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“癌症前后的生活大不同”:I 期和 II 期黑色素瘤幸存者在恢复正常生活和满足未满足的护理需求方面的经历。

"There is a life before and after cancer": experiences of resuming life and unmet care needs in stage I and II melanoma survivors.

机构信息

Department of Dermatology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Rotterdam, The Netherlands.

Department of Surgical Oncology, Albert Schweitzer Hospital, Dordrecht, The Netherlands.

出版信息

Arch Dermatol Res. 2024 Sep 26;316(9):645. doi: 10.1007/s00403-024-03376-4.

Abstract

Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors' experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.

摘要

尽管局部黑色素瘤的发病率增长最大,但对其影响的研究甚少。尽管预后良好且治疗过程相对较短,但诊断和治疗可能会对治疗后生活产生重大影响。因此,本研究旨在深入了解 I 期和 II 期黑色素瘤幸存者在治疗后恢复生活的经历以及他们的相关生存护理 (SSC) 需求。本研究采用定性焦点小组研究,共纳入 18 名 I 期或 II 期黑色素瘤幸存者,分为三组,每组 6 名幸存者。通过使用多个编码阶段对转录本进行深入的主题内容分析。在恢复生活方面,幸存者经历了疾病和治疗的深刻初始影响,这归因于缺乏知识和对黑色素瘤的低估。他们在手术后经历了意想不到的身体和情绪影响,从解脱到恐惧和不确定的混合感受。幸存者感到被误解,不得不调整自己的生活,同时应对个人和外部的期望,并对生活有了积极的转变,这导致癌症前后的生活有了显著的不同。就 SSC 需求而言,幸存者强调需要量身定制的信息、可及的资源、以患者为中心的随访以及针对疾病和治疗总影响的支持性护理。这些发现强调了提高黑色素瘤认识和提供整体 SSC 的重要性,不仅针对晚期黑色素瘤幸存者,也针对局部黑色素瘤幸存者。量身定制的生存护理计划可以帮助患者获得信息和支持性护理,从而帮助他们恢复生活。

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