Health Experiences Research Group, Department of Primary Health Care, University of Oxford, Oxford, UK.
Eur J Cancer Care (Engl). 2012 Jan;21(1):67-77. doi: 10.1111/j.1365-2354.2011.01278.x. Epub 2011 Aug 31.
Patients with chronic lymphocytic leukaemia (CLL) find it hard to accept a diagnosis of an incurable cancer for which no treatment is recommended and which may not cause symptoms for many years. We used qualitative interviews with 12 people with CLL managed by watchful waiting, drawn from a maximum variation sample of 39 adults with leukaemia, to explore accounts of watchful waiting and implications for clinical management. Patients with CLL recalled being given little information about the condition and wanted to know more about how it might affect them in the future. The invisibility of CLL meant that some chose not to disclose the diagnosis to others. Check-ups sometimes felt cursory, causing dissatisfaction. As symptoms increased, lifestyle adaptations became essential, well before treatment was warranted. Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor-patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients' concerns, and meeting their needs for information.
慢性淋巴细胞白血病（CLL）患者发现很难接受这种无法治愈的癌症的诊断，因为目前尚无推荐的治疗方法，而且这种病可能多年都不会出现症状。我们对 12 名采用观察等待策略治疗的 CLL 患者进行了定性访谈，他们是从 39 名白血病成年人中采用最大变异抽样法抽取的，目的是探究观察等待策略的情况及其对临床管理的影响。CLL 患者回忆说，他们获得的关于病情的信息很少，希望了解更多关于这种疾病将来可能对他们产生的影响。CLL 的隐匿性意味着有些患者选择不向他人透露诊断结果。体检有时显得敷衍了事，引起了不满。随着症状的增加，在需要治疗之前，生活方式的调整就变得至关重要。接受观察等待治疗的 CLL 患者的抑郁、焦虑和生活质量水平与接受积极治疗的患者相似；我们的定性方法阐明了一些导致负面心理影响的原因。我们将研究结果与对疾病状态的看法、医患沟通和工作压力联系起来。我们建议专家通过承认 CLL 的心理影响、积极倾听患者的担忧以及满足他们对信息的需求，为患者提供更好的支持。
