Ten Considerations for Integrating Patient-Reported Outcomes into Clinical Care for Childhood Cancer Survivors

Author:

Horan Madeline R.1,Sim Jin-ah12,Krull Kevin R.13,Ness Kirsten K.1,Yasui Yutaka1ORCID,Robison Leslie L.1,Hudson Melissa M.14ORCID,Baker Justin N.4ORCID,Huang I-Chan1ORCID

Affiliation:

1. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN 38105, USA

2. School of AI Convergence, Hallym University, Chuncheon 24252, Republic of Korea

3. Department of Psychology, St. Jude Children’s Research Hospital, Memphis, TN 38105, USA

4. Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN 38105, USA

Abstract

Patient-reported outcome measures (PROMs) are subjective assessments of health status or health-related quality of life. In childhood cancer survivors, PROMs can be used to evaluate the adverse effects of cancer treatment and guide cancer survivorship care. However, there are barriers to integrating PROMs into clinical practice, such as constraints in clinical validity, meaningful interpretation, and technology-enabled administration of the measures. This article discusses these barriers and proposes 10 important considerations for appropriate PROM integration into clinical care for choosing the right measure (considering the purpose of using a PROM, health profile vs. health preference approaches, measurement properties), ensuring survivors complete the PROMs (data collection method, data collection frequency, survivor capacity, self- vs. proxy reports), interpreting the results (scoring methods, clinical meaning and interpretability), and selecting a strategy for clinical response (integration into the clinical workflow). An example framework for integrating novel patient-reported outcome (PRO) data collection into the clinical workflow for childhood cancer survivorship care is also discussed. As we continuously improve the clinical validity of PROMs and address implementation barriers, routine PRO assessment and monitoring in pediatric cancer survivorship offer opportunities to facilitate clinical decision making and improve the quality of survivorship care.

Funder

U.S. National Cancer Institute

Publisher

MDPI AG

Subject

Cancer Research,Oncology

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