Links To Other QoL instruments and Websites

The Australian Health Outcomes Collaboration (AHOC) is part of the Centre for Health Service Development at the University of Wollongong but is located with the Centre for Advances in Epidemiology and Information Technology at The Canberra Hospital. Its functions include dissemination of information about health outcomes research, maintaining an active network of collaborators in health outcomes research, maintaining a database of health outcomes projects, literature and instruments, facilitating health outcomes research throughout Australia, providing advice on the selection of measures for health outcomes assessment, providing health outcomes education and training, organizing national and international conferences and seminars and distributing measures/instruments used in health outcomes assessment.

The mission of the Australian Centre for Quality of Life (ACQoL) at Deakin University is to facilitate research into quality of life, to serve as a resource for both researchers and students, to gather knowledge and expertise related to both theoretical and applied areas, to facilitate research links with industry, government and the community. Quality of life is emerging as a central construct within many disciplines, such as those comprising the social sciences, economics, and medicine. Its attractions, in part, is that it offers an alternative to some traditional disciplinary views about how to measure success. First, it directs attention onto the positive aspects of people's lives, thus running counter to the deficit orientation of these disciplines. Second, it extends the traditional objective measures of health, wealth, and social functioning to include subjective perceptions of well-being. The following generic definition of Quality of Life has been adopted by the Centre. "Quality of life is both objective and subjective. Each of these two axes comprises several domains which, together, define the total construct. Objective domains are measured through culturally relevant indices of objective well-being. Subjective domains are measured through questions of satisfaction."

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.

The Health Utilities Index (HUI) is a generic, preference-scored, comprehensive system for measuring health status, health-related quality of life, and producing utility scores. The website contains information on the HUI, and on the Health Utilities Group (HUG), which focuses on preference-based measures of health-related quality of life for describing treatment process and outcomes in clinical studies, for population health studies, and economic evaluations of health care services.  The Health Utilities Index Mark 3 (HUI3) is a prominent measure of health-related quality of life (HRQL) widely used in population health surveys, clinical studies and cost-utility analyses. HUI3 includes 8 attributes (vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain), with 5 or 6 levels for each attribute. HUI3 has been used to assess health status in a number of chronic conditions.

The EuroQoL-5D (EQ-5D) is a standardised instrument for use as a measure of health outcome. Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a single index value for health status that can be used in the clinical and economic evaluation of health care as well as population health surveys. The EuroQol website contains information about the EuroQol Group, membership and research activities, details of EQ-5D development and current status.

Original Version Authors: John E. Ware The SF-36® Health Survey is a 36-item instrument for measuring health status and outcomes from the patient's point of view. Designed for use in surveys of general and specific populations, health policy evaluations, and clinical practice and research, the survey can be self administered by people 14 years of age or older, or administered by trained interviewers either in person or by telephone. The SF-36® Health Survey measures the following eight health concepts, which are relevant across age, disease and treatment groups: physical functioning, role limitations due to physical health problems, bodily pain, general health, vitality (energy/fatigue), social functioning, role limitations due to emotional problems and mental health (psychological distress and psychological well being). Both standard (4-week) and acute (1-week) recall versions are available. The surveys standardized scoring system yields a profile of eight health scores and two summary measures and a self-evaluated change in health status. Whilst such scores provide an excellent means for judging the effectiveness of health care interventions, they have only a limited application in economic evaluation because they are not based on preferences. The Medical Outcomes Study (MOS) Short Form (SF-36) is designed to satisfy minimum psychometric standards necessary for group comparisons involving generic health concepts, which are not specific to any age, disease, or treatment group. The website contains information on registering for and using the SF-36. The Medical Outcomes Trust (MOT) and QualityMetric Incorporated have merged their licensing and user registration programs, with the objectives of simplifying licensing and user registration and better meeting the needs of the many new academic, commercial, and other licensees.

The SF-6D is a classification for describing health derived from a selection of SF-36 items. It is composed of six multi-level dimensions. Any patient who completes the SF-36 or the SF-12 can be uniquely classified according to the SF-6D. The SF-6D describes 18,000 health states in all. The SF-6D comes with a set of preference weights obtained from a sample of the general population using the recognised valuation technique of standard gamble. The instrument provides a means for using the SF-36 and SF-12 in economic evaluation by estimating a preference-based single index measure for health from these data using general population values. It allows the analyst to obtain quality adjusted life years (QALYs) from the SF-36 or SF-12 for use in cost utility analysis.

the 15D is a 15 dimensional instrument designed and developed by Harry Sintonen in Finland. This pioneering instrument, developed in the early 1980s remains one of the most sensitive of the instruments currently available. It is scaled using a rating scale and dimensions are combined with an additive model. The 15D is a generic, comprehensive (15-dimensional), self-administered instrument for measuring HRQoL among adults (age 16+ years). It combines the advantages of a profile and a preference-based, single index measure. A set of utility or preference weights is used to generate the 15D score (single index number) on a 0-1 scale. In most of the important properties the 15D compares favourably with other preference-based generic instruments. Based on the 15D, a version has also been developed for adolescents aged 12-15 years (16D) and for children aged 8-11 (17D).

The World Health Organization Quality of Life (WHOQOL) project was initiated in 1991. The aim was to develop an international cross-culturally comparable quality of life assessment instrument. It assesses the individual's perceptions in the context of their culture and value systems, and their personal goals, standards and concerns. The WHOQOL instruments were developed collaboratively in a number of centres worldwide, and have been widely field-tested. The WHOQOL-BREF instrument comprises 26 items, which measure the following broad domains: physical health, psychological health, social relationships, and environment. The WHOQOL-BREF is a shorter version of the original instrument that may be more convenient for use in large research studies or clinical trials.

The QWB-SA is less expensive to administer than the interviewer-QWB and is a useful alternative for determining the effectiveness and cost-effectiveness of treatments for depression relative to other physical and mental illness treatments. One of the criticisms of the original, interview driven QWB is that it is more expensive and difficult to administer than competing measures, such as the SF-36. The original QWB is relatively long and complex because it has some branching and probe questions and requires a trained interviewer. We therefore developed a self-administered QWB; referred to as the Quality of Well-Being scale, Self-Administered (QWB-SA) that addresses some of these issues (Kaplan, Ganiats, and Sieber, 1996). There are several strengths of the QWB-SA: * Includes assessment of symptoms in addition to various areas of functioning. * The expanded list of symptoms now includes additional mental health items. * To reduce recall bias, the QWB-SA assesses only the 3 days prior to completion of the questionnaire. * The scoring of the instrument utilizes population-derived preference weights. Use of the QWB-SA is growing rapidly. The UCSD Health Services Research Center is conducting a strong and diverse research program toward establishing the psychometric properties of this new measure. Current studies are addressing the ability of the QWB-SA to detect changes in samples of migraineurs, cataract surgery patients, mental health populations, arthritis patients, as well as validating the sensitivity of this measure translated in Spanish, German, Italian, Swedish, French-Canadian, and Dutch.