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1.
Semin Dial ; 33(1): 18-25, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31957929

RESUMO

Governments at national and state levels regulate dialysis care in the United States to ensure safe practices, and continually elevate the quality of care. An objective of these regulatory policies is the independent evaluation of dialysis unit outcomes by patients, caregivers, and the community to facilitate choices as well as to advance equal access to high quality dialysis care. These polices recognized decades ago that it was fundamental to include the patient perspective in the assessment and evaluation of dialysis care quality by requiring both individual and aggregate patient reported outcomes (PROs). Although there is support for integrating the patient perspective, concerns persist about the implementation of these polices including selection of PRO measures, administration timing and reach, as well as interpretation of results including benchmarking to permit comparisons across organizations. The experience from the early adoption of PROs into dialysis policies in conjunction with advances in electronic health records, personal data capture and monitoring, and analytics is poised to address these concerns. The dialysis community has the opportunity to lead the way in innovation related to PRO implementation not only in kidney disease care, but also for other healthcare conditions or contexts such as oncology, surgical, and acute care.


Assuntos
Política de Saúde , Nefropatias/terapia , Medidas de Resultados Relatados pelo Paciente , Qualidade da Assistência à Saúde , Diálise Renal , Humanos , Nefropatias/complicações , Nefropatias/psicologia , Qualidade de Vida , Estados Unidos
2.
Am J Kidney Dis ; 74(6): 811-821, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31606237

RESUMO

African Americans have a 2- to 4-fold greater incidence of end-stage kidney disease (ESKD) than whites, which has long raised the possibility of a genetic cause for this disparity. Recent advances in genetic studies have shown a causal association of polymorphisms at the apolipoprotein L1 gene (APOL1) with the markedly increased risk for the nondiabetic component of the overall disparity in ESKD in African Americans. Although APOL1-associated kidney disease is thought to account for a substantial proportion of ESKD in African Americans, not all the increased risk for ESKD is accounted for, and a complete cataloging of disparities in genetic causes of ESKD eludes our current understanding of genetic-associated kidney disease. Genetic testing aids the screening, diagnosis, prognosis, and treatment of diseases with a genetic basis. Widespread use of genetic testing in clinical practice is limited by the small number of actionable genetic variants, limited health literacy of providers and patients, and underlying complex ethical, legal, and social issues. This perspective reviews racial and ethnic differences associated with genetic diseases and the development of ESKD in African Americans and discusses potential uncertainties associated with our current understanding of penetrance of genetically linked kidney disease and population-attributable risk percent.


Assuntos
Apolipoproteína L1/genética , Negro ou Afro-Americano/genética , Predisposição Genética para Doença/epidemiologia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Falência Renal Crônica/etnologia , Falência Renal Crônica/genética , Negro ou Afro-Americano/estatística & dados numéricos , Estudos de Casos e Controles , Feminino , Testes Genéticos , Disparidades nos Níveis de Saúde , Humanos , Falência Renal Crônica/terapia , Transplante de Rim/estatística & dados numéricos , Masculino , Avaliação das Necessidades , Diálise Renal/estatística & dados numéricos , Estados Unidos
3.
Am J Nephrol ; 50(4): 303-311, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31480040

RESUMO

BACKGROUND: Apolipoprotein A1 (APOL1) gene variants occurring in people of West African descent contribute to the greater burden of kidney disease among African Americans. These variants are associated with increased risk of nondiabetic nephropathy, more rapid progression of chronic kidney disease, and shorter survival of donor kidneys after transplantation. However, only a minority of people with APOL1-associated risk develops kidney disease and specific clinical measures to address APOL1-associated risk are lacking. Given these uncertainties, we sought to engage members of the African American public in discussions with other stakeholders about the appropriate use of APOL1 testing. METHODS: Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward APOL1 testing and informed the design of 3 community-based deliberations among African Americans. A national meeting held in March 2018 included 13 community members, 7 scientific advisors and 26 additional researchers, clinicians, bioethicists, patient advocates, and representatives from professional organizations and federal funding agencies. Using small break-out and plenary discussion, the group agreed on recommendations based on current knowledge about APOL1-associated risk. RESULTS: Meeting outcomes included recommendations to develop educational materials about APOL1 for community members and clinicians; to offer APOL1 research results to participants; and on the use of APOL1testing in kidney transplant programs. The group recommended against the routine offer of APOL1 testing in clinical care. Areas of disagreement included whether kidney transplant programs should require APOL1 testing of prospective living donors or bar individuals with APOL1 risk from donating kidneys and whether testing should be available on request in routine clinical care. CONCLUSION: We recommend continued discussion among stakeholders and concerted efforts to ensure active and informed participation of members of the affected community to guide research on APOL1 and kidney disease.


Assuntos
Apolipoproteína L1/genética , Negro ou Afro-Americano/genética , Participação da Comunidade , Testes Genéticos/métodos , Política de Saúde , Falência Renal Crônica/etnologia , Falência Renal Crônica/genética , Pesquisa Participativa Baseada na Comunidade , Congressos como Assunto , Progressão da Doença , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde , Humanos , Comunicação Interdisciplinar , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/cirurgia , Transplante de Rim/mortalidade , Mississippi , Estudos Prospectivos , Tennessee , Obtenção de Tecidos e Órgãos/legislação & jurisprudência , Obtenção de Tecidos e Órgãos/métodos , Resultado do Tratamento , Washington
4.
Am J Nephrol ; 49(6): 449-459, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30995659

RESUMO

BACKGROUND: Acute kidney injury (AKI) survivors are at risk for chronic kidney disease, recurrent AKI, and cardiovascular disease. The transition from hospital to ambulatory care is an opportunity to reduce these sequelae by launching self-care plans through effective patient education. How well AKI survivors are informationally prepared to apply kidney-specific self-care is unknown. The purpose of this study was to identify awareness and disease-specific knowledge among AKI survivors. METHODS: We performed a cross-sectional survey of AKI-related awareness and knowledge in 137 patients with Kidney Disease Improving Global Outcomes Stage II or III AKI near the time of hospital discharge. Patients were asked (1) "Did you experience AKI while in the hospital?" and (2) "Do you have a problem with your kidney health?" Objective knowledge of AKI was evaluated with a 15-item adapted version of the validated Kidney Knowledge Survey that included topics such as common causes, risk factors, and how AKI is diagnosed. RESULTS: Median age was 54 (interquartile range 43-63) and 81% were white. Eighty percent of patients were unaware that they had experienced AKI and 53% were both unaware they had experienced AKI or had a "problem with their kidneys." Multivariable logistic regression identified being male and lack of nephrology consult as predictors of unawareness with ORs of 3.92 (95% CI 1.48-10.33) and 5.10 (95% CI 1.98-13.13), respectively. Less than 50% recognized nonsteroidal anti-inflammatory drugs, contrast, or phosphate-based cathartics as risk factors for AKI. Two-thirds of patients did not agree that they knew a lot about AKI and more than 80% desired more information. CONCLUSIONS: Most patients with moderate to severe AKI are unaware of their condition, lack understanding of risk factors for recurrent AKI, and desire more information. Patient-centered communication to optimize awareness, understanding, and care will require coordinated educational strategies throughout the continuum of AKI care.


Assuntos
Injúria Renal Aguda/complicações , Doenças Cardiovasculares/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Insuficiência Renal Crônica/prevenção & controle , Sobreviventes/estatística & dados numéricos , Injúria Renal Aguda/diagnóstico , Injúria Renal Aguda/epidemiologia , Injúria Renal Aguda/fisiopatologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doenças Cardiovasculares/etiologia , Comunicação , Estudos Transversais , Feminino , Humanos , Rim/fisiopatologia , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Recidiva , Insuficiência Renal Crônica/etiologia , Fatores de Risco , Inquéritos e Questionários/estatística & dados numéricos , Adulto Jovem
5.
J Behav Med ; 42(2): 376-379, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30623275

RESUMO

In the original publication of the article, the majority of changes stem from misclassification of "medium adherence" when using the Morisky Medication Adherence Scale (MMAS-8) and not using the correct scoring algorithm for one of the responses when calculating MMAS-8 total scores.

7.
Kidney Int ; 92(4): 972-978, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28528132

RESUMO

Chronic Kidney Disease (CKD) is a major burden on patients and the health care system. Treatment of CKD requires dedicated involvement from both caretakers and patients. Self-efficacy, also known as perceived competence, contributes to successful maintenance of patient's CKD self-management behaviors such as medication adherence and dietary regulations. Despite a clear association between self-efficacy and improved CKD outcomes, there remains a lack of validated self-report measures of CKD self-efficacy. To address this gap, the Perceived Kidney/Dialysis Self-Management Scale (PKDSMS) was adapted from the previously validated Perceived Medical Condition Self-Management Scale. We then sought to validate this using data from two separate cohorts: a cross-sectional investigation of 146 patients with end-stage renal disease receiving maintenance hemodialysis and a longitudinal study of 237 patients with CKD not receiving dialysis. The PKDSMS was found to be positively and significantly correlated with self-management behaviors and medication adherence in both patient cohorts. The PKDSMS had acceptable reliability, was internally consistent, and exhibited predictive validity between baseline PKDSMS scores and self-management behaviors across multiple time points. Thus, the PKDSMS is a valid and reliable measure of CKD patient self-efficacy and supports the development of interventions enhancing perceived competence to improve CKD self-management.


Assuntos
Gerenciamento Clínico , Adesão à Medicação/psicologia , Insuficiência Renal Crônica/terapia , Autoeficácia , Autogestão/psicologia , Adulto , Idoso , Estudos Transversais , Feminino , Letramento em Saúde , Humanos , Estudos Longitudinais , Masculino , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Diálise Renal , Insuficiência Renal Crônica/psicologia , Reprodutibilidade dos Testes , Autorrelato
8.
J Behav Med ; 39(6): 1104-1114, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27167227

RESUMO

This study was designed to assess dialysis subjects' perceived autonomy support association with phosphate binder medication adherence, race and gender. A multi-site cross-sectional study was conducted among 377 dialysis subjects. The Health Care Climate (HCC) Questionnaire assessed subjects' perception of their providers' autonomy support for phosphate binder use, and adherence was assessed by the self-reported Morisky Medication Adherence Scale. Serum phosphorus was obtained from the medical record. Regression models were used to examine independent factors of medication adherence, serum phosphorus, and differences by race and gender. Non-white HCC scores were consistently lower compared with white subjects' scores. No differences were observed by gender. Reported phosphate binder adherence was associated with HCC score, and also with phosphorus control. No significant association was found between HCC score and serum phosphorus. Autonomy support, especially in non-white end stage renal disease subjects, may be an appropriate target for culturally informed strategies to optimize mineral bone health.


Assuntos
Pessoal de Saúde/psicologia , Hiperfosfatemia/psicologia , Falência Renal Crônica/psicologia , Adesão à Medicação/psicologia , Grupos Minoritários/psicologia , Estudos Transversais , Feminino , Humanos , Hiperfosfatemia/sangue , Hiperfosfatemia/complicações , Hiperfosfatemia/tratamento farmacológico , Falência Renal Crônica/sangue , Falência Renal Crônica/complicações , Masculino , Pessoa de Meia-Idade , Fósforo/sangue , Autorrelato , Fatores Sexuais
9.
J Am Soc Nephrol ; 26(10): 2578-87, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25736045

RESUMO

Ferric citrate (FC) is a phosphate binder with shown efficacy and additional effects on iron stores and use of intravenous (iv) iron and erythropoiesis-stimulating agents (ESAs). We provide detailed analyses of changes in iron/hematologic parameters and iv iron/ESA use at time points throughout the active control period of a phase 3 international randomized clinical trial. In all, 441 subjects were randomized (292 to FC and 149 to sevelamer carbonate and/or calcium acetate [active control (AC)]) and followed for 52 weeks. Subjects on FC had increased ferritin and transferrin saturation (TSAT) levels compared with subjects on AC by week 12 (change in ferritin, 114.1±29.35 ng/ml; P<0.001; change in TSAT, 8.62%±1.57%; P<0.001). Change in TSAT plateaued at this point, whereas change in ferritin increased through week 24, remaining relatively stable thereafter. Subjects on FC needed less iv iron compared with subjects on AC over 52 weeks (median [interquartile range] dose=12.9 [1.0-28.9] versus 26.8 [13.4-47.6] mg/wk; P<0.001), and the percentage of subjects not requiring iv iron was higher with FC (P<0.001). Cumulative ESA over 52 weeks was lower with FC than AC (median [interquartile range] dose=5303 [2023-9695] versus 6954 [2664-12,375] units/wk; P=0.04). Overall, 90.3% of subjects on FC and 89.3% of subjects on AC experienced adverse events. In conclusion, treatment with FC as a phosphate binder results in increased iron parameters apparent after 12 weeks and reduces iv iron and ESA use while maintaining hemoglobin over 52 weeks, with a safety profile similar to that of available binders.


Assuntos
Anemia/tratamento farmacológico , Compostos Férricos/uso terapêutico , Hematínicos/administração & dosagem , Ferro/administração & dosagem , Administração Intravenosa , Anemia/etiologia , Quimioterapia Combinada , Feminino , Humanos , Falência Renal Crônica/complicações , Masculino , Pessoa de Meia-Idade
10.
BMC Nephrol ; 16: 37, 2015 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-25885460

RESUMO

BACKGROUND: Early preparation for renal replacement therapy (RRT) is recommended for patients with advanced chronic kidney disease (CKD), yet many patients initiate RRT urgently and/or are inadequately prepared. METHODS: We conducted audio-recorded, qualitative, directed telephone interviews of nephrology health care providers (n = 10, nephrologists, physician assistants, and nurses) and primary care physicians (PCPs, n = 4) to identify modifiable challenges to optimal RRT preparation to inform future interventions. We recruited providers from public safety-net hospital-based and community-based nephrology and primary care practices. We asked providers open-ended questions to assess their perceived challenges and their views on the role of PCPs and nephrologist-PCP collaboration in patients' RRT preparation. Two independent and trained abstractors coded transcribed audio-recorded interviews and identified major themes. RESULTS: Nephrology providers identified several factors contributing to patients' suboptimal RRT preparation, including health system resources (e.g., limited time for preparation, referral process delays, and poorly integrated nephrology and primary care), provider skills (e.g., their difficulty explaining CKD to patients), and patient attitudes and cultural differences (e.g., their poor understanding and acceptance of their CKD and its treatment options, their low perceived urgency for RRT preparation; their negative perceptions about RRT, lack of trust, or language differences). PCPs desired more involvement in preparation to ensure RRT transitions could be as "smooth as possible", including providing patients with emotional support, helping patients weigh RRT options, and affirming nephrologist recommendations. Both nephrology providers and PCPs desired improved collaboration, including better information exchange and delineation of roles during the RRT preparation process. CONCLUSIONS: Nephrology and primary care providers identified health system resources, provider skills, and patient attitudes and cultural differences as challenges to patients' optimal RRT preparation. Interventions to improve these factors may improve patients' preparation and initiation of optimal RRTs.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Comunicação Interdisciplinar , Nefrologia/tendências , Médicos de Atenção Primária/tendências , Qualidade da Assistência à Saúde , Terapia de Substituição Renal/normas , Atitude do Pessoal de Saúde , Feminino , Humanos , Entrevistas como Assunto , Masculino , Relações Médico-Paciente , Pesquisa Qualitativa , Encaminhamento e Consulta/estatística & dados numéricos , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapia , Terapia de Substituição Renal/tendências , Medição de Risco , Resultado do Tratamento
11.
J Ren Nutr ; 25(5): 433-9, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25912398

RESUMO

OBJECTIVE: Hyperphosphatemia is common in end-stage renal disease and associates with mortality. Phosphate binders reduce serum phosphorus levels; however, adherence is often poor. This pilot study aims to assess patients' self-motivation to adhere to phosphate binders, its association with phosphorus control, and potential differences by race. DESIGN AND METHODS: Cross sectional design. Subjects were enrolled from one academic medical center dialysis practice from July to November 2012. Self-motivation to adhere to phosphate binders was assessed with the autonomous regulation (AR) scale (range: 1-7) and self-reported medication adherence with the Morisky Medication Adherence Scale. Linear regression models adjusting for age, sex, health literacy, and medication adherence were applied to determine associations with serum phosphorus level, including any evidence of interaction by race. RESULTS: Among 100 participants, mean age was 51 years (±15 years), 53% were male, 72% were non-white, 89% received hemodialysis, and mean serum phosphorus level was 5.7 ± 1.6 mg/dL. More than half (57%) reported the maximum AR score (7). Higher AR scores were noted in those reporting better health overall (P = .001) and those with higher health literacy (P = .01). AR score correlated with better medication adherence (r = 0.22; P = .02), and medication adherence was negatively associated with serum phosphorus (r = -0.40; P < .001). In subgroup analysis among non-whites, higher AR scores correlated with lower serum phosphorus (high vs lower AR score: 5.55 [1.5] vs 6.96 [2.2]; P = .01). Associations between AR score (ß 95% confidence interval: -0.37 [-0.73 to -0.01]; P = .04), medication adherence (ß 95% confidence interval: -0.25 [-0.42 to -0.07]; P = .01), and serum phosphorus persisted in adjusted analyses. CONCLUSIONS: Self-motivation was associated with phosphate binder adherence and phosphorus control, and this differed by race. Additional research is needed to determine if personalized, culturally sensitive strategies to understand and overcome motivational barriers may optimize mineral bone health in end-stage renal disease.


Assuntos
Hiperfosfatemia/sangue , Falência Renal Crônica/sangue , Motivação , Fósforo/sangue , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Falência Renal Crônica/terapia , Modelos Lineares , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Projetos Piloto , Diálise Renal , Autorrelato
13.
Nurse Pract ; 49(7): 13-20, 2024 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-38915144

RESUMO

ABSTRACT: This article offers a guide for NPs for managing hypertension (HTN) in adults in the setting of chronic kidney disease (CKD). It outlines evidence-based strategies, including lifestyle modifications, pharmacologic interventions, and patient education measures, that can be used in patients with CKD to optimize BP control. Special considerations, such as comorbid mental health conditions and individualized treatment plans, are also addressed. NPs play a pivotal role in improving outcomes by fostering patient engagement and adherence. By embracing this holistic approach, NPs are poised to enhance the quality of care and well-being of patients with CKD and HTN.


Assuntos
Hipertensão , Profissionais de Enfermagem , Insuficiência Renal Crônica , Humanos , Insuficiência Renal Crônica/complicações , Insuficiência Renal Crônica/enfermagem , Hipertensão/enfermagem , Hipertensão/tratamento farmacológico , Anti-Hipertensivos/uso terapêutico , Educação de Pacientes como Assunto , Guias de Prática Clínica como Assunto
14.
Kidney360 ; 4(1): 41-53, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36700903

RESUMO

BACKGROUND: Patients with ESKD treated with hemodialysis in the United States have persistently higher rates of nonadherence compared with patients in other developed countries. Nonadherence is associated with an increased risk of death and higher medical expenditure. There is an urgent need to address it with feasible, effective interventions as the prevalence of patients on hemodialysis in the United States continues to grow. However, published adherence interventions demonstrate limited long-term efficacy. METHODS: We conducted a synthesis of qualitative studies on adherence to hemodialysis treatment, medications, and fluid and dietary restrictions to identify gaps in published adherence interventions, searching PubMed, CINAHL, PsychInfo, Embase, and Web of Science databases. We analyzed qualitative data with a priori codes derived from the World Health Organization's adherence framework and subsequent codes from thematic analysis. RESULTS: We screened 1775 articles and extracted qualitative data from 12. The qualitative data revealed 20 factors unique to hemodialysis across the World Health Organization's five dimensions of adherence. In addition, two overarching themes emerged from the data: (1) adherence in the context of patients' whole lives and (2) dialysis treatment as a double-edged sword. Patient-level factors reflected in the qualitative data extended beyond knowledge about hemodialysis treatment or motivation to adhere to treatment. Patients described a profound grieving process over the loss of their "old self" that impacted adherence. They also navigated complex challenges that could be exacerbated by social determinants of health as they balanced treatment, life tasks, and social roles. CONCLUSIONS: This review adds to the growing evidence that one-size-fits-all approaches to improving adherence among patients on hemodialysis are inadequate. Adherence may improve when routine care incorporates patient context and provides ongoing support to patients and families as they navigate the logistical, physical, and psychological hardships of living with dialysis. New research is urgently needed to guide a change in course.


Assuntos
Motivação , Diálise Renal , Humanos , Estados Unidos
15.
Kidney Med ; 5(5): 100630, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-37139080

RESUMO

Rationale and Objective: The 'PEER-HD' multicenter study tests the effectiveness of peer mentorship to reduce hospitalizations in patients receiving maintenance hemodialysis. In this study, we describe the feasibility, efficacy, and acceptability of the mentor training program. Study Design: Educational program evaluation including the following aspects: (1) description of training content, (2) quantitative analysis of feasibility and acceptability of the program, and (3) quantitative pre-post analysis of efficacy of the training to impart knowledge and self-efficacy. Setting and Participants: Data were collected using baseline clinical and sociodemographic questionnaires from mentor participants enrolled in Bronx, NY, and Nashville, TN, themselves receiving maintenance hemodialysis. Analytical Approach: The outcome variables were the following: (1) feasibility measured by training module attendance and completion, (2) efficacy of the program to impart knowledge and self-efficacy measured by kidney knowledge and self-efficacy surveys, and (3) acceptability as measured by an 11-item survey of trainer performance and module content. Results: The PEER-HD training program included 4 2-hour modules that covered topics including dialysis-specific knowledge and mentorship skills. Of the 16 mentor participants, 14 completed the training program. There was complete attendance to all training modules, though some patients required flexibility in scheduling and format. Performance on posttraining quizzes was consistent with high knowledge (mean scores ranged from 82.0%-90.0% correct). Mean dialysis-specific knowledge scores trended higher post training than at baseline though this difference was not statistically significant (90.0% vs 78.1%; P = 0.1). No change in mean self-efficacy scores was demonstrated from before to after training, among mentor participants (P = 0.2). Program evaluation assessments of acceptability were favorable [mean of all patient scores (0-4) within each module ranged from 3.43-3.93]. Limitations: Small sample size. Conclusions: The PEER-HD mentor training program required accommodation to patients' schedules but was feasible. Participants rated the program favorably, and although the comparison of performance on knowledge assessments post- and pre-program showed uptake of knowledge, this was not statistically significant.

16.
Perit Dial Int ; 43(3): 231-240, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36855928

RESUMO

INTRODUCTION: Peritoneal dialysis (PD) catheter complications reduce quality of life and increase risks for hospitalizations, for unplanned transitions to haemodialysis and for death. Patient PD catheter management is crucial for safe, sustained PD. Patient perspectives on strategies for living with PD and using a PD catheter may inform efforts to reduce PD catheter complications, increase individual patient PD modality persistence, and thus increase overall home dialysis prevalence. METHODS: We interviewed 32 adult PD patients in Nashville, Tennessee. Qualitative analyses included (1) isolation of themes, (2) development of a coding system and (3) creation of a conceptual framework using an inductive-deductive approach. RESULTS: Challenges identified by patients as important included drain pain, difficulty eating and sleeping, and fear of peritonitis. Coping strategies included repositioning while draining, adjusting eating patterns, and development of PD patient and helper knowledge and confidence, especially at home after initial training. Patients described a trial-and-error iterative process of trying multiple strategies with input from multiple sources, which led to individualised solutions. CONCLUSIONS: The trial-and-error process may be crucial for maintaining PD. Individual patient success with PD may be promoted by creating expectations during training that a solution may require multiple attempts, and by a reimbursement policy that supports robust nursing support for safe progression through the trial-and-error process, particularly in the first few months for incident patients. Interventions to support patient motivation and optimal coping behaviour may also support an increase in PD modality duration for individual patients, and thus increase overall PD prevalence.


Assuntos
Falência Renal Crônica , Diálise Peritoneal , Peritonite , Adulto , Humanos , Diálise Peritoneal/efeitos adversos , Qualidade de Vida , Falência Renal Crônica/terapia , Falência Renal Crônica/complicações , Diálise Renal/efeitos adversos , Peritonite/etiologia , Catéteres/efeitos adversos
17.
J Natl Med Assoc ; 114(3S2): S3-S9, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-35589418

RESUMO

Diabetes and hypertension are the most common causes of chronic kidney disease (CKD) in the general population as well as in the Black and African American population, who also suffer from high rates of CKD and CKD progression compared to the White population. Progression of CKD can lead to kidney failure, and patients with progressive kidney disease have a high risk of premature mortality, particularly from cardiovascular disease. Screening for early detection of CKD is important as it facilitates the initiation of medications that have been shown to delay the progression of diabetes-related as well as non-diabetes-related CKD, and reduce rates of death from both kidney and cardiovascular disease. The potential adverse effects from use of some of the newer reno- and cardio-protective glucose-lowering medications, such as the sodium glucose cotransporter-2 inhibitors, may be effectively avoided with detailed patient education and monitoring by the healthcare provider. It is important to note that lifestyle modification including regular exercise, diet, and smoking cessation are first-line in the management of diabetes and hypertension. When CKD occurs, co-management by providers using a comprehensive strategy may avert early complications and facilitate appropriate early referral for nephrology specialty care.


Assuntos
Doenças Cardiovasculares , Diabetes Mellitus , Hipertensão , Insuficiência Renal Crônica , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/etiologia , Doenças Cardiovasculares/prevenção & controle , Humanos , Hipertensão/complicações , Hipertensão/terapia , Grupos Minoritários , Insuficiência Renal Crônica/epidemiologia , Insuficiência Renal Crônica/etiologia , Insuficiência Renal Crônica/terapia
18.
Kidney Med ; 4(2): 100394, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-35243306

RESUMO

RATIONALE & OBJECTIVE: Thrice-weekly hemodialysis can result in adequate urea clearance; however, the morbidity and mortality rates of patients treated with maintenance dialysis remain unacceptably high, partly because of nonadherence. African Americans have a higher prevalence of kidney failure treated with dialysis, greater dialysis nonadherence, and higher odds of hospitalization. We hypothesized that more precise ways of assessing dialysis treatment adherence will reflect the severity of nonadherence, distinguish patterns of nonadherence, and inform the design of personalized behavioral interventions. STUDY DESIGN: Retrospective cohort study. SETTING & PARTICIPANTS: African American patients receiving hemodialysis for >90 days. EXPOSURE: Hemodialysis. OUTCOME: Dialysis adherence. ANALYTICAL APPROACH: Dialysis attendance data were displayed using a dot plot, categorized based on missed and shortened treatments, and examined for patterns. Descriptive characteristics were reported. In an exploratory analysis, associations between dialysis treatment adherence and participant characteristics were evaluated using ordinary least squares regression. An analysis was performed using missed minutes of dialysis and current metrics for measuring dialysis treatment adherence (ie, missed and shortened treatments). RESULTS: Among 113 African American patients treated with dialysis, 47% were men; the median age was 57 years (interquartile range, 46-70 years), and the median dialysis vintage was 54 months (interquartile range, 22-90 months). With rows ordered based on the total missed minutes of dialysis, the dot plot displayed a decreasing gradient in the severity of nonadherence, with novel dialysis treatment adherence categories termed as follows: consistent underdialysis, inconsistent dialysis, and consistent dialysis. Distinct patterns of nonadherence and heterogeneity emerged within these categories. Older age was consistently associated with better adherence, as determined by the analyses performed using the total missed minutes of dialysis as well as missed and shortened treatments. LIMITATIONS: The study findings, although replicable and paradigm-shifting, might be limited by the short timeline, focus on adherence data specific to African American patients treated with dialysis, and restriction to dialysis units affiliated with 1 academic center. CONCLUSIONS: This study presents more precise and novel ways of measuring and displaying dialysis treatment adherence. The findings introduce a more personalized approach for evaluating actual dialysis uptake. Identification of unique patterns of adherence behavior is important to inform the design of effective behavioral interventions and improve outcomes for vulnerable African American patients treated with dialysis.

19.
J Empir Res Hum Res Ethics ; 17(1-2): 4-14, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34870514

RESUMO

The ethics of returning nonactionable genetic research results to individuals are unclear. Apolipoprotein L1 (APOL1) genetic variants are nonactionable, predominantly found in people of West African ancestry, and contribute to kidney disease disparities. To inform ethical research practice, we interviewed researchers, clinicians, and African American community members (n = 76) about the potential risks and benefits of returning APOL1 research results. Stakeholders strongly supported returning APOL1 results. Benefits include reciprocity for participants, community education and rebuilding trust in research, and expectation of future actionability. Risks include analytic validity, misunderstanding, psychological burdens, stigma and discrimination, and questionable resource tradeoffs.Conclusions:APOL1 results should be offered to participants. Responsibly fulfilling this offer requires careful identification of best communication practices, broader education about the topic, and ongoing community engagement.


Assuntos
Apolipoproteína L1 , Transplante de Rim , Negro ou Afro-Americano/psicologia , Apolipoproteína L1/genética , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos
20.
Patient Prefer Adherence ; 16: 3095-3110, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36404799

RESUMO

Background: Black Americans have a disproportionately increased risk of diabetes, hypertension, and kidney disease, and higher associated morbidity, mortality, and hospitalization rates than their White peers. Structural racism amplifies these disparities, and negatively impacts self-care including medication adherence, critical to chronic disease management. Systematic evidence of successful interventions to improve medication adherence in Black patients with diabetes, hypertension, and kidney disease is lacking. Knowledge of the impact of therapeutic alliance, ie, the unique relationship between patients and providers, which optimizes outcomes especially for minority populations, is unclear. The role and application of behavioral theories in successful development of medication adherence interventions specific to this context also remains unclear. Objective: To evaluate the existing evidence on the salience of a therapeutic alliance in effective interventions to improve medication adherence in Black patients with diabetes, hypertension, or kidney disease. Data Sources: Medline (via PubMed), EMBASE (OvidSP), Cumulative Index of Nursing and Allied Health Literature (CINAHL) (EBSCOhost), and PsycINFO (ProQuest) databases. Review Methods: Only randomized clinical trials and pre/post intervention studies published in English between 2009 and 2022 with a proportion of Black patients greater than 25% were included. Narrative synthesis was done. Results: Eleven intervention studies met the study criteria and eight of those studies had all-Black samples. Medication adherence outcome measures were heterogenous. Five out of six studies which effectively improved medication adherence, incorporated therapeutic alliance. Seven studies informed by behavioral theories led to significant improvement in medication adherence. Discussion/Conclusion: Study findings suggest that therapeutic alliance-based interventions are effective in improving medication adherence in Black patients with diabetes and hypertension. Further research to test the efficacy of therapeutic alliance-based interventions to improve medication adherence in Black patients should ideally incorporate cultural adaptation, theoretical framework, face-to-face delivery mode, and convenient locations.

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