Quality of Survivorship in a Rare Disease: Clinicofunctional Outcome and Physical Activity in an Observational Cohort Study of 618 Long-Term Survivors of Ewing Sarcoma
| Autor: | Herbert Juergens, Henk van den Berg, Michael Paulussen, Corinna C. Seidel, Uta Dirksen, Andreas Ranft, Dieter Rosenbaum, Ann-Christin Warby, Ruth Ladenstein, Claudia Rossig, Christiane Hoffmann |
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| Přispěvatelé: | CCA - Cancer Treatment and Quality of Life, Paediatric Oncology |
| Rok vydání: | 2017 |
| Předmět: |
Adult
Male Cancer Research medicine.medical_specialty Toronto Extremity Salvage Score Adolescent Physical activity Bone Neoplasms Sarcoma Ewing Cohort Studies Young Adult 03 medical and health sciences 0302 clinical medicine Survivorship curve medicine Humans In patient Survivors 030212 general & internal medicine Child Exercise business.industry Objective measurement Prognosis medicine.disease Oncology Child Preschool 030220 oncology & carcinogenesis Quality of Life Physical therapy Female Sarcoma business Cohort study Rare disease |
| Zdroj: | Journal of clinical oncology, 35(15), 1704-+. American Society of Clinical Oncology |
| ISSN: | 1527-7755 0732-183X |
| DOI: | 10.1200/jco.2016.70.6226 |
| Popis: | Purpose Significantly improved survival rates in patients with Ewing sarcoma have raised interest in accessing the quality of long-term survivorship. In this study, subjective and objective measurement tools, preclassified as physical or mental scores, were used to assess clinicofunctional outcome and physical activity after intensive bone tumor treatment. Methods Long-term outcome of 618 survivors from consecutive Ewing sarcoma trials was assessed by the Toronto Extremity Salvage Score, Short-Form Health Survey (SF-36), Brief Symptom Inventory (BSI), and Rosenberg Self-Esteem Scale questionnaires and by the accelerometric StepWatch 3 Activity Monitor. Prospective measurements were correlated retrospectively with standardized primary trial data. Results were compared with 316 nonrandom healthy peers by using effect sizes ( d). Median observation time was 12.9 years from primary diagnosis (range, 3.7 to 31.2 years). Results Absolute subjective scores were moderate to good for survivors. Compared with control subjects, unfavorable outcome was shown on physical Toronto Extremity Salvage Score, SF-36 Physical Component Summary, and BSI-Somatization scales (| d| ≥ 0.50; P < .01), in contrast to SF-36 Mental Component Summary, BSI-Anxiety, BSI-Depression, and Rosenberg Self-Esteem Scale mental scales (| d| ≤ 0.31). Survivors were less active than control subjects, as demonstrated by a step count difference of 1,742 steps per day ( d = −0.43; P < .01); however, on average, the recommended level for an active lifestyle was achieved (≥ 10,000 steps). Location of pelvic tumor was the major inferior disease-specific prognostic factor in physical scores ( P < .01), whereas nondisease-specific inferior factors in questionnaires were older age and female sex ( P < .01). Conclusion Survivors of Ewing sarcoma apparently returned to a normal life with minor limitations. Observed reductions in physical scores should be a focus in future research to optimize treatment strategies to reduce a negative impact on the quality of survivorship. |
| Databáze: | OpenAIRE |
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