Abstract
Purpose
To understand differences in perceptions of patient-reported outcome domains between children with asthma and children from the general population. We used this information in the development of patient-reported outcome items for the Patient-Reported Outcomes Measurement Information System Pediatrics project.
Methods
We conducted focus groups composed of ethnically, racially, and geographically diverse youth (8–12, 13–17 years) from the general population and youth with asthma. We performed content analysis to identify important themes.
Results
We identified five unique and different challenges that may confront youth with asthma as compared to general population youth: (1) They experience more difficulties when participating in physical activities; (2) They may experience anxiety about having an asthma attack at anytime and anywhere; (3) They may experience sleep disturbances and fatigue secondary to their asthma symptoms; (4) Their health condition has a greater effect on their emotional well-being and interpersonal relationships; and (5) Youth with asthma report that asthma often leaves them with insufficient energy to complete their school activities, especially physical activities.
Conclusions
The results confirm unique experiences for children with asthma across a broad range of health domains and enhance the breadth of all domains when creating an item bank.
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Abbreviations
- NIH:
-
National Institutes of Health
- PRO(s):
-
Patient-reported outcome(s)
- PROMIS:
-
Patient-Reported Outcomes Measurement Information System
- UNC:
-
The University of North Carolina at Chapel Hill
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Acknowledgements
We would like to acknowledge the contribution of Harry A. Guess, MD, PhD, to the conceptualization and operationalization of this research prior to his death. This work was funded by the National Institutes of Health through the NIH Roadmap for Medical Research, Grant 5U01AR052181. Information on the Patient-Reported Outcomes Measurement Information System (PROMIS) can be found at http://nihroadmap.nih.gov/ and http://www.nihpromis.org.
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Appendix: PROMIS focus group questions for children (ages 8–17)
Appendix: PROMIS focus group questions for children (ages 8–17)
We are trying to learn more about children—how children feel about themselves, their bodies, and their relationships with others. We are interested in finding out whether and how their health affects these feelings. By health, we mean the overall condition of the body and mind.
Physical
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1.
In what ways, if any, does your health keep you from doing the physical activities that you want to do?
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Probes
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In what ways, if any, does your health get in the way of taking care of yourself?
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In what ways, if any, does your health limit your family activities?
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In what ways, if any, does your health affect your sleeping or eating?
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Do you ever feel extra tired? In what ways, if any, does feeling tired affect what you do?
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In what ways, if any, is taking medicines or participating in other treatments a problem?
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When you have a health problem how do you know when you need to go to the doctor, hospital, or emergency room?
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Asthma specific probes
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In what ways, if any, does having asthma affect what you do?
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In what ways, if any, does being afraid of having asthma symptoms affect what you do?
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What asthma symptoms, if any, bother you most?
Psychological/social
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2.
Overall, how does your health make you feel emotionally?
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Probes
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What kinds of things, if any, make you feel extra good about yourself?
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What kinds of things, if any, do you worry about?
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In what ways, if any, does your health affect how you get along with other people?
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In what ways, if any, does your health cause problems in your family?
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Asthma specific probes
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In what ways, if any, does having asthma make a difference how you feel emotionally?
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Probes
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In what ways, if any, does having asthma make a difference whether you feel happy?
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In what ways, if any, does having asthma make a difference in whether you feel unhappy?
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In what ways, if any, does having asthma make a difference in whether you feel afraid?
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In what ways, if any, does having asthma make a difference in whether you feel angry?
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In what ways, if any, does having asthma make you feel different from your friends?
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In what ways, if any, does having asthma make you feel good or bad about who you are?
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School
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3.
Overall, how do you like school?
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Probes
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What do you like best about school?
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What do you like least about school?
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Overall, how do you get along with your classmates?
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What problems, if any, do you have at school because of your health?
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Asthma specific probes
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In what ways, if any, does asthma affect what you like or dislike about school?
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In what ways, if any, does asthma affect how you get along with other kids at school?
Other
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4.
What else about your health, if anything, is important in your life?
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Probes
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So far, we’ve talked a lot about how a child’s health can create problems for (you/your family)...Can you tell me about any good things that go along with your (having asthma/ having health problems)?
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We have asked you a lot of questions in this session. What other questions about the ways health affects children’s lives should we be asking—if any?
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Walsh, T.R., Irwin, D.E., Meier, A. et al. The use of focus groups in the development of the PROMIS pediatrics item bank. Qual Life Res 17, 725–735 (2008). https://doi.org/10.1007/s11136-008-9338-1
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DOI: https://doi.org/10.1007/s11136-008-9338-1