Integrating Patient-Reported Outcomes Into Research and Clinical Practice

Alexandra Quittner, Christina J. Nicolais, Estefany Saez-Flores

Research output: Chapter in Book/Report/Conference proceedingChapter

1 Scopus citations

Abstract

Patient-reported outcomes (PROs) are instruments that evaluate daily functioning and health outcomes from the patient's perspective. If developed using standardized procedures (FDA Guidance, 2009), they can be used as primary or secondary outcomes in clinical trials evaluating new medications and treatments. This chapter reviews the definition, development, and utilization of PROs for both research and clinical purposes, including developmental considerations for administration of PROs with children. Health-related quality of life measures (HRQoL) are one type of PRO, and several condition-specific PROs have been developed for a variety of pediatric respiratory diseases, including vocal cord dysfunction, asthma, cystic fibrosis, sleep-related breathing disorders, and primary ciliary dyskinesia. A substantial body of literature has demonstrated that condition-specific, rather than generic measures, are more sensitive to change and better reflect the patient's symptoms and functioning. This chapter reviews the currently available PROs for pediatric respiratory conditions, including a description of the instrument, the domains of functioning it measures, the appropriate developmental age for administration, and the psychometric properties of the instrument, including its reliability and validity. Use of PROs is becoming standard practice for both randomized clinical trials and clinical care. The current shift in medicine toward patient-centered care is consistent with development and use of PROs. These measures provide unique information about patient symptoms, level of daily functioning, and systematic response to treatment. These measures have also been shown to facilitate patient-provider communication and shared decision-making. Integration of PROs into clinical care is a critical step in promoting patient-centered, quality health care practice.

Original languageEnglish (US)
Title of host publicationKendig's Disorders of the Respiratory Tract in Children
PublisherElsevier Inc.
Pages231-240.e3
ISBN (Electronic)9780323555951
ISBN (Print)9780323448871
DOIs
StatePublished - Mar 8 2018

Keywords

  • Child-report
  • Health-related quality of life (HRQoL)
  • Measurement
  • Parent-report
  • Patient-reported outcome (PRO)
  • Questionnaire

ASJC Scopus subject areas

  • Medicine(all)

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    Quittner, A., Nicolais, C. J., & Saez-Flores, E. (2018). Integrating Patient-Reported Outcomes Into Research and Clinical Practice. In Kendig's Disorders of the Respiratory Tract in Children (pp. 231-240.e3). Elsevier Inc.. https://doi.org/10.1016/B978-0-323-44887-1.00013-4