Cormican Orlaith, Dowling Maura
The Cancer Clinical Trials Unit, Room 1.68, Clinical Research Facility, National University of Ireland Galway, Galway University Hospital, Newcastle Rd., Galway, Ireland.
School of Nursing and Midwifery, National University of Ireland, Galway, University Road, Galway, Ireland.
Eur J Oncol Nurs. 2016 Aug;23:51-8. doi: 10.1016/j.ejon.2016.04.003. Epub 2016 May 11.
The study aim was to explore whether there were differing opinions on the current management of relapsed myeloma between patients and health care professionals, a topic which has never been explored previously in the literature.
This qualitative study was undertaken at a regional specialist haematology centre in Ireland. Individual interviews were undertaken with multiple myeloma patients with relapsed disease (n = 8). Three focus groups were also undertaken with haematology nurse specialists, haematology doctors and staff nurses working in a haematology day unit (n = 17). The analysis of interview data was guided by thematic analysis.
Two central themes were interpreted from the interview data: 'shared decision making with the expert patient' and 'an unpredictable disease journey'. Patients felt well informed regarding their illness but faced difficult decisions at times. Nurses and doctors stressed the importance of the early introduction of palliative care but acknowledged difficulties due to myeloma being unpredictable.
Managing relapsed myeloma was fraught with complex issues. Patients developed alternative ways of coping with their disease including adopting the role of the 'expert patient', continuing to battle their disease and living with a chronic illness. Health care professionals struggle to manage the realities of a disease where the prognosis is improving. Uncertainty around patients' care and difficulties such as when 'enough is enough', continue to cause challenges. The transition to a chronic disease offers hope to patients and an opportunity for health care professionals to implement holistic care plans encouraging patients to be self proactive.
本研究旨在探讨患者与医护人员对于复发骨髓瘤当前治疗方法是否存在不同观点，这是一个此前文献中从未探讨过的话题。
这项定性研究在爱尔兰的一个地区专科血液学中心开展。对复发疾病的多发性骨髓瘤患者进行了个体访谈（n = 8）。还与血液学护士专家、血液学医生以及在血液学日间病房工作的护士进行了3个焦点小组访谈（n = 17）。访谈数据分析以主题分析为指导。
从访谈数据中解读出两个核心主题：“与专家型患者共同决策”和“不可预测的疾病历程”。患者感觉对自身疾病了解充分，但有时面临艰难决策。护士和医生强调早期引入姑息治疗的重要性，但也承认由于骨髓瘤不可预测而存在困难。
管理复发骨髓瘤充满复杂问题。患者形成了应对疾病的其他方式，包括扮演“专家型患者”角色、继续与疾病抗争以及与慢性病共存。医护人员努力应对一种预后正在改善的疾病的现实情况。患者护理方面的不确定性以及诸如“何时足够”等困难，继续带来挑战。向慢性病的转变给患者带来希望，也为医护人员提供了实施整体护理计划的机会，鼓励患者积极主动。
