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幸存者之声:意大利癌症幸存者未被满足的需求。一项定性研究。

Voices of Survivorship: The Unmet Needs of Italian Cancer Survivors. A Qualitative Study.

作者信息

Contri Angela, Costi Stefania, Guberti Monica, Soncini Silvia, Botti Stefano, Frasoldati Andrea, Torreggiani Martina, Ghirotto Luca

机构信息

Clinical and Experimental Medicine PhD Program, University of Modena and Reggio Emilia, Reggio Emilia, Italy.

Physical Medicine and Rehabilitation Unit, Azienda USL-IRCCS di Reggio Emilia, Reggio Emilia, Italy.

出版信息

Cancer Med. 2025 Aug;14(15):e71121. doi: 10.1002/cam4.71121.

DOI:10.1002/cam4.71121
PMID:40747540
Abstract

BACKGROUND

The increasing number of cancer survivors (CSs) globally highlights the critical need for healthcare systems to address their unmet needs. These needs span physical, psychosocial, spiritual, informational, and practical dimensions and, if unaddressed, can impact quality of life and healthcare satisfaction.

AIMS

This study aimed to identify and understand the unmet needs of CSs in Italy to guide the development of patient-centered survivorship care services.

METHODS

A cross-sectional qualitative study was conducted between April 2023 and January 2024 at the Comprehensive Cancer Centre of Reggio Emilia, Italy. Data were collected through focus groups and individual interviews with 35 CSs and seven caregivers selected via convenience sampling. Eligibility criteria included non-cutaneous CSs with a 5-year survival rate of ≥ 65% who had completed active treatment and were in follow-up care. Data were analyzed using the Framework Method.

RESULTS

Four key themes emerged: (1) Dignity and Respect: Emphasis on the importance of treating CSs with dignity and respect within healthcare settings; (2) Desire for Normality: Highlighting CSs' strong desire to regain a sense of normalcy post-treatment; (3) Pursuit of Control Over One's Life: CSs' need to maintain control, particularly regarding information needs and treatment management; (4) Existential Vulnerability: The vulnerability and fragility felt by CSs, underscoring their need for emotional support and reassurance.

CONCLUSIONS

Unmet needs remain a significant challenge for CSs, necessitating the implementation of tailored, patient-centered care interventions. Addressing these needs can enhance quality of life, satisfaction, and outcomes for CSs worldwide.

TRIAL REGISTRATION

ClinicalTrials.gov Identifier: NCT06236373.

摘要

背景

全球癌症幸存者(CSs)数量不断增加,凸显了医疗系统满足其未满足需求的迫切必要性。这些需求涵盖身体、心理社会、精神、信息和实际层面,若得不到满足,会影响生活质量和医疗满意度。

目的

本研究旨在识别并了解意大利癌症幸存者的未满足需求,以指导以患者为中心的幸存者护理服务的发展。

方法

2023年4月至2024年1月在意大利雷焦艾米利亚综合癌症中心进行了一项横断面定性研究。通过焦点小组和对35名癌症幸存者及7名通过便利抽样选出的照顾者进行个人访谈收集数据。纳入标准包括非皮肤癌幸存者,5年生存率≥65%,已完成积极治疗并处于后续护理中。采用框架法对数据进行分析。

结果

出现了四个关键主题:(1)尊严与尊重:强调在医疗环境中以尊严和尊重对待癌症幸存者的重要性;(2)对正常状态的渴望:突出癌症幸存者在治疗后强烈渴望恢复正常感;(3)对生活掌控的追求:癌症幸存者需要保持掌控,特别是在信息需求和治疗管理方面;(4)生存脆弱性:癌症幸存者感到的脆弱性和易碎性,强调他们对情感支持和安心的需求。

结论

未满足的需求对癌症幸存者仍然是一项重大挑战,需要实施量身定制的、以患者为中心的护理干预措施。满足这些需求可以提高全球癌症幸存者的生活质量、满意度和治疗效果。

试验注册

ClinicalTrials.gov标识符:NCT06236373。

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Hospital Care for Cancer Patients-Education and Respect for Patient Rights.癌症患者的医院护理——对患者权利的教育与尊重
Healthcare (Basel). 2024 Feb 18;12(4):494. doi: 10.3390/healthcare12040494.
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Patient-reported outcome measure to implement routine assessment of cancer survivors' unmet needs: An overview of reviews and COSMIN analysis.用于实施癌症幸存者未满足需求常规评估的患者报告结局测量:综述概述与COSMIN分析
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“癌症在你的脑海中挥之不去,哪怕只有一秒钟”。癌症幸存者视角下的与癌症相关的沉思。
Semin Oncol Nurs. 2023 Aug;39(4):151427. doi: 10.1016/j.soncn.2023.151427. Epub 2023 Apr 16.
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A qualitative study of sleep in young breast cancer survivors: "No longer able to sleep through the night".一项关于年轻乳腺癌幸存者睡眠的定性研究:“再也无法整夜入睡”。
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Patient Engagement in Oncology Practice: A Qualitative Study on Patients' and Nurses' Perspectives.肿瘤学实践中的患者参与:基于患者和护士视角的定性研究。
Int J Environ Res Public Health. 2022 Sep 15;19(18):11644. doi: 10.3390/ijerph191811644.
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Trustworthiness in Qualitative Research.定性研究中的可信度
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Cultural adaptation and validation of the Survivor Unmet Needs Survey Short-Form among cancer patients in China.中文版生存者未满足需求调查短表在我国癌症患者中的文化调适与验证。
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Isolation experienced by women with gestational cancer: could peer support and tailored information be the answer?妊娠癌症女性的隔离感:同伴支持和定制信息能否成为答案?
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Physical, emotional, and practical concerns, help-seeking and unmet needs of rural and urban dwelling adult cancer survivors.农村和城市成年癌症幸存者的身体、情感和实际问题,以及他们的求助和未满足的需求。
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