Department of Health Sciences, University of York, York, UK.
Queens Centre for Oncology and Haematology, Castle Hill Hospital, Cottingham, UK.
BMJ Open. 2023 Aug 18;13(8):e070467. doi: 10.1136/bmjopen-2022-070467.
Patients with chronic haematological cancers are often treated on a relapsing-remitting pathway, which may extend for many years. Such diagnoses are associated with uncertainties that often cause anxiety and distress, meaning patients (and families) are susceptible to potentially prolonged emotional difficulties, across the cancer journey. Experiences and preferences regarding psychosocial needs and support over time are relatively unexplored, which this study aimed to address.
Set within the UK's Haematological Malignancy Research Network (an ongoing population-based cohort that generates evidence to underpin improved clinical practice) a qualitative, exploratory study was conducted, using semistructured interviews. Reflexive thematic analysis was used to assess the interview data via an exploratory, inductive approach, underpinned by the research questions.
Thirty-five patients were included with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; 10 of whom were interviewed alongside a relative.
Five themes were identified from the data: (1) accessing support, (2) individual coping behaviour affecting support preferences, (3) divergent and fluctuating thoughts on patient support forums, (4) the role, influence and needs of family and friends and (5) other sources of support and outstanding needs. Findings suggest that patients' individual attitudes towards support varied over time. This also influenced whether support was perceived to be available, and if it was then used.
This study highlighted the variation in preferences towards psychosocial support among patients with chronic haematological cancers. As patients can live for many years with significant emotional difficulties, they may benefit from frequent monitoring of their psychosocial well-being, as well as signposting to holistic support, if this is needed.
患有慢性血液系统癌症的患者通常采用缓解-复发的治疗路径，这种路径可能会持续多年。这些诊断会带来很多不确定性，常常会导致焦虑和痛苦，这意味着患者（和家属）可能会在癌症治疗过程中面临潜在的长期情绪问题。人们对患者在不同时间点的社会心理需求和支持偏好相对缺乏了解，本研究旨在解决这一问题。
本研究是在英国血液恶性肿瘤研究网络（一个正在进行的基于人群的队列研究，旨在生成证据以支持改善临床实践）中进行的，采用半结构化访谈进行定性、探索性研究。通过探索性、归纳性方法（基于研究问题）使用反思性主题分析来评估访谈数据。
35 名患者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；其中 10 名患者与家属一起接受了采访。
从数据中确定了五个主题：（1）获得支持，（2）个人应对行为影响支持偏好，（3）对患者支持论坛的不同和波动的看法，（4）家庭和朋友的角色、影响和需求，（5）其他支持来源和未满足的需求。研究结果表明，患者对支持的个人态度随时间而变化。这也影响了支持是否被认为是可用的，如果可用，是否会被使用。
本研究强调了慢性血液系统癌症患者对社会心理支持的偏好存在差异。由于患者可能会在多年时间内面临严重的情绪问题，因此如果需要，他们可能会受益于对其社会心理福祉的频繁监测，以及对整体支持的转介。
