Menzaghi Frédérique, Vernon Margaret K, Mattera Maria, Cirulli Joshua, Wen Warren, Spencer Robert H, Munera Catherine
Cara Therapeutics, Stamford, CT.
Evidera, Bethesda, MD.
Kidney Med. 2023 Jul 1;5(9):100696. doi: 10.1016/j.xkme.2023.100696. eCollection 2023 Sep.
RATIONALE & OBJECTIVE: Despite its prevalence and distress to patients, chronic kidney disease-associated pruritus (CKD-aP) is poorly characterized, which may contribute to the condition's underdiagnosis and inadequate management. This study aimed to understand the symptom experience of patients with CKD-aP and the extent to which pruritus impacts their lives.
Mixed methods study including one-on-one qualitative interviews and completion of the Skindex-10 Questionnaire (measuring itch-related quality of life).
SETTING & PARTICIPANTS: A total of 23 patients undergoing hemodialysis and reporting pruritus at 4 dialysis centers in the United States.
Interviews followed a semistructured guide that included targeted and follow-up questions to elicit discussion of patients' symptoms of pruritus, including frequency and variability, impact on activities of daily living, and emotional and social functioning. Interviews were digitally audio-recorded. A coding dictionary was developed from transcripts to analyze themes and concepts.
Participants described their itch with various terms, including "numbness," "pain," and "tingling" on their skin. Itch affected multiple areas but especially the back, usually occurred daily, and was often worse at night. For some, itching was a constant experience. Patients relieved their itch through scratching and various off-label treatments; some reported skin damage from excessive scratching and most indicated treatments provided limited relief. Pruritus considerably disrupted physical function, including sleep, daily activities, social functioning and relationships, and emotional and psychological wellbeing. All participants reported being bothered by their itching during the past week on the Skindex-10 Questionnaire.
All participants were from the United States, so the findings may not be generalizable to other countries.
Although symptom experience varies considerably, CKD-aP causes severe distress for many patients undergoing hemodialysis and can profoundly impair their quality of life. The results of this study show the impact of itch from patients' perspectives and highlight the need for greater awareness and better management of this condition.
PLAIN-LANGUAGE SUMMARY: Patients with chronic kidney disease often experience itching, or pruritus, but its importance to patients is regularly overlooked. This study used one-on-one interviews to investigate patients' experiences of chronic kidney disease-associated pruritus and how it impacts their lives. We found that participants experienced itch on various body areas and used different words to describe their itch (eg, "numbness" and "pain"). Some reported skin damage from excessive scratching, and many used off-label treatments and other interventions (eg, rubbing alcohol and multiple showers daily), which provided limited relief. For many, itching was experienced daily and severely disrupted sleep, daily activities, interactions with others, and mental wellbeing. These findings reveal chronic kidney disease-associated pruritus severely impacts patients and highlights the need for improved management of this condition.
尽管慢性肾脏病相关瘙痒(CKD-aP)普遍存在且给患者带来困扰,但对其特征的了解却很少,这可能导致该病症诊断不足和管理不当。本研究旨在了解CKD-aP患者的症状体验以及瘙痒对其生活的影响程度。
混合方法研究,包括一对一的定性访谈和完成Skindex-10问卷(测量与瘙痒相关的生活质量)。
在美国4个透析中心,共有23名接受血液透析且报告有瘙痒症状的患者。
访谈遵循半结构化指南,其中包括针对性问题和后续问题,以引发对患者瘙痒症状的讨论,包括频率和变异性、对日常生活活动的影响以及情感和社会功能。访谈进行数字录音。从转录本中开发了一个编码词典来分析主题和概念。
参与者用各种术语描述他们的瘙痒,包括皮肤上的“麻木”“疼痛”和“刺痛”。瘙痒影响多个部位,但背部尤为明显,通常每天都会发生,且夜间往往更严重。对一些人来说,瘙痒持续不断。患者通过抓挠和各种非标签治疗来缓解瘙痒;一些人报告因过度抓挠导致皮肤损伤,大多数人表示治疗效果有限。瘙痒严重扰乱了身体功能,包括睡眠、日常活动、社会功能和人际关系以及情感和心理健康。所有参与者在Skindex-10问卷中报告在过去一周内受到瘙痒困扰。
所有参与者均来自美国,因此研究结果可能不适用于其他国家。
尽管症状体验差异很大,但CKD-aP给许多接受血液透析的患者带来严重困扰,并可能严重损害他们的生活质量。本研究结果从患者角度显示了瘙痒的影响,并强调需要提高对该病症的认识并改善管理。
慢性肾脏病患者经常经历瘙痒,但它对患者的重要性常常被忽视。本研究采用一对一访谈来调查慢性肾脏病相关瘙痒患者的经历及其对生活的影响。我们发现参与者在身体的不同部位经历瘙痒,并用不同的词语来描述瘙痒(如“麻木”和“疼痛”)。一些人报告因过度抓挠导致皮肤损伤,许多人使用非标签治疗和其他干预措施(如擦酒精和每天多次淋浴),但效果有限。对许多人来说,瘙痒每天都有,严重扰乱了睡眠、日常活动、与他人的互动以及心理健康。这些发现揭示了慢性肾脏病相关瘙痒对患者有严重影响,并突出了改善该病症管理的必要性。