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Advances in Radiation Oncology 2023[This corrects the article DOI: 10.1016/j.adro.2023.101189.].
Erratum to: Young S, Phaterpekar K, Tsang DS, Boldt G, Bauman GS. Proton Radiotherapy for Management of Medulloblastoma: A Systematic Review of Clinical Outcomes. 2023;8:101189.
[This corrects the article DOI: 10.1016/j.adro.2023.101189.].
PubMed: 37465005
DOI: 10.1016/j.adro.2023.101232 -
Cancer Reports (Hoboken, N.J.) Jun 2022The Leila Rose Foundation ("the Foundation") was established in April 2011, to address financial toxicity as well as the gaps in knowledge and support for families...
BACKGROUND
The Leila Rose Foundation ("the Foundation") was established in April 2011, to address financial toxicity as well as the gaps in knowledge and support for families affected by a rare childhood cancer diagnosis in Australia.
AIM
The aim of this brief report is to analyze the diagnostic trends surrounding the rare cancer diagnoses for patients referred to the Foundation over the past decade and to present case studies evaluating the role of the Foundation's Family Support Coordinator in providing tailored, individualized support for families.
METHODS
Eligibility for family support is restricted to children ≤ 14 years of age at diagnosis with a cancer that has an incidence less than 5% of all childhood cancers in Australia as reflected by national registry data. The analysis of diagnostic trends in this report, was based upon a systematic review of enrolment records. The role of the Family Support Coordinator is presented in four different case studies.
RESULTS
As at 1 November 2020, the Foundation has supported 197 families affected by rare childhood cancer. Financial support of $825,000 has been provided directly to these families. Enrollment records demonstrate that 35 patients representing 18% of all enrollments have had a unique diagnosis that has not been recorded for any other enrolled patient highlighting that these diagnoses are very rare. The most frequent diagnoses have included Medulloblastoma, Ewing's Sarcoma and Wilm's Tumor (20, 19, 19 patients respectively). The Family Support Coordinator role has provided individualized support for families which has been greatly appreciated based upon ad hoc family feedback.
CONCLUSIONS
Challenges remain in terms of improving outcomes for families affected by rare childhood cancer. The Foundation is committed to leaving no stone unturned and delivering its unique support services to families in order to reduce the burden caused by a rare childhood cancer diagnosis both now and in the future.
Topics: Australia; Child; Humans; Incidence; Neoplasms; Registries
PubMed: 33939318
DOI: 10.1002/cnr2.1381