Bristowe Katherine, Selman Lucy E, Higginson Irene J, Murtagh Fliss E M
King's College London, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, UK.
Population Health Sciences, University of Bristol, Bristol, UK.
Ann Palliat Med. 2019 Apr;8(2):121-129. doi: 10.21037/apm.2018.12.06. Epub 2019 Jan 3.
Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived burdens may outweigh benefits. Conservative management focuses on: maintaining remaining kidney function; symptom management; and quality of life. Common symptoms in conservatively managed kidney disease include: fatigue; anorexia; nausea and vomiting; pain and pruritis. Chronic disease is associated with biographical disruption and a loss of sense of self. Coping strategies are shaped by illness perceptions, but little is known of illness perceptions of people living with conservatively managed kidney disease. This study aimed to explore the experience, impact and understanding of conservatively managed end-stage kidney disease among older adults.
Secondary analysis of qualitative interviews analysed using thematic analysis. Twenty people with conservatively managed end-stage kidney disease were recruited from 3 UK renal units: median age was 82 (range, 69-95); 9 women, 11 men.
Participants described the invisibility and intangibility of kidney disease, and challenges in attributing symptoms to the disease. They described a spectre-like presence, sapping their energy and holding them down. For some, it was hard to differentiate symptoms of the illness from characteristics of aging, resulting in challenges in illness attribution, and disconnectedness from the illness.
Participants described challenges in attributing their symptoms to kidney disease which negatively impacted upon their wellbeing, and ability to accept an adjusted sense of self. Understanding these challenges is critical in the management conditions such as end-stage kidney disease where prognosis may be poor, and where an increase in symptom distress may suggest a marked deterioration in their condition, or a change in phase of illness. Clinical services need to recognize the illness experience (alongside more symptom led approaches), including the invisibility, intangibility, and disconnectedness, and address this through specific interventions focused on improving clinical assessment, communication and education, alongside peer and professional support.
越来越多的老年人患有肾脏疾病。对于那些患有合并症的患者，终末期肾病的保守治疗是一种可行的选择：透析可能只能带来有限的生存益处或根本没有生存益处，而且感知到的负担可能超过益处。保守治疗的重点是：维持剩余肾功能；症状管理；以及生活质量。保守治疗的肾病常见症状包括：疲劳；厌食；恶心和呕吐；疼痛和瘙痒。慢性病与生活经历的中断和自我认同感的丧失有关。应对策略受疾病认知的影响，但对于接受保守治疗的肾病患者的疾病认知知之甚少。本研究旨在探讨老年人对终末期肾病保守治疗的体验、影响和理解。
对定性访谈进行二次分析，并采用主题分析法。从英国3个肾脏科招募了20名接受终末期肾病保守治疗的患者：中位年龄为82岁（范围69 - 95岁）；9名女性，11名男性。
参与者描述了肾病的隐匿性和无形性，以及将症状归因于该疾病的挑战。他们描述了一种幽灵般的存在，消耗着他们的精力并使他们萎靡不振。对一些人来说，很难将疾病症状与衰老特征区分开来，这导致了疾病归因方面的挑战，以及与疾病的脱节。
参与者描述了将症状归因于肾病的挑战，这对他们的幸福感以及接受自我调整感的能力产生了负面影响。了解这些挑战对于管理诸如终末期肾病等预后可能较差、症状困扰增加可能表明病情明显恶化或疾病阶段变化的疾病至关重要。临床服务需要认识到疾病体验（除了更多以症状为主导的方法），包括隐匿性、无形性和脱节性，并通过专注于改善临床评估、沟通和教育以及同伴和专业支持的具体干预措施来解决这一问题。
