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Last updated: Monday, July 26, 2010 Measurement Resources on the Internet
Prepared by the Measurement and Methods Cores
from the
Academy Health
UCSF1 and the UCLA2 RCMAR Centers This list includes sources of measures for a variety of purposes and population subgroups. We welcome information about additional web links to measures; please contact Chris Becker. Inclusion of these web sites on this list does not constitute endorsement by the RCMAR Centers. Please review measures for their appropriateness for your research project and population. A B C D E F G H I J K L M N O P Q R S T U V W X Y Z 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. Academy Health - Health Outcomes Core Library Project www.nlm.nih.gov/nichsr/corelib/houtcomes.pdf The Health Outcomes Core Library Module Project consists of compilations of selected books, journals, Web sites, and bibliographic databases related to health outcomes. Produced by AcademyHealth at the request of the National Library of Medicine’s National Information Center on Health Services Research and Health Care Technology (NICHSR), the project focused on developing the core and desired sets of resources for health libraries. 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 Journal of Managed Care www.ajmc.com An independent, peer-reviewed, medical-scientific journal dedicated to health care outcomes research. 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. American Public Health Association, Health Disparities Database http://apha.org/programs/disparitiesdb/ Combines projects and interventions submitted by members since 2003. 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. Behavioral Risk Factor Surveillance System www.cdc.gov/brfss/questionnaires/index.htm The BRFSS questionnaire has three parts: 1) the core component, consisting of the fixed core, rotating core, and emerging core, 2) optional modules, and 3) state-added questions. Consumer Assessment of Health Plans Survey (CAHPS®) and Reporting Kit www.cahps.ahrq.gov The CAHPS® Survey and Reporting Kit 2002 (the Kit) contains everything that sponsors and vendors need to field a questionnaire, analyze the results, and produce a consumer-friendly report. 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. 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. Child Health Questionnaire www.thechq.com/index.htm The Child Health Questionnaires is a generic quality of life instrument that has been designed for use with children 5 years of age and older. The Clinical Decision Making Group at the MIT Laboratory for Computer Science groups.csail.mit.edu/medg/ 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. Cochrane Collaboration - Health Related QoL Methods Group www.cochrane-pro-mg.org/ 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 patient-related outcomes methods working group. Decision Analysis Society of INFORMS www.informs.org/Community/DAS The Society promotes the development and use of logical methods for the improvement of decision-making in public and private enterprise. Depression Screener www.rand.org/health/surveys/screener.html This self-administered depression screener was developed for RAND's Partners in Care study. The screener included the items for assessing major depressive and dysthymic disorders from the 12-month Composite International Diagnostic Interview (CIDI) and items assessing depression symptoms in the past month. Diabetes Measures med.umich.edu/mdrtc/profs/survey.html The Michigan Diabetes Research and Training Center (MDRTC) supports research, health professional training, patient education, and community outreach in diabetes and related endocrine and metabolic disorders. MDRTC has developed several survey instruments for diabetes patients and health professionals. Drug Information Association www.diahome.org Trade organization sponsors and annual meeting on quality of life assessment. Epilepsy Surgery Inventory-55 (ESI-55) www.rand.org/health/surveys/ESI-55.html Evaluación Clinica Y Económica de Intervenciones Sanitarias www.farmacoeconomia.com/ Spanish language site with pages on quality of life that include a list of instruments, databases, and bibliograpy. 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. FACIT Functional Assessment of Chronic Illness Therapy www.facit.org Functional Assessment of Chronic Illness Therapy Measurement System. U.S. Food and Drug Administration www.fda.gov Regulatory agency of the U.S. Many slide sets related to quality of life. Harry Guess Research Community http://harryguess.unc.edu/ This site (named in honor of the late Harry Guess MD PhD) is a virtual research community for pharmacopepidemiology, patient-reported outcomes, and pediatric therapeutics. It was set up with the hope that the site will become a repository of valid and freely available research tools and resources. Health and Psychosocial Instruments (HaPI) www.ovid.com/site/catalog/DataBase/866.jsp?top=2&mid=3&bottom=7&subsection=10 The Health and Psychosocial Instruments (HAPI) database provides easy access to information on over 120,000 instruments including questionnaires, interview schedules, checklists, index measures, coding schemes/manuals, rating scales, projective techniques, vignettes, scenarios, and tests. The instruments were culled from health fields, psychosocial sciences, organizational behavior, and library and information sciences. Dr. Evelyn Perloff at the University of Pittsburgh School of Nursing created HaPI. Health and Quality of Life Outcomes http://www.hqlo.com/home/ Journal with measurement articles. Health-related quality of life measures www.rand.org/health/surveys_tools/hcsus/index.htm HIV cost and services utilization study. 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 Technology Assessment International www.htai.org ISTAHC seeks to foster the application of high-quality and appropriate Health Technology Assessment in health care decision-making, by means of and interdisciplinary and international approach, encouraging the timely and effective dissemination of assessment information throughout the world, and supporting education and research in Health Technology Assessment. HIV-PARSE Baseline Questionnaire www.rand.org/health/surveys/MR342/MR342.html The HIV Patient Assessed Report of Status and Experience (HIV-PARSE) (Download PDF) is a self-administered patient survey instrument developed by RAND and the University of California at San Diego. It is designed to assess patient outcomes in clinical trials of therapies for treating HIV-infected patients. The survey instrument contains sections measuring symptoms, disability, utilization, and health status and functioning. The responses are assessed using a version of the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) measure that has been modified for HIV patients. Improving Chronic Illness Care Evaluation www.rand.org/health/ICICE/tools.html Data collection instruments designed to provide practical guidance to health care organizations seeking to improve care for patients with chronic disease. 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 www.healtheconomics.org/ihea IHEA 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 www.ipos-society.org The mission of this society is to promote the psychological, social, and physical well being of psycho-oncology patients 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 ISPOR 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.isqols.org 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. Kidney Disease Quality of Life
(KDQOL) www.rand.org/health/surveys_tools/managed/index.htm This survey is designed to capture key differences between managed and "un- managed" care as well as differences among managed care arrangements. It includes six domains predicted to have an impact on access, service utilization, costs and quality. The domains are: characteristics of the managed care plan, enrolled population, benefit design, payment and risk arrangements, composition of provider networks, and accountability. Data are collected at three levels: managed care organization, subcontractor, and network of service providers. MAPI Research Institute www.mapi-institute.com 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. MacArthur Research Network on Socioeconomic Status and Health www.macses.ucsf.edu Measures of socioeconomic status Medical Outcomes Study (MOS) measures of patient adherence www.rand.org/health/surveys/mos.patientadh.html The Medical Outcomes Study was a two-year study of patients with chronic conditions. As part of the study, the research team assessed how well patients adhered to treatment regimes. The measures of patient adherence (PDF) include two types of measures. A general measure assessed patients' adherence to treatment for heart disease, diabetes, and hypertension; a specific measure assessed patients' adherence to treatment recommendations for the tracer conditions studied in the MOS and also gathered information about how often the patient carried out the recommendations. Medical Outcomes Study (MOS) measures of quality of life www.rand.org/health/surveys_tools/mos/index.htm The Medical Outcomes Study was a two-year study of patients with chronic conditions. The 116-item core MOS measures of quality of life include physical, mental, and general health. Both the core survey instrument (PDF) and instructions for scoring it (PDF) are available. The instructions include references to many articles that describe the process by which the measures were developed and discuss their validity and reliability. The User's Manual for Medical Outcomes Study (MOS) Core Measures of Health-Related Quality of Life summarizes the MOS measures and presents psychometric results from the MOS. It is designed to be a companion to the book, Measuring Function and Well-Being: The Medical Outcomes Study Approach (see Stewart, Sherbourne, Hays, et al., 1992 in the references listed above). Medical Outcomes Study (MOS) sexual problems measures www.rand.org/health/surveys_tools/mos/mos_sexual.html The MOS sexual problems measures are part of the core MOS measures of quality of life. Medical Outcomes Study (MOS) Social Support Survey www.rand.org/health/surveys_tools/mos/mos_socialsupport.html This brief, self-administered social support survey was developed for patients in the Medical Outcomes Study, a two-year study of patients with chronic conditions. It is easy to administer to chronically ill patients, and the items are short, simple, and easy to understand. It may also be appropriate for use with other populations. Medical Outcomes Study 20-Item Short-Form Health Survey www.rand.org/health/surveys_tools/mos/mos_core_20item.html The 20-Item Short-Form Health Survey (SF-20) (PDF) was developed for the Medical Outcomes Study, a multi-year study of patients with chronic conditions. The resulting short-form survey instrument provides a solution to the problem faced by many investigators who must restrict survey length. The instrument was designed to reduce respondent burden while achieving minimum standards of precision for purposes of group comparisons involving multiple health dimensions. 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. Mental Health Inventory from the Medical Outcomes Study www.rand.org/health/surveys_tools/mos/mos_mentalhealth.html The 37 measures in the mental health inventory are part of the 116 core measures of function and wellbeing from the Medical Outcomes Study, a two-year study of patients with chronic conditions. Multidimensional Health Locus of Control (MHLC) Scales www.vanderbilt.edu/nursing/kwallston/mhlcscales.htm 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. MUSC Measurement Tools www.musc.edu/dfm/RCMAR/RCMARTools.html The Southern Carolina Cooperative for Healthy Aging in Minority Populations website with descriptions of Measurement Tools aimed at researchers in minority and aging studies. Nurse Peer Review Nursing Homes Outcomes Initative
On-Line Guide to Quality of
Life Assessment (OLGA) http://www.rand.org/health/surveys_tools/psq/index.htm The Patient Satisfaction Questionnaire (PSQ), consisting of 80 items, was originally developed by Ware and his colleagues (Ware, Snyder, and Wright, 1976). The PSQ-III is a 50-item version that taps global satisfaction with medical care as well as satisfaction with six aspects of care: technical quality, interpersonal manner, communication, financial aspects of care, time spent with doctor, and accessibility of care. The questionnaire takes 9-12 minutes to complete. Patient Satisfaction Questionnaire (PSQ-18) -Short Form http://www.rand.org/health/surveys_tools/psq/index.htm The PSQ-18 is a short form version that retains many characteristics of its full-length counterpart, the PSQ-III. The PSQ sub-scales show acceptable internal consistency reliability. Furthermore, corresponding PSQ-18 and PSQ-III subscales are substantially correlate with one another. The PSQ-18 may be appropriate for use in situations where the need for brevity precludes administration of the full-length PSQ-III. The PSQ-18 takes approximately 3-4 minutes to complete. Patient Satisfaction Survey www.rand.org/health/surveys_tools/pss_umga/index.htm This patient satisfaction questionnaire was used to assess satisfaction with care and health-related quality of life of patients of the Unified Medical Group Association. Pediatric Asthma Symptom Scale in English and Spanish www.rand.org/health/surveys_tools/ped_asthma/index.htm Pediatric asthma survey measures have not been adequately tested in non-English-speaking populations. The authors evaluated the reliability, validity, and language equivalency of an English and Spanish symptom scale to measure asthma control in children. Parents of 234 children seen in emergency rooms for asthma were asked to report on the frequency and severity of their children's asthma symptoms at the beginning and after the resolution of the exacerbation. An eight-item scale composed of reports of cough, wheezing, shortness of breath, asthma attacks, chest pain, night symptoms, and overall perceived severity had very good psychometric properties in both English and Spanish. The reliability of the scale ranged from 0.81 to 0.87 for both languages, exceeding the standards for group comparisons. Its ability to adequately measure individual change has not been established. There were no statistically significant differences in the reliability or construct validity of the summary symptom scale by language. The results of this evaluation indicate that the eight-item scale is a reliable and valid tool that can be used to measure control of asthma symptoms in Spanish-speaking populations of low literacy. 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. Pesticide Use During the Gulf War www.rand.org/health/surveys_tools/gulfwar.html This report documents the survey instrument used to access the extent of pesticide use during the Gulf War. RAND's analysis of the data collected through the survey is reported in Pesticide Use During the Gulf War: A Survey of Gulf War Veterans. Physician Peer Review to Measure and Improve Quality of Inpatient and Outpatient Clinical Care www.rand.org/health/surveys_tools/peer_review_physicians.html Using Physician Peer Review to Measure and Improve Quality of Inpatient and Outpatient Clinical Care RAND Health has developed tools to enable healthcare organizations to measure the quality of inpatient or outpatient clinical care practically and reliably. Peer review relies on quality judgments by expert professionals to evaluate quality of care based on review of the medical record. A structured implicit review is more reliable because the key aspects of care and data sources to be reviewed are specified in advance. 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. Quality Metric www.qualitymetric.com QualityMetric Incorporated develops and markets patient-provided information assessment systems, including the SF-36 health survey. Quality of Life Research www.kluweronline.com/issn/0962-9343/current Journal with measurement articles. Quality of life in epilepsy inventory-89 (QOLIE-89) www.rand.org/health/surveys_tools/qolie QOLIE-89 contains 17 multi-item measures of overall quality of life, emotional well-being, role limitations due to emotional problems, social support, social isolation, energy/fatigue, worry about seizure, medication effects, health discouragement, work/driving/social function, attention/concentration, language, memory, physical function, pain, role limitations due to physical problems, and health perceptions. Quality of life in epilepsy inventory www.rand.org/health/surveys_tools/qolie/ This is a short form version of the Quality of Life in Epilepsy Inventory-89. RAND Health www.rand.org/health 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. RAND Health Surveys and Tools http://www.rand.org/health/surveys_tools.html RAND 36-Item Health Survey 1.0 www.rand.org/health/surveys_tools/mos/mos_core_36item.html As part of the Medical Outcomes Study--a multi-year, multi-site study to explain variations in patient outcomes--RAND developed the 36-Item Short Form Health Survey (SF-36). SF-36 is a set of generic, coherent, and easily administered quality-of-life measures. These measures rely upon patient self-reporting and are now widely utilized by managed care organizations and by Medicare for routine monitoring and assessment of care outcomes in adult patients. RAND-36 - Arabic Version www.rand.org/health/surveys_tools/mos/mos_core_36item.html Arabic version of the RAND 36-Item Health Survey 1.0 The Research Methods Knowledge Base 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. 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. SF-36 Web Site www.sf-36.org/ "A community for measuring health outcomes using SF tools" Seattle Quality of Life Group http://depts.washington.edu/yqol/index.htm "The Seattle Quality of Life Group works to improve the health and quality of life of children, youth, and adults" Sleep Scale www.rand.org/health/surveys_tools/mos/mos_sleep.html The Sleep Scale was developed for the Medical Outcomes Study (MOS), a two-year study of patients with chronic conditions. Social and Physical Environment Notebook www.macses.ucsf.edu/research/socialenviron/ Review of issues on measuring Social and Physical Environment 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. Sociodemographic Questionnaire www.macses.ucsf.edu/research/socialenviron/sociodemographic.php The MacArthur Network on SES and Health has developed a sociodemographic questionnaire which is currently being used in a number of network sponsored projects. The instrument begins with subjective social status questions developed by the network, the remaining questions assess educational attainment, occupational status, income and assets. United Biosource Corporation www.unitedbiosource.com/about/ The UC San Diego Health Outcomes Assessment Program outcomes.ucsd.edu 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. VFQ-25 VSQ-9 (Visit-Specific Satisfaction
Instrument) Vulnerable Elders Survey (VES-13)
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 worlddatabaseofhappiness.eur.nl The World Database of Happiness is an ongoing register of scientific research on subjective appreciation of life.
1Center for Aging in Diverse Communities (CADC), University of California San Francisco 2Center for Health Improvement for Minority Elders (CHIME), University of California Los Angeles |
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