Surgical Services, John Hunter Hospital, Newcastle, New South Wales, Australia.
School of Medicine and Public Health, University of Newcastle, Newcastle, New South Wales, Australia.
Thyroid. 2023 Dec;33(12):1455-1464. doi: 10.1089/thy.2023.0080. Epub 2023 Jul 5.
Most thyroid cancer survivors regain their physical health-related quality of life, but psychological and social deficits persist. The nature of these detriments remains poorly understood and they are insufficiently captured by survey data alone. To address this, qualitative data exploring the breadth and depth of thyroid cancer survivors' experiences and priorities for supportive care are required. Twenty semistructured interviews were undertaken with a purposive, maximum variation sample of thyroid cancer survivors. Interviews were transcribed verbatim and coded independently by two researchers. A hybrid model of inductive and realistic codebook analysis was undertaken with themes developed. Patient experiences centered around three themes: (1) impact of diagnosis and treatment, (2) thyroid cancer does not happen in isolation, and (3) role of clinicians and formalized support structures. The word "cancer" had negative connotations, but for many, the reality of their experience was more positive. Despite feeling "lucky" at the relative low-risk nature of thyroid cancer, many patients reported fatigue, weight gain, and difficulty returning to usual activities; concerns that were largely dismissed or minimized by clinicians. Few were offered any support beyond their treating doctors; where patients attempted to access formalized supportive care, little was available or appropriate. Life stage and concurrent family and social stressors greatly impacted patients' ability to cope with diagnosis and treatment. Addressing thyroid cancer in isolation felt inappropriate without appreciating the broader context of their lives. Interactions with clinicians were largely positive, particularly where information was communicated as a means of empowering patients to participate in shared decision-making and where clinicians "checked in" emotionally with patients. Information about initial treatments was largely adequate but information on longer term effects and follow-up was lacking. Many patients felt that clinicians focused on physical well-being and scan results, missing opportunities to provide psychological support. Thyroid cancer survivors can struggle to navigate their cancer journey, particularly with regard to psychological and social functioning. There is a need to acknowledge these impacts at the time of clinical encounters, as well as develop information resources and support structures that can be individualized to optimize holistic well-being for those in need.
大多数甲状腺癌幸存者的身体健康相关生活质量得以恢复，但心理和社会方面的缺陷仍然存在。这些损害的性质仍未得到充分理解，仅通过调查数据无法充分捕捉到这些损害。为了解决这个问题，需要探索甲状腺癌幸存者的经历和支持性护理需求的广度和深度的定性数据。
我们对 20 名甲状腺癌幸存者进行了半结构化访谈，采用的是有针对性的、最大差异样本。访谈内容逐字记录并由两名研究人员独立编码。采用归纳和现实编码本混合模型进行主题开发。
（1）诊断和治疗的影响，（2）甲状腺癌不是孤立发生的，（3）临床医生和正式支持结构的作用。“癌症”这个词带有负面含义，但对许多人来说，他们的实际体验更为积极。尽管许多患者因甲状腺癌的低风险性质感到“幸运”，但他们报告感到疲劳、体重增加和难以恢复正常活动；这些担忧在很大程度上被临床医生忽视或最小化。很少有患者得到除主治医生以外的任何支持；患者试图寻求正式的支持性护理时，几乎没有或根本没有合适的服务。生活阶段和并发的家庭和社会压力极大地影响了患者应对诊断和治疗的能力。如果不了解他们生活的更广泛背景，孤立地治疗甲状腺癌感觉不合适。与临床医生的互动大多是积极的，尤其是在信息被用作赋予患者参与共同决策的权力，以及临床医生在情感上与患者“联系”的情况下。关于初始治疗的信息大多足够，但缺乏关于长期影响和随访的信息。许多患者认为，临床医生关注身体状况和扫描结果，错失了提供心理支持的机会。
甲状腺癌幸存者在应对癌症之旅时可能会感到困难，特别是在心理和社会功能方面。在临床接触时，有必要认识到这些影响，同时开发可以个性化的信息资源和支持结构，以优化有需要的人的整体健康。
