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Development of a measure of asthma-specific quality of life among adults

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Abstract

Purpose

A key goal in asthma treatment is improvement in quality of life (QoL), but existing measures often confound QoL with symptoms and functional impairment. The current study addresses these limitations and the need for valid patient-reported outcome measures by using state-of-the-art methods to develop an item bank assessing QoL in adults with asthma. This article describes the process for developing an initial item pool for field testing.

Methods

Five focus group interviews were conducted with a total of 50 asthmatic adults. We used “pile sorting/binning” and “winnowing” methods to identify key QoL dimensions and develop a pool of items based on statements made in the focus group interviews. We then conducted a literature review and consulted with an expert panel to ensure that no key concepts were omitted. Finally, we conducted individual cognitive interviews to ensure that items were well understood and inform final item refinement.

Results

Six hundred and sixty-one QoL statements were identified from focus group interview transcripts and subsequently used to generate a pool of 112 items in 16 different content areas.

Conclusions

Items covering a broad range of content were developed that can serve as a valid gauge of individuals’ perceptions of the effects of asthma and its treatment on their lives. These items do not directly measure symptoms or functional impairment, yet they include a broader range of content than most existent measures of asthma-specific QoL.

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Abbreviations

NHLBI:

National Heart Lung and Blood Institute

QoL:

Quality of life

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Acknowledgments

We would like to thank our expert panel which includes Eric Kleerup, MD (Clinical Professor, David Geffen School of Medicine, Division of Pulmonary and Critical Care Medicine), Steve Erickson, Ph.D. (Associate Professor at the University of Michigan College of Pharmacy), Cynthia Rand, PhD. (Professor of Medicine at the Johns Hopkins School of Medicine), Felita Jones (Asthma and Allergy Foundation of America), and Chris Draft (community activist and founder of the Chris Draft Family Foundation). Research reported in this publication was supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health under Award Number R01HL107312. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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Correspondence to Nicole K. Eberhart.

Appendix: Final item pool for field test

Appendix: Final item pool for field test

Responses for the following items indicated on the following 5-point scale:

  • 1 = Not at all

  • 2 = A little bit

  • 3 = Somewhat

  • 4 = Quite a bit

  • 5 = Very much

In the past 4 weeks, because of my asthma…

  • It was hard to keep up with others when we were physically active.

  • I had to do things for shorter amounts of time than I would have liked.

  • I was unable to do some kinds of work or other regular daily activities I would like to do.

  • I was unable to do all the things I wanted to do.

  • It was hard to do the things I enjoy doing.

  • I was unable to get as much done as I would’ve liked at work, school, or home.

  • I was afraid to be physically active.

  • I had to do my work, school, or other regular daily activities for shorter periods of time.

  • I cut back on things I enjoy.

  • I felt frustrated at not being fully able to participate in physical activities.

  • I was kept from doing things I needed to do at work, school, or home.

  • I felt generally limited.

  • Everyday activities were a struggle.

  • I felt bothered by limitations in what I could do.

  • I got tired easily.

  • I had to be careful what I did.

  • My work, school, or other regular daily tasks suffered.

  • I did worse at work, school, or other regular daily activities.

  • I cut back on going to places I like.

  • I was bothered at work, school, or home.

  • I worried that I would have an asthma attack while visiting a new place.

  • It bothered me that I always have to be aware of possible asthma triggers.

  • I had to be cautious when going to a new place.

  • I had to do a lot of planning to make sure I always had an inhaler ready.

  • It bothered me that I have to plan ahead.

  • I felt bothered by having to avoid situations or places.

  • I took time off from work or school.

  • I felt frustrated that I have to do things differently than people who don’t have asthma.

  • I felt like I wasn’t normal.

In the past 4 weeks…

  • It was hard for me to admit that I have asthma.

  • I tried to hide my asthma from others.

  • I was embarrassed by using my inhaler in front of other people.

  • Having to avoid asthma triggers created some problems in my relationships with family, friends, significant others, or coworkers.

  • I struggled with accepting that I have asthma.

  • Asthma placed stress on my relationships with family, friends, significant others, or co-workers.

  • I found myself making excuses to others because of my asthma.

  • I worried about what will happen to me when I get older because of my asthma.

  • I worried about the long-term effects of asthma on my health.

  • I worried that asthma medications will make my health worse in the future.

  • I worried that asthma will shorten my life.

  • I worried about using too much asthma medication.

  • I worried about becoming immune to my asthma medication over time.

  • I felt frustrated that I can’t fix or get away from my asthma.

  • It bothered me that my asthma is always there.

  • I struggled with the pros and cons of taking asthma medication.

  • I was bothered by side effects from asthma medication.

  • It bothered me that I don’t know when my asthma will get worse.

  • The cost of my asthma medications bothered me.

  • The cost of treating my asthma was a burden to me.

  • I had to budget carefully because of expenses related to my asthma.

  • I had to make compromises because of the cost of treating my asthma.

  • I felt frustrated having to deal with insurance issues related to my asthma.

  • I worried about not having my inhaler when I need it.

  • I felt anxious when my inhaler was not nearby.

  • It was stressful when I couldn’t find my inhaler.

  • I worried about not getting to my inhaler quickly enough.

  • I felt frustrated when I woke up during the night because of my asthma.

  • It was hard to get a good night’s sleep because of my asthma.

  • I was frustrated by not being able to breathe at night.

  • I felt frustrated by not being able to fall asleep because of my asthma.

  • I was afraid of having an asthma attack in my sleep.

  • I felt frustrated that I couldn’t make plans in advance because of my asthma.

  • I felt like I couldn’t enjoy life because of my asthma.

  • Asthma interfered with my social life.

  • I felt like I missed out on doing things with others because of my asthma.

  • I felt that asthma is preventing me from achieving what I want in life.

  • I felt that asthma was controlling my life.

  • I enjoyed the time I spent with others less because of my asthma.

  • It bothered me that I cannot do something without first thinking about how it might affect my asthma.

  • Managing my asthma took a lot of effort.

  • Asthma affected my life more than I want to admit.

  • I felt different than other people.

  • I felt frustrated that other people didn’t understand my asthma.

  • Using an inhaler got in the way of what I was doing.

  • I felt that I could not control my asthma.

  • I worried about having an asthma attack in front of others.

  • I felt frustrated that my asthma got in the way of physical intimacy.

  • I was bothered by the unwanted attention I got because of my asthma.

  • Asthma interfered with my romantic relationships.

  • I worried about dying from an asthma attack.

  • I felt frustrated that I can’t control the things around me that trigger my asthma.

  • It bothered me that I can’t visit friends or family because of asthma triggers in their home.

  • I felt frustrated that I can’t control things in my home that trigger my asthma.

  • I avoided situations where my asthma might embarrass me.

  • I felt frustrated that people didn’t take my asthma seriously.

  • It was hard having to speak up when others did things that could trigger my asthma.

  • I felt scared when an asthma attack came on.

  • It was annoying having to make sure I had enough asthma medication on hand.

  • My asthma was on my mind.

  • My asthma bothered people I care about.

  • I worried about taking daily medications for my asthma.

  • I had to worry about asthma triggers.

  • It took a lot out of me when I had an asthma attack.

  • I was bothered by the way my asthma medication made me feel.

  • It bothered me that people thought my asthma symptoms were cold symptoms.

  • I worried about becoming addicted to my asthma medication.

  • My asthma kept me from having things I wanted to have (e.g., pets, carpet, perfume, etc.).

  • I found it annoying having to carry my inhaler with me.

  • I felt dependent on my asthma medication.

  • I worried about getting a cold with my asthma.

  • I avoided thinking about my asthma.

Responses for the following items indicated on the following 5-point frequency scale:

  • 1 = Never

  • 2 = Almost Never

  • 3 = Sometimes

  • 4 = Often

  • 5 = Almost always

In the past 4 weeks, because of my asthma…

  • I felt annoyed.

  • I felt frustrated.

  • I felt angry.

  • I felt fed up.

  • I felt stressed.

  • I felt irritable.

  • I felt sad.

  • I felt anxious.

  • I felt helpless.

  • I felt overwhelmed.

  • I felt tired.

Note The items above will not all be in the final item bank(s), which will be informed by field test results. Final item bank(s) will be available online and from the lead author.

© 2013 RAND Corporation

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Eberhart, N.K., Sherbourne, C.D., Edelen, M.O. et al. Development of a measure of asthma-specific quality of life among adults. Qual Life Res 23, 837–848 (2014). https://doi.org/10.1007/s11136-013-0510-x

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