title: A patient's perspective of partnership in the treatment of multiple sclerosis: MS regimes--an orchestrated approach.
abstract: Having been an MS patient for over 15 years, I will give you a short picture of what I expect from my doctors with regard to an equilibrated doctor-patient-relationship. Though such partnership also involves soft components like "My doctor's understanding of my personal situation" as well as "His understanding of my personality", this speech is limited to the hard components "Consideration of my individual course of disease" as well as "Provision of information and thereby educating me comprehensively". Also, I will point to some important legal aspects of such partnership and finally will give you some thoughts about some kind of "public partnership" in the internet. Consideration of individual course of disease: The doctor's choice of an appropriate treatment based on a careful and sound analysis and evaluation of the patient's personal individual course of disease may be impaired by strict compliance with guidelines. While guidelines may be helpful to ensure a broad high-level patient-centered care, they bear the risk that patients are treated according to standard programs just for the doctor to be on the safe side. Education of the patient: I will explain how I would like to be educated by my doctor in a perfect world. I will then elaborate that a comprehensive patient education may prevent loss of confidence as well as allegations like biased attitude of doctors, and may also positively influence cost pressure and adherence to treatments. Legal aspects of partnership: It is a physician's legal duty to educate his patients comprehensively. The right of the patients to be educated derives from their right of self-determination, which in turn arises directly from the patients' human dignity and personal rights. Forums and Medical Councils of MS-Societies: Internet communities do not seem to be too happy with their MS-Societies and experts. Statements of MS-Societies or their Medical Councils on hot topics have sometimes been slow. Via the forums, MS-Societies may get an idea of the questions and problems MS patients have. They could inform the Medical Council accordingly, so that reactions regarding new developments or surprising trial results do not take too long.
authors.affiliation: Mendelssohnstr. 85, D-60325 Frankfurt, Germany. Electronic address: a.pueckler@gmx.de.
authors.forename: Antoinette
authors.initials: A
authors.lastname: von Pückler
mesh_terms: D006801:Humans; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy*; D010349:Patient Compliance; D026684:Personal Autonomy; D010817:Physician-Patient Relations
keywords: Adherence; Disease-modifying drugs; Doctor–patient relationship; Education; Guidelines; MS-Society; Multiple sclerosis; Partnership