Health-related Quality of Life in Emphysema

Abstract

Patients with emphysema may experience reduced health-related quality of life (HRQOL). HRQOL measures have evolved from two different measurement traditions: psychometric theory and decision theory. Psychometric methods typically create a profile of outcomes, whereas decision theory methods offer a summary score on a continuum ranging from 0.0 (for death or worst possible health) to 1.0 (for best possible health). Decision theory methods are better suited for cost-effectiveness studies. Generic HRQOL measures can be applied to any disease population, whereas disease-targeted measures are tailored to a specific clinical condition. Disease-targeted measures are typically more sensitive to clinical change, but cannot offer a comparison basis for different clinical conditions. This article reviews the measurement of HRQOL in patients with emphysema. The National Emphysema Treatment Trial (NETT) offers an example of the application of both generic and disease-targeted, as well as profile and decision theory, methods. The NETT illustrates how HRQOL measures can be used to assess outcomes and estimate cost-effectiveness in a major clinical trial.Keywords: health-related quality of life; emphysema; outcomes assessment; quality-of-life measurement Patients with emphysema experience significant limitations in daily activities and reduced quality of life. Evidence supports the value of medical management and pulmonary rehabilitation for emphysema. Despite important advances in medical management, the promise of medical therapy is limited. Lung volume reduction surgery (LVRS) offers the potential to enhance quality of life for selected patients who have completed pulmonary rehabilitation.The goals of surgical and medical treatments for emphysema are to extend life expectancy and to improve quality of life. Medicines have side effects and surgery is associated with operative and perioperative risks. Recovery from surgery necessarily reduces quality of life and functioning in the short term. These effects are important, but often are difficult to quantify. Healthrelated quality of life (HRQOL) measures attempt to characterize the negative and positive effects of a disease as well as its effect on quality of life.

Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review

“…It measures HRQOL from a 'decision theory approach,' in which differently weighted symptoms contribute to one final score, which can be applied to any population. 46 This is distinct from the approaches of other QOL instruments, in which a profile is generated composed of measurements in several domains; the QWB correlated only moderately to the physical domain of the psychometric SF-36 instrument. 5 The QWB tells health-care providers very little about the HRQOL of their individual SCI client, as it is intended to offer interpopulation comparison, with less sensitivity to clinical change.…”

“…5 The QWB tells health-care providers very little about the HRQOL of their individual SCI client, as it is intended to offer interpopulation comparison, with less sensitivity to clinical change. 46 With respect to the SWLS, it is possible that the brevity and generality of its approach, as well as the wording of several of the questions (for example 'If I could live my life over, I would change almost nothing'), weaken its applicability with SCI population.…”

Cognitive and Psychological Issues in Emphysema

“…The prevalence of depression in older adults in the general population has been estimated as between 8 and 20%; thus studies to date clearly indicate higher depression rates among patients with COPD (21). Multiple studies have also demonstrated poor quality of life among patients with COPD (22), and this was explored in greater detail by Kaplan and Ries (see pages 561-566 of this symposium [32]). …”

Obstructive Sleep Apnea in Patients with End-Stage Lung Disease

“…9 Both end-stage lung disease (ESLD) and OSA have been associated with decreased health-related quality of life (HRQOL) and important comorbidities. [10][11][12] If the rate of OSA in ESLD patients is substantial, some of the associated changes in HRQOL and comorbidities could be due to the presence of concomitant OSA. In view of the scarcity of data on the case rate of OSA in patients with ESLD and a possible association between OSA and multiple comorbidities as well as poor HRQOL, we performed a retrospective review of patients with ESLD referred to our lung transplant service for evaluation.…”