Newton Jade C, Halkett Georgia K B, Wright Cameron, O 'Connor Moira, Nowak Anna K, Moorin Rachael
Curtin School of Nursing, Curtin University, Bentley, WA, Australia.
Curtin School of Population Health, Curtin University, Bentley, WA, Australia.
Neurooncol Pract. 2024 Oct 26;12(2):231-245. doi: 10.1093/nop/npae107. eCollection 2025 Apr.
This study aimed to describe the out-of-pocket costs incurred by patients diagnosed with high-grade glioma (HGG) and their carers in the standard care arm of the Care-IS trial in the 6 to 8 months following their diagnosis.
Carers completed monthly cost surveys detailing the out-of-pocket costs incurred by patients and carers over a 6-month period. Seventy carers reported out-of-pocket costs at baseline (within 2 months following patient diagnosis), and a maximum of 50% of participants reported costs in any subsequent month. Costs were adjusted to 2023 AUD and reported as medians with an interquartile range. Demographic factors were assessed to determine if any were significantly associated with being in the first or fourth quartile of total out-of-pocket costs at baseline.
Median monthly costs for patient-carer dyads were highest at baseline ($535[IQR:$170-$930]), and 2 months post-recruitment ($314 [IQR:$150-$772]). The largest contributors to patient-carer costs were patient health service use and patient medications. Patient and carer health service use and medication costs varied over time. The median health service use and medication out-of-pocket costs for patients and carers were mostly below $100 per month; however, there was a large variance in the upper 75th percentile for these cost categories. No factors were significantly associated with higher baseline out-of-pocket costs.
A HGG diagnosis has a significant and sustained financial impact on people who are diagnosed and their carers. Patients experience significant additional costs relating to their diagnosis and travel to receive care, and their carers also continue to experience sustained costs whilst managing the additional tasks associated with informal caregiving.
本研究旨在描述在Care-IS试验的标准治疗组中，被诊断为高级别胶质瘤（HGG）的患者及其护理人员在诊断后的6至8个月内自付费用的情况。
护理人员每月完成成本调查，详细列出患者和护理人员在6个月内产生的自付费用。70名护理人员在基线时（患者诊断后的2个月内）报告了自付费用，在随后的任何一个月中，最多50%的参与者报告了费用。成本调整为2023澳元，并以中位数和四分位间距报告。评估人口统计学因素，以确定是否有任何因素与基线时自付总费用的第一或第四四分位数显著相关。
患者-护理人员二元组的每月成本中位数在基线时最高（535澳元[四分位间距：170 - 930澳元]），招募后2个月时为314澳元[四分位间距：150 - 772澳元]。患者-护理人员成本的最大贡献者是患者的医疗服务使用和患者药物。患者和护理人员的医疗服务使用及药物成本随时间变化。患者和护理人员的医疗服务使用和药物自付费用中位数大多每月低于100澳元；然而，这些成本类别的第75百分位数存在很大差异。没有因素与较高的基线自付费用显著相关。
HGG诊断对被诊断者及其护理人员有重大且持续的经济影响。患者在诊断和前往接受治疗方面会产生大量额外费用，其护理人员在管理与非正式护理相关的额外任务时也会持续产生费用。
