Open Meetings

October, 2015, Vancouver, Annual Meeting of the ISOQOL

Cutting Edge Research Plenary

Inflammatory gene SNPs as predictors of patient-reported symptom‐related functioning in patients with multiple myeloma. [PDF]
Presentor: XS Wang, MD MPH, Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, Texas, United States

 

March, 2014, San Francisco, Annual Meeting of the American Psychosomatic Society

Parallel session

The genetic basis of quality of life in healthy Swedish women - a candidate gene approach.
Authors: Schoormans D, Li JM, Darabi H, Brandberg Y, Sprangers M, Eriksson M, Zwinderman K, Hall P.

 

October, 2013, Miami, International Society for Quality of Life Research (ISOQOL) Annual Conference

Symposium: Genes, Cells and Symptom Clusters - What’s the Story?

Moderator: Madeleine T. King, PhD, Psycho-oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, Australia
Discussant: Donald Patrick, PhD MSPH, Seattle Quality of Life Group, Seattle, Washington, United States

Background: Tantalizing evidence is emerging of “symptom clusters” in cancer. A common cause could point to more effective treatment of symptoms via the underlying cause. As individualized medicine emerges as the new treatment paradigm, informed by genetic profiling, it is both timely and important to explore possible causal pathways between biological parameters (such as gene expression, DNA methylation, genotypes and cytokines) and patient-reported outcomes including symptoms and other aspects of quality of life (QOL), not only in cancer but in all health conditions.
Objective: To frame a research agenda which will illuminate the genetic and biomolecular underpinnings of symptom clusters and HRQOL.

Presentations
A Conceptual Framework for Linking Biological Mechanisms to Symptom Clusters
Donald Patrick, PhD MSPH, Seattle Quality of Life Group, Seattle, WA, United States [PDF]

Inflammatory Response-Related Development of Sickness Symptoms During Aggressive Cancer Therapy
Xin Shelley Wang, MD MPH, MD Anderson Cancer Center, Houston, TX, United States [PDF]

Pre-Clinical Biological Basis

Annemeike Kavelaars, PhD, MD Anderson Cancer Center, Houston, TX, United States

Studying the Biological Underpinnings of Quality of Life: Update on the GeneQol Consortium Activities

Mirjam AG Sprangers, PhD, Academic Medical Center, University of Amsterdam, The Netherlands [PDF]

 

October, 2012, Budapest, International Society for Quality of Life Research (ISOQOL) Annual Conference

Plenary session: Paving the path towards personalized medicine

Co-chairs: Juan Dapueto and Mirjam Sprangers

The USA Institute of Medicine defines personalized or individualized medicine as follows: “(It) is about making the treatment as individualized as the disease. It involves identifying genetic, genomic, and clinical information that allows accurate predictions to be made about a person's susceptibility of developing disease, the course of disease, and its response to treatment.”

In this definition no mention is being made of patient-reported outcomes as basis for predictions. Moreover, a person’s susceptibility to of life-style changes or diagnosis are not mentioned explicitly either. In this session, the three speakers will provide different perspectives on individualized medicine taking these omissions into account.

Dr. Hall will be talking about individualized screening for breast cancer making use of genetic and life style information as well as of quality-of-life data.

Dr. Morisky will be talking about individualized life-style changes and treatment adherence, making use of clinical and psychosocial information.

Dr. Narrow will present how individualized diagnosis of psychiatric conditions, based on the DSM-5, can be based on clinical and patient-reported information.

Per Hall, MD, PhD, Professor of Radiation Epidemiology, Department of Medical Epidemiology and Biostatistics, Karolinska Institute, Stockholm, Sweden
Per is trained as a medical oncologist. He currently spearheads a large-scale, nation-wide study to reduce incidence and mortality of breast cancer through individualized prevention.

Donald E. Morisky, ScD, ScM, MPH, Professor, Department of Community health Sciences, UCLA School of Public Health, Los Angeles, CA, United States
Donald is trained in health education and behavioural sciences. His major research focus is on behavioral aspects of medicine, with special reference to treatment adherence and reduction of risk behaviour.

William E. Narrow, MD, MPH, Research Director, DSM-5 Task Force, American Psychiatric Association, United States
William is a medical doctor trained in psychiatry and epidemiology, with a Master in public health. He is research director of the Diagnostic and Statistical Manual DSM-5 Task Force of the American Psychiatric Association. The DSM-5 will be launched in May 2013.

 

June, 2012, Chicago, American Society of Clinical Oncology (ASCO) Annual Conference

Parallel session

Relationship between genetic markers and quality of life (QOL) in stage III colon cancer (CC) patients (pts) prior to adjuvant treatment (N0147).
Authors:  Jeff A. Sloan, Qian Shi, Adam Lee, Robert B. Diasio, Emily S. Pavey, Daniel J. Sargent, Richard M. Goldberg, Frank A. Sinicrope, Michelle R. Mahoney, Steven R. Alberts; Mayo Clinic, Rochester, MN; Mayo Clinic, Minneapolis, MN; Ohio State University Medical Center, Columbus, OH

 

October, 2011, Denver, International Society for Quality of Life Research (ISOQOL) Annual Conference

Plenary Session: Genetics and quality of life: How the interface can impact research and practice

There is emerging evidence for a genetic basis of patient-reported quality-of-life (QOL) outcomes that can be incorpo­rated into clinical research and practice.

Dr. Bartels, a behavioral geneticist, will present studies of twins that have indicated that heritability estimates for QOL-related domains such as mood and self-reported health, are compa­rable or even higher than that of most diseases. She will also provide key information on the genetic variance of subjective well being measures and on genes involved in happiness.

Dr. Goldberg, a medical oncologist, will present results of oncology clinical trials that included exploratory studies for identifying relationships between genetic variables and QOL at baseline. He will also describe the clinical implications of this work and how this has the potential to expand and im­prove the quality of health care delivery.

This session will present state of the science work in the evolv­ing investigation for relationships between biological markers and patient-reported outcomes.

Meike Bartels, PhD, Associate Professor, Biological Psychology, Free University Amsterdam
Meike is an Associate Professor at the Depart­ment of Biological Psychology of the VU University in Amsterdam and the Netherlands Twin Register. Her research focuses on the causes of individual differences in subjective wellbeing (including quality of life) and the overlap with psychopathology. With the use of large twin-family datasets she has been able to investigate the herita­bility of different measures of subjective wellbeing. Genotypic data enable her to search for the genomic regions of interest for subjective wellbeing.

Richard Goldberg, MD, Distinguished Professor of Gastrointestinal Oncology, Chief of Hematology/Oncology, and Associate Director for Clinical Research, University of North Carolina, Lineberger Comprehensive Cancer Care Center
Richard’s principal research in­terests include the evaluation of new agents for the treatment of colorectal cancer, inherited colorectal cancer syndromes, clinical trials methodology, and the role of meta-analysis in the decision making process for evidence based medicine. He has co-authored more than 200 publications including a number of practice changing Phase III studies and collaborations with laboratory based co-workers that have helped to advance the understanding of the biology of colorectal cancer.

October, 2010, London, International Society for Quality of Life Research (ISOQOL) Annual Conference

Symposium: Recent advances in the genetic underpinnings of quality of life from the GENEQOL consortium

Co-Chairs: Jeff Sloan, Health Sciences Research, Mayo Clinic, Rochester, MN; Ailko H. Zwinderman, Medical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands; Sarah M. Rausch, Health Outcomes and Behavior, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL. Presenter: Jeff Sloan, Health Sciences Research, Mayo Clinic, Rochester, MN

The purpose of this session is to provide updates of three different confirmatory studies that indicate the genetic pathways that were theorized by the GENEQOL consortium roughly one year ago have been successfully completed with positive results. This session will present each of the three studies turn indicating: 1) the importance of the inflammatory pathways for cytokines as a contributing factor to overall QOL and fatigue; 2) the importance of the COMT opium expression pathways for pain 3) the TYMSDPYD cell structural pathway for fatigue and overall QOL The implications of these findings for genetic research, the relationship of these findings to other biomarker laboratory-based variables, and the future plans for the consortium will be provided.

Presentations:

Genes selected for their relevance to pain are also associated with fatigue and dyspnea: Evidence of the European Pharmacogenetic Opioid Study
Ailko H. Zwinderman, Medical Epidemiology and Biostatistics, Mirjam A. Sprangers, Medical Psychology, Frank Baas, Neurogenetics, Cornelis J. Van Noorden, Cell Biology and Histology, Academic Medical Center, University of Amsterdam, Amsterdam, Netherlands, Lukas Radbruch, Palliative Medicine, University Clinic, Aachen, Germany, Andrew Davies, Palliative Medicine, Royal Marsden NHS Foundation Trust, Sutton, United Kingdom, Dick F. Swaab, -, Netherlands Institute for Neuroscience, Amsterdam, Netherlands, Jeff Sloan, Health Sciences Research, Mayo Clinic, Rochester, MN, Stein Kaasa, Intensive Care Medicine, Frank Skorpen, Laboratory Medicine, Pal Klepstad, Intensive Care Medicine, Norwegian University of Science and Technology, Trondheim, Norway.

A genetic link to QoL: The relationship between cytokine gene single nucleotide polymorphisms and symptom burden and quality of life in lung cancer survivors
Sarah M. Rausch, Health Outcomes and Behavior, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, Matthew M. Clark, Christi Patten, Psychiatry and Psychology, Jeff Sloan, Biostatistics, Ping Yang, Epidemiology, Mayo Clinic, Rochester, MN.

Expansion of the Wilson & Cleary theoretical model to incorporate genetic influences on quality of life
Jeff Sloan, Health Sciences Research, Mayo Clinic, Rochester, MN, Mirjam Sprangers, Psychology, Amsterdam Medical Center, Amsterdam, Netherlands

 

November, 2009, New Orleans, International Society for Quality of Life Research (ISOQOL) Annual Conference

Symposium: The genetic disposition of patient-reported quality-of-life outcomes

Co-Chairs: Jeff Sloan, Mayo Clinic, Rochester, MN, USA; Mirjam A. G. Sprangers, Academic Medical Center, University of Amsterdam, the Netherlands.

Presenters: Jeff Sloan; Mirjam A. G. Sprangers; Quiling Shi, University of Texas M.D. Anderson Cancer Center, Houston, US; Michele Halyard, Mayo Clinic, Scottsdale, AZ, USA; Amylou Dueck, Mayo Clinic, Scottsdale, AZ; Hein Raat, Erasmus University, Rotterdam, the Netherlands.

The field of patient-reported quality of life (QL) has never focused on that which is innate to the person. Research on twins has provided ample empirical evidence that, for example, self-rated health is, in part, heritable. Thus, there is a compelling need to reveal the genetic variables that play a role in QL. Clearly, this path is complex, considering the potential number of genes, gene interactions, and QL variables that may be involved. We have therefore established the international and interdisciplinary GENEQOL Consortium to provide the requisite foundation and research culture to stimulate the development of this field. This symposium aims to present the establishment of the GENEQOL Consortium, to provide a summary of its first results, and to highlight methodological challenges facing this novel line of research.

Paper 1 describes the establishment of the GENEQOL Consortium, which purports to translate and plan clinically relevant research to identify and investigate potential biological pathways, genes and genetic variants involved in QL. The subsequent papers describe the biological pathways and genetic variables involved in negative as well as positive affect (paper 2), pain (paper 3) and fatigue (paper 4). Paper 5 outlines the statistical challenges and paper 6 presents an ongoing genetic study into the QL of young children and their mothers. This symposium addresses a groundbreaking initiative to investigate the novel question about the genetic disposition of QL. Insight into the genetic versus environmental components of QL will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor QL, we will be able to better target specific support to enhance their QL.

Presentations:

The establishment of the GeneQoL Consortium to investigate the genetic disposition of patient-reported quality-of-life (QL) outcomes
Jeff Sloan, Mayo Clinic, Rochester, MN USA; Mirjam A. G. Sprangers, Academic Medical Center, University of Amsterdam, The Netherlands; on behalf of the GENEQOL Consortium

Biological pathways and genetic variables involved in negative and positive affect
Mirjam Sprangers, Academic Medical Center, University of Amsterdam, The Netherlands; Meike Bartels, VU University, Amsterdam, The Netherlands; Ruut Veenhoven, Erasmus University Rotterdam, The Netherlands; Frank Baas, Academic Medical Center, Amsterdam, The Netherlands; Dorret Boomsma, VU University, Amsterdam, The Netherlands; Nick Martin, University of Queensland, Brisbane, Australia; Benjamin Movsas, Henry Ford Health System, Detroit, MI, USA; Miriam Mosing, University of Queensland, Brisbane, Australia; Mary Ropka, Fox Chase Cancer Center, Cheltenham, USA; Gen Shinozaki, Mayo Clinic, Rochester, MN, USA

Biological pathways and genetic variables involved in pain
Quiling Shi, U.T.M.D. Anderson Cancer Center, Houston, TX, USA; Charles Cleeland, U.T.M.D. Anderson Cancer Center, Houston, TX, USA; Pal Klepstad, St. Olav University Hospital, Trondheim, Norway; Christine Miaskowski, UCSF School of Nursing, San Francisco, CA, USA; Nancy Pedersen, Karolinska Institutet, Stockholm, Sweden

Biologic and genetic mechanisms of cancer-related fatigue
Michele  Halyard, Mayo Clinic, Scottsdale, AZ, USA; Marlene  Frost, Rochester, MN, USA; Per Hall, Stockholm Sweden; Aeilko H. Zwinderman, Amsterdam, the Netherlands; Andrea Barsevick, Cheltenham, PA, USA.

Challenges in the statistical analysis of quality-of-life and genetic variables
Amylou C. Dueck, Ailko H. Zwinderman, Jeff A. Sloan

Candidate gene studies and genome wide association studies on health-related quality of life of mothers and young children; the generation R study
Hein Raat, Dept. of Public Health; Vincent Jaddoe, Generation R; Cornelia van Duijn, Dept. Epidemiology, Albert Hofman, Dept. Epidemiology, Andre Uitterlinden, Dept. of Internal Medicine, Erasmus MC – University Medical Center Rotterdam, The Netherlands; Jeanne M. Landgraf, HealthActCHQ, Boston, MA, USA

 

February 26, 2009, Mayo Clinic, Rochester, USA

Genetic disposition and patient-reported quality of life outcomes

For the full program, please click here
To summarize, the following presentations were given:
Advances in Genetics Research in Cancer Robert B. Diasio
Advances in Quality of Life Research Mirjam Sprangers
Advances in Phenotyping Quality of Life Jeff A. Sloan
Advances in Cell Biology Ron Van Noorden
Advances in Behavioral Genetics: Twin Data Nick Martin
Advances in Genetic Epidemiology Ping Yang
Advances in Genetic Biostatistics Koos Zwinderman
Advances in Behavioral Genetics: Personality Dorret Boomsma
Advances in Genetics in Clinical Practice: An Ocologist from Mayo Clinic Matthew P. Goetz
Advances in Behavioral Genetics: Life Style Nancy Pedersen
Advances in Neurogenetics Frank Baas
Advances in the Genetics of Pain Charles S. Cleeland