{"doi":"10.1093/neuonc/noaa042","title":"Long-term health-related quality of life in pediatric brain tumor survivors receiving proton radiotherapy at &amp;lt;4 years of age","abstract":"BACKGROUND: The purpose of this analysis is to report long-term health-related quality of life (HRQoL) among brain tumor survivors treated with proton therapy (PRT) at a very young age. METHODS: Fifty-nine children <4 years old received PRT between 2000 and 2011. Forty families participated. HRQoL was assessed by child self-report (CSR; age ≥5) and parent proxy report (PPR; age 2+) using the PedsQL Core. RESULTS: The median age was 2.5 years (range, 0.3-3.8) at PRT and 9.1 years (5.5-18) at last follow-up. The most common diagnoses were ependymoma (n = 22) and medulloblastoma (n = 7). Median follow-up is 6.7 years (3-15.4). Follow-up mean CSR and PPR scores were: total core (78.4 and 72.9), physical (82.9 and 75.2), psychosocial (76.0 and 71.6), emotional (74.4 and 70.7), social (81.2 and 75.1), and school (72.4 and 69.9). Parent-reported HRQoL fell within a previously defined range for healthy children in 37.5% of patients, and for children with severe health conditions in 45% of patients. PPR HRQoL was stable from baseline to last follow-up among all domains except for social functioning. History of gastrostomy tube was significantly associated with poorer CSR and PPR HRQoL on multivariable analysis. Ninety percent of children functioned in a regular classroom, 14 (36%) used a classroom aid, 9 (23%) used an outside tutor, and 18 (46%) had an individualized education plan. CONCLUSION: Long-term HRQoL among brain tumor survivors treated with PRT at a very young age is variable, with over a third achieving HRQoL levels commensurate with healthy children. KEY POINTS: 1. One third of survivors reported long-term HRQoL scores comparable to those of healthy children.2. Treatment for hydrocephalus or a feeding tube was associated with significantly lower HRQoL.3. Total core HRQoL scores remained stable from baseline to last follow-up.","journal":"Neuro-Oncology","year":2020,"id":96355,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":34,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.7677,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2020-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":478290,"name":"Saveli Goldberg","orcid":null,"position":1,"is_corresponding":false},{"id":478291,"name":"Nancy J. Tarbell","orcid":null,"position":2,"is_corresponding":false},{"id":477585,"name":"Miranda P. Lawell","orcid":"0009-0007-2529-9407","position":3,"is_corresponding":false},{"id":85408,"name":"Sara L. Gallotto","orcid":"0000-0002-6258-2283","position":4,"is_corresponding":false},{"id":477586,"name":"Elizabeth A. Weyman","orcid":"0000-0002-0525-7337","position":5,"is_corresponding":false},{"id":378970,"name":"Karen Kuhlthau","orcid":"0000-0001-7315-3882","position":6,"is_corresponding":false},{"id":380156,"name":"David H. Ebb","orcid":"0000-0002-6396-8479","position":7,"is_corresponding":false},{"id":290989,"name":"Shannon M. MacDonald","orcid":"0000-0001-9092-1337","position":8,"is_corresponding":false},{"id":477587,"name":"Torunn I. Yock","orcid":"0000-0001-6408-8011","position":9,"is_corresponding":false},{"id":473482,"name":"Bree R. Eaton","orcid":"0000-0003-2431-2933","position":0,"is_corresponding":true}],"reference_count":34,"raw_metadata":null,"created_at":"2026-07-18T22:34:34.781847Z","pmid":"32064512","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}