Abstract

Purpose

There is a lack of population-based data describing patient reported outcomes (PROs) in melanoma survivors which could guide the development of interventions and resources. This study assessed overall quality of life (QoL), self-reported symptoms and unmet information needs in melanoma survivors 1, 3 or 5 years post-diagnosis.

Methods

A cross-sectional postal survey was conducted in Victoria, Australia, with eligible melanoma survivors identified from a population-based cancer registry. Patient-reported outcome measures included the EuroQoL 5-Dimension 5-Level (EQ-5D-5L), and self-reported symptoms, difficulties and information needs. Associations between demographic, disease and care-related factors and QoL were also assessed.

Results

A total of 476 melanoma survivors participated in the study (response rate 46.5%). Anxiety and depressive symptoms were more prevalent in survivors compared to the general population (30.7% vs 21.6%; p < 0.01). Fear of cancer recurrence (48.3%) and fear of cancer spreading (37.8%) were the most commonly reported symptom items, and approximately one in five melanoma survivors had unmet information needs related to psychological aspects of living with melanoma. Recurrent melanoma, living in a nursing home, chronic comorbidities, and melanoma diagnosed at > 2 mm thickness were associated with lower QoL.

Conclusion

A large proportion of melanoma survivors reported ongoing quality of life deficits, fear of cancer recurrence, as well as unmet information needs up to 5 years after diagnosis. Patients may benefit from tailored informational resources and interventions that address the psychological aspects of living with and beyond melanoma.

中文翻译：

---

患者在诊断后1年，3年和5年报告的黑色素瘤幸存者预后：一项基于人群的横断面研究。

摘要

目的

缺乏基于人群的数据来描述黑色素瘤幸存者的患者报告结果（PRO），这些数据可能指导干预措施和资源的开发。这项研究评估了诊断后1、3或5年的黑色素瘤幸存者的总体生活质量（QoL），自我报告的症状和未满足的信息需求。

方法

在澳大利亚维多利亚州进行了横断面邮政调查，从基于人群的癌症登记处确定了合格的黑色素瘤幸存者。患者报告的结局指标包括EuroQoL 5维5级水平（EQ-5D-5L），以及自我报告的症状，困难和信息需求。还评估了人口统计学，疾病和护理相关因素与生活质量之间的关联。

结果

共有476名黑色素瘤幸存者参加了研究（应答率46.5％）。与普通人群相比，幸存者的焦虑和抑郁症状更为普遍（30.7％vs 21.6％；p  <0.01）。对癌症复发的恐惧（48.3％）和对癌症扩散的恐惧（37.8％）是最常报告的症状项目，大约五分之一的黑色素瘤幸存者未满足与黑色素瘤生活的心理方面有关的信息需求。复发的黑色素瘤，住在疗养院，慢性合并症和诊断为厚度> 2 mm的黑色素瘤与较低的QoL相关。

结论

黑色素瘤幸存者中有很大一部分报告说，他们的生活质量一直存在缺陷，担心癌症复发，诊断后长达5年的信息需求仍未得到满足。患者可以受益于量身定制的信息资源和干预手段，这些手段和手段可以解决黑素瘤患者以及其他人生活中的心理问题。