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Editor`s Opinion: The Question of Outcomes
Outcome assessments in healthcare have traditionally been rather crude, all-or-nothing propositions. The most commonly used measure, mortality rate, was appropriate when the majority of people around the world died from infectious diseases. Standards are changing.
Many countries have improved sanitation and are immunizing their children, dispensing antibiotics, and providing relatively safe treatment options for a wide variety of conditions. Health is no longer defined merely as "absence of illness." Thus, mortality and survival rates no longer capture the effectiveness of individual care or healthcare systems. We have entered the era of asking questions about the real, perceived, and comparative merit of individual and population-based interventions. Must we use a treatment, just because it is available? Should we, just because we can? Who really benefits from this intervention and why?
Consider our efforts to describe (and compare) health and health outcomes by including the patient's own definition of health. Because individual definitions of "health" are as diverse as people themselves and vary based on economic, social, and personal circumstances, researchers spent decades defining and testing concepts of health and health-related states. As evidenced by the articles in this issue of Ostomy/Wound Management, the process is far from complete. Peter Frank, Lynn McCullagh, and Christine J. Moffatt tested one of the most widely researched health outcomes instruments, the SF-36™ (CopyrightMedical Outcomes Trust and John E.Ware, Jr. ), to assess quality of life in clients with venous ulcers.1 Patrick Marquis and colleagues also used an existing instrument, the Quality of Life Index (QLI) for patients with cancer, but modified it to obtain much needed information about the quality of life of patients following ostomy surgery.2 The observations of Joyce Pittman about family stress that results from caregiving serve as a reminder that little is known about the quality of life of the millions of people who care for individuals with chronic wounds in their own homes.3
To advance the science and practice of wound, skin, ostomy, and incontinence care, we can build on the work and instruments presented in this issue of Ostomy/Wound Management, use information from dozens of quality-of-life studies conducted in other disciplines, and test one of many available instruments to ascertain patient and caregiver quality of life.4-7 Only then will we be able to quantify whether our care and interventions really make a difference in patients' lives. Only then will we know if the disadvantage, inconvenience, or cost of a particular therapy is outweighed by improved outcomes, including patient quality of life.
Unfortunately, many of us have experienced the frustration that comes from knowing how to best manage a condition without being able to do so. To that end, we need policy and reimbursement changes in many areas, including changes that reflect the true cost and benefits of, for example, prevention, patient education, supportive therapy, and behavioral incontinence treatment modalities. An important first step toward achieving this goal is to move beyond our standard method - that is, describing the impact of these conditions on population health by simply reporting their numbers and costs of care. Studies to quantify and document the burden of incontinence, pressure ulcers, or having an ostomy must be conducted. Unless we have some idea about the impact of these conditions on the health of our population compared to other chronic conditions, arguments to change policies may fall on deaf ears. Because the burden of chronic conditions includes their effects on quality of life, these studies are crucial both at the individual patient care and policy levels. Fortunately, quality-of-life instruments - as well as systems to ascertain health, functioning, and disability and burden of disease or disability-adjusted life years (DALYs) - can be used throughout the world.8,9 Because they are designed to capture every individual's unique definition of health and well-being, our worldwide community of Ostomy/Wound Management readers can work together to achieve improved care for all. All we need to do is ask the questions, listen to the answers, and learn.
1. Frank PJ, McCullagh L, Moffatt, CJ. Assessing quality of life in patients with chronic leg ulceration using the Medical Outcomes Short Form-36 questionnaire. Ostomy/Wound Management. 2003;49(2):26-37.
2. Marquis P, Marel A, Johnson, B. Quality of life in patients with stomas: the Montreux study. Ostomy/Wound Management. 2003;49(2):48-55.
3. Pittman J. The chronic wound and the family. Ostomy/Wound Management. 2003;49(2):38-46.
4. Ware JE, Kosinski M, Keller SD. A 12-item short form health survey. Med Care. 1996;34(3):220-233.
5. McMillan SC, Mahon M. The impact of hospice services on the quality of life of primary caregivers. Oncol Nurs Forum. 1994;21:1189-1195.
6. World Health Organization. The structure of the WHOQOL-100. Available at: http://www.who.int/msa/qol/q15.htm. Accessed on January 2, 2003.
7. Bradley C. The 12-item well-being questionnaire: origins, current stage of development, and availability. Diabetes Care. 2000;23(6):875.
8. World Health Organization. International Classification of Functioning, Disability and Health. Available at: http://www.who.int/msa/qol/. Accessed on January 2, 2003.
9. Murray CJL, Lopez AD. Global health statistics. Harvard School of Public Health on behalf of the World Health Organization and the World Bank. Global Burden of Disease and Injury Series, Vol. I and II. Cambridge, Mass.;1996. 10. World Health Organization. Global burden of disease 2000. Available at: http://www.who.int/whr2001/main/htm. Accessed on January 2, 2003.
