Bass E B, Jenckes M W, Fink N E, Cagney K A, Wu A W, Sadler J H, Meyer K B, Levey A S, Powe N R
Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
Med Decis Making. 1999 Jul-Sep;19(3):287-95. doi: 10.1177/0272989X9901900307.
Patients with end-stage renal disease (ESRD) may have quality-of-life (QOL) concerns that are not fully appreciated by their providers. The authors conducted focus groups with dialysis patients and dialysis professionals to determine whether this qualitative method would reveal differences between patients' and providers' views about: 1) domains of QOL that are affected by ESRD and dialysis; and 2) aspects of dialysis that affect QOL.
Separate focus group discussions were held with: 8 adult hemodialysis patients (mean age 50 years; 3 women; mean duration of dialysis 8.5 years), 5 adult peritoneal dialysis patients (mean age 54 years; 3 women; mean duration of dialysis 4.6 years), 8 nephrologists (mean of 12 years of dialysis practice), and 9 other health professionals involved in dialysis care (3 nurses, 2 dietitians, 2 social workers, and 2 technicians; mean of 10 years experience in dialysis care). Discussions were audiotaped, transcribed verbatim, and reviewed independently by three investigators to identify and categorize distinct thoughts.
1,271 distinct thoughts were identified and grouped into 20 related categories, which included ten QOL domains and ten aspects of dialysis that affect QOL. Compared with the professionals, the patients identified one additional relevant QOL domain (10 vs 9), and one additional aspect of dialysis that affects QOL (10 vs 9), and expressed more thoughts per domain (p < 0.05), although the contents of their comments were frequently similar. Among QOL domains, the numbers of related thoughts identified by patients and professionals, respectively, were: freedom/control (60, 89); social relationships (36, 11); anxiety (37, 4); role function (24, 10); energy (12, 10); body image (16, 4); sex (11, 21); mental attitude (21, 0); sleep (15, 1), and cognitive function (13, 7). Among aspects of dialysis that affect QOL, the numbers of thoughts identified by patients and professionals were: general dialysis issues (159, 105); relationships with staff (62, 110); patient education (63, 68); diet (44, 40); scheduling (57, 3); vascular or peritoneal access issues (31, 17), adaptation to dialysis (16, 14); dialysis dose (18, 8); symptoms (25, 0), and self-care (5, 24).
Although health professionals have a good understanding of patient concerns about the effects of ESRD and dialysis, the focus group discussions revealed a breadth and depth of QOL concerns that they may not fully appreciate.
终末期肾病（ESRD）患者可能存在一些生活质量（QOL）方面的问题，而其医疗服务提供者并未充分认识到这些问题。作者对透析患者和透析专业人员进行了焦点小组访谈，以确定这种定性方法是否能揭示患者和提供者在以下方面的观点差异：1）受ESRD和透析影响的生活质量领域；2）影响生活质量的透析方面。
分别与以下人员进行了焦点小组讨论：8名成年血液透析患者（平均年龄50岁；3名女性；平均透析时间8.5年）、5名成年腹膜透析患者（平均年龄54岁；3名女性；平均透析时间4.6年）、8名肾病学家（平均透析治疗经验12年）以及9名参与透析护理的其他健康专业人员（3名护士、2名营养师、2名社会工作者和2名技术人员；平均透析护理经验10年）。讨论进行了录音，逐字转录，并由三名研究人员独立审查，以识别和分类不同的想法。
共识别出1271个不同的想法，并将其归为20个相关类别，其中包括10个生活质量领域和10个影响生活质量的透析方面。与专业人员相比，患者识别出一个额外的相关生活质量领域（10个对9个）和一个额外的影响生活质量的透析方面（10个对9个），并且每个领域表达的想法更多（p < 0.05），尽管他们评论的内容通常相似。在生活质量领域中，患者和专业人员分别识别出的相关想法数量为：自由/控制（60个，89个）；社会关系（36个，11个）；焦虑（37个，4个）；角色功能（24个，10个）；精力（12个，10个）；身体形象（16个，4个）；性（11个，21个）；精神态度（21个，0个）；睡眠（15个，1个），以及认知功能（13个，7个）。在影响生活质量的透析方面，患者和专业人员识别出的想法数量为：一般透析问题（159个，105个）；与工作人员的关系（62个，110个）；患者教育（63个，68个）；饮食（44个，40个）；时间安排（57个，3个）；血管或腹膜通路问题（31个，17个）；适应透析（16个，14个）；透析剂量（18个，8个）；症状（25个，0个），以及自我护理（5个，24个）。
尽管健康专业人员对患者关于ESRD和透析影响的担忧有较好的理解，但焦点小组讨论揭示了他们可能未充分认识到的生活质量担忧的广度和深度。
