Dataset Information

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.

SUBMITTER: Morfouace M

PROVIDER: S-EPMC9972026 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

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Publications

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 M Hol Marinka L F MLF Schoot Reineke A RA Slater Olga O Indelicato Daniel J DJ Kolb Frédéric F Smeele Ludwig E LE Merks Johannes H M JHM Rae Charlene C Maurice-Stam Heleen H Klassen Anne F AF Grootenhuis Martha A MA

Cancer medicine 20221007 4

<h4>Introduction</h4>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.<h4>Materials ...[more]

PMID: 36208014

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Project description:ImportanceAesthetic eye treatments can dramatically change a person's appearance, but outcomes are rarely measured from the patient perspective. The patient perspective could be measured using an eye-specific patient-reported outcome measure.ObjectiveTo describe the development and psychometric evaluation of FACE-Q scales and an adverse effect checklist designed to measure outcomes following cosmetic eye treatments.Design, setting, and participantsPretreatment and posttreatment patients 18 years and older who had undergone facial aesthetic procedures were recruited from plastic surgery clinics in United States and Canada and completed FACE-Q scales between June 6, 2010, and July 14, 2014. We used Rasch Measurement Theory, a modern psychometric approach, to refine the scales and to examine psychometric properties.Main outcomes and measuresThe FACE-Q Eye Module, which has 4 scales that measure appearance of the eyes, upper and lower eyelids, and eyelashes. Scale scores range from 0 (worst) to 100 (best). The module also includes a checklist measuring postblepharoplasty adverse effects.ResultsOverall, 233 patients (81% response rate) 18 years and older participated. Adverse effects included being bothered by eyelid scars, dry eyes, and eye irritation. In Rasch Measurement Theory analysis, each scale's items had ordered thresholds and good item fit. Person Separation Index and Cronbach α were greater than or equal to 0.83. Higher scores on the eye scales correlated with fewer adverse effects (range, -0.26 to -0.36). In the pretreatment group, older age correlated with lower scores (range, -0.42 to -0.51) on the scales measure appearance of the eyes and upper and lower eyelids. Compared with the pretreatment group, posttreatment participants reported significantly better scores on the scales measuring appearance of eyes overall, as well as upper and lower eyelids.Conclusions and relevanceThe FACE-Q Eye Module can be used in clinical practice, research and quality improvement to collect evidence-based outcomes data.Level of evidenceNA.

Project description:PurposeAccurately tracking health-related quality-of-life after radical prostatectomy is critical to counseling patients and improving technique. Physicians consistently overestimate functional recovery. We measured concordance between surgeon-assessed and patient-reported outcomes and evaluated a novel method to provide feedback to surgeons.Materials and methodsMen treated with radical prostatectomy self-completed the International Index of Erectile Function-6 questionnaire at each postoperative visit. Separately, physicians graded sexual function on a 5-point scale. International Index of Erectile Function -6 score<22 and grade ≥3 defined patient-reported and physician-assessed erectile dysfunction (ED), respectively. Feedback on concordance was given to physicians starting in May 2013 with the implementation of the Amplio feedback system. Chi-square tests were used to assess agreement proportions and linear regression to evaluate changes in agreement after implementation.ResultsFrom 2009 to 2015, 3,053 men completed at least 1 postprostatectomy questionnaire and had a concurrent independent physician-reported outcome. Prior to implementation of feedback in 2013, patients and physicians were consistent as to ED 83% of the time; in 10% of cases, physicians overestimated function; in 7% of cases, physicians, but not patients reported ED. Agreement increased after implementation of feedback but this was not statistically significant, likely owing to a ceiling effect. Supporting this hypothesis, increase in agreement postfeedback was greater during late follow-up (≥12mo), where baseline agreement was lower compared to earlier follow-up.ConclusionsAgreement was higher than expected at baseline; implementation of feedback regarding discrepancies between patient-reported and physician-assessed outcomes did not further improve agreement significantly. Our observed high rate of agreement may be partly attributed to our institutional practice of systematically capturing patient-reported outcomes as part of normal clinical care.

Project description:Rhabdomyosarcoma (RMS) is rare in adults, with a significantly worse prognosis than its pediatric counterpart. Radiotherapy (RT) plays a significant role in treating head and neck RMS (HNRMS), but the outcomes of conventional RT are limited by the complex anatomy and unfavorable pathology subtypes of the adult H&N RMS. Here, we aim to report the effectiveness and safety of carbon-ion beam RT (CIRT), either alone or in combination with proton radiotherapy (PRT) in the management of adult HNRMS. Fifteen adult patients with HNRMS were enrolled on a prospective registry protocol between 06/2015 and 12/2019. Eight patients presented with parameningeal tumors, and eight had unfavorable pathology subtypes [alveolar =7, not otherwise specified (NOS) =1]. Eleven patients had gross tumors before the start of RT (volume range, 46.1-137.6 cm3). Two patients failed the earlier RT. All except for one patient received multi-drug chemotherapy. The median absolute dose of particle beam RT was 70.0 Gy [relative biological effectiveness (RBE)]. With a median follow-up of 21 months, local or distant recurrence occurred in three and four patients, respectively, and two added patients had both local and distant failure. One patient died of distant metastasis (DM), and another died of an unrelated condition. The 1- and 2-year overall survival (OS), local relapse-free survival (LRFS), distant metastasis-free survival (DMFS), and progression-free survival (PFS) rates were 87.5% and 70.0%, 92.3% and 67.1%, 72.2% and 54.2%, and 65.0% and 24.4%, respectively, for the entire cohort. Both patients who failed earlier RT and received salvage CIRT developed DM but were alive at last follow-up. No acute toxicity of ≥ grade 3 or late toxicity of ≥ grade 2 was observed. CIRT, either used alone or in combination with PRT, is not only feasible and safe but also useful in local disease control for HNRMS. DM is the most important cause of treatment failure; thus, more effective systemic treatment is needed to improve the prognosis of HNRMS further.

Dataset Information

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.

Introduction

Materials and methods

Results

Conclusions

Publications

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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