strain) 19.4%19.4% 20.7%20.7% n.s.n.s.



Therapists Therapists **


No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)


Neurologist (medical practice)Neurologist (medical practice) 62.2%62.2% 60.3%60.3% n.s.n.s.

General practitioner/General practitioner/Family doctorFamily doctor 49.5%49.5% 52.7%52.7% n.s.n.s.

Hospital doctorsHospital doctors 38.9%38.9% 38.7%38.7% n.s.n.s.

Physician (medical practice)Physician (medical practice) 16.4%16.4% 16.8%16.8% n.s.n.s.

PhysiotherapistsPhysiotherapists 8.2%8.2% 17.7%17.7% p = .000p = .000

Non-medical practitionerNon-medical practitioner -- 13.8%13.8% --

No differencesNo differences: Annual visits at the doctor: Annual visits at the doctor


No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)


Anticholinesterase Anticholinesterase treatmenttreatment 95.8%95.8% 94.9%94.9% n.s.n.s.

AzathioprineAzathioprine 78.7%78.7% 78.3%78.3% n.s.n.s.

SteroidsSteroids 65.8%65.8% 65.2%65.2% n.s.n.s.

ThymectomyThymectomy 56.4%56.4% 62.2%62.2% n.s.n.s.

ImmunglobulinesImmunglobulines 18.7%18.7% 23.1%23.1% n.s.n.s.

Plasmapheresis/ Plasmapheresis/ ImmunoadsorptionImmunoadsorption 16.5%16.5% 15.5%15.5% n.s.n.s.

Therapies Therapies **



No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)


nonnon 22.7%22.7% 10.4%10.4%

p = .000p = .000

up to 25 USD/ monthup to 25 USD/ month 35.3%35.3% 17.8%17.8%



Up to 500 USD/ monthUp to 500 USD/ month 3.4%3.4% 8.7%8.7%

More than 500 USD/ monthMore than 500 USD/ month 0.8%0.8% 2.9%2.9%

Amount of money spent due to Myasthenia gravisAmount of money spent due to Myasthenia gravis

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


No CAM No CAM (n = 1055)(n = 1055)

CAM CAM (n = 463)(n = 463)

OTC-drugsOTC-drugs 10 USD (2-175 $)10 USD (2-175 $) 10 USD (3-200 $)10 USD (3-200 $)

pain killerpain killer 5 USD (1-200 $)5 USD (1-200 $) 7,5 USD (2-100 $)7,5 USD (2-100 $)

homeopathic/ homeopathic/ alternative drugsalternative drugs ---- 15 USD (5-500 $)15 USD (5-500 $)

physiotherapy/ physiotherapy/ occupational therapyoccupational therapy 20 USD (3-250 $)20 USD (3-250 $) 20 USD (5-300 $)20 USD (5-300 $)

alternative treatmentsalternative treatments ---- 42 USD (5-400 $)42 USD (5-400 $)

Taxi/ TransportationTaxi/ Transportation 30 USD (3-350 $)30 USD (3-350 $) 30 USD (3-300$)30 USD (3-300$)

Actual illness related amount of money spent per monthActual illness related amount of money spent per month**



Used CAM methodsUsed CAM methods

vitamins = 38.7%vitamins = 38.7% specific diets = 10.6%% specific diets = 10.6%%

homeopathy = 32.8% homeopathy = 32.8% electromagnetism = 6.6% electromagnetism = 6.6%

antioxidant substances = 28.7%antioxidant substances = 28.7%

acupuncture = 28.7%acupuncture = 28.7% (magic) crystals = 4.5% (magic) crystals = 4.5%

heavy metal detoxification = 9.9%heavy metal detoxification = 9.9%


Quality of life (Analogue-scale)Quality of life (Analogue-scale)

CAM No CAM0

10

20

30

40

50

60

70

80

90

100

**healthy references


Quality of life (SF-36)Quality of life (SF-36)

physical physical bodily general vitality social emotional mental0

10

20

30

40

50

60

70

80

90

100

No CAM CAM

****

**** **

***

**

***

functioning functioningrole rolehealthpain health


ConclusionsConclusions The investigated M.g. patients seeking for CAM The investigated M.g. patients seeking for CAM

included more females and suffered significantly included more females and suffered significantly longer from M.g. ! longer from M.g. !

Especially increased disabilities and reduced quality of life Especially increased disabilities and reduced quality of life were associated with use of CAM !were associated with use of CAM !

Successful managed care in M.g. patients depends not only Successful managed care in M.g. patients depends not only on evidence-based therapies but also on additional on evidence-based therapies but also on additional measures improving quality of life !measures improving quality of life !

Patients seeking for CAM require intensified attention to Patients seeking for CAM require intensified attention to improve their physical situation and quality of life ! improve their physical situation and quality of life !

Public Health – Dresden Medical School Complementary care seeking behavior in patients with...

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