Tran Wen-Ching, Huynh David, Chan Tea, Chesla Catherine A, Park Meyeon
School of Medicine, University of California, San Francisco, CA, USA.
Division of Nephrology, Department of Medicine, University of California, 521 Parnassus Ave, C443, Box 0532, San Francisco, CA, 94143, USA.
BMC Nephrol. 2017 Jul 5;18(1):214. doi: 10.1186/s12882-017-0641-3.
Autosomal dominant polycystic kidney disease (PKD) is the most common genetic renal disease and the fourth leading cause of end-stage renal disease in the United States. Although there is no cure for PKD, several treatments are considered to be beneficial, including blood pressure control, exercise, low-salt diet, and high volume water intake. However, levels of understanding of the importance of these treatments and adherence to these recommendations vary among patients. This study explores illness perception models of patients with PKD to reveal barriers in adherence to prescribed therapies; satisfaction with medical care; and sources of medical information.
We designed a phenomenological interview study to evaluate illness perception models of individuals with PKD. Patients were identified from the national PKD Foundation e-mail distribution list (N = 190) and responded voluntarily to an introductory survey (N = 50). Seventeen PKD patients in the Bay Area were scheduled for one-on-one in-depth interviews with one trained interviewer (W-CT). Open-ended questions administered with an interview guide were used to evaluate patients' beliefs.
Mean age was 56.6 +/- 12 years (range 29-78); 65% were female. Many of the PKD patients in this study were highly motivated and willing to incorporate blood pressure, exercise, low-salt diet, and high volume water intake into their daily routines. Barriers to adherence to these therapies include personal beliefs and confusion due to unclear recommendations.
These findings suggest there is variability between what patients understand about their disease and treatments and what they believe their doctors have told them. Not all physicians focus on lifestyle-based treatments, but the majority of PKD patients in our study are motivated and willing to incorporate blood pressure control, exercise, low-salt diet, and high volume water intake into their daily routines and would like specific recommendations on how to implement these. These findings support a role for further exploring patient beliefs about the disease and its necessary treatments in order to design strategies to improve communication and meet the needs of these patients.
常染色体显性多囊肾病（PKD）是最常见的遗传性肾病，在美国是终末期肾病的第四大主要病因。虽然PKD无法治愈，但几种治疗方法被认为有益，包括控制血压、运动、低盐饮食和大量饮水。然而，患者对这些治疗重要性的理解程度以及对这些建议的依从性各不相同。本研究探讨PKD患者的疾病认知模式，以揭示在遵循规定治疗方面的障碍、对医疗护理的满意度以及医疗信息来源。
我们设计了一项现象学访谈研究，以评估PKD患者的疾病认知模式。从全国PKD基金会电子邮件分发列表中识别出患者（N = 190），并自愿回复一份初步调查问卷（N = 50）。安排了旧金山湾区的17名PKD患者与一名经过培训的访谈者（W - CT）进行一对一深度访谈。使用访谈指南中的开放式问题来评估患者的信念。
平均年龄为56.6±12岁（范围29 - 78岁）；65%为女性。本研究中的许多PKD患者积极性很高，愿意将控制血压、运动、低盐饮食和大量饮水纳入日常生活。遵循这些治疗的障碍包括个人信念以及因建议不明确而产生的困惑。
这些发现表明，患者对自身疾病和治疗的理解与他们认为医生告知他们的内容之间存在差异。并非所有医生都关注基于生活方式的治疗，但我们研究中的大多数PKD患者积极性很高，愿意将控制血压、运动、低盐饮食和大量饮水纳入日常生活，并希望获得关于如何实施这些措施的具体建议。这些发现支持进一步探索患者对疾病及其必要治疗的信念，以便设计改善沟通并满足这些患者需求的策略。
