Clinical Applications of the CFQ-R
There are a number of potential applications for the CFQ-R, such as monitoring the health of a population of people with CF, measuring the effects of a clinical trial in which QOL is a primary or secondary outcome, and monitoring outcomes in clinical practice to improve the quality of care.
1. The CFQ-R can be administered routinely during clinic visits to monitor a patient's progress and response to treatment. Because the CFQ-R provides information on an individual's functioning in a variety of areas, such as activity level, social and emotional functioning, and treatment burden, it enables the CF team to consider these parameters-in addition to conventional health indicators-when discussing health status or treatment options. Ideally, administration of the CFQ-R should become part of an annual clinic visit, with a profile of that person's QOL generated and reviewed.
2. Results from the CFQ-R may help both the patient and the healthcare team quantify the impact of new treatment regimens on different aspects of functioning. If people with CF are better able to identify what is important to them in terms of daily functioning, alterations in the treatment regimen that address their specific needs may be implemented. This may help people with CF maintain or even improve adherence to the complexities of daily CF care.
3. As we observed in the development of the CFQ-R, these questionnaires can be of tremendous value in promoting communication. Administration and review of the CFQ-R may provide a means for the healthcare team to discuss how the person is functioning on a daily basis. It may also facilitate communication between the person with CF and his or her family, stimulating discussion of important issues that affect their health and happiness. For many, administration of the CFQ-R may be the first time anyone has asked them how they feel about their disease and how it is affecting their life. We were particularly struck by the number of parents who wished to know more about their child's daily functioning and perceptions of CF.
4. The CFQ-R may be used as an additional outcome parameter in research. Changes in role functioning, emotional well-being, and treatment burden can be detected and quantified with this QOL instrument. The broad scope of the measure may uncover positive or negative effects of new treatments that are not detected with traditional health indices, such as spirometry. In addition, changes in QOL may occur before meaningful changes are detected in pulmonary function scores or in radiography results. Since the CFQ-R is brief and easy to administer, it can be used in clinical drug trials, behavioral and psychosocial interventions, and studies that examine long-term adaptation to the disease.
5. Data from the CFQ-R may be used alongside traditional health outcomes to determine the effectiveness of new or controversial treatments (e.g., lung transplantation). Healthcare payers, policy makers, and patient advocacy groups may be interested in how new drugs or behavioral treatments affect QOL. Having a disease-specific measure that is maximally sensitive to the potential benefits of new treatments is essential for evaluating these effects.
6. In addition, if used across centers, this measure will allow comparisons between groups of people with CF from institutions with different treatment approaches. Similarly, it may be used in population or epidemiologic studies to characterize the course of the disease and its impact on daily functioning for different samples.