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Measuring Preoperative Health-Related Quality of Life: What Metrics Matter


Summary of Key Points

  • Measurement of health-related quality of life (HRQOL) is an integral part of healthcare.

  • HRQOL measures are a subset of patient-reported outcomes that measure common ways in which health or healthcare impact wellbeing over time.

  • HRQOL surveys allow us to more closely measure patient perceptions of health and the effects of interventions for spinal disorders.

  • Measures can be generic health–related or condition-specific, although conditions such as low back pain are so common that they may sometimes be considered generic conditions.

  • Several key characteristics help guide choice of HRQOL tool, such as validity, reliability, study population, setting, timing, and practicality.

  • Advances in HRQOL tools and computer adaptive testing will help reduce survey fatigue and burden, and facilitate use of these instruments in direct clinical care.

Health-related quality of life (HRQOL) is defined by the Centers for Disease Control and Prevention as “an individual’s or group’s perceived physical and mental health over time.” Although the terms HRQOL and patient-reported outcomes (PROs) are sometimes used interchangeably, HRQOLs are a subset of PROs, as PROs are the “measurement of any aspect of a patient’s health status that comes directly from the patient (i.e., without the interpretation of the patient’s responses by a physician or anyone else).” The aspects of health that are measured in a PRO questionnaire can range from symptoms such as pain or headache to more complex concepts such as the effects of mental and physical health on the ability to carry out daily activities.

HRQOL can be used for many purposes, such as screening for problems and evaluating health over time. In evaluating the quality of healthcare, Donabedian described a conceptual framework consisting of: (1) structure , the context or setting in which healthcare is provided, (2) process , or the sum of actions of that make up healthcare, and (3) outcomes , the effects of healthcare on the patients and community or the ultimate goal of healthcare. , HRQOL tools enable us to more fully measure the outcomes of interventions in spine health.

The purpose of this chapter is to discuss (1) the importance of HRQOL in spine care; (2) key characteristics of HRQOL tools; and (3) some commonly used HRQOL surveys in spine. We will also discuss some challenges with clinical use of these tools, and potential ways that these tools may continue to impact spine care in the current healthcare environment.

The Importance of Health-Related Quality of Life in Spine Care

Rates of spine surgery have increased over time, and the costs of this care are under intense scrutiny. Measurements of outcomes are critical in assessing the benefits and costs of various treatment options for spinal disorders. Over the past 30 to 40 years, patient experience and perception, as measured by HRQOL tools, have become recognized as key components of outcome. A comprehensive and well-designed HRQOL tool may detect changes in outcome that are relevant or high priority from a patient perspective. In addition, the act of asking for input from patients about their medical care may help increase patient engagement, empowerment, and satisfaction with medical services. HRQOL measurements are used to compare outcomes and costs of different treatments and allow healthcare providers to better inform patient-centered decision making.

Key Characteristics of Health-Related Quality of Life Tools

Several key characteristics can help guide selection of HRQOL tools because there are many potential HRQOL assessment options. HRQOL tools consist of a number of questions or items that are usually grouped in areas of behavior, activities, or experience, called domains or dimensions. For example, domains can describe the ability to perform daily activities, sleep disturbance, or level of depression. The domains add up to comprise the concept or the scope of HRQOL measured by the instrument. These tools are sometimes called “static” or “dynamic” and are classified as generic or condition-specific.

“Static” tools are based on classical test theory and require that all items must be answered for a total score. “Dynamic tools” are modifiable in that questions can be changed based on the answer to previous questions. This allows for questionnaires to be tailored, maximizing the accuracy of measurement while reducing question burden and survey fatigue. For example, the Patient-Reported Outcomes Measurement Information System (PROMIS) bank is based on item response theory, which uses probability modeling to predict responses to questions based on measured traits and patterns of answered questions.

Generic tools are designed to assess quality of life in a way that is applicable to the general population. These tools can be used to compare HRQOL among patients with different conditions. However, generic instruments may not be very responsive for particular diseases, especially when the changes of interest do not span multiple domains of life. When a specific aspect of health status is anticipated to change in response to a condition or event such as spine surgery, a condition-specific instrument can provide more targeted information. Condition-specific HRQOL tools are designed to link the impairment experienced by the patient to his/her spine pathology, and may be more responsive in some cases than a generic measure. Generic and condition-specific instruments are not mutually exclusive, and many are correlated.

Reliability, Validity, and Responsiveness

HRQOL tools should also be selected based on their characteristics. Reliability, validity, floor and ceiling effects, and responsiveness are some key characteristics that should be considered.

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