Discussions during shared decision-making in older adults with advanced renal disease: a scoping review

Rajesh, R; Thiruvengadam, Srivathsan; Ahuja, Kiran; Frandsen, Mai; Jose, Matthew

doi:10.1136/bmjopen-2019-031427

Cited by 21 publications

(33 citation statements)

References 124 publications

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“…We had accordingly planned to perform focus groups with elderly and culturally diverse patients. We hypothesize that these patients have different needs and preferences regarding PtDAs and the use of outcome information for decision-making [ 38 – 40 ]. However, we were unable to perform these focus groups due to the first wave of the COVID-19 pandemic.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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“…These general factors (Table 1) are extended to the numerous disease specific factors presented in Table 2. In the literature, access to PC is not constricted to strictly defined primary causes of deaths, but is enumerated with regard to all major ones due to chronic diseases [8], [12][13][14][15][16][17][18][19][20][21]. Cancer, as a leading group of diseases referred to PC, is definitely not a homogenous group of disorders.…”

Section: Prognosis-based Criteriamentioning

confidence: 99%

Medical referral criteria for palliative care in adults: a scoping review

Grądalski¹

2022

Polish Archives of Internal Medicine

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Palliative care is focused on the relief of serious suffering due to severe illness. The Polish health reimbursement system limits it to a "basket" of recipients with life-limiting incurable diseases (mainly cancer), not responding to disease-modifying therapy. This scoping literature review was aimed at establishing a definition for the criteria of medical referral with regard to "life-limiting illness" and "disease-modifying therapy", which may aid in increasing appropriate treatment and referrals. The PubMed and Google Scholar databases (2011)(2012)(2013)(2014)(2015)(2016)(2017)(2018)(2019)(2020)(2021) were searched in the context of referral/eligibility/admission and end-stage/palliative care. Of 790 research articles, 103 studies met the inclusion criteria. Two groups of referral criteria were found: disease/prognosis-and needs-based. The first was concentrated on 6-12-month survival prognosis, the second encompassed the presence of severe/complex/persistent symptoms/problems not responding to optimal treatment. Numerous examples of diseasemodifying treatments within specific advanced diseases were found. The discriminants characterizing life-limited diseases in individual cases should be preferably used in clusters to accurately screen for eligibility. Equally important as limited prognosis is the presence of severe, complex, and persistent symptoms or problems occurring despite optimal treatment and general care. Based on the reviewed findings, national reimbursement coverage should be urgently extended to cover more patients who are eligible and could benefit from specialist palliative care. Additionally, general palliative care should be universally acknowledged.

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“…The scoping review from 2019 by Raj et al 18 focused on advanced kidney disease and treatment options for older adults. In contrast to our scoping review, the focus was on information likely to be of value when choosing whether to undergo dialysis 18 …”

Section: Introductionmentioning

confidence: 99%

“…In contrast to our scoping review, the focus was on information likely to be of value when choosing whether to undergo dialysis. 18 The scoping review protocol from 2020 by Engels et al 19 aimed to provide an overview of existing shared decision-making interventions for treatment modality decisions in patients with advanced kidney disease (ie, estimated glomerular filtration rate <30 mL/min/1.73 m 2 ). The focus was on shared decision-making interventions and ESKD in general, and not on EoLC decisions.…”

Section: Introductionmentioning

confidence: 99%

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

Buur

Finderup

Søndergaard

et al. 2021

JBI Evidence Synthesis

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The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services. Introduction:Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care. Inclusion criteria:The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care.Methods: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

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Discussions during shared decision-making in older adults with advanced renal disease: a scoping review

Cited by 21 publications

References 124 publications

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

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

Medical referral criteria for palliative care in adults: a scoping review

Mapping the empirical evidence on patient involvement interventions in patients with end-stage kidney disease making end-of-life care decisions: a scoping review protocol

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