Friday, 1 April 2016

Patient's prerogative: Just so you know, I have not made a decision regarding my participation...

Funct Neurol. 2016 Jan-Mar;31(1):21-23.

Disability may influence patient willingness to participate in decision making on first-line therapy in multiple sclerosis.

D'Amico E, Leone C, Patti F.


Patient autonomy is a concept that implies variable degrees of patient participation in different aspects of health and healthcare, including the choice of therapy. This study, conducted in patients with multiple sclerosis (MS), examined several factors in relation to the patient's role in the therapeutic decision-making process. One hundred newly diagnosed patients with MS attending their first ever specialist consultation at the MS center of Catania, Italy, were consecutively enrolled in a single-center, open, observational study. Clinical and demographic data were collected as part of this routine first consultation. Through administration of the Control Preferences Scale, we ascertained the patients' willingness to participate in the decision-making process on their first-line treatment, classifying them, on the basis of their attitude, as passive, collaborative or active. Of 100 patients with MS, 40 had a passive attitude, while 35 were willing to collaborate and 25 wanted to play an active role in the decision-making process. The patients showing an active attitude had a significantly higher Expanded Disability Status Scale score and a significantly higher number of relapses (p<0.5 for both) than those who showed other attitudes. Persons with MS prefer to know the benefits and risks related to the first-line treatment. Those with higher disability prefer to be active in the decision-making process.

This study was conducted by the Multiple Sclerosis Center, Catania. Are Sicilian's therefore, in principle any different to you or I when it comes to medical decisions? - I believe not. So, are we all simply so introverted, that we are at risk of falling into a catatonic stupor? This is a 'maybe', according to the findings of this (small) study.

Only 25% of MS subjects actively participated in the decision making, whilst 40% were simply accepting, and 35% voiced opinions some of the time. Engagement was greatest, when faced with more 'active MS' - no surprise there.

This type of qualitative research is very difficult to interpret. The authors appear baffled: " is not entirely clear whether patients really want to participate, whether they really do share decisions, or whether they just want to feel that they are involved".

Personally, I'm of the opinion that full participation in medical consultations although highly desirable, is not absolutely essential. And vice versa, non-participation is tolerable if necessary, but not entirely unacceptable. It's a patient's prerogative, not autonomy.

1 comment:

  1. To my non MSed eye, the lack of patient autonomy coupled with the patriachal approach of some clinicians hurts patients. I don't know why it is necessary to do crap studies on patient involvement - people with MS are human just like the rest of the planet's population. This means that some will feel distressed by their neuros trying to control their lives while others will welcome any involvement their neuro has in their life. I, personally, would kick up such a stink if I was treated the way I hear of people with MS being treated by those with power over them, but I suppose people with MS are busy with other life indignities to put up an effective fight. Luckily (or unluckily) for my partner, after a year of hospital hell (related less to MS and more to 'things' that happen in hospitals) - I have decided to leave no crap uncalled and make it my mission to scream blue murder every time someone tries to control her life that is not her. Doctors now bounce between utter distaste for us and being scared of us... I'm a solicitor so I suppose that explains some of the fear. I never used to enjoy instilling fear in people, but having faced a number of 'powerful' neurologists it's come quite useful. Now that the treatment decisions have been made my partner intends on getting a back up neuro (to keep an eye on her neuro who can't always be trusted). Good times.


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