You are invited to attend the third ISOQOL-sponsored series of seminars in state-of-the-art research methods. These intermediate and advanced workshops are intended to provide a hands-on training experience for those persons interested in developing HRQL instruments, evaluating their measurement characteristics, and designing studies and analyzing data from their use within longitudinal studies.

The seminars are divided into two tracks. Track I includes workshops that address Introduction to Health-Related Quality of Life; Often Neglected Aspects of Questionnaire Development; Cross Cultural Issues in HRQL; Cross Cultural Issues in HRQL; and Children and Youth. Track II includes workshops that focus on Modern Psychometric Methods, Adaptive Testing, Dynamic Health Assessment, and the Internet; Item Response Theory and Rasch Models; Analysis of Longitudinal Studies With Incomplete HRQOL Data; and Clinical Significance - Evaluating Change.

Eight hands-on workshops are offered during this two-day block. Registrants may select from both tracks. Each workshop will last for three hours. Participants may register for and attend only one day if desired. The workshops begin at 9:00 a.m. on Monday, June 10 and end at 5:00 p.m. on Tuesday, June 11.

The atmosphere of the workshops the previous two years has given many opportunities for attendees to interact with faculty and other participants. In addition, valuable workshop handouts, two lunches, one reception and several refreshment breaks are all included in the registration fees.

The workshops will be held on 10-11 June 2002 at the Forum Hotel, located at Hochstrasse 3 in Munich, Germany. Each workshop will be limited to 50 participants to allow for maximum interaction between faculty and participants.

Diane Fairclough, DrPH

ISOQOL Board Member

This workshop is designed as an introduction to the conceptual and practical issues involved in constructing and using measures of health-related quality of life. All such measures incorporate some type of scoring system and particular attention will be paid to the valuation methods used in instrument development. A critical review of generic and condition-specific instruments used to measure outcomes in clinical and economic evaluation forms a significant part of the workshop. Generic measures to be discussed will include the QWB, SIP, NHP, SF-36 community, the HUI cluster, and EuroQoL EQ-5D. Examples of the use of quality of life instruments as outcome measures will be used to illustrate both good and practice in the published literature.

The workshop is intended for researchers and health care professionals with an interest in measuring health outcomes. No prior knowledge is assumed but workshop participants will be encouraged to discuss any practical experience of quality of life measurement. The format of the workshop is designed to facilitate significant interaction with ample opportunity for discussion and questioning. On completion of the workshop, participants would be expected to have a general knowledge of the principal methodological in the design and application of quality of life instruments and a clear understanding of the criteria for assessing their relative performance.

In recent years there have been major advances in methods for gathering questionnaire content designed to assess some form of subjective health status and quality of life, for example, the use of face-to-face interviews with representatives of patient groups and focus groups. However, there has been a decline in the amount of attention paid to the more detailed aspects of questionnaire design such as the instructions to respondents, the format, layout and wording of items and interpretation of items by different groups. Also the choice of 'user friendly' response options seems to be a topic which is seldom discussed. All of these can have profound effects on responses and missing data. It is suggested that too much emphasis has been placed upon quantitative methods for the establishment of validity and not enough on qualitative work with individuals. The emphasis of the workshop will be on ensuring 'respondent friendliness' of questionnaires, based on sound theories.

Interpreting HRQL outcomes from multi-national trials, comparing HRQL outcomes across different health care systems and various populations, developing trans-cultural research using subjective individual measurements requires instruments to measure equivalently the same HRQL concept. However, it may express differently in each cultural context. This workshop will provide a review of the various methods used to develop new instruments internationally, and to translate and adapt existing measures. Pitfalls and limitations will be pointed out. Guidelines will be provided to conduct such cross-cultural adaptation in a standardized manner, and some training will be offered to participants interactively, based on experiences gained from different settings and various fields of research.

While quality of life research in adults has progressed substantially over the past 15 years, health-related quality of life of children has only recently been addressed. QOL research in children is important because children can be confronted with disease and treatment as patients. It is important to know how children feel and how treatment can be optimized. Also, children can suffer substantial strain from diseases in other family members. Lastly, epidemiological research has so far neglected living conditions that might be detrimental to the health-related quality of life of children; exceptions are a few studies published in the area of public health and clinical psychology.

This workshop reviews the state of the art of quality of life assessment in children/adolescents as it relates to the underlying concepts the instruments available, and application in research and practice. Presentation will include a comprehensive literature review, demonstration of instruments as well as their computer assisted versions, and a thorough evaluation of the evidence of their use in clinical studies and patient care. Generic as well as disease-specific measures (e.g. asthma, diabetes, epilepsy, rheumatoid arthritis) will be focused on. The material presented will profit from results of recent discussions within an international expert group, collaborating in two large EC funded projects on "Quality of Life of Children with Disabilities (DISABKIDS)" and "Assessing Health Related Quality of Life in Representative Samples of European Children (KIDSCREEN)."

This workshop covers advances in methods for monitoring health outcomes based on item response theory, the logic of computerized dynamic methods of data collection and processing, and the connectivity made possible by the Internet. The advantages of scoring health status on a standard metric, regardless of assessment method, will be demonstrated across different applications, including: (a) population health monitoring; (b) clinical trials and outcomes research; and (c) screening and monitoring individual patients in everyday clinical practice.

The workshop will review the item response theory that lies behind the modern psychometric methods but will focus on the application of the theory in health assessment and on the broader advantages of using this methodology. The technical details will be dealt with more thoroughly in the workshop on Item Response Theory and Rasch models. The two workshops will supplement each other in case participants want to join both workshops.

Item response theory is a psychometric method that explicitly considers the questionnaire items as categorical data. Item response theory can help solve a number of practical assessment problems: Testing dimensionality, examination of the measurement properties of each questionnaire item, test of item function in subgroups of the population, test of questionnaire translations and adjustment for translation problems, better assessment of measurement precision, optimal scoring of respondents, control of assessment quality through person-based evaluation of response consistency, adjustment for missing responses, linking and equating of different scales about the same concept, computerized dynamic assessment

This workshop covers the statistical models in item response theory, how to apply these models in data analysis, how to control model assumption, and how to use the models to solve the assessment problems outlined above. The unique properties of Rasch models will be discussed as well as the connection between item response theory and modern factor analytic models for categorical data.

The workshop will be slightly more technical than the workshop on modern psychometric methods. Participants should be familiar with regression analysis. Knowledge of logistic regression will be an advantage.

In this workshop, we will examine the most widely used methods of longitudinal data analysis and how they are effected by different types of missing HRQOL data. The objective will be to go beyond learning the definitions of Missing Completely at Random (MCAR), Missing at Random (MAR) and non-ignorable or Not Missing at Random (NMAR) and to understand how different types of missing data influence the results obtained from these analytic techniques. Methods to be examined include repeated cross-sectional, summary measures, mixed effects and repeated measures models for incomplete data. We will also discuss how joint estimation of QOL measures and other clinical outcomes may be used to convert a NMAR problem to MAR. Participants should have some experience with the analysis of multivariate analysis: longitudinal data, repeated measures or MANOVA.

This course will examine methods of imputation for longitudinal studies when the missing HRQOL assessments that are believed to be non-ignorable. Simple imputation methods will be briefly discussed but the focus will be on multiple imputation methods. We will discuss the strengths and weaknesses of these methods in longitudinal studies with non-ignorable (NMAR) missing data. The workshop will include hands-on experience with selected techniques (participants are encouraged to bring a hand calculator). Participants should have some experience with the theory and analysis of multivariate analysis: longitudinal data, repeated measures or MANOVA.

Although numerous measures have been developed for the evaluation of health related quality of life (HRQoL), strategies for identifying meaningful intra-individual and group change in these measures have not kept pace with instrument development. As a result, clinical trial researchers, quality assurance assessment teams, and practicing clinicians are without established standards to evaluate change in HRQoL measures. This course will review, critique and compare the methods that have been applied to establish intra-individual and group HRQoL change standards, which include anchor- and distribution-based techniques. Practical approaches to improving and advancing HRQoL change evaluations that enhance the interpretation of intra-individual and group change will be provided. In addition, the course will explore future qualitative and quantitative challenges in this area of HRQoL research.

Send completed registration form with payment to ISOQOL, 6728 Old McLean Village Drive, McLean, VA 22101-3906 USA, or for credit card payments only, fax form with credit card information to 703-556-8729. Payment may be made by check, money order, or credit card. Registration must include payment or an original purchase order.

The Forum Hotel is located at Hochstrasse 3, D-81669 Munich, Germany. The Forum Hotel Munich is conveniently located and close to downtown with freeway access to the A8 and A9. With the S-Bahn-Station "Rosenheimer Platz" located right in the same building, you have a direct connection to the entire S-Bahn and U-Bahn rail network and rapid and direct transit to the Munich International Airport and the new Trade Fair Grounds.

The city centre with Marienplatz and pedestrian zone is easy to reach - just a few minutes away. Across the street from the hotel is the Kulturzentrum (Cultural Centre) Gasteig with Munich’s Philharmonic Orchestra, and the world-famous Deutsches Museum is only five minutes away.

The special meeting room rates are 125/155 EUR single occupancy. Reservations should be made by contacting the hotel directly at +49-(0)89-4803-3333; Email: munich@interconti.com; Fax: +49-(0)89-448-7170. To receive the special sleeping room rates, be sure to mention the code "0906ISO" when making your reservations. All reservations should be received by the hotel no later than April 19, 2002.

All cancellations and refund requests must be received in writing. There will be a $50 administrative fee assessed to each cancellation received by May 10. Cancellations received between May 10 and June 9 will be assessed a $100 fee. Fifty percent (50%) of the registration fee will be returned for cancellations received after the meeting dates.

Networking Cocktail Reception

Each meeting registration includes the opportunity to network during a complimentary one-hour cocktail reception on Monday evening!

For Additional Information

For more information please contact the ISOQOL Executive Office at 6728 Old McLean Village Drive, McLean, VA 22101-3906 USA; Phone: 703-556-9222; FAX: 703-556-8729; Email: info@isoqol.org. To register, return to the opening page and click on the link to register: WWW.ISOQOL.ORG

Which tracks do you plan to attend?

 Reduced Fees for ISOQOL Members!

ISOQOL members may subtract $50 off their registration fee for the two day course, and $20 for the one day course. If you are not a current ISOQOL member, join now to take advantage of this special offer. Membership categories/fees are as follows:

Regular member = $75.00; Contributing member = $200.00; Student/Retired = $30.00