Herrmann Anne, Mansfield Elise, Tzelepis Flora, Lynagh Marita, Hall Alix
Department for Epidemiology and Preventive Medicine, Professorship for Medical Sociology, University of Regensburg, Regensburg, Germany.
Department of Haematology and Internal Oncology, University Hospital Regensburg, Regensburg, Germany.
BMC Health Serv Res. 2020 Nov 23;20(1):1062. doi: 10.1186/s12913-020-05927-7.
Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs.
Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis.
Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements.
To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.
某些血液系统癌症亚型起病急，确诊后需立即进行强化治疗。其他亚型则为慢性，多年后会复发，需要在长期的监测周期中穿插进行多次治疗。这往往导致患者对未来充满巨大不确定性，抑郁和焦虑程度高，生活质量下降。关于如何改善血液系统癌症幸存者的护理，人们知之甚少。本研究对血液系统癌症幸存者样本进行了定性研究，(i) 探究他们因疾病和治疗而未得到满足的需求；(ii) 以及可能有助于满足这些需求的策略。
对17名成年血液系统癌症幸存者进行了半结构式访谈。采用定性内容分析法对数据进行分析。支持性护理框架指导数据收集和分析。
参与者的平均年龄为57岁（标准差13）。大多数为男性（n = 10，59%）。数据中出现了五个主题：(i) 整个护理轨迹中未得到满足的需求的变化（确诊后不久、出院时和癌症复发时未得到满足的需求最大）；(ii) 需要改善以患者为中心的沟通来满足信息方面未得到满足的需求；(iii) 治疗和未来的不确定性；(iv) 协调、量身定制并记录在案的治疗后护理计划，作为提供最佳护理的策略；(v) 通过同伴支持、减少官僚作风的交通服务和灵活的工作安排，提供持续支持服务，以满足心理社会和实际方面未得到满足的需求。
据我们所知，这是第一项使用支持性护理框架来探究血液系统癌症幸存者未得到满足的需求的定性研究。我们的研究结果为这一重要研究领域提供了新的见解。书面的、可带回家的护理计划，为在哪里寻求额外支持提供简单但量身定制的指导，可能有助于减少成年血液系统癌症幸存者治疗后的不确定性和脆弱感。未来的研究应进一步开发和测试旨在满足本研究中确定的血液系统癌症幸存者未得到满足的需求的策略。
