Abstract
BackgroundPatient-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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.
Highlights
Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare
The PROMs registry is primarily aimed at patients with advanced chronic kidney disease (CKD), including patients with End-stage kidney disease (ESKD) receiving dialysis or without renal replacement therapy (RRT)
Patients will be followed over time across different stages and treatments, and we have chosen not to restrict this study to subpopulations, but to focus on CKD in general, taking all existing CKD-specific symptom questionnaires into consideration
Summary
Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. The aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD. Value in healthcare depends on the outcomes achieved and should be defined around the patient [1]. With this change, patient-reported outcomes (PROs) are becoming increasingly important in healthcare [1,2,3,4]. PRO measures (PROMs) can be used to quantify a wide variety of concepts of health that are relevant to the patient, such as quality of life, functional status and symptom burden [2, 5]. The use of PROMs is nowadays recommended to be implemented and routinely used in clinical practice [4, 9, 10]
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