Join us from 2:00–3:00 p.m. ET, Tuesday, May 24, 2011, when we
host Working Toward Your Best Life: Advances in Quality
of Life Research, a live webcast featuring Drs. Allen Bowling,
Nicholas LaRocca and Robert Motl.
Topics will include:
Research that is improving quality of life
Treating the whole person, including complementary therapies
Combatting emotional and cognitive challenges
To register, visit: nationalMSSociety.org/may24webcast.
“The benefit of this testing is
that it can ask just five questions
and give us complete and accurate responses,” said Dr. Miller.
Neuro-QOL comprises a core set
of questions universal to those
with chronic neurological disease,
along with specific concerns of
people with a particular disease,
or at a certain age.
One population that may
benefit in particular from this
testing is children with MS.
“For example, we know that
cognitive problems happen in
kids with MS, but we don’t
know how this affects their
self-esteem,” Dr. Miller pointed
out. “We need pediatric- and
adolescent-specific measures to
show how they feel about themselves in certain situations.”
PhOTO COuRTeSy OF ChRISTIAN BROwN
The United Kingdom’s MS
Clinical Trials Network is devel-
oping a new outcome measure
specific to people with progres-
sive MS. The U.K. MS Society
established this network to plan
and conduct clinical trials of
neuroprotective agents. They are
interviewing people with progres-
sive MS to identify what aspects
of quality of life are relevant to
them. The network is beginning
a study of an experimental drug
this year, and hopes to put this
new measure in place to deter-
mine whether any benefit of the
drug extends beyond the physical
aspects of the disease.
What improves poor
quality of life?
Improving the quality of life of
people with MS is a top goal in
the Society’s strategic response for
2011–15. The Society is committed to pursuing new rehabilitation techniques and symptomatic
treatments that will restore function and enhance quality of life.
Researchers funded through
the Society’s Health Care Delivery and Policy Research Program investigate such issues and
acquire data that help to develop
practical ways for improving MS
care and quality of life.
Barbara G. Vickrey, MD,
MPH (University of California,
Los Angeles), was awarded a
contract to define what constitutes quality MS health care.
She consulted both the scientific
literature and a group of stakeholders in MS care, including
people with MS. They related
what symptoms they considered
to be most important to address,
including bladder dysfunction,
cognition dysfunction, depression, fatigue and spasticity. These
findings will be further explored
in studies to test whether