On-Demand Sessions

Events » 27th Annual Conference » Program » On-Demand Sessions

On-demand sessions will be recorded in advanced and available for viewing anytime during the virtual conference.


Concurrent symposium sessions showcase the research and science of the ISOQOL community. Symposium sessions are selected following peer review of submitted abstracts. Access to symposium sessions is included in conference registration.

Symposium 1: Extending the QALY (E-QALY): developing a new international preference-based outcome measure for health and quality of life


John Brazier, PhD, School of Health and Related Research, The University of Sheffield, Sheffield, United Kingdom


Madeleine King, Cancer Australia Chair in Cancer Quality of Life, School of Psychology, University of Sydney, Sydney, New South Wales, Australia

Individual Presentations:

EXTENDING THE QALY (E-QALY): Developing a new generic preference-based measure for use with patients, carers and those needing care – an overview

John Brazier, PhD, School of Health and Related Research, The University of Sheffield, Sheffield, United Kingdom

E-QALY: Identifying dimensions and items for a generic preference-based measure

Clara Mukuria, University of Sheffield, Sheffield, United Kingdom

E-QALY: Psychometric testing and selecting the items for a new generic preference-based measure

Ole Marten, MSc, School of Public Health, Department of Health Economics and Health Care Management, Bielefeld University, Bielefeld, Germany

E-QALY: Face validity testing the items for a new generic preference-based measure 

Zhihao Yang, PhD, Jinan University, Guangzhou, China

E-QALY: Valuing the items for a new generic preference-based measure using time trade-off and discrete choice experiments

Donna Rowen, PhD, University of Sheffield, Sheffield, United Kingdom

Symposium 2: Do you know what I mean? Interpreting PRO/HRQOL scores at group and individual level.


Corneel Coens, EORTC HQ, Brussels, Belgium


Galina Velikova, PhD MD, Leeds Institute of Medical Research at St James’s, University of Leeds, Leeds Cancer Centre, Leeds, United Kingdom

Madeleine King, PhD, University of Sydney, Sydney, Australia; Submitted on behalf of EORTC Quality of Life Group

Individual Presentations:

Interpretation of patient reported outcome data at group-level versus individual-level; can we use the same clinical meaningful thresholds for both scenarios?

Jammbe Musoro, PhD, EORTC HQ, Brussels, Belgium

Development and use of thresholds for clinical importance to facilitate interpretation of scores from patient-reported outcome measures

Johannes Giesinger, PhD, Medical University of Innsbruck, Innsbruck, Austria

Norm data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons from the European general population, Canada, and the USA.

Sandra Nolte, PhD, ICON plc, Berlin, Germany

Symposium 3: Using an implementation science approach to implement and evaluate Patient Reported Outcome Measures (PROM/PREM) initiatives in routine care settings


Angela Stover, PhD, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States 


Maria Santana, PhD, University of Calgary, Alberta, Canada

Individual Presentations:

One vehicle, too many wheels: towards consistent use of theory for guiding the implementation of PROMs/PREMs in routine clinical practice

Caroline Potter, PhD, University of Oxford, Oxford, United Kingdom

Implementation of PROMs in routine clinical care within an integrated pain network

Sara Ahmed, PhD, McGill University, Montreal, Quebec, Canada

Using the Integrated framework Promoting Action Research in Health Services (iPARIHS) Framework to study implementation of PROMs into oncology care

Natasha Roberts, PhD, Queensland University of Technology, Kelvin Grove, Australia

Using Implementation Science to Inform Integration of Electronic Patient-Reported Experience Measures (ePREMs) into Healthcare Quality Improvement

Kimberly Manalili, PhD Candidate, University of Calgary, Calgary, Alberta, Canada

Implementation of the KLIK PROM portal using the Consolidated Framework for Implementation Research (CFIR) retrospectively

Hedy van Oers, PhD, Emma Children’s Hospital Amsterdam UMC, Amsterdam, Netherlands

Implementation science metrics to evaluate patient-reported outcome measure (PROM) implementation initiatives in routine care settings

Angela Stover, PhD, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States

Symposium 4: Optimizing Power and Precision in Rare Disease PRO Endpoints


Pronabesh Dasmahapatra, MD MPH, Head, Heath Economics and Value Assessment Strategy, Rare Disease and Rare Blood Disorder, Cambridge, Massachusetts, United States

Individual Presentations:

Most Bothersome Symptom in Rare Disease: A Look at Endpoint Precision and Validity

R. J. Wirth, PhD, Vector Psychometric Group, LLC, Chapel Hill, North Carolina, United States

Hypothesis Tests to Evaluate Treatment Efficacy that Optimize Power and Precision in Rare Disease Settings

Charles Iaconangelo, PhD, Pharmerit International, Brooklyn, New York, United States

A New Method for Testing Significance of eCDF Separation for Meaningful Change in Rare Diseases

Daniel Serrano, PhD, Pharmerit International, Bethesda, Maryland, United States

Symposium 5: Integrating Adverse Event Data and Patient-Reported Outcomes to Better Understand Cancer Treatment Tolerability: The US National Cancer Institute-Funded Tolerability Consortium


Gita Thanarajasingam, MD, Division of Hematology, Mayo Clinic, Rochester, Minnesota, United States

Individual Presentations:

Analytic and Interpretation Approaches for PRO-CTCAE, CTCAE, and Other Clinical Data to Characterize Drug Tolerability

Amylou Dueck, PhD, Mayo Clinic, Scottsdale, Arizona, United States

Measuring the Tolerability of Cancer Therapy: Incorporating Host Factors as Moderators of Toxicity and Outcomes

Patricia Ganz, MD, Department of Health Policy and Management, UCLA Fielding School of Public Health, Los Angeles, California, United States

Relationships between aging-related conditions and treatment tolerability in older adults with advanced cancer

Eva Culakova, PhD, University of Rochester, Rochester, New York, United States

Analysis of ECOG-ACRIN Clinical Trials to Advance Longitudinal Assessment of Cancer Treatment Tolerability

John Devin Peipert, PhD, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States

Symposium 6: From single site to scale: What does it take to implement PROs across health systems?


Danielle C. Lavallee, PharmD PhD, University of Washington, Seattle, Washington, United States.

Individual Presentations:

Recommendations for governing PRO use across health systems

Danielle C. Lavallee, PharmD PhD, University of Washington, Seattle, Washington, United States

Governing PROs across health systems: Case study at University of Utah

Rachel Hess, MD MS, University of Utah, Salt Lake City, Utah, United States

Recommendations for integrating PROs into clinical care delivery

Elizabeth Austin, University of Washington, Seattle, Washington, United States

Integrating PROs into care delivery: Case study at University of Pittsburgh Medical Center

Janel Hanmer, MD PhD, University of Pittsburgh, Pittsburgh, Pennsylvania, United States

Symposium 7: Application and value of qualitative in-trial or ‘exit’ interviews to generate supplementary evidence regarding patients’ trial, treatment and disease experiences: examples from multiple disease areas


Sophi Tatlock, Adelphi Values Ltd, Bollington, United Kingdom

Individual Presentations:

Using qualitative exit interviews to explore the disease experience and evaluate Performance-Reported Outcomes (PerfOs) with patients who experience muscle weakness

Maggie Tabberer, MSc, GlaxoSmithKline, London, United Kingdom

Qualitative exit interviews with study clinical investigators to explore trial and treatment experience and feasibility of use in general clinical practice

Nicola Williamson, Adelphi Values Ltd, Bollington, United Kingdom

Patient perspectives on the benefit of a novel therapy for a rare disease: Using qualitative exit interviews to inform post-launch value messaging and to support shared treatment decision-making

Parth Vashi, PharmD, Bayer Pharmaceuticals, Whippany, New Jersey, United States

Use of qualitative exit interviews to explore individual experiences of treatment and meaningful change in two clinical trials for autism spectrum disorder.

Elizabeth Gibbons, MSc, Clinical Outcomes Solutions, Folkestone, United Kingdom

Symposium 8: Making sense of sensors: Selecting, incorporating, and analyzing fit-for-purpose technologies for continuous data capture in clinical trials


Philip Griffiths, PhD, Adelphi Values, Bollington, United Kingdom


Michelle Campbell, U.S. Food and Drug Administration, Silver Spring, Maryland, United States

Individual Presentations:

How can transdisciplinary collaboration help us ensure that the digital medicine tools we are being asked to place our trust in are indeed trustworthy?

Jennifer Goldsack, MChem MA MBA, Digital Medicine Society (DiMe), Boston, Massachusetts, United States

Industry Considerations for the use of Technologies for Continuous Data Capture

Jiat Ling Poon, PhD, Eli Lilly and Company, Indianapolis, Indiana, United States

Technologies for continuous data capture in clinical trials – the logistics of makings it happen

Paul O’Donohoe, Medidata, London, United Kingdom

Technologies for continuous data capture: Discussing dilemmas with data and considering potential analysis approaches

Carrie Houts, Vector Psychometric Group, Tempe, Arizona, United States

Symposium 9: Using the estimand framework to align study design and analysis with patient-reported outcome objectives: the times they are a-changin’


Bellinda King-Kallimanis, PhD, U.S. Food and Drug Administration, Silver Spring, Maryland, United States
Madeline Pe, PhD, EORTC Quality of Life Department, Brussels, Belgium

Individual Presentations:

An HTA perspective on the treatment policy estimand if the endpoint is repeatedly measured over time

Christoph Schürmann, Dr., IQWiG – Institute for Quality and Efficiency in Health Care, Cologne, Germany

Why & how to use time-to-event endpoints for COAs & how can the estimand framework help?

Rachael Lawrance, Adelphi Values Ltd, Bollington, United Kingdom

Applying the Estimand Framework to Describe Patient Experience While on Treatment: A Case Study

Mallorie Fiero, PhD, U.S. Food and Drug Administration, Silver Spring, Maryland, United States

Symposium 10: The future of electronic patient-reported outcome measurement for children and adolescents: the use of computer adapted testing


John Chaplin, PhD, Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden

Individual Presentations:

The Kids-CAT: a computer adaptive tool to measure quality of life in children and adolescents. Development, validation and implementation in clinical settings and population health reporting

Christiane Otto, PhD, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

From translation to implementation: the challenge of PROMIS® CATs in daily pediatric practice.

Michiel Luijten, Emma Children’s Hospital, Amsterdam UMC, Amsterdam, Netherlands

Comparison of PROMIS Computerized Adaptive Testing-Administered Item Banks versus Fixed Short Forms in Juvenile Myositis

Kaveh Ardalan, MD MS, Duke University School of Medicine, Durham, North Carolina, United States

Using CATs to measure symptom burden reported by children with brain tumors

Jin-Shei Lai, Northwestern University, Chicago, Illinois, United States

Application of the Kids-CAT in the clinical setting: Predictors of health-related quality of life in children and adolescents with chronic diseases

Kathrin Fischer, Charité Universitatsmedizin Berlin, Berlin, Germany

SIG Symposia

Three concurrent symposia hosted by ISOQOL Special Interest Groups (SIGs) will be held. These symposia provide educational content related to the special interest and expertise of the groups hosting the session. SIGs had the opportunity to submit a proposal and the presenting groups rotate annually to ensure parity and differentiation of content.

This year, the following SIGs and symposia have been selected:

Industry SIG: Item Bank for your Buck: Successfully Harnessing the Power of Item Banks and Libraries to Assess Clinical Benefit from the Patient Perspective


Linda Nelsen, MHS, GlaxoSmithKline, United States


David Cella, PhD, Northwestern University, United States
Heather Gelhorn, PhD, Evidera, Bethesda, United States
Antoine Regnault, PhD, Modus Outcomes, France
Jill Bell, PhD, Takeda Oncology, United States

Items banks and libraries such as PROMIS, PRO-CTCAE and EORTC Item Library support measurement of PRO concepts across therapeutic areas. Creating custom PRO measures, or short-forms, from item banks / libraries may enhance measurement precision and validity, and reduce resources required for PRO development. However, development of short forms optimized for use in specific target populations from these measurement systems requires a robust research plan, with clarity of concepts, rigorous qualitative research, and sophisticated psychometric methods.

This symposium will provide an overview of item banks and libraries, with examples of the application of these measurement systems for specific populations, highlighting benefits and challenges to their use.

Presentations will consider item selection approaches supporting appropriate content coverage and ensuring an understanding of measurement properties of these custom measures.  An interactive panel will discuss the value of item banks to patients, clinicians, and industry.

Mixed Methods SIG: The Application of Mixed Methods to Measure Health Outcomes in Clinical Trials, Clinical Practice, and Health Policy


Motolani Ogunsanya, BPharm MS PhD, University of Oklahoma Health Sciences Center, United States
Carla Dias Barbosa, MSc, Evidera, United Kingdom


Sophie Cleanthous, PhD, Modus Outcomes, United Kingdom
Mona Martin, PhD, Evidera, United States
Motolani Ogunsanya, BPharm MS PhD, University of Oklahoma Health Sciences Center, United States
Carla Dias Barbosa, MSc, Evidera, United Kingdom
Skye Barbic, PhD, University of British Columbia, Canada

Recent advances in mixed methods research (MMR) provide an opportunity to better understand patient experience with disease and/or treatment and impact on their quality of life (QOL) by integrating qualitative and quantitative methods in research design and using patient-reported outcome measures (PROMs) developed through robust patient engagement and advances in metrology.

This symposium will provide an overview of MMR in the context of health outcome research and highlight multiple international examples about the application of these methods in clinical trial research for evaluation of treatment benefit, PROM development, and testing and implementation of PROMs in clinical practice and policy. This symposium uses a graded learning approach by first introducing MMR in QoL research to the audience (presentation #1), use of MMR in PROM development (presentation #2), PROM testing and validation (presentation #3), treatment risk-benefit assessment in clinical trials (presentation #4) and PROM implementation in policy and system transformation (presentation #5).

Psychometrics and Response Shift SIGs: How to Assess and Interpret Measurement Properties and Change Over Time using Longitudinal Item Response Theory (LIRT)


Henrik Rode Eshoj, PhD, Odense University Hospital, Denmark


Frances M. Yang, PhD, University of Kansas Medical Center, United States
Andrew Trigg, MSc, Adelphi Values, United Kingdom
Philip Griffiths, PhD, Adelphi Values, United Kingdom
Jakob Bjorner, MD PhD, Optum Patient Insights, United States
Berend Terluin, MD PhD, Amsterdam University Medical Center, the Netherlands
Myriam Blanchin, PhD, University of Nantes, France


Carrie R. Houts, Vector Psychometric Group, United States

Item Response Theory (IRT) is normally used at a single timepoint. However, when longitudinal data is available other advantageous applications of IRT exist. In this context, IRT can be used to evaluate change, derive meaningful change thresholds and understand response shift. Additionally, longitudinal data may help support IRT models for instrument validation in small samples.

This symposium presents the “what, when, and how” of Longitudinal IRT (LIRT). Attendees will be introduced to the concepts of IRT and how to apply this in a longitudinal dataset to explore a tool’s measurement properties. We will build on this by showing examples of using LIRT to assess and interpret change and investigate and adjust for response shift. Content will be discussed by an experienced psychometrician, ensuring this complex topic will be delivered in a practical and accessible way.  Example code will be provided to help attendees apply LIRT to their own research.

Oral Sessions

Oral sessions are composed of 5-6 peer-reviewed abstracts clustered around one common theme. Recordings of individual 10 minute presentations will be available for viewing anytime during the virtual conference.

Oral Brief Sessions

Oral Brief sessions are composed of 10 abstracts in the same primary application category. Recordings of the individual 5 minute presentations will be available for viewing anytime during the virtual conference.

Poster Sessions

Poster sessions feature peer-reviewed abstracts in thematic groupings. Using the provided cloud-based software, all presenters will create a virtual poster that include text, images, links and audio clips to explain their research.

Tricks of the Trade Presentation

Organized by the New Investigator SIG

Karon Cook, PhD and Ida Korfage, PhD

How to Become Leaders in ISOQOL

Becoming a leader in a professional organization is a terrific opportunity for junior investigators. However, many of us wonder about the best ways to become leaders. This Tricks of the Trade session will allow attendees to identify available positions in ISOQOL and recognize clear barriers and facilitators to obtaining these leadership positions. Please join two internationally-recognized ISOQOL leaders as they share their personal experiences in leadership positions in ISOQOL, offer tips and suggestions on getting involved, and answer YOUR burning questions about leadership opportunities. Lessons learned from this session can be immediately put into practice during the annual conference!

Our Sponsors

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.