IChoose Kidney for Treatment Options: Updated Models for Shared Decision Aid.
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ABSTRACT:
SUBMITTER: Gander JC
PROVIDER: S-EPMC6174324 | biostudies-literature | 2018 Sep
REPOSITORIES: biostudies-literature
Publications
iChoose Kidney for Treatment Options: Updated Models for Shared Decision Aid.
Gander Jennifer C JC Basu Mohua M McPherson Laura L Garber Michael D MD Pastan Stephen O SO Manatunga Amita A Arriola Kimberly Jacob KJ Patzer Rachel E RE
Transplantation 20180901 9
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Project description:Despite a significant survival advantage of kidney transplantation compared with dialysis, nearly one third of end-stage renal disease (ESRD) patients are not educated about kidney transplantation as a treatment option at the time of ESRD diagnosis. Access to individualized, evidence-based prognostic information is needed to facilitate and encourage shared decision making about the clinical implications of whether to pursue transplantation or long-term dialysis.We used a national cohort of incident ESRD patients in the US Renal Data System surveillance registry from 2005 to 2011 to develop and validate prediction models for risk of 1- and 3-year mortality among dialysis versus kidney transplantation. Using these data, we developed a mobile clinical decision aid that provides estimates of risks of death and survival on dialysis compared with kidney transplantation patients.Factors included in the mortality risk prediction models for dialysis and transplantation included age, race/ethnicity, dialysis vintage, and comorbidities, including diabetes, hypertension, cardiovascular disease, and low albumin. Among the validation cohorts, the discriminatory ability of the model for 3-year mortality was moderate (c statistic, 0.7047; 95% confidence interval, 0.7029-0.7065 for dialysis and 0.7015; 95% confidence interval, 0.6875-0.7155 for transplant). We used these risk prediction models to develop an electronic, user-friendly, mobile (iPad, iPhone, and website) clinical decision aid called iChoose Kidney.The use of a mobile clinical decision aid comparing individualized mortality risk estimates for dialysis versus transplantation could enhance communication between ESRD patients and their clinicians when making decisions about treatment options.
| S-EPMC4658512 | biostudies-literature
Project description:We previously developed a mobile- and web-based decision aid (iChoose Kidney) that displays individualized risk estimates of survival and mortality, for the treatment modalities of dialysis versus kidney transplantation. We examined the effect of iChoose Kidney on change in transplant knowledge and access to transplant in a randomized controlled trial among patients presenting for evaluation in three transplant centers. A total of 470 patients were randomized to standard transplantation education (control) or standard education plus iChoose Kidney (intervention). Change in transplant knowledge (primary outcome) among intervention versus control patients was assessed using nine items in pre- and postevaluation surveys. Access to transplant (secondary outcome) was defined as a composite of waitlisting, living donor inquiries, or transplantation. Among 443 patients (n = 226 intervention; n = 216 control), the mean knowledge scores were 5.1 ± 2.1 pre- and 5.8 ± 1.9 postevaluation. Change in knowledge was greater among intervention (1.1 ± 2.0) versus control (0.4 ± 1.8) patients (P < .0001). Access to transplantation was similar among intervention (n = 168; 74.3%) versus control patients (n = 153; 70.5%; P = .37). The iChoose Kidney decision aid improved patient knowledge at evaluation, but did not impact transplant access. Future studies should examine whether combining iChoose Kidney with other interventions can increase transplantation. (Clinicaltrials.gov NCT02235571).
| S-EPMC6510396 | biostudies-literature
Project description:Kidney transplantation is the preferred treatment for patients with end-stage renal disease, as it substantially increases a patient's survival and is cost saving compared to a lifetime of dialysis. However, transplantation is not universally chosen by patients with renal failure, and limited knowledge about the survival benefit of transplantation vs. dialysis may play a role. We created a mobile application clinical decision aid called iChoose Kidney to improve access to individualized prognosis information comparing dialysis and transplantation outcomes. We describe the iChoose Kidney study, a randomized controlled trial designed to test the clinical efficacy of a mobile health decision aid among end-stage renal disease patients referred for kidney transplantation at three large, diverse transplant centers across the U.S. Approximately 450 patients will be randomized to receive either: (1) standard of care or "usual" transplantation education, or (2) standard of care plus iChoose Kidney. The primary outcome is change in knowledge about the survival benefit of kidney transplantation vs. dialysis from baseline to immediate follow-up; secondary outcomes include change in treatment preferences, improved decisional conflict, and increased access to kidney transplantation. Analyses are also planned to examine effectiveness across subgroups of race, socioeconomic status, health literacy and health numeracy. Engaging patients in health care choices can increase patient empowerment and improve knowledge and understanding of treatment choices. If the effectiveness of iChoose Kidney has a greater impact on patients with low health literacy, lower socioeconomic status, and minority race, this decision aid could help reduce disparities in access to kidney transplantation.
| S-EPMC5012277 | biostudies-literature
Project description: Not available
| S-EPMC8115947 | biostudies-literature
Project description: Not available
| S-EPMC7822602 | biostudies-literature
Project description:Objective(s)Birth plans appeared at the end of the twentieth century, enabling women to express their expectations towards childbirth. This reflects a rising demand for patients to take a proactive role in their medical care. This study aimed to collaboratively develop a medical decision aid with expectant mothers to prepare them better for the events surrounding their child's birth.Study designFive topics frequently addressed in birth plans were identified by both patients' associations, using semi-structured interview with representatives of women's associations, and professionals, using an online poll. Initially, work groups with perinatal care professionals drafted items designed to guide expectant mothers in developing their birth plans and actively participating in childbirth decisions. Subsequently, we used a modified Delphi-consensus in three rounds to retain the most relevant items. The first two rounds engaged a multidisciplinary team of professionals, while the third involved expectant mothers from two maternity wards in Lyon, France. Items that received a rating between 3 (good value) and 4 (excellent value) on a 4-point scale by more than 75% of participants were deemed consensual. The study assessed inter-rater agreement using the Fleiss kappa score.ResultsThe professional work groups proposed a total of 124 items distributed across five themes: analgesia during labour, drug administration before and during labour, events in the delivery room, initial neonatal care, and perineal protection. Ultimately, 65.3% of the initial 124 items were deemed relevant by both the experts and the expectant mothers. Notably, the most significant differences in consensus centered around analgesia and the complexity of information. Non-medicinal analgesic methods were favored by mothers-to-be but not by professionals. Conversely, detailed information on delayed cord clamping were favored by experts.ConclusionsA modified Delphi consensus was used to create with expectant mothers a decision aid tool to help them write their birth projects, addressing five main topics that are frequently reported in the literature. We now need to test this tool in clinical practice to assess its relevance in routine obstetrics consultation.
| S-EPMC11916945 | biostudies-literature
Project description:Physicians face a challenge in promoting colorectal cancer screening (CRCS) in the face of multiple competing demands. A decision aid (DA) that clarifies patient preferences and improves decision quality could aid shared decision making (SDM) and be effective at increasing CRCS rates. However, exactly how such DA improves SDM is not clear. This 4-year R01 study funded by the National Cancer Institute seeks to provide detailed understanding of how an interactive DA affects patient-physician communication and SDM, and ultimately CRCS adherence.
| 2118961 | ecrin-mdr-crc
Project description:BackgroundPatient 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.MethodsThe 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.ResultsThe '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.ConclusionsThe '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.
| S-EPMC9257566 | biostudies-literature
Project description:ObjectiveThe objective was to develop a decision aid (DA) to facilitate shared decision making (SDM) around whether to obtain computed tomography (CT) imaging in patients presenting to the emergency department (ED) with suspected uncomplicated ureterolithiasis.MethodsWe used evidence-based DA development methods, including qualitative methods and iterative stakeholder engagement, to develop and refine a DA. Guided by the Ottawa Decision Support Framework, International Patient Decision Aid Standards (IPDAS), and a steering committee made up of stakeholders, we conducted interviews and focus groups with a purposive sample of patients, community members, emergency clinicians, and other stakeholders. We used an iterative process to code the transcripts and identify themes. We beta-tested the DA with patient-clinician dyads facing the decision in real time.ResultsFrom August 2018 to August 2019, we engaged 102 participants in the design and iterative refinement of a DA focused on diagnostic options for patients with suspected ureterolithiasis. Forty-six were ED patients, community members, or patients with ureterolithiasis, and the remaining were emergency clinicians (doctors, residents, advanced practitioners), researchers, urologists, nurses, or other physicians. Patients and clinicians identified several key decisional needs including an understanding of accuracy, uncertainty, radiation exposure/cancer risk, and clear return precautions. Patients and community members identified facilitators to SDM, such as a checklist of signs and symptoms. Many stakeholders, including both patients and ED clinicians, expressed a strong pro-CT bias. A six-page DA was developed, iteratively refined, and beta-tested.ConclusionsUsing stakeholder engagement and qualitative inquiry, we developed an evidence-based DA to facilitate SDM around the question of CT scan utilization in patients with suspected uncomplicated ureterolithiasis. Future research will test the efficacy of the DA in facilitating SDM.
| S-EPMC7580689 | biostudies-literature
Project description:In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates' perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia.Semistructured interview with prestudy and poststudy design for surrogates in the intervention group.Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial.Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups.For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions.The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale.Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid.A structured decision aid can be used to improve decision making about feeding options in dementia care.
| S-EPMC3563876 | biostudies-literature