Improving the quality of care in the molecular era for children and adolescents with medulloblastoma View Full Text


Ontology type: schema:ScholarlyArticle     


Article Info

DATE

2019-04-01

AUTHORS

T. de Rojas, M. Puertas, F. Bautista, I. de Prada, M. Á. López-Pino, B. Rivero, C. Gonzalez-San Segundo, M. Gonzalez-Vicent, A. Lassaletta, L. Madero, L. Moreno

ABSTRACT

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. More... »

PAGES

1-12

Identifiers

URI

http://scigraph.springernature.com/pub.10.1007/s12094-019-02101-2

DOI

http://dx.doi.org/10.1007/s12094-019-02101-2

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1113172548

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/30937816


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