Martins Ana, Whelan Jeremy S, Bennister Lindsey, Fern Lorna A, Gerrand Craig, Onasanya Maria, Storey Lesley, Wells Mary, Windsor Rachael, Woodford Julie, Taylor Rachel M
Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK
Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK.
BMJ Open. 2019 Sep 24;9(9):e028693. doi: 10.1136/bmjopen-2018-028693.
The aim of this study is to explore the experiences of patients with primary bone cancer.
Qualitative study design using semistructured interviews and focus groups.
Hospitals across the UK and recruitment through UK sarcoma charities and support groups.
Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis.
Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%).
The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent.
This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.
本研究旨在探索原发性骨癌患者的经历。
采用半结构化访谈和焦点小组的定性研究设计。
英国各地的医院，并通过英国肉瘤慈善机构和支持团体进行招募。
对26名有目的抽样的参与者进行半结构化电话/面对面访谈和焦点小组访谈。使用框架分析法对数据进行分析。
26名年龄在13 - 77岁之间的原发性骨癌患者。大多数为男性（69%），白人（85%）；在4年内确诊（54%）；患有下肢肉瘤（65%）。10名参与者接受了上肢/下肢截肢手术（39%）。
身体、情感和社会幸福感以及医疗保健专业人员角色等与健康相关的生活质量领域是分析的总体主题。身体领域是患者经历的核心。治疗的强度和时长以及副作用的严重程度、术后残疾程度和预后的不确定性对患者的自我形象、信心、情绪和身份产生了影响，并扰乱了患者社会生活的各个方面，包括他们的人际关系（情感和性方面）以及参与工作/学校和休闲活动。适应情况受到患者应对压力和逆境方式的影响，一些人找到了新的生活视角，而另一些人则在努力寻找他们的“新常态”。家人和朋友是主要的支持来源。医疗保健专业人员的专业知识和支持至关重要。康复服务在患者的身体和情感幸福感方面发挥了相当大的作用，但获得这些服务的机会不平等现象明显。
本研究描述了原发性骨癌对患者幸福感和随时间调整的影响，并确定了体验较好/较差的影响因素。研究表明，治疗结束后仍能感受到其影响，且在不同生命阶段影响着患者。需要全面的生存护理模式。
