What Parents Want Doctors to Know: Responses to an Open-Ended Item on an Asthma Questionnaire |
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| Institution: | 1. Department of Pediatrics, The David Geffen School of Medicine at UCLA (R Delgado-Martinez, M Venegas, F Barry, L Porras-Javier, PG Szilagyi, SO Okelo, and RN Dudovitz), Los Angeles, Calif;2. Department of Pediatrics, The Johns Hopkins University School of Medicine (BJ Howard and R Sturner), Baltimore, Md;3. Department of Pediatrics, University of Rochester School of Medicine (JS Halterman), Rochester, NY;4. Kaiser Permanente Bernard J. Tyson School of Medicine (LR Thompson), Pasadena, Calif;1. Division of Emergency Medicine, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati Children''s Hospital Medical Center (B Kappy and D Schumacher), Cincinnati, Ohio;2. Division of Hospital Medicine, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati Children''s Hospital Medical Center (A Statile and L Herrmann), Cincinnati, Ohio;3. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati Children''s Hospital Medical Center (E Lendrum), Cincinnati, Ohio;1. University of Minnesota, Masonic Children''s Hospital, Pediatric Hospital Medicine (KA Allen), Minneapolis, Minn;2. University of Minnesota, Clinical and Translational Science Institute, Biostatistical Design and Analysis Center (RL Freese), Minneapolis, Minn;3. University of Minnesota School of Medicine & Masonic Children''s Hospital, Pediatric Hospital Medicine (MB Pitt), Minneapolis, Minn;1. Department of Health Policy and Management, Milken Institute School of Public Health (E Brantley and L Ku), Washington, DC;2. Carey Business School at John Hopkins University (M Darden), Baltimore, Md;1. Department of Public Health Sciences (SS Lopes, L Shi, LB Sivaraj, K Truong, L Rolke), Clemson University, Clemson, SC;2. CURE Drug Repurposing Collaboratory (SF Heavner), Critical Path Institute, Tucson, Ariz;3. Department of Biomedical Sciences (SF Heavner), University of South Carolina School of Medicine, Greenville, SC;4. Department of Public Health Sciences (SF Heavner), Clemson University, Clemson, SC;5. Department of Pediatrics (W Basco), Medical University of South Carolina, Charleston, SC |
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| Abstract: | ObjectiveUnstructured parental comments could solicit important information about children's asthma, yet are rarely captured in clinical asthma questionnaires. This mixed-methods study describes parents’ written responses to an open-ended question in a validated asthma questionnaire.MethodsThe Pediatric Asthma Control and Communication Instrument (PACCI) asthma questionnaire was administered to parents of children with asthma symptoms presenting to 48 pediatric primary care offices (PPCP), 1 pediatric pulmonology office, and 1 emergency department (ED). Responses to the question, “Please write down any concern or anything else you would like your doctor to know about your child's asthma” were analyzed using a phenomenological approach until thematic saturation was achieved for each site. Logistic regressions tested whether sociodemographic and clinical characteristics were associated with responding to the open-ended question.ResultsOf 7,988 parents who completed the PACCI, 954 (12%) responded to the open-ended question—2% in PPCP, 31% in the ED, and 50% in the pulmonary setting. More severe asthma was associated with higher odds of responding (odds ratio, 2.01; 95% confidence interval, 1.42–2.84). Based on responses provided, we identified 3 communication types: 1) clarifying symptoms, 2) asking questions, and 3) communicating distress. Responses also covered 5 asthma-related themes: 1) diagnostic uncertainty, 2) understanding asthma etiology and prognosis, 3) medication management, 4) impact on child function, and 5) personal asthma characteristics.ConclusionParents of children with severe asthma provided clarifying details, asked questions, and relayed health concerns and distress. None of these topics may be easily captured by closed-ended asthma questionnaires. |
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