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了解非小细胞肺癌(NSCLC)患者的生活体验:一项定性研究。

Understanding the experience of living with non-small-cell lung cancer (NSCLC): a qualitative study.

作者信息

Buzaglo Joanne, Gayer Christopher, Mallick Rajiv, Charap Ellyn, Ferris Andrea, Golant Mitch, Langer Corey, Morris Anne, Mullins C Daniel, Cella David

机构信息

Cancer Support Community (CSC) Research and Training Institute, Philadelphia, PA USA Email:

出版信息

J Community Support Oncol. 2014 Jan;12(1):6-12. doi: 10.12788/jcso.0010.

DOI:10.12788/jcso.0010
PMID:24971397
Abstract

BACKGROUND

As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC.

METHODS

Three focus groups (n = 16) and telephone interviews (n = 15) were conducted with NSCLC patients (N = 31) to explore symptoms considered important to QOL. A trade-off format was used to assess the value of life extension relative to QOL. Patients were asked to consider a hypothetical treatment option offering a modest (3 month) life extension.

RESULTS

Patients' mean age was 61.6 years, 67.6% were women, 77.4% were white, and 48.4% had stage III/IV disease. In all, 68% of patients conceptualized emotions as symptoms of NSCLC. Key symptoms changed over time: Patients reported feeling shock and fear at diagnosis (74%), and feeling fear or loneliness during the beginning of therapy (55%). Additionally, patients who reported successfully connecting with other NSCLC patients (peers), support groups, and/or community members reported a positive shift in feelings (52%) as they continued therapy or moved into a posttherapy phase. Financially, 23% of patients reported being adversely affected by copayments, 36% by unexpected gaps in coverage, and 39% by other bills. Patients reported that the most important dimension driving their decision making about life-extending therapy was somatic (84%), followed by functional (32%), relational (23%), and emotional (10%) dimensions.

LIMITATIONS

Study participants were likely to have received some education or support from the recruiting cancer advocacy and patient education/support organizations. In addition, participants were of a higher socioeconomic status than the average lung cancer patient population.

CONCLUSIONS

Patients with NSCLC conflated emotional well-being after diagnosis with symptoms of their cancer and treatment toxicities. Somatic QOL concerns emerged ahead of functional, emotional, and relational QOL concerns as the dominant driver of therapeutic decision making.

FUNDING

This study was funded by Daiichi Sankyo Inc.

摘要

背景

随着非小细胞肺癌(NSCLC)治疗方法的改进以及患者寿命的延长,开发有助于患者过上更充实生活的干预措施变得很重要。我们试图确定生活质量(QOL)的关键组成部分,以用于指导NSCLC患者的治疗决策及评估延长生命的总体价值。

方法

对31例NSCLC患者进行了3个焦点小组讨论(n = 16)和电话访谈(n = 15),以探讨对QOL而言重要的症状。采用权衡格式来评估相对于QOL的延长生命的价值。要求患者考虑一种假设的治疗方案,该方案可使寿命适度延长(3个月)。

结果

患者的平均年龄为61.6岁,67.6%为女性,77.4%为白人,48.4%患有III/IV期疾病。总体而言,68%的患者将情绪视为NSCLC的症状。关键症状随时间变化:患者在诊断时报告感到震惊和恐惧(74%),在治疗开始时感到恐惧或孤独(55%)。此外,报告成功与其他NSCLC患者(同龄人)、支持小组和/或社区成员建立联系的患者在继续治疗或进入治疗后阶段时,感觉有积极转变(52%)。在经济方面,23%的患者报告自付费用对其有不利影响,36%受保险覆盖范围意外缺口影响,39%受其他账单影响。患者报告称,驱动其关于延长生命治疗决策的最重要维度是躯体维度(84%),其次是功能维度(32%)、关系维度(23%)和情感维度(10%)。

局限性

研究参与者可能已从招募他们的癌症宣传及患者教育/支持组织获得了一些教育或支持。此外,参与者的社会经济地位高于肺癌患者的平均水平。

结论

NSCLC患者将诊断后的情绪健康与癌症症状及治疗毒性混为一谈。躯体QOL问题在功能、情感和关系QOL问题之前出现,成为治疗决策的主要驱动因素。

资助

本研究由第一三共株式会社资助。

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