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“你愿意为健康付出什么代价?”:晚期癌症患者对药物获取的看法,包括医用大麻、经济毒性等方面。

'What price do you put on your health?': Medical cannabis, financial toxicity and patient perspectives on medication access in advanced cancer.

机构信息

School of Social Science, University of Queensland, St Lucia, Queensland, Australia.

Mater Health Services, Mater Research Institute, University of Queensland, Brisbane, Queensland, Australia.

出版信息

Health Expect. 2023 Feb;26(1):160-171. doi: 10.1111/hex.13642. Epub 2022 Nov 6.

Abstract

INTRODUCTION

Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia.

METHODS

This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision-making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions.

RESULTS

Overall, participants supported making MC legally accessible as a prescription-only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict-if found effective-that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access.

CONCLUSIONS

These findings suggest that-despite a relatively robust universal healthcare system-Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears-and the systems sustaining them-may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices.

PATIENT OR PUBLIC CONTRIBUTION

A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision-making, perceptions and experiences.

摘要

简介

2016 年澳大利亚通过立法,允许在研究和医疗目的方面有限制地使用大麻,自此之后,在癌症领域调查药用大麻(MC)对缓解症状负担的有效性的随机临床试验(RCT)数量有所增加。本研究旨在了解晚期癌症患者对 MC 在澳大利亚未来的供应和监管的看法、希望和担忧。

方法

这是一项定性研究,利用 2019 年 2 月至 2020 年 10 月在澳大利亚布里斯班进行的半结构式访谈得出的数据,该研究是 MC RCT 子研究的一部分。在姑息治疗中符合 MC 试验参与资格的 48 名晚期癌症患者中进行了访谈(n=26 名参与了 RCT;n=2 名参与了试点研究;n=20 名拒绝)。访谈包括讨论患者参与试验的决策、对 MC 的担忧以及对未来供应的看法,包括成本。转录的访谈进行了归纳和推断分析,并受建构主义主题分析惯例的指导。

结果

总体而言,参与者支持将 MC 作为处方药合法获得。然而,对财务毒性的恐惧破坏了这一途径。获得 MC 的试验后高昂费用促使一些人拒绝参与试验,还有一些人预测——如果发现有效——许多人将通过其他途径获得 MC 或减少处方剂量以实现负担得起的获取。

结论

这些发现表明,尽管澳大利亚拥有相对健全的全民医疗保健系统,但人们可能容易受到财务毒性的影响,并对此感到恐惧。在美国,财务毒性发生在贫困癌症患者获得必要但昂贵的药物时,会产生持久的后果:破产、持续的焦虑和对癌症的担忧。访谈记录表明,财务担忧及其支撑系统可能对 RCT 完成和公平获得合法 MC 构成威胁。这些发现支持在 RCT 中嵌入定性子研究和社区伙伴关系的呼吁,同时也表明补贴的重要性,以克服不公平现象。

患者或公众贡献

患者咨询委员会为 RCT 设计提供了信息。这项定性子研究突出了患者的决策、看法和经验。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a02e/9854313/32c0f9f6fceb/HEX-26--g001.jpg

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