Department of Clinical Epidemiology, Leiden University Medical Centre, PO Box 9600, 2300 RC, Leiden, The Netherlands.
Dutch Kidney Patients Association, Groot Hertoginnelaan 34, 1405 EE, Bussum, The Netherlands.
BMC Nephrol. 2019 Sep 2;20(1):344. doi: 10.1186/s12882-019-1521-9.
Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD.
A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires.
The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal.
The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.
患者报告的结局测量（PROMs）在医疗保健中变得越来越重要。在肾脏病学中，对于使用哪种慢性肾脏病（CKD）症状问卷尚无共识。因此，本研究的目的是选择一种有效的症状问卷，用于评估晚期 CKD 患者的常规情况。
采用四阶段混合方法，结合定性和定量研究方法。首先，进行了系统的文献检索，以检索现有的症状问卷。其次，创建了一份症状清单，其中包括现有问卷中的所有症状以及与 CKD 患者访谈中提到的症状，从中确定了症状群。接下来，根据内容有效性的既定标准选择问卷。最后，由两名在线反馈小组（CKD 患者 n=151 和专家 n=6）对最有前途的问卷进行了评估。
文献检索确定了 121 份问卷，其中 28 份可能适合评估晚期 CKD 患者的症状。区分出 101 个独特的症状和 10 个症状群。根据既定标准，选择了透析症状指数（DSI）和姑息治疗结局量表-肾脏版本（IPOS-Renal），并由反馈小组进行了审查。患者完成 DSI 和 IPOS-Renal 分别需要 5.4 分钟和 7.5 分钟（p<0.001）。与 IPOS-Renal 相比，患者认为 DSI 更具体、更完整、更直接。
DSI 被认为是有效且可靠的，是目前可用于评估晚期 CKD 患者的最相关、最完整和最易理解的症状问卷。常规的 PROMs 收集对于个人患者和国家层面的医疗保健都具有重要价值。对评分的反馈和医疗保健提供者的参与可能会促进在医疗保健中的适应和实施。
