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患者对癌症生存模型的偏好和舒适度:一项在线调查的结果。

Patient preferences and comfort for cancer survivorship models of care: results of an online survey.

机构信息

Department of Surgery, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA.

UCLA Health Burbank Breast Care, 191 S. Buena Vista #415, Burbank, CA, 91505, USA.

出版信息

J Cancer Surviv. 2023 Oct;17(5):1327-1337. doi: 10.1007/s11764-022-01177-0. Epub 2022 Feb 3.

DOI:10.1007/s11764-022-01177-0
PMID:35113306
Abstract

PURPOSE

Workforce shortages will impact oncologists' ability to provide both active and survivorship care. While primary care provider (PCP) or survivorship clinic transition has been emphasized, there is little evidence regarding patient comfort.

METHODS

We developed an online survey in partnership with patient advocates to assess survivors' comfort with PCP or survivorship clinic care and distributed the survey to online, cancer-specific patient communities from June to August 2020. Descriptive and logistic regression analyses were conducted.

RESULTS

A total of 975 surveys were complete. Most respondents were women (91%) and had private insurance (65%). Thirty-six cancer types were reported. Ninety-three percent had a PCP. Twenty-four percent were comfortable seeing a PCP for survivorship care. Higher odds of comfort were seen among respondents who were Black or had stage 0 cancer; female sex was associated with lower odds. Fifty-five percent were comfortable with a survivorship clinic. Higher odds of comfort were seen with lymphoma or ovarian cancer, > 15 years from diagnosis, and non-US government insurance. Lower odds were seen with melanoma, advanced stage, Medicaid insurance, and one late effect. Preference for PCP care was 87% for general health, 32% for recurrence monitoring, and 37% for late effect management.

CONCLUSIONS

One quarter of cancer survivors were comfortable with PCP-led survivorship care and about half with a survivorship clinic. Most preferred oncologist care for recurrence monitoring and late-effect management.

IMPLICATIONS FOR CANCER SURVIVORS

Patient preference and comfort should be considered when developing survivorship care models. Future efforts should focus on facilitating patient-centered transitions to non-oncologist care.

摘要

目的

劳动力短缺将影响肿瘤学家提供积极治疗和生存护理的能力。虽然已经强调了初级保健提供者(PCP)或生存诊所的过渡,但关于患者舒适度的证据很少。

方法

我们与患者权益倡导者合作开发了一个在线调查,以评估生存者对 PCP 或生存诊所护理的舒适度,并于 2020 年 6 月至 8 月向在线癌症特定患者社区分发了该调查。进行了描述性和逻辑回归分析。

结果

共完成了 975 份调查。大多数受访者为女性(91%),并拥有私人保险(65%)。报告了 36 种癌症类型。93%的人有 PCP。24%的人对 PCP 进行生存护理感到舒适。在黑人或患有 0 期癌症的受访者中,舒适感的几率更高;女性性别与较低的几率相关。55%的人对生存诊所感到舒适。在淋巴瘤或卵巢癌、诊断后超过 15 年和非美国政府保险的患者中,舒适感的几率更高。在黑色素瘤、晚期、医疗补助保险和一个晚期效应的患者中,几率较低。对 PCP 护理的偏好为一般健康 87%,复发监测 32%,晚期效应管理 37%。

结论

四分之一的癌症幸存者对 PCP 主导的生存护理感到舒适,大约一半对生存诊所感到舒适。大多数人更希望肿瘤学家对复发监测和晚期效应管理进行护理。

意义

在制定生存护理模式时应考虑患者的偏好和舒适度。未来的努力应侧重于促进以患者为中心的向非肿瘤学家护理的过渡。

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Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.社交媒体在罕见遗传病研究中的机遇与挑战:系统综述
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