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Integration of Patient-reported Outcome Measures in Pediatric Hematology: A Qualitative Methods Study

Johann M I Graham1,2, Selina X Dong3, Julia Y Kinahan3

  • 1Lanaudière Regional Centre Hospital, Saint-Charles-Borromée.

Journal of Pediatric Hematology/Oncology
|April 24, 2022
PubMed

Insights

Pediatric hematology patients and families strongly prefer disease-specific patient-reported outcome measures (PROMs) and support electronic integration into clinical practice for better health evaluations.

Area of Science:

  • Pediatric Hematology
  • Health Outcomes Research
  • Digital Health

Background:

  • Patient-reported outcome measures (PROMs) are crucial for assessing patient experiences in healthcare.
  • Existing PROMs need evaluation for relevance and clinical integration in pediatric hematology.

Purpose of the Study:

  • To assess the relevance of existing PROMs for pediatric hematology patients.
  • To evaluate the receptivity of electronic PROM integration into clinical practice.

Main Methods:

  • Focus groups and interviews were conducted with pediatric patients (10), parents (19), and healthcare professionals (6).
  • Participants evaluated specific and generic PROMs for various nonmalignant hematological disorders.

Main Results:

  • Strong support was found for disease-specific PROMs like TranQol, CHO-KLAT, Haemo-QoL, PedsQL Sickle Cell Module, and Kids ITP Tool.
  • Electronic PROM integration, particularly web-based platforms, received universal support.
  • A preference for disease-specific over generic PROMs was evident.

Conclusions:

  • Disease-specific PROMs are highly relevant for pediatric hematology patients.
  • Electronic integration of PROMs is well-received and recommended for clinical practice.
  • Future development should focus on child-friendly, web-based platforms for standardized quality-of-life assessment.

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