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

Published:November 17, 2021DOI:https://doi.org/10.1016/j.acap.2021.11.007

      Abstract

      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.

      Keywords

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