Improving the quality of care in the molecular era for children and adolescents with medulloblastoma
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T. de Rojas [3] ; M. Puertas [1] ; F. Bautista [2] ; I. de Prada [2] ; M. Á. López-Pino [2] ; B. Rivero [2] ; C. Gonzalez-San Segundo [4] ; M. Gonzalez-Vicent [2] ; A. Lassaletta [2] ; L. Madero [2] ; L. Moreno [2]
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[1] Universidad Autónoma de Madrid
Universidad Autónoma de Madrid
Madrid, España
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[2] Hospital Infantil Universitario Niño Jesus de Madrid
Hospital Infantil Universitario Niño Jesus de Madrid
Madrid, España
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[3] European Organisation for Research and Treatment of Cancer, Bélgica
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[4] Hospital General Uiversitario Gregorio Marañón
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- Localización: Clinical & translational oncology, ISSN 1699-048X, Vol. 21, Nº. 12 (December), 2019, págs. 1687-1698
- Idioma: inglés
- Texto completo no disponible (Saber más ...)
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Resumen
Purpose Elevated mortality and morbidity rates persist in pediatric patients with medulloblastoma. We present a clinical audit of a real-world cohort of patients in search for pragmatic measures to improve their management and outcome.
Methods/patients All pediatric patients with medulloblastoma treated between 2003 and 2016 at a Spanish reference center were reviewed. In the absence of internationally accepted quality indicators (QIs) for pediatric CNS tumors, diagnostic, therapeutic, survival, and time QIs were defined and assessed.
Results Fifty-eight patients were included, 24% were younger children (< 3 years), 36% high risk (anaplastic, metastasis, or surgical residue > 1.5 cm2), and 40% standard risk. Five-year OS was 59.2% (95% CI 47–75); 5-year PFS 36.4% (95% CI 25–53). Five main areas of quality assurance were identified: diagnosis, global strategy, frontline treatment modalities, outcomes, and long-term and end-of-life care. A set of 34 QIs was developed and applied. Lack of central pathology review, delay in the incorporation of novel molecular markers, and absence of a neurocognitive and quality-of-life evaluation program were some of the audit findings.
Conclusions This real-world research study resulted in the development of a pragmatic set of QIs, aimed to improve clinical audits and quality of care given to children and adolescents with medulloblastoma. We hope that our findings will serve as a reference to further develop a quality assurance system with specific QIs for pediatric CNS tumors in the future and that this will ultimately improve the survival and quality of life of these patients.
