B O O K - American College of Rheumatology

• apply these basic statistics to interpret the results section of a
journal article
• apply the results of the journal article to a case study
B309
Measure by Measure: Assessing Psychological Health
and Well-Being in Scleroderma c/r PM PS
Moderator: Janet L. Poole, PhD, OTR; University of New Mexico;
Albuquerque, NM
Speakers: Ghassan El Baalbaki, PhD; Jewish General Hospital;
Montreal, QC, Canada
Katherine Milette, BSc; Jewish General Hospital; Montreal, QC,
Canada
Brett D. Thombs, BA, MA, PhD; McGill University; Montreal, QC,
Canada
Session Overview:
Patient-reported outcomes relate to patient health, well-being,
and response to treatment based on patient perspectives.
Patient-reported outcomes may reflect broad constructs, such
as quality of life or disability, or narrower constructs, such
as individual symptoms including pain or fatigue. There is
relatively little research on important patient-reported outcomes
related to psychological health and well-being in scleroderma,
including pain, pruritus (itching), sexual function, body image,
depression, and fatigue. One factor that has hindered research
on patient-reported outcomes related to psychological health
and well-being in scleroderma is the lack of assessment tools
validated for use with scleroderma patients. Since scleroderma is
a uniquely complex, multi-system disease that impacts patients
in many different ways, it is important to have measures that are
validated specifically for use in scleroderma. There are validation
data for broad measures of quality of life and disability, as well
as data supporting the use of a visual analog scale to measure
pain in scleroderma. Until recently, however, there were no
validation data on any other patient-reported outcomes,
including depression, fatigue, pruritus, sexual function, or body
image. The low prevalence of scleroderma has historically made
funding for research difficult. However, with startup funds
from a Canadian Institutes of Health Research (CIHR) Team
Development grant and ongoing funding from a CIHR Team grant
(2007-2012), the Canadian Scleroderma Research Group (CSRG)
established a pan-Canadian, multi-center Registry to recruit
patients for annual assessments. There are currently 15 centers
involved, and over 1,000 patients enrolled, with expected
ongoing enrollment of 100-150 new patients per year. Data from
this registry including the core concerns related to psychological
health and well-being of patients with scleroderma and the
validated assessment strategies will be discussed.
Upon completion of this session, participants should be able to:
• define the characteristics of core psychosocial concerns of
patients with scleroderma
• describe the validated tools to assess symptoms of
depression, fatigue, pain, pruritus, body image distress and
body image avoidance, and sexual function among patients
with scleroderma
• describe strengths and limitations of validated assessment
tools for use among patients with scleroderma
• select publicly-available, validated measures for use in their
own scleroderma studies
B310
Successful Coping with Rheumatic Disease c/r PS
Moderator: Christina Bode, PhD; University of Twente;
Enschede, Netherlands
7:45 am
Goal-Management Strategies in Rheumatic Diseases
Christina Bode, PhD; University of Twente; Enschede,
Netherlands
8:05 am
Adaptation and Self-Management
Stanton P. Newman, PhD; University College London; London,
United Kingdom
8:15 am
Successful Adaptation from the Rheumatology Health Care
Provider Perspective
Mart A. van de Laar, MD; University Twente and Medisch
Sprectrum Twente; Enschede, Netherlands
Session Overview:
Unless significant improvements in medical treatment for
inflammatory rheumatic diseases are made, living with arthritis
means taking medication, making life style changes, coping
with pain, fatigue, and decreases in physical functioning.
Besides effects that are directly related to arthritis, patients
have to cope with changes in social relationships, work abilities,
possibilities for participation, the image of themselves and also
with changes in their personal, future perspective. Patients often
describe these demands as “a job on top of all other aspects
of my life.” Criteria for successful adjustment can be defined in
relation to coping with symptoms of arthritis or from a more
comprehensive perspective that includes all aspects of life.
Upon completion of this session, participants should be able to:
• describe different criteria for successful adaptation to a
rheumatic disease
• compare the contribution of self-management and goalmanagement
strategies and interventions to successful
adaptation
• discuss how the application of self-management and goalmanagement
strategies fit with clinical practice
ACR Basic Science Symposia
9:00 - 10:30 am
B313
Bisphosphonates: Mechanism of Action and
Optimizing Clinical Use R
Moderator: Steven R. Goldring, MD; Hospital for Special Surgery;
New York, NY
9:00 AM
Structural and Functional Properties of Bisphosphonates
R. Graham Russell, MD, PhD, FRS; The Botnar Research Centre,
Univesity of Oxford; Headington, Oxford, United Kingdom
9:30 AM
Effects of Bisphosphonates on Bone Remodeling and Quality
David B. Burr, PhD; Indiana University School of Medicine;
Indianapolis, IN
thursday
2010 Program Book 135