Links
Organizations & Non-profit
Research Centers
American Psychosocial Oncology Society (APOS)
http://www.apos-society.org
The American Psychosocial Oncology Society (APOS), formerly the American
Society for Psychosocial and Behavioral Oncology/AIDS (ASPBOA), was formed
as a Chapter of IPOS in 1984. In 2002, APOS was incorporated as a national,
multidisciplinary organization and approved as a nonprofit Society dedicated
to promoting the psychological, social, behavioral, spiritual and physical
well being of patients with cancer and allied diseases and their families
at all stages of disease and survivorship, through clinical care, education,
research and advocacy. Current APOS initiatives include the support of
a toll free telephone helpline and interactive website database of individuals
providing support for cancer patients and their caregivers; presentation
of an online curriculum with 15 modules in psychosocial oncology; development
of a pocket handbook of the essentials of psychosocial oncology; psychosocial
training for oncology nurses; an Annual meeting; and much more as time
and funding permits. APOS had 277 paid members in 2003. For more information,
contact APOS headquarters:
Ms. Elliott Graham
Executive Director
American Psychosocial Oncology Society
2365 Hunters Way
Charlottesville, VA 22911
Telephone: 434.293.5350
Facsimile: 434.977.0899
e-mail: egraham@apos-society.org
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
American Cancer Society
www.cancer.org
The American Cancer Society is the nationwide community-based voluntary
health organization dedicated to eliminating cancer as a major health
problem by preventing
cancer, saving lives, and diminishing suffering from cancer, through research,
education, advocacy, and service.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
American Medical Informatics Association
www.amia.org
AMIA is dedicated to the development and application of medical informatics
in the support of patient care, teaching, research, and health care
administration.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
AcademyHealth
www.academyhealth.org
Its primary mission is to increase the contribution that health services
research makes to improving the health care system and health status
of Americans.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
American Society of Clinical Oncology
www.asco.org
As a non-profit organization, ASCO is dedicated to achieving its
charitable mission outlined by the organization’s founders
in 1964. ASCO strongly supports all types of cancer research,
but in particular, patient-oriented
clinical research.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
American Thoracic Society
www.thoracic.org
The American Thoracic Society is an independently incorporated,
international, educational and scientific society which
focuses on respiratory and
critical care medicine. The
Society's members help prevent and fight respiratory disease
around the globe through research, education, patient care,
and advocacy.
The Society's
long-range goal is to
decrease morbidity and mortality from respiratory disorders
and life-threatening acute illnesses.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Belgian Institute for Health Economics (BIGE-IBES)
www.ibes-bige.be
The Belgian Institute for Health Economics site aims at offering
every quarter some new general data or specific information
on health economics,
with focus on
pharmaco-economics, mainly for Belgium.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Center for International Rehabilitation Research Information and Exchange
www.cirrie.buffalo.edu
CIRRIE's mission is to facilitate the sharing of information
and expertise in rehabilitation research between
the U.S. and other
countries.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Cochrane Collaboration - Health Related QoL Methods Group
www.cochrane.org/cochrane/mwgfield.htm#HRQL
The overall aim of the group is preparing, maintaining
and promoting the accessibility of systematic
reviews of the
effects of health
care interventions.
The link gives contact
information for the health related quality
of life working group.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Decision Analysis Society of INFORMS
faculty.fuqua.duke.edu/daweb
The Society promotes the development and use
of logical methods for the improvement
of decision-making in
public and private
enterprise.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Drug Information Association
www.diahome.org
Trade organization sponsors and annual meeting
on quality of life assessment.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
U.S.
Food and Drug Administration
www.fda.gov
Regulatory agency of the U.S. Many
slide sets related to quality of life,
such as "Defining
Quality of Life for Oncologic Drug Approval," Carol
M. Moinpour, PhD. 10 February 2000.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Health
Measurement Research Group
http://www.healthmeasurement.org/
Health care professionals and policy
makers have set high goals for improving the health and well-being
of the public in the coming years. Understanding
how well these health goals are met requires having measures of
health-related quality of life that can be used across different
settings and different
groups of people. The goals of the research group are to evaluate
the use of widely used health measures, understand the strengths
and limitations
of each, and create a versatile "toolbox" of summary
measures of health that can be used to track changes in the public’s
health over time. The Health Measurement Research Group represents
an ongoing
collaborative effort among health services researchers at UCLA,
the University of Wisconsin, and the University of California,
San Diego.
At the end of
our studies, public use data sets will be made available to other
health service researchers interested in pursuing research on health-related
quality of life issues.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Clinical Epidemiology Network
www.inclentrust.org
INCLEN is dedicated to improving the health of the people by promoting
clinical practice based on the best evidence of effectiveness
and the efficient use of resources.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Health Economics Association
healtheconomics.org/cgi-bin/WebObjects/ihea
HEA was formed to increase communication among health economists,
foster a higher standard of debate in the application
of economics to health
and health care systems, and assist
young researchers at the start of their careers.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Medical Informatics Association
www.imia.org
Aims to promote informatics in health care and biomedical
research, advance international cooperation, stimulate
research, development
and routine
application, further the
dissemination and exchange of information, and encourage
education and responsible behaviour.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Psycho-Oncology Society
The American Society of Psychosocial and Behavioral
Oncology/AIDS
www.ipos-aspboa.org
The mission of these societies is to promote the
psychological, social, and physical well being
of patients with cancer,
AIDS and allied
diseases and their families at all stages
of disease and survivorship through clinical
care, education, research, and advocacy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
www.ispor.org
is an international non-profit organization formed
in 1995 to promote the practice and science
of pharmacoeconomics and health outcomes
assessment.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Society for Pharmacoepidemiology
www.pharmacoepi.org
The International Society for Pharmacoepidemiology
(ISPE) is a non-profit international
professional membership organization
dedicated to promoting
pharmacoepidemiology, the
science which applies epidemiologic approaches
to studying the use, effectiveness, value
and safety of pharmaceuticals.
ISPE is firmly
committed to providing
an unbiased
scientific forum to the views of all
parties with interests in drug development, drug
delivery, drug
use, drug
costs, and
drug effects.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
International Society for Quality of Life Studies
www.cob.vt.edu/market/isqols
The goals of the society are to stimulate
interdisciplinary research in quality-of-life
(QOL) studies within
the managerial (policy),
behavioral, social, medical, and
environmental sciences; To provide
an organization which all academic, business, nonprofit,
and government researchers
who
are interested
in QOL
studies can coordinate
their efforts to advance the knowledge
base and to create positive social
change, and;
To encourage
closer
cooperation
among scholars
engaged in
QOL research to develop better
theory, methods, measures, and intervention
programs.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Health Technology
Assessment international
www.htai.org
The International Society for Technology
Assessment in Health Care (ISTAHC)
has metamorphosed into
Health Technology
Assessment
international (HTAi). HTAi's mission
is 'to support the development,
communication,
understanding
and use of
HTA globally as a scientifically
based means
of promoting
the introduction of effective innovation
and
the effective use of resources
in health care'.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
MAPI Research Institute
http://www.mapi-research.fr/
MAPI Research Institute is a non-profit
international health outcomes
organisation established to
support and promote
research in
the field of Health-Related
Quality of Life (HRQoL).
The Institute has particular expertise in cultural
adaptation and
linguistic
validation of questionnaires,
helpful instrument pages, a widely distributed
newsletter and
useful links.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Medical Outcomes Trust
www.outcomes-trust.org
The Medical Outcomes Trust is a
not for profit organization
dedicated to
improving
health
and health care by
promoting the science of
outcomes measurement,
and the development,
evaluation and distribution
of standardized, high quality
instruments that measure health
and the outcomes
of
medical care.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Microsoft Decision Theory and Adaptive Systems Group
www.research.microsoft.com/dtas
This group developed the "paper clip" character
in Windows 95
that uses Bayesian reasoning to diagnose
faults
and to guess what
kind of help
you need. The
group is investigating the use
of probability and
utility theory
to enhance
computer applications
and platforms.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The
MIT LCS Clinical
Decision Making
Group
www.medg.lcs.mit.edu
The Clinical
Decision
Making Group at
the MIT Laboratory
for Computer
Science is
a research
group dedicated
to exploring
and furthering
the application
of technology
and
artificial
intelligence
to clinical
situations.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Multinational Association Of Supportive Care in Cancer
www.mascc.org
The Multinational
Association
of Supportive
Care
in Cancer
(MASCC) is a fully
private,
non-profit-oriented professional
and research-oriented
association
of physicians,
nurses
and other
health-care professionals,
aimed at
providing the
most recent
scientific
and social
information
on
all aspects
of cancer
care world
wide. This
includes
physical and psychosocial
symptoms
and side
effects
across the entire
continuum
of
the cancer
experience
including
the enhancement
of rehabilitation
and
survivorship.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quality
Metric
www.qmetric.com
QualityMetric Incorporated develops and markets patient-provided information
assessment systems, including the SF-36 health survey.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
RAND Health
www.rand.org/health_area
A non profit institution that aims to improve health policy and decision
making through research and analysis. Survey section includes instruments
and scoring for several
important instruments.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Rod O’Connor & Associates
www.rodoconnorassoc.com
A Sydney based consulting company specialising in developing measures
and methods to aid health care decision making and improve health service
quality.
Posting on the site
include an 80 page review of issues in measuring health-related quality
of life.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Society of General Internal Medicine
www.sgim.org
An international organization of physicians and others who combine
teaching, research, and patient care in general internal medicine,
in academic
and related settings such as
university hospitals, government agencies, and community health facilities.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Society for Medical Decision Making
www.smdm.org
The Society for Medical Decision Making is dedicated to promoting
rational and systematic approaches to decision making that will
improve the
health and clinical care of
individuals and assist health policy formation.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The UC San Diego
Health Outcomes Assessment Program
www.medicine.ucsd.edu/fpm/hoap
A multidisciplinary program with the goal of improving health
outcomes assessment and quality of life. Instruments include
the Quality
of Well-being Scale (QWB).
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
University of Michigan Decision Consortium
www.umich.edu/~psycdept/decision-consortium
UM's Decision Consortium is a University-wide distributed center
for decision scholarship.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Web-Based Interactive Decision Support
www.stanford.edu/group/cardport
The Cardiac Arrhythmia and Risk of Death Patient Outcomes Research
Team (CARD PORT) modeling group homepage allows the user
to perform interactive
analyses on the underlying
g model.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
World Database of Happiness
www.eur.nl/fsw/research/happiness
The World Database of Happiness is an ongoing register of
scientific research on subjective appreciation of life.
Journals
and Publications American Journal of Managed Care
www.ajmc.com
An independent, peer-reviewed, medical-scientific journal dedicated to health
care outcomes research.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Expert
Review of Pharmacoeconomics & Outcomes Research
www.future-drugs.com
Published bimonthly by Future Drugs, this ground-breaking journal provides commentary
and analysis on the growing relationship between economic factors and clinical
prescribing decisions, providing a practical background to informed prescribing
decisions and allocation of healthcare resources.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Healthy
People 2010
www.health.gov/healthypeople
Healthy People 2010 is the prevention agenda for the U.S. Healthy People 2010
challenges individuals, communities, and professionals to take specific steps
to ensure that good health, as well as long life, are enjoyed by all.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Health and
Quality of Life Outcomes
www.hqlo.com/home
An online BioMed Central journal on health-related quality of life.
Measures and
Methods
American Thoracic Society Quality of Life Resource
www.atsqol.org
A web site devoted to patient-oriented quality of life (QOL) measures that
are useful in the study and management of respiratory disease.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CDC Healthy Days
www.cdc.gov/hrqol
Provides information on how the CDC measures population health-related quality
of life, how the summary index of unhealthy days is calculated, the Health-Related
Quality-of-Life Measure and related information.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Child Health Questionnaire
www.thechq.com/index.html
is a generic quality of life instrument that has been designed for
use with children 5 years of age and older.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Evaluación Clinica Y Economica de Medicamentos
www.www.farmacoeconomia.com/default.htm
Spanish language site with pages on quality of life that include
a list of instruments, databases, and bibliograpy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
FACIT Functional Assessment of Chronic Illness Therapy
www.facit.org
Functional Assessment of Chronic Illness Therapy Measurement System.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PedsQL
www.pedsql.org
The PedsQL 4.0 Measurement Model is a modular approach to measuring
health-related quality of life (HRQOL) in healthy children
and adolescents and those with acute
and chronic health conditions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
QOLID
www.qolid.org
QOLID is a new database that combines information from Marcello Tamburini's
existing QLMed and the Resources Center of Mapi Research Institute. QOLID lists
1,000 patient reported outcome questionnaires, with detailed information on >300.
The site has two sections: The first is unrestricted and includes the objective
of development, name of the author, pathology, type of instrument, mode of
administration, population, original language and the list of available translations.
The second section requires a subscription and includes references, copyright,
detailed contact information as well as copies of over 170 original questionnaires,
100 translations and over 50 user manuals.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Researcher's Guide to the Choice of Instruments for Quality of Life Assessment
in Medicine
www.qlmed.org
QLMed is collaborating in the development of the Quality of Life Instruments
Database (QOLID) which will be realized by the MAPI Research Institute.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Research Methods Knowledge Base
http://www.socialresearchmethods.net/kb/
Authored by William Trochim, a comprehensive web-based textbook that
addresses all of the topics in a typical introductory undergraduate
or graduate course
in social research methods. Includes definitions of concepts related to
measurement.
Annotated Bibliography of Favorite and Classic Articles
in Quality of Life Research
Click here for an annotated bibliography of classic
and personal "favorite”
articles related to quality of life research. All were nominated by someone
other than the authors. As one contributor commented, "I still find
it difficult to come up with a favorite article (assuming one can't count
one's own!)”
As you can see, the topics vary broadly. What you see below is the beginning of what may
become a very useful resource. Please send additional nominations to Albert Wu at
awu@jhsph.edu.
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Classified Advertising
|
Posted 05/07/08
Call for Applications
The PhRMA Foundation offers Fellowships and Grants
in Health Outcomes Research
Click Here for detail
Posted 03/13/08
TRAINING RESEARCH POSITION IN QOL AND SYMPTOM MANAGEMENT IN CANCER
Training position available: As part of a long-standing collaboration between the Quality of Life Department at the EORTC in Brussels Belgium and the Department of Symptom Research at the MD Anderson Cancer Center in Houston Texas, a joint training program is being developed. This program may appeal to post doctoral fellows or junior faculty persons interested in research in symptoms and quality of life as reflected in patient reported outcomes. The program would include time spent at both the Brussels and Houston sites. The program would be tailored to the specific skills and interests of the applicant, as well as the needs of current joint programs between the two groups. For more information about this program please e-mail Dr. Andrew Bottomley of the EORTC (andrew.bottomley@eortc.be) or Dr. Charles Cleeland of the symptom research department at M.D. Anderson (ccleeland@mdanderson.org)
Posted 06/10/08
For more than 130 years, Eli Lilly and Company has been dedicated to meeting the health care needs of people in the United States and around the world. We address these needs primarily by developing innovative medicines—investing a higher percentage of our sales in research and development than any other major pharmaceutical company. If you are interested in being considered for employment with a “Best in Class” Pharmaceutical company, please review the following opportunity:
Health Outcomes Research Scientist
The purpose of the Global Health Outcomes Scientist position is to provide scientific and technical expertise to ensure that the health outcomes research conducted provides the necessary and needed information that informs the development of compounds in program and product phase. The Scientist oversees and ensures health economics/outcomes research strategies and programs to support Pricing, Reimbursement and Access activities for Lilly products. The Scientist demonstrates and applies in-depth knowledge, understanding, and evaluation of clinical, economic, and/or patient reported outcomes methodologies. The Scientist effectively communicates complex concepts to internal and external business partners, along with scientific communities, in support of health outcomes research. Moreover, the Scientist provides technical and scientific leadership to influence cross-functional initiatives.
KEY OBJECTIVES/DELIVERABLES:
- Environmental Awareness: Establishes and maintains a broad network of contacts within the health care sector, pharmaceutical industry and academia; Maintains awareness of current health economics/outcomes methodologies and applications; Anticipates and evaluates future market needs and trends within specified healthcare environments; Demonstrates in-depth knowledge and understanding of economic evaluation methodologies and provides accurate interpretations; Demonstrates understanding of the cross-functional nature of drug development and post-marketing support to inform product-specific health outcomes strategy; Influences the internal and external environmental factors that impact health outcomes
- Strategy: Oversees and ensures health economics/outcomes research strategies and programs to influence/support a value based price to achieve access for Lilly products; Adapts and utilizes information to maximize interactions with internal and external customers; Persuasive in providing direction for complex health economics/outcomes solutions; Formulates or significantly contributes to health economics/outcomes strategies for projects; Partner with other functions outside of health outcomes (e.g. market planning, medical, regulatory, statistics, market research, strategic pricing, etc.) to deliver collaborative work products (e.g., clinical protocols, label language, statistical analysis plan, etc.)
- Study Development: Develops specific US Health Outcomes research programs for diabetes compounds; Ensures quality standards, and performance standards for research projects are realistically set and attained; Applies and seeks technical expertise to conduct scientific research in the health outcomes field; Ensures research is designed within the scope of the defined clinical plan and is developed to influence and optimize pricing, reimbursement, and access; Solves difficult health economics/outcomes issues associated with registration, pricing, reimbursement and access initiatives through appropriate application of research methods; Demonstrates strong ability to identify, use and implement data for health outcomes research; Defines and shapes research with key partners and vendors to efficiently produce high quality research results
- Project Management: Ensures health outcomes program or product team budgets are realistically set and attained; Ensures research is conducted within the scope of product coverage to influence and optimize pricing, reimbursement, and access; Effectively communicates status of projects to management and key business partners to keep them informed of project process, budget implications, etc.; Manages delivery and prioritization of research with key partners and vendors to efficiently produce high quality research results
- Information Dissemination: Effectively communicates in a credible manner health outcomes information to internal and external business partners, scientific communities, and customers in support of Pricing, Reimbursement and Access activities; Organizes, prepares, and conducts meetings with key internal and external decision makers; Ensures alignment with cross-functional teams; Speaks knowledgably and authoritatively across therapeutic areas in regards to HO research considerations and their commercial impact; Provides health economics/outcomes assessments and recommendations of compounds to management and business units; Shares experience and learning with associates and peers, locally and internationally; Develops, prepares, co-ordinates and presents scientific communications
MINIMUM REQUIREMENTS:
- A Masters degree in a field relevant to Health Outcomes
- Significant previous training and experience in designing and conducting research and disseminating the results in the areas of health economics, health outcomes, disease management, and/or population health
ADDITIONAL SKILLS/PREFERENCES:
- International experience
- Clinical background
- Technical and analytic capabilities in the areas of economic modeling, economic evaluation, cost-effectiveness evaluation, burden of disease, epidemiology, statistics, health care policy etc.
- The ability to influence individuals
- Strong project management skills
- Strong communication and interpersonal skills and the ability to work successfully in a team/cross-functional environment
- The ability to think and act globally with a customer focus and a solution orientation
Lilly credits its exceptional employees for its successes, and knows the key to ongoing achievement lies in attracting and retaining the best people. A company rich in heritage, Lilly employs individuals, conducts research and markets products worldwide. By providing for the unmet needs of our customers through a continuous stream of innovation, we will outgrow all competitors.
Lilly earns consistent and wide recognition for creating an exceptional work environment:
- Business Week magazine 50 Best Places To Launch A Career™
- FORTUNE America’s Most Admired Companies™
- FORTUNE 50 Best Companies for Minorities™
- Working Mother 100 Best Companies for Working Mothers™
- Industry Week magazine 100 Best-Managed Companies™
- Business Ethics magazine 100 Best Corporate Citizens™
- Science magazine Best Companies for Scientists™
ELI LILLY AND COMPANY IS AN EQUAL OPPORTUNITY EMPLOYER
To apply, please click on the following link
OR visit www.lilly.com and reference Job ID 50315186
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i3 Innovus
Sr. Researcher, Late Phase – Prospective Observational and HEOR
Posted 03/19/08
i3 Innovus is a leading provider of health economics and outcomes research and market informatics solutions to help clients realize the full potential of their brands. As an international organization that counts among its clients most of the top 20 biopharmaceutical companies in the world, i3 Innovus has a world-class reputation in observational, prospective research and patient reported outcomes and leads the globe in providing research solutions to support market access and reimbursement of health care products.
The Sr. Researcher maintains Project Director responsibilities for multiple projects, provides scientific oversight and quality assurance of late phase studies (e.g. health economics, outcomes research, registries, and interventional studies) mentors and trains new Project Managers and provides administrative management for Project Managers. Participates in business development activities as required.
Please send your resume to Mike Welsh at Michael.welsh@i3research.com @ reference the Sr. Researcher opening.
Diversity creates a healthier atmosphere: equal opportunity employer M/F/D/V.
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ISOQOL
Member Publications
Quality of Life, Second Edition
The Assessment, Analysis and Interpretation of Patient-reported Outcomes
March 2007 – Peter Fayers and David Machin
This book presents all essential information on Quality of Life Research in one comprehensive volume. The new edition accommodates significant methodological developments, and includes chapters on computer adaptive testing and item banking, choosing an instrument, systematic reviews and meta analysis. It covers the design of instruments, the practical aspects of implementing assessment, the analyses of the data, and the interpretation of the results.
“This book is highly recommended to clinicians who are actively involved in the planning, analysis and publication of QoL research.” Clinical Oncology
To receive a discount on the purchase of this publication, members should visit the Members Only section.
Assessing
Quality of Life in Clinical Trials, 2nd Edition
May
2004 - Peter Fayers and Ron Hays
This highly acclaimed book, edited by Peter Fayers and Ron
Hays, explores the current state of the art in the field and
illustrates the benefits and potential of health-related quality
of life assessment in clinical trials. It covers a wide range
of analytical issues, emphasizing new and innovative approaches
that are of practical and clinical importance.
“This
book is clearly written, resource-rich, and eloquently blends
both traditional and innovative approaches to measuring HRQoL
in clinical trials.” Quality of Life Research
“This
book represents a comprehensive overview of the field with contributions
from 31 authors, in a collection of 24 chapters.
The objective of this book is to provide a thorough review of the
current state of the art methodology. The objective is whole-heartedly
achieved through its six sections.” Journal of Biopharmaceutical
Statistics
To receive a discount on the purchase of this publication, members
should visit the Members Only section.
NOW
AVAILABLE!
Advancing Health Outcome Research Methods and Clinical Applications
ISOQOL is pleased to announce that the book, Advancing Health Outcome
Research Methods and Clinical Applications edited by William Lenderking
and Dennis Revicki, has been published. The book is based on invited
presentations during the June 2004 ISOQOL meeting held in Boston.
This book includes a collection of chapters which cover a wide range
of conceptual and theoretical, methodological, measurement, and statistical
topics, and focuses on innovative and sometimes unfamiliar areas
of research that might contribute to advancing health outcomes assessment.
It is hoped that health outcomes researchers, students, clinical
researchers, those involved in drug development, and others interested
in patient-reported outcomes and health-related quality-of-life outcomes
will find much that is intriguing and stimulating within the book.
Click here to view the Table of Contents.
If you would like to order a copy, click
here for
a copy of the Order Form.
Measuring
and Valuing Health Benefits for Economic Evaluation
Special offer for ISOQOL Members
This is the first comprehensive textbook concerning the measurement
and valuation of health benefits for economic evaluation.
The book addresses the key questions in the measurement and valuation
of health, including: the definition of health, the techniques of
valuation, who should provide the values, techniques for modelling
health state values, the appropriateness of tools in children and
vulnerable groups, cross cultural issues, and the problem of choosing
the right instrument. The book concludes with a discussion of the
way forward in light of the substantial methodological differences,
the role of normative judgements, and where further research is most
likely to take this fascinating component of health economics.
ISOQOL members are entitled to a 20% discount on this book - order
your copy today! Please click
here.
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QOL Curriculum Outline
This is a list of topics that are recommended for consideration when planning an educational program or course on QOL related issues. ISOQOL recommends that you take into consideration the purpose of the offering and the audience/ students when devision the content for such an offereing.
Topics for Organizing Quality of Life Educational Materials
Marcia Grant, RN, DNS and the Education Committee of ISOQOL
June, 2005
- Quality of life definitions, theory and conceptual issues
- Theories and Conceptual Models to Guide research
- Related Concepts.
- Utility Measures
- Functional Status
- Patient Reported Outcomes
- Quality of Life in Children
- Quality of Life in Adults
- Quality of Life in Special Populations ( Elderly, co-morbidities, disabled, etc.)
- Research Issues in QOL
- Methods for conducting QOL research
- Research approaches - qualitative and quantitative
- Cognitive aspects of survey methodology
- Practical aspects of implementing research
- Practical issues related to implementation of research
Clinical Trials
Descriptive Research
Survey Research
- QOL Measurement Issues
- Where to find specific measures
- How to select a scale
- Generic versus disease specific scale
- Scales for adults
- Scales for families
- Scales for children and adolescents
- Economic/utility measurements
- Functional measures
- Item response theory
- Cross cultural
adaptation/ translation and validation
- Scoring and Interpretation Issues
- Intent to treat analysis
- Missing Data
- Response Shift
- Norm reference
- Clinical versus Statistical Significance
- Quality of life issues in relation to specific populations
- Cancer
- Geriatrics
- Cardiovascular Disorders
- Respiratory Disease
- Neurologic Illness
- Mental Illness
- Gastrointestinal Disease
- COPD
- Diabetes Mellitus
- Stem Cell/Bone Marrow Transplant
- Orthopedics
- Eye Diseases
- AIDS
- Radiation Therapy
- Genetics
- Learning Resources for QOL education
- Journals
- Books
- Computerized bibliographic systems
- Websites
- Quality of life and economic issues (use of health care resources)
- Relation of QOL to Health Care Policy
- Ethical and medical
basis of health care rationing
- Using QOL Assessment in clinical practice
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Disclaimer: Throughout the website, ISOQOL provides
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