Purpose <p>Prospective, multi-institutional surgical data collection in pediatric neuro-oncology remains limited despite substantial variation in operative and perioperative management across institutions. To address this, we are developing the NeuroPoint Alliance (NPA) Quality Outcomes Database (QOD) Pediatric Tumor Surgery Registry. Here, we used a modified Delphi process to define a core outcome set for the registry.</p> Methods <p>A modified Delphi study was conducted among pediatric neurosurgeons serving as site principal investigators for the proposed registry. Candidate data elements were rated on a 9-point Likert scale. Consensus for inclusion was predefined as ≥70% of respondents rating an item 7–9 and ≤15% rating it 1–3; consensus for exclusion was defined as the reverse. Items not reaching consensus in Round 1, along with new items derived from free-text responses, were re-evaluated in Round 2. Near-consensus items after Round 2 underwent discussion and re-rating in a final virtual round.</p> Results <p>In Round 1, 48 of 83 candidate items (57.8%) reached consensus for inclusion, while 35 advanced to Round 2. Fourteen additional candidate items were generated from free-text suggestions, resulting in 49 items evaluated in Round 2; 13 reached consensus for inclusion. Seventeen items were classified as near-consensus and advanced to the final round, in which 4 reached consensus for inclusion and 1 for exclusion. Across all three rounds, 66 items achieved consensus.</p> Conclusions <p>This modified Delphi study established a consensus-based core outcome set for the NPA QOD Pediatric Tumor Surgery Registry, providing a practical foundation for standardized, prospective, multicenter pediatric neurosurgical oncology data collection.</p>

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Developing a core outcome set for the NeuroPoint Alliance Quality Outcomes Database Pediatric Tumor Surgery Registry: a modified Delphi study

  • David S. Hersh,
  • Anthony L. Asher,
  • Mohamad Bydon,
  • Maliya Delawan,
  • Ian F. Pollack,
  • Jason S. Hauptman,
  • Eric M. Thompson,
  • Michael C. Dewan,
  • S. Hassan. A. Akbari,
  • Karl Balsara,
  • Randaline R. Barnett,
  • Marian M. Bercu,
  • Bruno P. Braga,
  • Daniel E. Couture,
  • Michael DeCuypere,
  • David Garcia,
  • Joanna Gernsback,
  • Kimberly M. Hamilton,
  • David H. Harter,
  • Joel Katz,
  • Kevin K. Kumar,
  • Daphne Li,
  • Neena I. Marupudi,
  • Laura M. Prolo,
  • Ann M. Ritter,
  • Cameron Sadegh,
  • Afshin Salehi,
  • Carolina Sandoval-Garcia,
  • Jignesh K. Tailor,
  • Tomoko Tanaka,
  • Albert Tu,
  • Scott D. Wait,
  • Jesse L. Winer,
  • Mark M. Souweidane

摘要

Purpose

Prospective, multi-institutional surgical data collection in pediatric neuro-oncology remains limited despite substantial variation in operative and perioperative management across institutions. To address this, we are developing the NeuroPoint Alliance (NPA) Quality Outcomes Database (QOD) Pediatric Tumor Surgery Registry. Here, we used a modified Delphi process to define a core outcome set for the registry.

Methods

A modified Delphi study was conducted among pediatric neurosurgeons serving as site principal investigators for the proposed registry. Candidate data elements were rated on a 9-point Likert scale. Consensus for inclusion was predefined as ≥70% of respondents rating an item 7–9 and ≤15% rating it 1–3; consensus for exclusion was defined as the reverse. Items not reaching consensus in Round 1, along with new items derived from free-text responses, were re-evaluated in Round 2. Near-consensus items after Round 2 underwent discussion and re-rating in a final virtual round.

Results

In Round 1, 48 of 83 candidate items (57.8%) reached consensus for inclusion, while 35 advanced to Round 2. Fourteen additional candidate items were generated from free-text suggestions, resulting in 49 items evaluated in Round 2; 13 reached consensus for inclusion. Seventeen items were classified as near-consensus and advanced to the final round, in which 4 reached consensus for inclusion and 1 for exclusion. Across all three rounds, 66 items achieved consensus.

Conclusions

This modified Delphi study established a consensus-based core outcome set for the NPA QOD Pediatric Tumor Surgery Registry, providing a practical foundation for standardized, prospective, multicenter pediatric neurosurgical oncology data collection.