Optimizing the use of patients’ individual outcome information – Development and usability tests of a Chronic Kidney Disease dashboard

Horst, Dorinde E. M. van der; Uden–Kraan, Cornelia F. van; Parent, Ellen; Bart, Johannes A J; Waverijn, G.; Verberk-Jonkers, I.J.A.M.; Dorpel, Marinus A. van den; Pieterse, Arwen H.; Bos, Willem Jan W.

doi:10.1016/j.ijmedinf.2022.104838

Cited by 7 publications

(2 citation statements)

References 55 publications

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“…Patients with CKD were interviewed to explore their attitudes towards the use of CPMs in CKD practice. These interviews were held in the context of a larger study on the development of a CKD dashboard [ 47 ]. During these interviews, two different predictions were introduced: 1) the prediction from the KFRE: a 2- and 5-year risk of progression to kidney failure for stages 3 to 5 CKD patients (in %), and 2) a prediction about the time until kidney failure (in years).…”

Section: Methodsmentioning

confidence: 99%

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

et al. 2023

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Introduction Guidelines on chronic kidney disease (CKD) recommend that nephrologists use clinical prediction models (CPMs). However, the actual use of CPMs seems limited in clinical practice. We conducted a national survey study to evaluate: 1) to what extent CPMs are used in Dutch CKD practice, 2) patients’ and nephrologists’ needs and preferences regarding predictions in CKD, and 3) determinants that may affect the adoption of CPMs in clinical practice. Methods We conducted semi-structured interviews with CKD patients to inform the development of two online surveys; one for CKD patients and one for nephrologists. Survey participants were recruited through the Dutch Kidney Patient Association and the Dutch Federation of Nephrology. Results A total of 126 patients and 50 nephrologists responded to the surveys. Most patients (89%) reported they had discussed predictions with their nephrologists. They most frequently discussed predictions regarded CKD progression: when they were expected to need kidney replacement therapy (KRT) (n = 81), and how rapidly their kidney function was expected to decline (n = 68). Half of the nephrologists (52%) reported to use CPMs in clinical practice, in particular CPMs predicting the risk of cardiovascular disease. Almost all nephrologists (98%) reported discussing expected CKD trajectories with their patients; even those that did not use CPMs (42%). The majority of patients (61%) and nephrologists (84%) chose a CPM predicting when patients would need KRT in the future as the most important prediction. However, a small portion of patients indicated they did not want to be informed on predictions regarding CKD progression at all (10–15%). Nephrologists not using CPMs (42%) reported they did not know CPMs they could use or felt that they had insufficient knowledge regarding CPMs. According to the nephrologists, the most important determinants for the adoption of CPMs in clinical practice were: 1) understandability for patients, 2) integration as standard of care, 3) the clinical relevance. Conclusion Even though the majority of patients in Dutch CKD practice reported discussing predictions with their nephrologists, CPMs are infrequently used for this purpose. Both patients and nephrologists considered a CPM predicting CKD progression most important to discuss. Increasing awareness about existing CPMs that predict CKD progression may result in increased adoption in clinical practice. When using CPMs regarding CKD progression, nephrologists should ask whether patients want to hear predictions beforehand, since individual patients’ preferences vary.

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Section: Methodsmentioning

confidence: 99%

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

et al. 2023

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“…Multiple methods support elicitation of patient preferences for CKD care, including interviews, focus groups, surveys, discrete choice experiments, structured tools and simple conversations (Hole et al, 2023;van der Horst et al, 2023). At present, many of these are in research stages.…”

Section: Patient Perspectivesmentioning

confidence: 99%

Mind the gap in kidney care: Translating what we know into what we do

Luyckx,

Tuttle,

Abdellatif

et al. 2024

Journal of Renal Care

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Historically, it takes an average of 17 years to move new treatments from clinical evidence to daily practice. Given the highly effective treatments now available to prevent or delay kidney disease onset and progression, this is far too long. The time is now to narrow the gap between what we know and what we do. Clear guidelines exist for the prevention and management of common risk factors for kidney disease, such as hypertension and diabetes, but only a fraction of people with these conditions worldwide are diagnosed, and even fewer are treated to target. Similarly, the vast majority of people living with kidney disease are unaware of their condition, because in the early stages it is often silent. Even among patients who have been diagnosed, many do not receive appropriate treatment for kidney disease. Considering the serious consequences of kidney disease progression, kidney failure, or death, it is imperative that treatments are initiated early and appropriately. Opportunities to diagnose and treat kidney disease early must be maximized beginning at the primary care level. Many systematic barriers exist, ranging from patient to clinician to health systems to societal factors. To preserve and improve kidney health for everyone everywhere, each of these barriers must be acknowledged so that sustainable solutions are developed and implemented without further delay.

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Moving beyond barriers: a mixed-method study to develop evidence-based strategies to improve implementation of PROMs in clinical oncology care

Boomstra,

Walraven,

van der Ploeg

et al. 2024

Qual Life Res

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Optimizing the use of patients’ individual outcome information – Development and usability tests of a Chronic Kidney Disease dashboard

Cited by 7 publications

References 55 publications

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

Mind the gap in kidney care: Translating what we know into what we do

Moving beyond barriers: a mixed-method study to develop evidence-based strategies to improve implementation of PROMs in clinical oncology care

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