RESUMEN
BACKGROUND: Fatigue, cognitive impairment, anxiety, depression, and sleep disturbance are cancer-related behavioral symptoms (CRBS) that may persist years after early-stage breast cancer (BC), affecting quality of life. We aimed at generating a predictive model of long-term CRBS clusters among BC survivors four years post-diagnosis. METHODS: Patients with early-stage BC were included from the CANcer TOxicity (NCT01993498). Our outcome was the proportion of patients reporting CRBS clusters four years post-diagnosis (≥3 severe CRBS). Predictors, including clinical, behavioral, and treatment-related characteristics, Behavioral Symptoms Score (BSS; 1 point per severe CRBS at diagnosis) and a pro-inflammatory cytokine (IL-1b, IL-6, TNFα)-genetic risk score, were tested using multivariable logistic regression, implementing bootstrapped Augmented Backwards Elimination. A two-sided p-value < 0.05 defined statistical significance. RESULTS: In the development cohort (N = 3555), 642 patients (19.0%) reported a cluster of CRBS at diagnosis and 755 (21.2%) did so four years post-diagnosis. Younger age (adjusted Odds Ratio [aOR] for 1-year decrement: 1.012; 95% Confidence Interval [CI] 1.003-1.020); previous psychiatric disorders (aOR vs no: 1.27; 95% CI 1.01-1.60); and BSS (aOR ranged from 2.17 [1.66-2.85] for BSS = 1 vs 0 to 12.3 [7.33-20.87] for BSS = 5 vs 0) were predictors of reporting a cluster of CRBS (AUC 0.73 [95%CI 0.71-0.75]). Genetic risk score was not predictive of CRBS. Results were confirmed in the validation cohort (N = 1533). CONCLUSION: Younger patients with previous psychiatric disorders and higher baseline symptom burden have greater risk of long-term clusters of CRBS. Our model might be implemented in clinical pathways to improve management and test the effectiveness of risk mitigation interventions among breast cancer survivors.
RESUMEN
PURPOSE: In this study, we evaluated readability and understandability of nine French-language Patient-Reported Outcome Measures (PROMs) that are currently used in a contemporary longitudinal cohort of breast cancer survivors as part of an effort to improve equity in cancer care and research. METHODS: Readability of PROMs was assessed using the Flesh Reading Ease Score (FRES), the Gunning's Fog Index (FOG), and the FRY graphics. Readability was considered ideal if mean score ≤ 6th-grade level and acceptable if between 6th and 8th grade. Understandability was evaluated using the Patient Education Materials Assessment Tool and defined as ideal if PEMAT ≥ 80%. The Evaluative Linguistic Framework for Questionnaires (ELF-Q) provided additional qualitative elements to assess understandability. Plain-language best practice was met if both readability and understandability were ideal. RESULTS: None of the 9 PROMs evaluated had ideal readability scores and only 1 had an acceptable score. Understandability ranged from 55% to 91%, and only 3 PROMs had ideal scores. ELF-Q identified points for improvement in several understandability dimensions of the PROMs. None of the instruments met the definition of plain-language best practice. CONCLUSION: None of the studied PROMs met the standards of readability and understandability. Future development and translation of PROMs should follow comprehensive linguistic and cultural frameworks to ensure plain-language standards and enhance equitable patient-centered care and research.
Asunto(s)
Comprensión , Medición de Resultados Informados por el Paciente , Humanos , Femenino , Encuestas y Cuestionarios , Neoplasias de la Mama/psicología , Estudios de Cohortes , Supervivientes de Cáncer/psicología , Persona de Mediana Edad , Estudios Longitudinales , Alfabetización en Salud , Supervivencia , Calidad de VidaRESUMEN
This cohort study assesses quality-of-life trajectories up to 6 years after breast cancer diagnosis among individuals in France.