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

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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. / Morfouace, Michèle ; Hol, Marinka L. F.; Schoot, Reineke A. et al.

In: Cancer medicine, 2022.

Research output: Contribution to journal › Article › Academic › peer-review

BibTeX

@article{3c2874d51e584a4492b8f534a97cb430,

title = "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",

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.",

keywords = "cancer survivors, late adverse effects, patient-reported outcome measures, quality of life, rhabdomyosarcoma, survivorship",

author = "Mich{\`e}le Morfouace and Hol, {Marinka L. F.} and Schoot, {Reineke A.} and Olga Slater and Indelicato, {Daniel J.} and Fr{\'e}d{\'e}ric Kolb and Smeele, {Ludwig E.} and Merks, {Johannes H. M.} and Charlene Rae and Heleen Maurice-Stam and Klassen, {Anne F.} and Grootenhuis, {Martha A.}",

note = "Funding Information: This research was supported by the Dutch Children Cancer free foundation (KIKA) under grant number 297. Publisher Copyright: {\textcopyright} 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.",

year = "2022",

doi = "10.1002/cam4.5252",

language = "English",

journal = "Cancer medicine",

issn = "2045-7634",

publisher = "John Wiley and Sons Ltd",

}

RIS

TY - JOUR

T1 - 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

AU - Morfouace, Michèle

AU - Hol, Marinka L. F.

AU - Schoot, Reineke A.

AU - Slater, Olga

AU - Indelicato, Daniel J.

AU - Kolb, Frédéric

AU - Smeele, Ludwig E.

AU - Merks, Johannes H. M.

AU - Rae, Charlene

AU - Maurice-Stam, Heleen

AU - Klassen, Anne F.

AU - Grootenhuis, Martha A.

N1 - Funding Information: This research was supported by the Dutch Children Cancer free foundation (KIKA) under grant number 297. Publisher Copyright: © 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - cancer survivors

KW - late adverse effects

KW - patient-reported outcome measures

KW - quality of life

KW - rhabdomyosarcoma

KW - survivorship

UR - http://www.scopus.com/inward/record.url?scp=85139426430&partnerID=8YFLogxK

U2 - 10.1002/cam4.5252

DO - 10.1002/cam4.5252

M3 - Article

C2 - 36208014

JO - Cancer medicine

JF - Cancer medicine

SN - 2045-7634

ER -

ID: 26387850

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