Is the Use of QOL Data Really Any Different than Other Medical Testing?
Section snippets
Why is QOL Data Important in Clinical Care and Clinical Research?
Are QOL data any less important to patient care than laboratory data? Unlike laboratory data, which are viewed as critical information in the management of most patients, the value of QOL data above and beyond routine clinical data is often unclear. The focus of most cancer care centers is increasing survival, palliating symptoms, and monitoring toxicities. Yet, the totality of a patient’s health is broader than just physical functioning and symptoms. The totality includes physical, mental,
Similarities of Laboratory and QOL Data Elements
To incorporate an endpoint into clinical practice or research, a number of general requirements must be met, including: a uniform description of the endpoint, a method of calibration and standardization, guidelines for interpretation, and clinical pathways or practices for action to be taken based on the endpoint. The components of a CBC are examples of such data and can serve as an analogy for what is needed to incorporate QOL assessment into clinical research and practice. Figure 1 contains a
Measurement Issues
A clinician contemplating measurement of a particular QOL domain in a patient may wonder why there is no gold standard instrument or scale to use. For example, depression can be measured by the Beck Depression Inventory18 or the Profile of Mood States19 questionnaires. Each of these instruments measures aspects of depression but on different scales. This is really no different from the choice between using the Eastern Cooperative Oncology Group (ECOG) performance status (PS) measure, which
Interpretation and Change of Routine Clinical Data versus QOL Data
One may argue that the guidelines for interpretation of QOL data are relatively new and still evolving, an argument not unique to QOL data. In 2003, new guidelines from the National Institutes of Health for classifying hypertension caused 45 million Americans (22% of adults) who thought their blood pressure was normal to be reclassified as having prehypertension literally overnight.26, 27 Similarly, recently updated dietary guidelines from the U.S. Department of Health and Human Services and
Utilization of QOL Data
There is one key component missing from the clinical use of QOL data; it is still unclear for many QOL endpoints which specific clinical disease or problem management pathways should be utilized to address the problems identified. For overall QOL and component domains, an obvious course of action by the clinician is to interpret a problematic score as a need for dialogue with the patient with regards to specific QOL domains. For example, if the intellectual domain is indicative of a problem in
Summary
QOL data and routine clinical data such as laboratory data, whether used in clinical practice or research, can be viewed by clinicians in the same way. Both provide important patient-related information using instruments which are reliable and valid. Both require that the clinician or researcher understand how to utilize and interpret the data and gain comfort with doing so through experience. It is through this repeated usage of QOL data that clinicians will, hopefully, come to accept QOL data
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“Am I OK?” using human centered design to empower rheumatoid arthritis patients through patient reported outcomes
2019, Patient Education and CounselingCitation Excerpt :Although the Rheum-PACER™ software developed in the Geisinger health system and the dashboard of the Swedish Rheumatology Quality Register collect many of the same data elements we identified in this study, these tools were not specifically designed to be patient-facing [6,8]. Other studies have reported on decision aids specifically around medication choices, including for patients with RA focused on low-literacy populations, but without an assessment of patient-reported outcomes such as physical function [22–26]. Although several tools to help with the treatment decision-making process in RA have been developed, our PRO dashboard tool is unique because it is focused on helping patients understand their disease outcomes in the context of medication use rather than guide a particular treatment decision.
A new approach to combining clinical relevance and statistical significance for evaluation of quality of life changes in the individual patient
2010, Journal of Clinical EpidemiologyCitation Excerpt :To benefit from the new possibilities, physicians and other medical staff need a certain amount of guidance. This does not only apply for the practical use of the computer system but likewise for the interpretation of the QOL data which, in contrast to clinical variables, are not very familiar to most medical users [5]. One possibility is to provide cut-off values for QOL scores, for example, “within normal range” and “below normal range.”
Estimation of subjective quality of life in schizophrenic patients using speech features
2023, Frontiers in Rehabilitation Sciences