Quality of Life Assessment in Medicine. A CD-ROM for Windows, Issue 2. Edited by Marcello Tamburini. Glamm Interactive, Milano, 1997. Price:$212.
During the past 5 yr, dramatic changes have occurred in the healthcare system in the United States. The effectiveness of certain customary therapies is being questioned, and the need to investigate the link between medical care and outcomes (i.e., outcome research) is emphasized increasingly. The scope of outcome research has expanded from the traditional, narrow concept of mortality and morbidity as the primary outcome measures to a broader perspective. In addition to interest in patient satisfaction and economic outcomes, physical functioning, mental well being, and other aspects of health-related quality of life have become important indices of outcome. Outcome research has increased in complexity. Outcome research investigators would welcome a friendly, interactive referral source of validated instruments to measure quality of life.
The author indicates that the CD-ROM was inspired by two recent monographs about measuring disease and quality of life with the objective of facilitating researchers in making comparisons between different instruments used in various fields of medicine. In the brief text that summarizes two decades of research about the evaluation of quality of life in medicine, the author emphasizes the need for assessing quality of life from both the perspective of the care provider and that of the recipient. Recent studies have highlighted discrepancies between the judgment of the patient and that of the physician in assessing outcomes. In particular, healthcare providers often underestimate patient functional status and certain physical symptoms (e.g., pain) and, hence, undertreat patients. Four fundamental dimensions of quality of life are identified: functional status, physical symptoms, emotional and cognitive conditions, and social relations. The author suggests that all four dimensions should be studied in detecting differences between treatments. Unfortunately, the quality-of-life measures included in the CD-ROM are not reviewed critically, and the reader is not informed as to whether an instrument of interest includes these four critical dimensions.
This CD-ROM is designed to provide a computer-assisted guide for choosing quality-of-life instruments. The initial screen of the program has four functional categories: Instruments List, Search, Internet List, Researchers Addresses. The Instruments List provides a catalog of 500 quality-of-life instruments, including patient- and clinician-oriented measures that are listed by title. However, less than one fifth of the instruments have additional information that can be obtained from this alphabetic list. There is no apparent way to search this list based on type of measure, and no description of the scale is available to help the uninformed person determine whether a scale is suitable. Where additional information is provided, it includes the author of the instrument, the languages in which the scale is available, the address of the author for contact, and, sometimes, a copy of the scale itself. A brief description of the purpose of the scale and references about the validation of the scale and subsequent studies would have been extremely useful. In addition, the Internet address of the primary author of the instrument is not provided on this screen. The user has to go back to the Researcher's Address list to obtain the electronic mail address. A link between these two categories would have enhanced the user-friendliness of the program.
The author indicates that the Instruments List will be updated periodically at approximately 6-month intervals. At $212 (including shipping) for the initial compact disk and $160 for subsequent updates of the program, it is fairly expensive.
The Search function is the most useful aspect of the program. This function allows one to search through 10,000 bibliographic references related to quality-of-life research during the past 20 yr. Standard search techniques allow one to search by title, author, journal, publication year, and instrument name. The search provides the reference source and the abstracts of relevant articles. A limitation of the search function is the requirement that an instrument be identified. We were not able to search by the word “pain” as a key word without including the abbreviation for an instrument in the search function. Hence, the comparison of papers evaluating quality of life and pain is difficult without knowledge of the instruments used in this area. Because the Search function is not linked with the Instruments List, the user is forced to write down or remember the instruments of interest for a search of the database. Users should also be aware that the reference list is incomplete and did not include the original articles for some instruments.
The Internet Sources category also is well organized. Internet sources are categorized into Assessment Instruments, Bibliographic Research, Diseases, Symptoms and Special Populations, Methodology, Top Ten Journals on Quality of Life Assessment in Medicine, and Major Organizations and Research Groups. This function of the CD-ROM provided direct access to several useful Web sites.
A list of 1,000 researchers addresses is provided in alphabetic order. However, there is no browse or search function in this category. The user has to painfully search through multiple screens to find the address of the desired investigator.
Overall, this CD-ROM provides a catalog of instruments and partial references for studies about quality of life that can be retrieved easily. It also provides a bibliography with abstracts concerning the selected instrument with a relatively easy-to-use search program and a list of related Internet resources. The different functions of the program are not interlinked well and, therefore, the program is cumbersome to use. The usefulness of the CD-ROM is limited because frequent updates are necessary that are not inexpensive. The CD-ROM may be useful to a researcher performing an outcomes research study who is searching for well-validated instruments to use. However, the program is likely to be of minimal benefit to an investigator who is well versed in bibliographic searchers through readily available Web sites, such as the National Library of Medicine.
Srinivasa N. Raja, M.D.
Professor; Division of Pain Medicine; Department of Anesthesiology and Critical Care Medicine
Jennifer Haythornthwaite, Ph.D.