Development of an online patient decision aid for kidney failure treatment modality decisions.

Autor: Engels N; Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, the Netherlands. n.engels@santeon.nl.; Department of Internal Medicine, Maasstad Hospital, Rotterdam, the Netherlands. n.engels@santeon.nl.; Department of Internal Medicine, Leiden University Medical Centre, Leiden, the Netherlands. n.engels@santeon.nl., van der Nat PB; Department of Value-Based Health Care, St. Antonius Hospital, Nieuwegein, the Netherlands.; IQ Healthcare, Radboud University Medical Centre, Nijmegen, the Netherlands., Ankersmid JW; Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, the Netherlands., Prick JCM; Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, the Netherlands.; Department of Neurology, OLVG, Amsterdam, the Netherlands., Parent E; Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, the Netherlands.; Department of Quality and Improvement, Maasstad Hospital, Rotterdam, the Netherlands., The R; Department of Development, ZorgKeuzeLab, Delft, the Netherlands., Takahashi A; Department of Development, ZorgKeuzeLab, Delft, the Netherlands., Bart HAJ; Department of Shared Decision-Making and Value-Based Health Care, Nierpatiënten Vereniging Nederland, Bussum, the Netherlands., van Uden-Kraan CF; Department of Shared Decision-Making and Value-Based Health Care, Santeon, Utrecht, the Netherlands., Stiggelbout AM; Department of Biomedical Data Sciences, Leiden University Medical Centre, Leiden, the Netherlands., Bos WJW; Department of Internal Medicine, Leiden University Medical Centre, Leiden, the Netherlands.; Department of Internal Medicine, St. Antonius Hospital, Nieuwegein, the Netherlands., van den Dorpel MA; Department of Internal Medicine, Maasstad Hospital, Rotterdam, the Netherlands.
Jazyk: angličtina
Zdroj: BMC nephrology [BMC Nephrol] 2022 Jul 06; Vol. 23 (1), pp. 236. Date of Electronic Publication: 2022 Jul 06.
DOI: 10.1186/s12882-022-02853-0
Abstrakt: Background: Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients' risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice.
Methods: The International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice.
Results: The 'Kidney Failure Decision Aid' consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A 'patients-like-me' infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020.
Conclusions: The 'Kidney Failure Decision Aid' was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial.
(© 2022. The Author(s).)
Databáze: MEDLINE
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