Orlando, Florida (USA) is the playground for adults and children from all around the world.

ISOQOL 2002
October 30 - November 2
Orlando, Florida




9th Annual Conference
of the International Society
for Quality of Life Research
October 30 - November 2, 2002
Orlando, Florida (USA)




Abstract Acceptance
Notifications will be sent June 30, 2002




Index



An Invitation

Dear Colleague,

On behalf of the International Society for Quality of Life Research (ISOQOL), it is our pleasure to invite you to attend the 9th Annual Conference that will be held in Orlando, Florida, USA on October 30 – November 2, 2002.

This year's meeting will have three themes: Theoretical Models of QOL, Methodological Advances in QOL, and Linking QOL and Clinicians. These themes will be reflected in many venues within the program, including plenary lectures, panel discussions, debates, roundtable lunch discussions, peer-reviewed symposia, and peer-reviewed oral and poster sessions. On the first day of the meeting, workshops will provide intensive didactic sessions on a range of conceptual and methodological topics at either novice or advanced levels. We hope that the state-of-the-art science presented in these diverse formats will serve as catalysts for lively discussions that help to further the field of QOL research during and after the meeting.

Orlando is the ultimate playground for both adults and children. We have planned a number of receptions and events that are aimed at enhancing opportunities to meet new colleagues, develop existing relationships, and see some of the many unique entertainment offerings of this city. We look forward to welcoming you to a productive professional meeting and an opportunity to enjoy the special social activities for your family and friends.

See you in October in Orlando!

Carolyn Schwartz, ScD, and Jeff Sloan, PhD
Co-Chairs, 9th Annual Conference of ISOQOL



Provisional Program

(see descriptions of sessions below timetable)

Wednesday,
October 30
Thursday,
October 31
Friday,
November 1
Saturday,
November 2
9:00 am
Registration Opens

9:00 am
Posters Up

9:00 am-12:00 pm
Workshops

1:00-4:00 pm
Workshops

6:00 pm
Citation Poster Session I and Welcome Reception

7:30-8:30 am
Mentor/Mentee Breakfast

8:45-9:00 am
Presidential Welcome

9:00 am
Posters Up


9:00-10:00 am
Plenary I

10:00-10:30 am
Break

10:30 am-12:00 pm
Oral Sessions I, II, III, IV

12:00-1:30 pm
Roundtable Lunches
A-D

1:30-3:00 pm
Oral Sessions V, VI, VII

3:00-3:30 pm
Break

3:30-4:30 pm
Response Shift Panel and Debate

4:30-5:30 pm
Poster Session II

9:00-10:30 am
Plenary II

9:00 am
Posters Up

10:30-11:00 am
Break

11:00 am-12:30 pm
Oral Sessions VIII, IX, X

12:30-2:00 pm Business Meeting and Lunch

2:00-3:30 pm
Special Symposia
(four concurrent)

3:30-4:00 pm
Break

4:00-5:30 pm
Oral Sessions XI, XII, XIII

5:30-6:30 pm
Poster Session III

9:00-10:00 am
Plenary III

9:00 am
Posters Up


10:00-10:30 am
Break

10:30-12:00 pm
Oral Sessions XIV, XV, XVI

12:00-1:30 pm
Roundtable Lunches E-H

1:30-3:00 pm
Oral Sessions XVII, XVIII, XIX

3:00-3:30 pm
Break

3:30-4:30 pm
Interdisciplinary Panel and Item Reduction Panel

4:30-5:30 pm
Poster Session IV

6:30 pm
Sleuths Murder Mystery Dinner Show / Awards and Closing Ceremony


ISOQOL Board Meeting will be all day on Tuesday, October 29.


Selected Topics and Speakers:

PLENARY TOPICS

I. The Contribution of Qualitative Methods and Cognitive Science to QOL Research
Chair: Jeff Sloan, PhD (USA)

Using, Misusing and Confusing Qualitative Approaches in Quality of Life Research, Carol Tishelman, PhD (Sweden)

Enhancing the Dignity of Palliative Cancer Patients: A Qualitative Approach to Quality of Life Research, Tom Hack, PhD (Canada)

II. What are the Alternative Theoretical Models of QOL?
Chair: Carolyn Schwartz, ScD (USA)

Daniel Kahneman, PhD (USA)

Broadening the Boundaries of Quality of Life: The Importance of Purposeful Engagement, Carol Ryff, PhD (USA)

III. Is There a Relationship Between Findings of Patient Quality of Life and Adherence/Compliance within Clinical Research Studies?
Chair: David Cella, PhD (USA)

Quality of Life and Adherence in Rheumatoid Arthritis, Jackie Dunbar-Jacob, DNS (USA)

Quality of Life and Adherence with Therapy: Examining the Mediating Role of Depression, Cynthia Rand, PhD (USA)



PANELS/DEBATE

Response Shift Panel
The Challenge of Response Shift to QOL Research
Moderator: Peter Fayers, PhD (UK)

Presenters:
  • Mirjam Sprangers, PhD, AMC (The Netherlands)
  • Bruce Rapkin, PhD (USA)
  • Carolyn Schwartz, ScD (USA)
  • Patrick Devlieger, PhD (Belgium)
  • Jane Blazeby, MD (UK)


    Debate
    When do QOL Measures in a Study Make a Difference or Should QOL be Included in an NDA?
    Moderator: Albert Wu, MD, MPH (USA)

    Debate Panel:
  • David Osoba, MD (pro) (Canada)
  • Colleen McHorney (skeptic) (USA)
  • Nancy Santanello (comment) (USA)


    Interdisciplinary Panel
    1. What is the most Important Contribution of your Discipline to QOL Research?
    2. What is the Single Most Important Focus for QOL Research in the Future?
    Chair: Sharon Wood-Dauphinee, PhD (Canada)

    Discipline Representatives:
  • Philosophy: Bengt Brülde, PhD (Sweden)
  • Nursing: TBD
  • Psychology: TBD
  • Statistics: Madeleine King, PhD (Australia)
  • Economics: Eric Nord, PhD (Norway)
  • Clinical Medicine: Ira Wilson, MD (USA)


    Item Reduction Panel
    State of the Art on Item Reduction:
    Identifying the Good, Bad and Ugly Items: Analysis and Evaluation
    Chair: Donna Lamping, PhD (UK)
    Presenters:
  • Donna Lamping, PhD (UK)
  • Ron Hays, PhD (USA)
  • Mogens Groenvold, MD, PhD (Denmark)
  • Francis Guillemin, MD, PhD (France)
  • Discussant: Dennis Revicki, PhD (USA)


    SELECTED SYMPOSIUM TOPICS

    Exploring the Link Between QOL and Depression in Cancer: Research of the Behavioral Cooperative Oncology Group (BCOG)
    Chair: Susan M. Rawl, PhD, RN

    Development and Application of the Child Health and Illness Profile - Child Edition (CHIP-CE)
    Chair: Anne W. Riley, PhD

    Quality of Life at the End of Life: New Applications in Measurement
    Chair: Carolyn Schwartz, ScD

    Major Findings from the Cancer Outcomes Measurement Working Group (COMWG): The Value of HRQOL and Applications of Outcomes Measurement in Cancer
    Chair: Carolyn C. Gotay, PhD



    ROUNDTABLE LUNCHES*
    (12:00 - 1:30 pm Thursday and Saturday)

    Thursday, October 31st

    1. The contribution of qualitative methods to QOL research: the contribution of cognitive science.
      Facilitator: Tom Hack
    2. How can QOL measures be incorporated with survival: perspectives of clinicians, statisticians, and psychologists.
      Facilitator: Delfino Vargas
    3. What are the major models to improve health outcomes and to improve health behavior and how do these relate to QOL.
      Facilitators: Silke Schmidt and Ulrike Ravens-Sieberer
    4. Working groups in QOL: Is the whole greater than the sum of its parts?
      Facilitator: Charles Scott

    Saturday, November 2nd

    1. What are the primary alternative theoretical models of QOL?
      Facilitator: Marcel Dijkers
    2. Patients's ex post well being versus the general public's ex ante preferences for health states: Did the U.S. Cost-effectiveness Panel conflate the issues?
      Facilitator: Erik Nord
    3. Is QOL determined by discrepancy between expectations and experience?
      Facilitator: Kwok-Fai Leung and Bruce Rapkin
    4. Is it time for routine QOL assessment as part of clinical care?
      Facilitator: Claudette Varricchio
    5. Oral Health Related Quality of Life - A Communication Tool for Health Care Teams
      Facilitator: Marita Inglehart

    *Not Included in Registration Fee; Additional Fee Required


    ORAL SESSIONS

    Thursday, October 31st
    Sessions I - IV
    10:30 am - 12:00 pm
    Clinical Trials, Pediatric I, Cancer I, Item Response Theory

    Sessions V - VII
    1:30 - 3:00 pm
    Qualitative, Cardiology, Clinical Significance

    Friday, November 1st
    Sessions VIII - X
    11:00 am - 12:30 pm
    Population-Based Studies, Cancer 2, Response Shift

    Sessions XI - XIII
    4:00 - 5:30 pm
    Pediatric 2, Neurology, Interpretation

    Saturday, November 2nd
    Sessions XIV - XVI
    10:30 am - 12:00 pm
    Scale Development, Chronic Diseases, Utilities

    Sessions XVII - XIX
    1:30 - 3:00 pm
    Elderly, Cancer 3, Design Issues



    English is the official language of the conference; no simultaneous translation.



Guidelines for Submission of Abstracts

Deadline: The deadline for regular submission of abstracts has passed (April 30, 2002).

Registration Requirement: Authors whose abstracts are accepted are required to register by July 30, 2002.





Topics for Abstract Submission

Methodological and Theoretical Topics in QOL
1. Analytic Issues (longitudinal studies/missing data/multiplicity of endpoints)
2. Individualized Measures
3. Instrument Calibration/Equivalency among Scales
4. Interpretation of HRQOL data
5. Item Response Theory (IRT)
6. Modes of Administration
7. Proxy Measures
8. Psychometric Methods/Scaling
9. Qualitative Methods
10. Response Shift
11. Responsiveness/Interpretation
12. Scale Development/Validation
13. Scale Translation/Cultural Adaptation
14. Theories of Quality of Life
15. Utilities

Disease-Specific Applications of QOL Research
A. Cardiovascular Disease
B. Chronic Disease
C. Dermatology
D. Gastrointestinal Disease
E. Gynecology/Obstetrics/Endocrine
F. Infectious Disease/HIV/AIDS
G. Musculosketal/Rheumatology
H. Neurology
I. Oncology
J. Psychiatric Disorders/Substance Abuse
K. Psychoneuroimmunology
L. Respiratory Disease
M. Surgery/Transplantation
N. Urology/Nephrology

QOL in Special Populations
O. Children
P. Disability/Injury/Rehabilitation
Q. Elderly
R. End of Life care
S. Family/Caregivers
T. Minority Populations

QOL in Specific Research Settings
U. Clinical Trials
V. Disease Prevention/Public Health
W. Epidemiology/Population based studies
X. Health Services Research/Technology Assessment
Y. Medical Practice/Quality of Care



Scientific Awards

ISOQOL presents prestigious awards honoring individuals in three different categories. ISOQOL is committed to promoting excellence in quality of life research; therefore, new in 2002, the Early Career Investigators' Awards will be presented during the conference closing dinner. These awards, which replace the "Young Investigator Awards" of previous years, recognize the best overall oral and poster presentations made by full-time students or post-doctoral individuals in the early stages of their career in QOL research, having either received their doctorate within the last five years or having worked as an independent researcher in the field for five years or less.

The President's Award is given annually to an individual or group that has advanced QLR and has made outstanding contributions to ISOQOL in one or more of the following areas: education of professionals, patients or lay individuals about HRQOL's value; promotion or execution of HRQOL or other scholarly activities; facilitating or furthering policy initiatives that have an impact on HRQOL. The awardee is selected by the Executive Committee and endorsed by the Board. Individuals who excel in one or more of the named areas may be nominated by a colleague, student or friend. For more information on the nomination process, contact the ISOQOL office.



Scholarships

The deadline for submitting applications for Scholarships for early career investigators and those with financial need who reside in developing countries has passed (July 1, 2002).


Mentor/Mentee Program

This year, ISOQOL is pleased to announce the return of the Mentor/Mentee program, matching Early Career Investigators with Mentors in the QOL field. A Mentor/Mentee breakfast will be held on Thursday, October 31st at 7:30 am. If you are an Early Career Investigator and are interested in meeting with a Mentor from ISOQOL, or if you are interested in being a Mentor, please indicate your primary clinical/research interest area on your registration form. Also, please email your biosketch or CV to info@isoqol.org and type "mentoring program" in the subject line.

You will receive more information regarding the assignments closer to the meeting. In order for the committee to make appropriate matches for this program, you must register and submit your biosketch or CV by August 30, 2002.

ISOQOL Employment Exchange Program

This year, ISOQOL is proud to announce the Employment Exchange Program, taking place at the 2002 ISOQOL Annual Conference. This program will allow institutions to post job opportunities at the meeting as well as allow qualified applicants looking for employment to post their resume at the meeting.

We will maintain notebooks for job seekers and employers near the registration area during the meeting, where you can look through all available positions and candidates. The notebooks will be stationed near the ISOQOL Membership Table.

Please consider placing your job description or resume on file for attendees at the ISOQOL meeting to review. Click here to download the forms. You can bring a hard copy (please bring 2 copies) with you to the meeting and drop it off at the registration desk or once they are complete, you can email them by October 20th to the ISOQOL Executive Office at info@isoqol.org or fax them to 703-556-8729.

If you know of a colleague who might have job openings for individuals interested in the quality of life area, they too can submit, as long as they designate you as the contact during the meeting so that candidates can get more information if needed.

Training Workshops

Duration: All workshops will last three hours and will be held on Wednesday, October 30 at the Caribe Royale.

Final Workshop Program: Click here for Workshop descriptions. Individuals are encouraged to register as soon as possible, as space is limited. A minimum number of participants will be required to organize a workshop.

Workshop Registration Fees: The fees for workshop registration vary based upon membership and student status (see pricing table below for details). Register by July 24, 2002, or attend two workshops, to receive discounted rates.



Insurance

ISOQOL cannot accept responsibility for personal losses, accidents, or damages to participants and/or accompanying persons. Participants are therefore strongly advised to obtain personal insurance to cover any eventuality that may occur during the Conference.



Registration

Click here to Register online for Conference.

Registration fees:

By July 24 After July 24
but before Oct. 22
On-site
ISOQOL member: US$320 US$370 US$420
Non-member: US$420 US$470 US$520
Student member: US$115 US$140 US$180
Student non-member*: US$150 US$175 US$200
Registrant-Dinner Saturday: US$50 US$55 US$60
Accompanying Person**: US$65 US$70 US$75
Accompanying Person Under 12**: US$25 US$30 US$35


*Please provide a letter from your mentor or a copy of your student identification.
**View registration form for events included.

Workshop Fees:

By July 24 After July 24
but before Oct. 22
On-Site
Member/One workshop US$125 US$150 US$195
Member/Two workshops US$200 US$225 US$265
Non-member/One workshop US$150 US$175 US$220
Non-member/Two workshops US$225 US$250 US$295
Student member/One workshop US$50 US$75 US$135
Student member/Two workshops US$75 US$100 US$160
Student non-member/One workshop US$75 US$100 US$145
Student non-member/Two workshops US$100 US$125 US$175


If your registration form with full payment is not received by October 22, 2002 you must register on-site.

The Registration Fee includes:

  • Participation in the Conference and access to the exhibition area
  • Abstracts and program
  • Certificate of attendance
  • Welcome Reception on Wednesday, October 30
  • Refreshments/coffee breaks on Thursday, Friday, and Saturday, October 31-November 2
  • Lunch Friday for those who attend the Business Meeting.
Cancellations

All cancellations must be received in writing and all refunds will be paid after the Conference. A $50 fee will be assessed for cancellations received by July 24. 50% of the total amount will be refunded if cancellation is received by October 1. 25% will be refunded if cancellation is received by October 30. Cancellations received after October 30 will not be eligible for a refund.



Hotel Accommodation

This year's ISOQOL meeting will take place at the Caribe Royale Resort Suites & Villas. ISOQOL has arranged a special sleeping room rate of $149 US per night plus tax for ISOQOL meeting attendees. Enjoy unsurpassed accommodations for the whole family at the Caribe Royale, a four star caliber resort. Choose a one-bedroom suite featuring a spacious living room and private bedroom with abundant comforts including dataports for laptop use. Or decide upon a expansive richly appointed two-bedroom villa overlooking a lake. Experience the luxuries of a resort, in a setting that's as familiar as home. The hotel is close to shopping, cultural, and dining venues, and is just minutes from all of Orlando's world-famous sites and attractions!

Hotel arrangements may be made directly through the Caribe Royale Resort Suites & Villas, 8101 World Center Drive, Orlando, Florida 32821; Telephone:(800) 823-8300 (in US) or (407) 238-8000 (outside US); Fax: (407) 238-8050. To book your room online at www.cariberoyale.com, click on the BOOK NOW button, then click on MAKE A RESERVATION, and then on CLICK HERE FOR OFFICIAL GROUP/MEETINGS/CONVENTION RESERVATIONS. Look for the ISOQOL logo and click on the logo. Please enter the password ISOQOL to make your room reservation. You can also e-mail the Resort at: Reservations@cariberoyale.com.

The cut-off date for hotel reservations is September 26, 2002; however, we recommend that you make your reservations as soon as possible to ensure that you will get a room under the ISOQOL block. Any reservations requested after September 26 will be on a "subject availability" basis, at the best rate available.



Transportation

The Orlando International Airport is serviced by the world's leading airlines so it is easy to reach Orlando from any major city. And when you land, you are only 20 minutes away from the heart of downtown.

Please make your own flight arrangements.



Conference Dinner

Join friends and colleagues for an evening of fun and mystery!
ISOQOL is proud to present the Sleuths Murder Mystery Dinner Show on Saturday, November 2nd at the Caribe Royale Resort Suites and Villas at 6:30 pm.

The evening begins with a reception while you get acquainted with the characters of the show. Following the reception, enjoy an exciting and intellectually stimulating play. Dinner, following the play, will allow time for you to discuss clues and theories. Be sure to come up with some good questions, because after dinner all of the characters will be back on stage and will allow you to interrogate them for more information.

The dramatic unveiling follows dessert. Prizes are awarded for everyone who correctly guesses the murderer!

The Awards and Closing Ceremony will also be held at this time, so bring your family along as we conclude the 2002 meeting and say farewell until next year!

NOT INCLUDED IN REGISTRATION COST; ADDITIONAL FEE REQUIRED.



ISOQOL 2002 Scientific Program Committee

Co-Chairs
Carolyn Schwartz, ScD, Concord, MA (USA)
Jeff Sloan, PhD, Rochester, MN (USA)


Committee Members
Neil Aaronson, PhD, The Netherlands
Jordi Alonso, MD, PhD, Spain
Rick Berzon, DrPH, USA
Andrea Bezjak, MD, MSc, Canada
Joseph Cappelleri, PhD, MS, MPH, USA
Marcel Dijkers, PhD, USA
Diane Fairclough, DrPH, USA
Henning Flechtner, MD, Germany
Marlene Frost, RN, PhD, USA
Cynthia Gross, PhD, USA
Madeleine King, PhD, Australia
Paul Krabbe, PhD, The Netherlands
Anandi Law, USA
William Lenderking, PhD, USA
David Lewis, PhD, Canada
Elaine McColl, MSc, UK
Deborah Miller, PhD, USA
Carol Moinpour, PhD, USA
Timothy Moynihan, PhD, USA
Ann O'Mara, PhD, USA
Donald Patrick, PhD, USA
Ulrike Ravens-Sieberer, PhD, MPH, Germany
Dennis Revicki, PhD, USA
Charles Scott, PhD, USA
Jane Scott, PhD, USA
Tara Symonds, PhD, UK
Delfino Vargas-Chanes, PhD, USA
Claudette Varricchio, DSN, USA
Ingela Wiklund, PhD, MSc, Sweden
Gilbert Wong, MD, USA
Kathleen Wyrwich, PhD, USA



ISOQOL Leadership

President
David Osoba, MD, Canada

President-Elect
Mirjam Sprangers, PhD,
The Netherlands

Immediate Past President
Ivan Barofsky, PhD, USA

Editor of Journal
Neil Aaronson, PhD,
The Netherlands

Secretary-Treasurer
Dennis Revicki, PhD, USA
Board Members

Jordi Alonso, MD, PhD, Spain
Rick Berzon, DrPH, USA
David Cella, PhD, USA
Diane Fairclough, DrPH, USA
Peter Fayers, PhD, Scotland
Madeleine King, PhD, Australia
John Ware, PhD, USA
Albert Wu, MD, USA



ISOQOL Executive Office
ISOQOL is managed by Degnon Associates
George K. Degnon, CAE-Executive Director
Laura Degnon-Associate Executive Director
Bette Anne German-Association Manager
6728 Old McLean Village Drive
McLean, Virginia 22101-3906 USA
Phone: 703-556-9222
Fax: 703-556-8729
Email: info@isoqol.org
www.isoqol.org