Sergio Licona, Syed Ahmer Hamid, Elizabeth Mutura, Alia Ahmad, Asim Bag, Simon Bailey, Ronnie E Baticulon, Frederick Boop, Eric Bouffet, Dian Cahyanti, Omar Chamdine, Kenneth T E Chang, Gargi Das, Michael C Dewan, Rosdali Diaz-Coronado, Jen Chun Foo, Veronica Giron, Alvaro Lassaletta, John T Lucas, Andres Morales-La Madrid, Regina M Navarro-Martin Del Campo, Nuha Omran, Diana S Osorio, Ibrahim Qaddoumi, Bilal Mazhar Qureshi, Noah D Sabin, Hend Sharafeldin, Vijay Sundar, Santhosh A Upadhyaya, Anna Vinitsky, Jefferson Wanyoike, Nuzhat Yasmeen, Daniel C Moreira
By providing a framework for evaluating quality across the continuum of PNO care, these indicators can aid benchmarking and guide quality improvement interventions. Prospective validation and assessment of their impact on patient outcomes are still needed.
BACKGROUND: Pediatric central nervous system (CNS) tumors are the leading cause of cancer-related death among children and adolescents globally. Despite the complex and multidisciplinary care needed, there is limited evidence on standardized quality indicators (QIs) for pediatric neuro-oncology (PNO).
METHODS: A modified Delphi process was conducted to develop consensus-based QIs for PNO. Candidate indicators were identified through a systematic review of published literature. After expert screening, indicators were evaluated by a multidisciplinary panel through 2 rounds of Delphi surveys. Consensus was defined as ≥75% agreement. A subsequent consensus meeting and tiering process were conducted to categorize the selected indicators.
RESULTS: The systematic review identified 35 studies containing 124 relevant indicators; these were subsequently refined to 63 candidate indicators for evaluation in 2 Delphi surveys. Thirty-two experts from 5 specialties and 15 countries participated in the consensus process. A consensus was established that included that indicators would have the following 3 characteristics: reflect the continuum of PNO care, be continuous variables, and be feasible to measure across diverse resource settings. Through 2 rounds of Delphi surveys, a total of 48 indicators met the consensus threshold. Indicators were subsequently consolidated to 31, following discussion and merging of overlapping items. Final indicators were categorized into 2 sets: 19 core indicators and 12 extended indicators.
CONCLUSIONS: By providing a framework for evaluating quality across the continuum of PNO care, these indicators can aid benchmarking and guide quality improvement interventions. Prospective validation and assessment of their impact on patient outcomes are still needed.