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

• Published in: Cancer medicine (Malden, MA) Vol. 12; no. 4; pp. 4739 - 4750
• Main Authors: Morfouace, Michèle, Hol, Marinka L. F., Schoot, Reineke A., Slater, Olga, Indelicato, Daniel J., Kolb, Frédéric, Smeele, Ludwig E., Merks, Johannes H. M., Rae, Charlene, Maurice‐Stam, Heleen, Klassen, Anne F., Grootenhuis, Martha A.
• Format: Journal Article
• Language: English
• Published: United States John Wiley & Sons, Inc 01-02-2023; John Wiley and Sons Inc; Wiley
• Subjects: Adolescent; Adult; Adverse events; Age; cancer survivors; Child; Children; Clinical outcomes; Clinics; Cross-Sectional Studies; Gender; Head and neck; Hearing loss; Humans; Independent sample; late adverse effects; Patient Reported Outcome Measures; Patients; Pediatrics; Physicians; Quality of Life; Radiation therapy; Rhabdomyosarcoma; Rhabdomyosarcoma - therapy; Rhabdomyosarcoma, Embryonal; Speech; Standard deviation; Surgery; Survival; Survivors; survivorship; Young Adult; Netherlands; United Kingdom > UK; France; United States > US; survivorship; quality of life; rhabdomyosarcoma; cancer survivors; patient-reported outcome measures; late adverse effects
• ISSN: 2045-7634; 2045-7634
• DOI: 10.1002/cam4.5252

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.
Physician graded adverse effects are not sufficient to provide tailored care for head and neck cancer survivors. Patient reported outcome scores for appearance, health related quality of life and facial function was reported negatively by many survivors. This study highlights the importance of incorporating patient reported outcome measures in follow‐up clinic.