Faced with an explosion of advances in medical science
and information technology, the increasing
focus on patient-centred care can at times be a
challenge for practising physicians.
With our capacity to communicate with the masses
instantaneously, are we allowing enough time for the
high-quality research needed to validate the efficacy and
safety of new interventions before releasing information to
the public? What is the risk-benefit ratio of early dissemination
of unproven interventions? When patients demand
access to unproven medical approaches, are health professionals
and our health system obligated to provide and
support these choices? Is denial of such contrary to the
goals of patient-centred care? And whose role is it to help
patients understand the flood of information before them?
We are in the midst of a very public debate about a proposed
treatment for multiple sclerosis (MS). Liberation therapy,
introduced by Zamboni et al, involves endovascular
treatment of the internal jugular or azygous veins in an
attempt to reverse effects of chronic cerebrospinal venous
insufficiency (CCSVI), which Zamboni has claimed causes or
contributes to MS.1 His research using noninvasive Doppler
ultrasound imaging showed CCSVI in all MS patients and in
none of the controls; sensitivity, specificity, and positive and
negative predictive values were all reported as 100%.1 But
other studies have failed to replicate these findings,2,3 and
have concluded that more evidence is needed before a link
can be established between CCSVI and MS.4
As news of this potential treatment spread, clinics
offering liberation therapy opened in several countries.
With Canada’s high rates of MS, it is not surprising that
many Canadians suffering from this incapacitating disease
are among those seeking access to this intervention—
and their family physicians are often identified
as the main resource to help them understand what is
unfolding and to achieve their goal of treatment.
The Canadian Institutes of Health Research (CIHR) takes
the position that more evidence of a link between CCSVI
and MS is needed before endovascular treatment is introduced
in Canada. A CIHR expert working group is reviewing
results of studies being carried out around the world,
including 7 rigorous blinded studies undertaken by MS
societies in North America. If the link is proven, the next
step would be clinical trials on the safety and efficacy of the
endovascular procedures, followed by recommendations
for clinical applications. The Canadian Medical Association,
the Association of Faculties of Medicine of Canada, the
Canadian Society for Vascular Surgery, and the Executive
Committee of the College of Family Physicians of Canada
support the CIHR position and agreed to share it with our
members. This information can be found at www.cfpc.ca.
Multiple sclerosis is a complicated disease. In some
it is a primary progressive condition; in others it has a
relapsing-remitting pattern that might or might not
become progressive. A number of patients have reported
symptom improvements following liberation therapy. The
interest of others desperate for relief has, naturally, been
piqued. But were these improvements related to the treatment,
the natural course of the illness, or other factors?
Endovascular treatment is not without risk. Venous
restenosis, thrombi, pulmonary emboli, hemorrhage, and
migration of stents have all been reported. Patients experiencing
troubling symptoms after being treated abroad have
on occasion encountered difficulty accessing medical care
at home.5 The Registrar of the College of Physicians and
Surgeons of Saskatchewan, Dr Dennis Kendel, offered this
reminder: “We do expect physicians to respond to patients
in need regardless of the previous treatments they have
had, here or elsewhere.”5 He also made it clear that while
care should never be denied, patients cannot demand particular
tests or procedures. Patient-centred care does not
mean physicians must agree to carry out specific treatments
or tests suggested by patients. It does mean that we
should listen to patients, be sensitive to their perspectives
and needs, and ensure they have all the information necessary
to make the best possible decisions. It also means
we must not abandon them when they are in need.
The explosion of medical advances will continue, as
will the rapid dissemination of information—validated or
not. And patients will play an increasing role in determining
their own care. But it will still be the personal
family physician who will provide most of each patient’s
medical care, who will arrange and coordinate referrals,
and who will be vital to helping each patient understand
the information available and the choices to be
made. Trusted lifelong patient–family doctor relationships
ensure that patients are heard and that their input into
care decisions is respected. The current challenges in
MS treatment exemplify the importance of the role of the
family physician in helping patients help themselves.
References
1. Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Tacconi G, Dall'Ara S, et al.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry 2009;80:392-9.
2. Doepp F, Paul F, Valdueza JM, Schmierer K, Schreiber SJ. No cerebrocervical venous
congestion in patients with multiple sclerosis. Ann Neurol 2010;68(2):173-83.
3. Zivadinov R, Marr K, Ramanathan M, Zamboni P, Benedict R, Cutter G, et al.
Transcranial and extracranial venous Doppler evaluation (CTEVO Study). Neurology
2010;74(PO6:144):4545.
4. Dorne H, Zaidat O, Fiorella D, Hirsch J, Prestigiacomo C, Albuquerque F, et al.
Chronic cerebrospinal venous insufficiency and the doubtful promise of an endovascular
treatment for multiple sclerosis. J Neurointervent Surg 2010;2(4):309-11.
5. Scissons H. MS patient gets ’liberation’ therapy abroad, struggles to find followup
care at home. Postmedia News 2011 Jan 27.
http://www.cfp.ca/content/57/3/384.full.pdf