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1.
J Am Soc Nephrol ; 34(11): 1812-1818, 2023 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-37729392

RESUMO

ABSTRACT: Latinx populations face a higher burden of kidney failure and associated negative outcomes compared with non-Latinx White populations, despite sharing a similar prevalence of CKD. Community health worker (CHW) interventions have been shown to improve outcomes for Latinx individuals, but they are largely underutilized in kidney disease. We convened a workshop of four ongoing kidney disease CHW programs to identify successes, challenges, potential solutions, and needed research to promote CHW programs for Latinx individuals with kidney disease. Key points from the workshop and recommendations for intervention and research are highlighted. Facilitators of program success included prioritizing trust-building with participants, enabling participants to determine what aspects of the intervention were needed, providing participants with tools to help themselves and others after the intervention, and taking a trauma-informed approach to relationships. Challenges included persistent systemic barriers despite successful care navigation and low recruitment and retention. Research is needed to capture the effect of CHW interventions on outcomes and to determine how to implement CHW interventions for people with kidney disease nationwide.


Assuntos
Nefropatias , Nefrologia , Humanos , Agentes Comunitários de Saúde , Nefropatias/terapia
2.
JMIR Res Protoc ; 12: e46187, 2023 Apr 20.
Artigo em Inglês | MEDLINE | ID: mdl-37079365

RESUMO

BACKGROUND: End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, with most patients with ESKD receiving in-center hemodialysis treatment. This life-saving treatment can result in cardiovascular and hemodynamic instability, with the most common form being low blood pressure during the dialysis treatment (intradialytic hypotension [IDH]). IDH is a complication of hemodialysis that can involve symptoms such as fatigue, nausea, cramping, and loss of consciousness. IDH increases risks of cardiovascular disease and ultimately hospitalizations and mortality. Provider-level and patient-level decisions influence the occurrence of IDH; thus, IDH may be preventable in routine hemodialysis care. OBJECTIVE: This study aims to evaluate the independent and comparative effectiveness of 2 interventions-one directed at hemodialysis providers and another for patients-in reducing the rate of IDH at hemodialysis facilities. In addition, the study will assess the effects of interventions on secondary patient-centered clinical outcomes and examine factors associated with a successful implementation of the interventions. METHODS: This study is a pragmatic, cluster randomized trial to be conducted in 20 hemodialysis facilities in the United States. Hemodialysis facilities will be randomized using a 2 × 2 factorial design, such that 5 sites will receive a multimodal provider education intervention, 5 sites will receive a patient activation intervention, 5 sites will receive both interventions, and 5 sites will receive none of the 2 interventions. The multimodal provider education intervention involved theory-informed team training and the use of a digital, tablet-based checklist to heighten attention to patient clinical factors associated with increased IDH risk. The patient activation intervention involves tablet-based, theory-informed patient education and peer mentoring. Patient outcomes will be monitored during a 12-week baseline period, followed by a 24-week intervention period and a 12-week postintervention follow-up period. The primary outcome of the study is the proportion of treatments with IDH, which will be aggregated at the facility level. Secondary outcomes include patient symptoms, fluid adherence, hemodialysis adherence, quality of life, hospitalizations, and mortality. RESULTS: This study is funded by the Patient-Centered Outcomes Research Institute and approved by the University of Michigan Medical School's institutional review board. The study began enrolling patients in January 2023. Initial feasibility data will be available in May 2023. Data collection will conclude in November 2024. CONCLUSIONS: The effects of provider and patient education on reducing the proportion of sessions with IDH and improving other patient-centered clinical outcomes will be evaluated, and the findings will be used to inform further improvements in patient care. Improving the stability of hemodialysis sessions is a critical concern for clinicians and patients with ESKD; the interventions targeted to providers and patients are predicted to lead to improvements in patient health and quality of life. TRIAL REGISTRATION: ClinicalTrials.gov NCT03171545; https://clinicaltrials.gov/ct2/show/NCT03171545. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46187.

5.
JMIR Hum Factors ; 8(2): e26012, 2021 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-34121664

RESUMO

BACKGROUND: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. OBJECTIVE: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. METHODS: We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. RESULTS: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. CONCLUSIONS: In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context of the role the patients' physical body plays when interacting with the intervention and then through the digital considerations for software and interface interaction.

6.
J Am Med Inform Assoc ; 28(8): 1612-1631, 2021 07 30.
Artigo em Inglês | MEDLINE | ID: mdl-34117493

RESUMO

OBJECTIVE: Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. METHODS: We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. RESULTS: Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients' strength of character and resolve in all parts of their life; respects and supports patients' individual needs, preferences, and choices; and links "feeling better on dialysis" to becoming more involved in IDH prevention. Related design principles included designing for: depth of interpersonal connections; positivity; individual choice and initiative; and comprehension of connections and possible actions. DISCUSSION: Findings advance the design of informatics interventions by presenting design requirements for outpatient safety and addressing key design opportunities for informatics to support patient involvement; these include incorporation of behavior change theories. Results also demonstrate the meaning of design choices for hemodialysis patients in the context of their experiences; this may have applicability to other populations with serious illnesses. CONCLUSION: The resulting patient-facing informatics intervention will be evaluated in a pragmatic cluster-randomized controlled trial in 28 hemodialysis facilities in 4 US regions.


Assuntos
Hipotensão , Participação do Paciente , Grupos Focais , Humanos , Diálise Renal/efeitos adversos , Design Centrado no Usuário
7.
BMC Nephrol ; 21(1): 67, 2020 02 27.
Artigo em Inglês | MEDLINE | ID: mdl-32103726

RESUMO

BACKGROUND: Hemodialysis sessions frequently become unstable from complications such as intradialytic hypotension and untoward symptoms. Previous patient safety initiatives promote prevention of treatment complications; yet, they have placed little specific focus on avoidable session instability. A patient-centered definition of session instability grounded in patient experiences, and an understanding of patient perceptions of causes and solutions to instability, may enable such efforts. METHODS: Twenty-five participants participated in three focus groups and/or a survey. They were purposively sampled for variation in region of residence, and sensitivity to patient well-being. Focus group recordings were analyzed using descriptive coding, in vivo coding, and thematic analysis. RESULTS: Patients define unstable sessions ("bad runs") as those in which they experience severe discomfort or unanticipated events that interfere with their ability to receive therapy. Bad runs were characterized primarily by cramping, low blood pressure ("crashing"), cannulation-related difficulties ("bad sticks"), and clotting of the dialysis circuit or vascular access. Patients believed that cramping and crashing could be explained by both patient and clinician behavior: patient fluid consumption and providers' fluid removal goals. Patients felt that the responsibility for cannulation-related problems lay with dialysis staff, and they asked for different staff or self-cannulated as solutions. Clotting was viewed as an idiosyncratic issue with one's body, and perceived solutions were clinician-driven. Patients expressed concern about "bad runs" on their ability to achieve fluid balance. CONCLUSIONS: Findings point to novel priorities for efforts to enhance hemodialysis session stability, and areas in which patients can be supported to become involved in such efforts.


Assuntos
Hipotensão/etiologia , Cãibra Muscular/etiologia , Diálise Renal/efeitos adversos , Adulto , Idoso , Coagulação Sanguínea , Estudos Transversais , Feminino , Grupos Focais , Humanos , Hipotensão/prevenção & controle , Masculino , Pessoa de Meia-Idade , Cãibra Muscular/prevenção & controle , Equilíbrio Hidroeletrolítico , Desequilíbrio Hidroeletrolítico/complicações
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