{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T05:02:58Z","timestamp":1789448578243,"version":"build-2803163510"},"reference-count":35,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T00:00:00Z","timestamp":1789430400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Oncol."],"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To construct a multidimensional disease burden assessment system for children with neuroblastoma based on the Social Determinants of Health (SDH) theory, and to provide a reference for targeted assistance for rare diseases and for the optimization of health resource allocation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An indicator pool was initially developed based on the SDH framework through a structured literature review and a structured expert panel discussion. From November to December 2025, 20 of the 21 invited experts participated in two rounds of Delphi consultation to finalize the indicators, and the Analytic Hierarchy Process was employed to calculate indicator weights.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The effective response rates of the 2 rounds of questionnaire surveys were 95.23% (20\/21) and 100% (20\/20), respectively. The expert authority coefficient was 0.885, and Kendall\u2019s W coefficients were 0.123-0.452 and 0.118-0.236 for the 2 rounds (all P &amp;lt; 0.05), indicating high expert coordination. The constructed indicator system comprised 3 first-level indicators [personal disease burden (0.3325), family disease burden (0.5278), and social disease burden (0.1396)], 8 second-level indicators, and 32 third-level indicators.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The indicator system constructed in this study is a preliminary, theory-driven framework supported by expert consensus and internally consistent weighting. It can provide a reference for health administrative departments to identify high-burden families and formulate assistance policies, thereby supporting health governance across the full care cycle for children with rare diseases.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fonc.2026.1886324","type":"journal-article","created":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T04:26:58Z","timestamp":1789446418000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Development of a multidimensional disease burden assessment system for childhood neuroblastoma based on the social determinants of health theory"],"prefix":"10.3389","volume":"16","author":[{"given":"Xue","family":"Ban","sequence":"first","affiliation":[{"name":"Department of Nursing, Children\u2019s Hospital of Nanjing Medical University","place":["Nanjing, Jiangsu, 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