Patient-reported outcomes in childhood head and neck rhabdomyosarcoma survivors and their relation to physician-graded adverse events—A multicenter study using the FACE-Q Craniofacial module

Michèle Morfouace, Marinka L.F. Hol, Reineke A. Schoot, Olga Slater, Daniel J. Indelicato, Frédéric Kolb, Ludwig E. Smeele, Johannes H.M. Merks, Charlene Rae, Heleen Maurice-Stam, Anne F. Klassen, Martha A. Grootenhuis

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)

Abstract

Introduction: Adverse events (AE) of treatment are prevalent and diverse in head and neck rhabdomyosarcoma (HNRMS) survivors. These AEs are often reported by physicians; however, patients' perceptions of specific AE are not well known. In this study, we explored patient-reported outcomes measuring appearance, health-related quality of life (HRQOL), and facial function in HNRMS survivors. Second, we assess the relationship between physician grading of AE and patient reporting. Materials and Methods: Survivors of pediatric HNRMS, diagnosed between 1993 and 2017, who were at least 2 years after completing treatment were invited to an outpatient clinic as part of a multicenter cross-sectional cohort study. At the outpatient clinics, survivors aged ≥8 years filled out the FACE-Q Craniofacial module; a patient-reported outcome instrument measuring issues specific to patients with facial differences. AE were systematically assessed by a multidisciplinary team based on the Common Terminology Criteria of Adverse Events system. Results: Seventy-seven survivors with a median age of 16 years (range 8–43) and median follow-up of 10 years (range 2–42) completed the questionnaire and were screened for AEs. Patient-reported outcomes varied widely between survivors. Many survivors reported negative consequences: 82% on appearance items, 81% on HRQOL items, and 38% on facial function items. There was a weak correlation between physician-scored AEs and the majority of patient-reported outcomes specific for those AEs. Conclusions: Physician-graded AEs are not sufficient to provide tailored care for HNMRS survivors. Findings from this study highlight the importance of incorporating patient-reported outcome measures in survivorship follow-up.

Original languageEnglish
JournalCancer Medicine
DOIs
Publication statusPublished - 2022

Keywords

  • cancer survivors
  • late adverse effects
  • patient-reported outcome measures
  • quality of life
  • rhabdomyosarcoma
  • survivorship

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