Abstract
Abstract Background and Aims Studies indicate that 30% of patients on dialysis feel inadequately informed about various dialysis options and also lack involvement in the decision-making process surrounding dialysis initiation. The aim of this study was to 1) describe the provision of information to older patients with chronic kidney disease before KRT and 2) to study the association between the perceived amount of information received before dialysis and patient satisfaction with treatment post dialysis initiation. Method The EQUAL study is a multicenter, prospective cohort study in six European countries (Germany, Italy, Netherlands, Poland, Sweden, and United Kingdom). Inclusion criteria are older adults >65 years with an incident eGFR <20 ml/min/1.73 m2. Patients were followed up every 3-6 months and received routine medical care as provided by the nephrology clinic in each country. Standardized data were collected at each visit, including demographics, lifestyle, comorbidities, uremic signs and symptoms, quality of life, treatment satisfaction according to renal treatment satisfaction questionnaire (RTSQ-11), nutritional status, medication and routine blood and urine biochemistry. We described patient characteristics and perceived information provision at different time points (incident eGFR<20, eGFR<15, eGFR<10 ml/min/1.73 m2). Subsequentially, we compared patient characteristics between those who reported receiving more versus less information at the last eGFR before start of KRT (or end-of follow-up in patients with eGFR <10 ml/min/1.73 m2). We used multivariable logistic regression models to investigate if perceived information provision before start of dialysis was associated with a treatment satisfaction. Results We included 1372 patients at baseline with a median age of 76 (IQR 70–81), 34% (n = 462) women. Over follow-up, 997 of these patients progressed to an eGFR<15, and 573 to an eGFR<10 ml/min/1.73 m2. The proportion of patients who reported having received enough information about the decision on when to start dialysis increased with decreasing eGFR (53.2% at baseline to 61.2% (eGFR<15) and 70.9% (eGFR<10)). Among the 638 patients progressing to KRT or eGFR <10 ml/min/1.73 m2, the mean eGFR was 8.9 ml/min/1.73 m2 (SD 3.4) at their last pre-dialysis visit. Patients who reported that they had received sufficient information regarding dialysis timing were in general younger, where median age was 74 (IQR 69.4-79.3) years for those receiving information and 76 (IQR 70.7-81.4) years for those perceiving not having enough information, but there were otherwise no major differences in patient characteristics. Among these patients, 32% had still not decided on which dialysis modality to start with. There was not any statistically significant difference in RSTQ-11 score associated with type of dialysis modality (hemodialysis versus peritoneal dialysis) post dialysis initiation. Among 302 patients who started dialysis, those reporting to have received more information (highest quartile) before start of dialysis also reported being more satisfied with their treatment post dialysis (OR: 1.22; 95% CI 1.05-1.37). Conclusion Although most patients report having received pre-dialysis information, many patients with low kidney function still perceive not having received enough information to make an informed decision. Patients who are well informed are more satisfied with their treatment.
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