Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy (original) (raw)
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Linking EORTC QLQ-C-30 and PedsQL/PEDQOL physical functioning scores in patients with osteosarcoma
European Journal of Cancer, 2022
The available questionnaires for quality-of-life (QoL) assessments are age-group specific, limiting comparability and impeding longitudinal analyses. The comparability of measurements, however, is a necessary condition for gaining scientific evidence. To overcome this problem, we assessed the viability of harmonising data from paediatric and adult patient-reported outcome (PRO) measures. Method: To this end, we linked physical functioning scores from the Paediatric Quality of Life Inventory (PedsQL) and the Paediatric Quality of Life Questionnaire (PEDQOL) to the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30) for adults. Samples from the EURAMOS-1 QoL sub-study of 75 (PedsQL) and 112 (PEDQOL) adolescent osteosarcoma patients were concurrently administered both paediatric and adult questionnaires on 98 (PedsQL) and 156 (PEDQOL) occasions. We identified corresponding scores using the single-group equipercentile linking method. Results: Linked physical functioning scores showed sufficient concordance to the EORTC QLQ-C30: Lin's r Z 0.74 (PedsQL) and Lin's r Z 0.64 (PEDQOL). Conclusion: Score linking provides clinicians and researchers with a common metric for assessing QoL with PRO measures across the entire lifespan of patients.
Journal of Global Oncology, 2017
Purpose Health-related quality of life (HRQOL) improves throughout treatment of patients with nonmetastatic osteosarcoma. We compared HRQOL for patients in the United States and Chile treated on an international trial (OS99) with polychemotherapy and surgery, and we assessed the relationships among HRQOL measures, event-free survival (EFS), and overall survival (OS). Materials and Methods Patients with newly diagnosed, localized osteosarcoma and their parents completed three HRQOL instruments (PedsQL v.4, PedsQL Cancer v.3, and Symptom Distress Scale [SDS]). Data were collected at four time points throughout therapy. Repeated measures models were used to investigate the effect of treatment site on instrument scores. The log-rank test examined the impact of treatment site on survival outcomes, and Cox proportional hazards regression models evaluated baseline HRQOL measures as predictors of EFS and OS. Results Of 71 eligible patients, 66 (93%) participated in the HRQOL studies in the ...
Journal of Surgical Oncology
PURPOSE: To translate the Dutch DUX questionnaire for lower extremity bone tumor patients (Bt-DUX), a disease-specific quality of life (QoL) instrument, into the English (UK) language and preliminary validate the English version in patients who were treated for lower-extremity bone tumors. METHODS: Adaptation and translation process included forward translation, back-translation, and a review of the back-translation by an expert committee. Internal consistency and validity of the translated questionnaire were examined in a sample of adolescents treated for lower extremity osteosarcoma in the United Kingdom. Assessments included the Bt-DUX, the Toronto Extremity Salvage Score (TESS), the Short Form (SF)-36, and the TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL). RESULTS: Seventeen patients (7 ♂ and 10 ♀), median age 19.9 (range: 16-25) years completed the questionnaires. Mean Bt-DUX score was 38.8 (range: 23-78), with Cronbach's α being 0.95 domain-total correlati...
Pediatric Blood & Cancer, 2008
BackgroundEvaluation of physical functioning is an important tool for planning rehabilitation. Instruments need to be culturally adapted for use in non‐English speaking countries. The aim of this study was to culturally adapt, including translation and preliminary validation, the Toronto extremity salvage score (TESS) for Brazil, in a sample of adolescents and young adults treated for lower extremity osteosarcoma.ProcedureThe process included two independent forward translations of TESS questionnaire, consensus between translators on a forward translation, back‐translation by two independent translators, and a review of the back‐translations. Internal consistency of the TESS and known groups validity were also evaluated.ResultsInternal consistency for the 30 item TESS was high (coefficient alpha = 0.87). TESS score ranges from 0 to 100. Forty‐eight patients completed the questionnaire and scores ranged from 56 to 100 (mean score: 89.6). Patients receiving no pain medications scored ...
European Journal of Cancer, 2009
Health-related quality of life (HRQOL) of paediatric patients with osteosarcoma has not been documented longitudinally during treatment. Aims of this prospective study were to assess treatment effects on patients’ HRQOL at diagnosis, during therapy and after completion of therapy, to assess sex- and age-related differences in HRQOL ratings and to assess differences between patients’ and parents’ reports.Sixty-six patients (median age, 13.4 years) with newly diagnosed, localised disease completed three HRQOL instruments, and their parents completed two of the same instruments at diagnosis, before surgery (Week 12), at Week 23 and a median of 20 weeks after treatment completion.Significant improvements in most domains and worsening of nausea were reported by patients and parents from diagnosis to Weeks 12 and 23. Symptom distress decreased from diagnosis to Weeks 12 and 23 in 81% and 64% of patients, respectively. There were no sex- and few age-related differences in scores. Scores from patients and parents achieved good agreement.The HRQOL of patients improves during aggressive treatment for non-metastatic osteosarcoma, except in the domain of nausea. Clinicians can use these findings to prepare their patients for the distressing symptoms that they will likely experience at certain time points and to provide reassurance that these will significantly improve.
Sarcoma, 2012
The aim of the study was to assess health-related quality of life (HRQoL) among metastatic soft tissue (mSTS) or bone sarcoma (mBS) patients who had attained a favourable response to chemotherapy. We employed the EORTC QLQ-C30, the 3-item Cancer-Related Symptoms Questionnaire, and the EQ-5D instrument. HRQoL was evaluated overall and by health state in 120 mSTS/mBS patients enrolled in the SABINE study across nine countries in Europe and North America. Utility was estimated from responses to the EQ-5D instrument using UK population-based weights. The mean EQ-5D utility score was 0.69 for the pooled patient sample with little variation across health states. However, patients with progressive disease reported a clinically significant lower utility (0.56). Among disease symptoms, pain and respiratory symptoms are common. This study showed that mSTS/mBS is associated with reduced HRQoL and utility among patients with metastatic disease.
Quality of Life Research, 2014
The aim of our study was to undertake a prospective validation study of the Polish version of the European Organization for Research and Treatment of Cancer (EORTC) bone metastases (QLQ-BM22) module used alongside the EORTC core measure. The translated module was pilot-tested according to the established EORTC guidelines. Patients with histological confirmation of malignancy and bone metastases, diagnosed by imaging studies, were eligible for the study. All patients filled out the Polish version of the QLQ-BM22 module in addition to QLQ-C30 and a demographic questionnaire. Standard validity and reliability analyses were performed. One hundred and fifty-five patients were enrolled into the study, including 94 women (60.7 %) and 61 men (mean age ± SD; 59.1 ± 12.1). Cronbach's alpha coefficients, range 0.68-0.93, showed positive internal consistency. Re-test was undertaken with fifty patients (32.3 %). Interclass correlations for the EORTC QLQ-BM22 ranged from 0.91 to 0.93 and proved sufficient test-retest reliability. Satisfactory convergent and discriminant validity in multi-trait scaling analyses was seen. Our study provides new and robust evidence which shows that the Polish version of the QLQ-BM22 module is a valid and reliable instrument for measuring health-related quality of life in patients with bone metastases. It is suitable for use in clinical trials and in research.