What Parents Want Doctors to Know: Responses to an Open-Ended Item on an Asthma Questionnaire

Roxana Delgado-Martinez, Melanie Frances Barry, Lorena Porras-Javier, Lindsey R. Thompson, Barbara J. Howard, Raymond Sturner, Jill S. Halterman, Peter G. Szilagyi, Sande O. Okelo, Rebecca N. Dudovitz

Research output: Contribution to journalArticlepeer-review


Objective: Unstructured 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. Methods: The 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. Results: Of 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. Conclusion: Parents 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.

Original languageEnglish (US)
Pages (from-to)657-666
Number of pages10
JournalAcademic pediatrics
Issue number4
StatePublished - May 1 2022


  • asthma
  • patient-centered care
  • patient-physician communication
  • qualitative

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health


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