Asthma outcomes: Quality of life

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Background

“Asthma-related quality of life” (QOL) refers to the perceived impact that asthma has on the patient’s QOL.

Objective

National Institutes of Health institutes and other federal agencies convened an expert group to recommend standardized measures of the impact of asthma on QOL for use in future asthma clinical research.

Methods

We reviewed published documentation regarding the development and psychometric evaluation; clinical research use since 2000; and extent to which the content of each existing QOL instrument provides a unique, reliable, and valid assessment of the intended construct. We classified instruments as core (required in future studies), supplemental (used according to the study’s aims and standardized), or emerging (requiring validation and standardization). This work was discussed at an National Institutes of Health-organized workshop convened in March 2010 and finalized in September 2011.

Results

Eleven instruments for adults and 6 for children were identified for review. None qualified as core instruments because they predominantly measured indicators of asthma control (symptoms and/or functional status); failed to provide a distinct, reliable score measuring all key dimensions of the intended construct; and/or lacked adequate psychometric data.

Conclusions

In the absence of existing instruments that meet the stated criteria, currently available instruments are classified as either supplemental or emerging. Research is strongly recommended to develop and evaluate instruments that provide a distinct, reliable measure of the patient’s perception of the impact of asthma on all of the key dimensions of QOL, an important outcome that is not captured in other outcome measures.

Section snippets

Definition

Asthma-related QOL, as an outcome measure, refers to the perceived impact of asthma on a patient’s (ie, respondent’s) QOL. As noted, several constructs have historically been included in QOL measures: health status (eg, symptom levels), functional status (eg, activity capabilities or impairments), and the patient’s perception of the impact of these impairments on his or her QOL. Other functional domains and symptomatology, such as emotional well-being, depression or anxiety, and social

Review of asthma-related QOL instruments

Descriptive summaries of 9 asthma-related QOL instruments for adult study populations and 4 instruments for pediatric study populations follow. The subcommittee does not recommend any instrument as a core instrument because findings from the subcommittee’s review of asthma QOL instruments revealed the following limitations: most instruments include measures of functional and health status or consist entirely of these measures; none of the instruments measures the full range of dimensions that

Summary

The Asthma Bother Profile (ABP) is a 22-item instrument requiring 10 minutes to complete that was developed for the primary purpose of clinical management of patients and not necessarily for use as an outcome measure in clinical studies. The ABP is designed to assess adult patients’ perception of the asthma experience and distress in different situations and areas of life, as well as patients’ perception of their asthma management. This asthma QOL instrument is unique among currently available

Asthma-related QOL instruments for pediatric study populations

QOL instruments developed for adults are not appropriate for use with children. There are several special considerations in developing pediatric instruments that have been described as the “4 Ds of childhood”: developmental change, dependence on adults, different disease epidemiology from adults, and demographic characteristics unique to childhood.10 Because of these challenges, pediatric QOL instruments are relatively less developed than adult instruments, but a growing number of pediatric

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    The Asthma Outcomes workshop was funded by contributions from the National Institute of Allergy and Infectious Diseases; the National Heart, Lung, and Blood Institute; the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Institute of Environmental Health Sciences; the Agency for Healthcare Research and Quality; and the Merck Childhood Asthma Network, as well as by a grant from the Robert Wood Johnson Foundation. Contributions from the National Heart, Lung, and Blood Institute; the National Institute of Allergy and Infectious Diseases; the Eunice Kennedy Shriver National Institute of Child Health and Human Development; the National Institute of Environmental Health Sciences; and the US Environmental Protection Agency funded the publication of this article and all other articles in this supplement.

    Disclosure of potential conflict of interest: M. D. Cabana is on the Merck speaker’s bureau and is a consultant for Genentech and Pfizer. M. B. Foggs is a consultant and speaker for AstraZeneca, GlaxoSmithKline, and Merck. L. Olson participated in the development of the Children’s Health Survey for Asthma (CHSA) as a member of the AAP staff. The rest of the authors declare that they have no relevant conflicts of interest.

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