ISOQOL 2004 Symposium
"Stating the Art: Advancing Outcomes Research
Methodology and Clinical Applications"
June 27-29, 2004
Boston Park Plaza Hotel
Boston, MA, USA
Click here to view the Final Program.
Click here to view Abstracts from the conference.
Meeting Information
The first ISOQOL Symposium, "Stating the Art: Advancing Outcomes Research Methodology and Clinical Applications" brought together people involved in health related QoL to hear about the latest advances in the field of outcomes research as they pertain to patient-reported outcomes. This meeting was organized into two tracks: methodology and clinical applications.
Information about specific sessions of the meeting including speaker handouts (for some sessions) can be found below.
Thank you to those who attended and participated in this meeting!
Meeting Schedule:
Sunday,
June 27, 2004
1:00 - 4:30 - Workshops:
1. Q-TWiST Methodology
Rich Gelber and Bernard Cole
Patients and physicians need information regarding the quality-of-life
effects of therapeutic options before making treatment decisions. This
is especially true in cancer where cytotoxic therapy may initially reduce
quality of life due to toxicity before the benefits of delayed disease
progression and delayed death are realized. Quality-adjusted survival
analysis has been useful for evaluating therapies with respect to the
trade-off between clinical benefit and adverse effects of toxicity. This
workshop will provide an introductory review of the Q-TWiST technique
for estimating quality-adjusted survival in clinical trials. We will
cover the basic methodology along with extensions for including covariates,
conducting meta-analysis, and incorporating quality-of-life data into
a Q-TWiST evaluation. Examples from early and advanced-stage cancer will
be shown. We will also illustrate software tools for Q-TWiST with emphasis
on SAS macros for generating numerical estimates and graphical displays.
2. Applications of Item Response Theory Modeling
for Improving Health Outcomes Measurement
Bryce Reeve, PhD and Chih-Hung Chang, PhD
There is a great need in health outcomes research to
develop instruments that accurately measure a person’s health status
with minimal response burden. This need for psychometrically sound and
clinically meaningful measures calls for better analytical tools beyond
the methods available from traditional measurement theory. Applications
of item response theory (IRT) modeling have increased considerably because
of its utility for instrument development and evaluation, assessment
of measurement equivalence, instrument linking, and computerized adaptive
testing. IRT models the relationship, in probabilistic terms, between
a person’s response to a survey question and their standing on a health
construct such as fatigue or depression. This introductory workshop will
discuss the basics of IRT models and applications of these models to
improve health outcomes measurement. Illustrations will be used throughout
the presentation that focuses on measuring key health-related quality
of life domains in cancer populations.
3. Utility
and Value Measurement – An Update
Les Lenert
This course will take an evidence-based approach
to the topic of health-related quality of life. The course will cover
both basic
and advanced topics
focusing on how researchers can develop the most valid protocols. Topics
covered will include comparison of different valuation methods (standard
gamble, time-trade off, person trade-off, etc.) approaches
for describing health and disease, and methods for administration of
protocols.
4. Introduction to Bayesian Data Analysis for Outcomes Researchers
Dennis Fryback, PhD
Bayesian methods for data analysis in outcomes research are now feasible
given Markov Chain Monte Carlo (MCMC) computational methods and available,
fast-improving, software (WinBUGS). This workshop will introduce the
basic principles of Bayesian data analysis, provide a conceptual introduction
to MCMC, and a quick overview of WinBUGS. Example analyses will be discussed
to demonstrate the Bayesian approach and software. Though this is mostly
an applied and not theoretical workshop, the material is directed to
persons with good foundation in, and experience with, conventional statistical
methods and mathematical notation.
5. Strategies for Multiple Endpoints
in Longitudinal Studies of Quality of Life
Diane Fairclough, DrPH
Multiplicity of potential endpoints arises in longitudinal
studies of HRQOL from the multiple domains used to assess HRQoL and the repeated
measures that occur in a longitudinal study. Testing a large number of hypotheses
creates problems in the interpretation of the results and inflates the Type
I error rate. However, over control of the Type I error rate has the potential
to severely decrease the power of the study to detect meaningful differences
(Type II errors). In this workshop, we will start by examining the advantages and disadvantages of a range of strategies including
1) limiting
confirmatory tests, 2) summary measures/statistics across time, 3) creation
of indices from the component subscales, and 4) multiple comparisons procedures.
Next, we will
split into small working groups with the task of developing a strategy for
a hypothetical trial. Finally, the proposals will be presented to the entire
group and discussed.
6. Beyond the QALY:
Using Conjoint Analysis to Quantify Health-Outcome Preferences.
F. Reed Johnson, PhD and Andrew Lloyd, Dphil
Conjoint analysis (CA) is increasingly being used by outcomes researchers
and health economists as a method for obtaining patients', physicians',
and other decision makers' stated preferences. These preference estimates
are used to value treatment outcomes and processes in preference, utility
or monetary terms. CA estimates provide more information about preferences
than conventional QALY weights or QoL scores. They thus can be used to
answer a number of questions about how various treatment and outcome factors
contribute to patient satisfaction and guide physicians' therapy decisions.
The objective of this workshop is to introduce participants to the uses
of CA measures for informing drug-development decision making. Participants
will learn how to derive, interpret, and use CA preference measures. Participants
will first evaluate and critique the design and administration of a survey
instrument. We will then demonstrate estimation using appropriate statistical
techniques and widely available statistical packages, assess the quality
of the resulting estimates, and evaluate the information obtained. Participants
will then complete a series of exercises to translate coefficient estimates
into relative utility weights, rates of substitution, and value to patient.
The workshop will conclude by discussing how each of these measures can
be used to inform decision making.
7. Theoretical Models of Quality of Life
Bruce Rapkin, PhD, and Carolyn Schwartz, ScD
Health-related quality of life is most often treated
as a practical matter in studies of disease course and treatment outcomes. Thus,
quality of
life measures
have generally been developed to capture a face-valid impression
of an individual’s status. Despite considerable attention to the psychometric
properties
of quality
of life (QOL) measures, there is actually very little discussion of QOL as a
theoretical construct. What are we measuring when we assess self-reported QOL?
What are the relationships among different dimensions and facets of QOL? How
is QOL related to personal, social, situational and cultural variables? How is
QOL related to constructs of adaptation and adjustment? Is it possible to develop
models to better understand and predict changes in QOL? How can development of
QOL theory contribute to our understanding of QOL as a health outcome? In this
workshop, we will examine our current state of understanding regarding these
questions. We will look at several recent attempts to develop theoretical models
of QOL. In particular, we will present our own recent work on the nature of QOL
appraisal processes. Assessment of QOL appraisal provides a richer, more dynamic
way of understanding how individuals think about and rate their health and well-being.
At the same time, appraisal assessment opens the door to new problems and complexities
in QOL research. Through this workshop, we hope to broaden perspectives on the
role of theory in studies of health-related QOL, introduce new assessment tools
and new types of data that may be of use in advancing theory, and envision the
research agenda for further theoretical development in our field.
8.
Quality of Life Assessment with Computerized Text Analysis
James Pennebaker, PhD and Ivan Barofsky, PhD
This workshop demonstrates how computerized text analysis can inform quality
of life assessments. It provides an overview over existing quantitative
text analysis approaches and gives participants the opportunity to apply
one of these methods to quality of life data. Participants are encouraged
to bring laptop computers, although demonstration computers will be available.
Computerized text analysis can be used on any electronic samples of natural
language that contain at least 60-100 words. Samples can be transcriptions
of conversations such as interviews or doctor-patient communications. Responses
to open-ended survey questions are also appropriate. Computerized text
analytic procedures aim to quantify how people talk (i.e., linguistic style)
and what people talk about (i.e., content). By analyzing examples of quality
of life data, we will show how these techniques can provide clues about
the way that a respondent views their quality of life, offering an alternative
to judgment-based methods (e.g., content analysis). This information can
be used to compare groups of respondents or follow changes in a respondent's
quality of life over time. The workshop will cover issues involved in applying
text analysis, from data preparation to the implications of comparing groups
who do not even share the same language.
6:00 - 7:00pm
Opening Reception
Click on each session to read more about the presentations.
9:00 - 10:30 am
Plenary Session I: State-of-the-Art of HRQOL Assessment
Presenters: Marcia Testa, PhD, MPH and Robert Kaplan, PhD
Discussants: Albert Wu, MPH and Ivan Barofsky, PhD
Chairs: William Lenderking, PhD and Dennis Revicki, PhD
9:00 am - 10:00 pm
Posters On Display
10:30 - 10:45 am
Break
10:45 am - 12:45 pm
Concurrent Sessions
Session 1: Modern Measurement Theory and Applications
Presenters: Ronald K. Hambleton and Chih-Hung Chang
Chair: Kathy Wyrwich
Other presenters: Mogens Groenvold, Marie Martin, Mathias Rose and James Stansbury
Other presenters: Sheri Fehnel, Elaine McColl, and Martha Shumway
12:45 - 2:00 pm
Lunch
2:00 - 4:00 pm
Concurrent Sessions
Session 3: Advanced Statistical Analysis I
Presenters: Joe Hogan and Diane Fairclough
Chair: Joe Cappelleri
Other Presenters: Renee Saris-Baglama, Karin Vermeulen, Stephen Walters, and Lari Wenzel
Other Presenters: Hanne Bruhn, Juliet McMullin, and Elizabeth Waters
4:00 - 5:00 pm
Poster Session I and Reception
6:00 pm
Special Evening Social Event - Local Dine-Around
We are planning to continue the wonderful
discussions stimulated by the meeting over dinner. These will be informal,
yet lively, opportunities to eat well with your colleagues who wish to
have more discussion around certain topics. This is a chance for you
to continue with attendees of a session you went to or are planning to
attend, or to hear about a topic from a session that you couldn't attend.
There will be 8 groups meeting in the Park Plaza lobby at 6:00 pm. Each
group will be loosely organized around a specific area of interest and
might include invited speakers if available- Modern Measurement and Theory,
Cognitive Sciences, 2 groups of Advanced Statistical Analysis, Qualitative
Research Methods, Theoretical Models, Experience Sampling, and State
of the Art Utilities. There will be limited seating for each location,
with a maximum of 12 per topic, so sign up early at the Registration
Desk. Reservations for each restaurant are for 6:30 pm. Each person will
be responsible for their own dinner expenses and transportation to the
local restaurants. A variety of restaurants have been selected.
Tuesday, June 29, 2004
10:00 - 10:15 am
Break
10:15 am - 12:15 pm
Concurrent Sessions
Session 5: Advanced Statistical Analysis II
Presenters: Hebert Thijs and Dennis Fryback
Chair: Diane Fairclough
Click here to view presentation by Dennis Fryback
Other Presenters: Kevin Smith, Xin Shelly Wang, and Kathleen Wyrwich
Other Presenters: Stefan Hofer, Lena Ring, James Shaw and Karen Sousa
12:15 - 1:30 pm
Lunch on your own and Poster Viewing
1:30 - 3:30 pm
Concurrent Sessions
Session 7: Experience Sampling and Daily Process Analysis
Presenters: Howard Tennen and Alex Zautra
Chair: William Lenderking
Other Presenters: Karen Basen-Engquist, William Lenderking, and Stephen Raymond
Click here to view the presentation by David Feeny
Other Presenters: Jeffrey Johnson and Parvez Mulani
3:30 - 5:00 pm
Plenary Session III: Looking to the Future of
Outcomes Research
Presenter: Peter Fayers
Discussants: Chairs of Paper Sessions 1-8
Chairs: William Lenderking and Dennis Revicki
Schedule and speakers are subject to change.
Information about Poster Presentations
Click here to view the specifications for presenting a poster during the meeting.
Early registration deadline: June 7th.
Space is still available. Please download the registration form and register on-site in Boston!
Cancellation Policy: 25% of your registration fee will be refunded if cancellation in writing is received by June 26, 2004. After June 27, no cancellations will be accepted.
The Boston
Park Plaza Hotel, built in 1927, serves as the headquarters hotel of
the symposium. With
an unmatched
location,
this
historic hotel is adjacent to the Public Gardens with its Swan Boats
and chic boutiques, art galleries and restaurants of the world famous
Newbury street.
ISOQOL has negotiated a special sleeping-room rate of $169.00, single
or double, per night, plus tax. You can call them directly at 617-426-2000
or CLICK
HERE reserve
your room online on their website. To book, modify, or cancel a
reservation, you are required to enter the password 97D2F it
identify the meeting.
Be sure and reserve your room by June 4th to guarantee the special rate. After June 4th, the rate will be offered an a space-available basis.