Epidemiology & Cancer Statistics Group, Department of Health Sciences, University of York, York, YO10 5DD, UK.
Queens Centre for Oncology and Haematology, Castle Hill Hospital, Cottingham, UK.
Eur J Oncol Nurs. 2023 Aug;65:102349. doi: 10.1016/j.ejon.2023.102349. Epub 2023 May 13.
Chronic blood cancers are incurable, and characterised by unpredictable, remitting-relapsing pathways. Management often involves periods of observation prior to treatment (if required), and post-treatment, in an approach known as 'Watch and Wait'. This study aimed to explore patient experiences of 'Watch and Wait'.
In-depth interviews with 35 patients (10 accompanied by relatives) with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma. Data were analysed using descriptive qualitative techniques.
Patient views of Watch and Wait ranged along a continuum, from immediate acceptance, to concern about treatment deferral. Significant ongoing anxiety and distress were described by some, due to the uncertain pathways associated with Watch and Wait. Infrequent contact with clinical staff was said to exacerbate this, as there was limited opportunity to ask questions and seek reassurance. Patients indicated that the impact of their malignancy could be underestimated by clinicians; possibly due to them comparing chronic and acute subtypes. Most patients lacked knowledge of blood cancers. Support from clinicians was considered greater among treated patients, possibly due to increased contact, and many drew on relatives for aid. Most patients were satisfied with their time-allocation with haematology staff, although experiences could be improved by greater access to clinical nurse specialists, counselling services, and community-based facilities.
Experiences varied. Anxiety about unpredictable futures could be more distressing than any physical symptoms and have a greater impact on quality of life. Ongoing assessment could facilitate identification of difficulties, and is particularly important among individuals without supportive networks.
慢性血液病无法治愈，其病程呈不可预测的缓解-复发模式。在治疗（如有需要）前和治疗后，通常需要进行一段时间的观察，这种方法被称为“观察和等待”。本研究旨在探讨患者对“观察和等待”的体验。
对 35 名患有慢性淋巴细胞白血病、滤泡性淋巴瘤、边缘区淋巴瘤或骨髓瘤的患者（10 名患者由亲属陪同）进行深入访谈。使用描述性定性技术对数据进行分析。
患者对“观察和等待”的看法沿连续统分布，从立即接受，到对治疗推迟的担忧。一些患者描述了持续存在的焦虑和困扰，原因是与“观察和等待”相关的不确定途径。由于与临床工作人员的接触频率较低，他们没有机会提问和寻求保证，因此情况更加恶化。患者表示，临床医生可能低估了他们恶性肿瘤的影响；可能是因为他们将慢性和急性亚型进行了比较。大多数患者对血液癌症缺乏了解。治疗患者的临床医生支持被认为更大，可能是由于接触增加，许多患者依赖亲属提供帮助。大多数患者对与血液科工作人员的时间分配感到满意，尽管增加对临床护士专家、咨询服务和社区设施的访问，可以改善他们的体验。
体验各不相同。对不可预测未来的焦虑可能比任何身体症状更令人痛苦，并对生活质量产生更大的影响。持续评估可以促进对困难的识别，对于没有支持网络的个体尤为重要。
