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Patient perspectives on informed decision-making surrounding dialysis initiation.

ABSTRACT: Careful patient-clinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made.Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were examined with content analysis. In addition, informed decision-making (IDM) scores were created by summing patient responses (yes/no) to 10 questions about the decision-making.The mean IDM score was 4.4 (of 10; SD = 2.0); 67% scored 5 or lower. Age at the time of decision-making (r = -0.27, P = 0.006), years of education (r = 0.24, P = 0.02) and presence of a warning about progressing to end-stage kidney disease (t = 2.9, P = 0.005) were significantly associated with IDM scores. Nearly 70% said that the risks and burdens of dialysis were not mentioned at all, and only one patient recalled that the doctor offered the option of not starting dialysis. While a majority (67%) said that they felt they had no choice about starting dialysis (because the alternative would be death) or about dialysis modality, only 21.2% said that they had felt rushed to make a decision. About one-third of the patients perceived that the decision to start dialysis and modality was already made by the doctor.A majority of patients felt unprepared and ill-informed about the initiation of dialysis. Improving the extent of IDM about dialysis may optimize patient preparation prior to starting treatment and their perceptions about the decision-making process.

SUBMITTER: Song MK

PROVIDER: S-EPMC3811056 | biostudies-literature | 2013 Nov

REPOSITORIES: biostudies-literature

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Patient perspectives on informed decision-making surrounding dialysis initiation.

Song Mi-Kyung MK Lin Feng-Chang FC Gilet Constance A CA Arnold Robert M RM Bridgman Jessica C JC Ward Sandra E SE

Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association 20130730 11

<h4>Background</h4>Careful patient-clinician shared decision-making about dialysis initiation has been promoted, but few studies have addressed patient perspectives on the extent of information provided and how decisions to start dialysis are made.<h4>Methods</h4>Ninety-nine maintenance dialysis patients recruited from 15 outpatient dialysis centers in North Carolina completed semistructured interviews on information provision and communication about the initiation of dialysis. These data were e ...[more]

PMID: 23901048

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Project description:Rationale & objectiveDialysis comes with a substantial treatment burden, so patients must select care plans that align with their preferences. We aimed to deepen the understanding of decisional regret with dialysis choices.Study designThis study had a mixed-methods explanatory sequential design.Setting & participantsAll patients from a single academic medical center prescribed maintenance in-center hemodialysis or presenting for home hemodialysis or peritoneal dialysis check-up during 3 weeks were approached for survey. A total of 78 patients agreed to participate. Patients with the highest (15 patients) and lowest decisional regret (20 patients) were invited to semistructured interviews.PredictorsDecisional regret scale and illness intrusiveness scale were used in this study.Analytical approachQuantitatively, we examined correlations between the decision regret scale and illness intrusiveness scale and sorted patients into the highest and lowest decision regret scale quartiles for further interviews; then, we compared patient characteristics between those that consented to interview in high and low decisional regret. Qualitatively, we used an adapted grounded theory approach to examine differences between interviewed patients with high and low decisional regret.ResultsOf patients invited to participate in the interviews, 21 patients (8 high regret, 13 low regret) agreed. We observed that patients with high decisional regret displayed resignation toward dialysis, disruption of their sense of self and social roles, and self-blame, whereas patients with low decisional regret demonstrated positivity, integration of dialysis into their identity, and self-compassion.LimitationsPatients with the highest levels of decisional regret may have already withdrawn from dialysis. Patients could complete interviews in any location (eg, home, dialysis unit, and clinical office), which may have influenced patient disclosure.ConclusionsAlthough all patients experienced disruption after dialysis initiation, patients' approach to adversity differs between patients experiencing high versus low regret. This study identifies emotional responses to dialysis that may be modifiable through patient-support interventions.

Project description:A shared decision-making tool could help elderly patients with advanced chronic kidney disease decide about initiating dialysis therapy. Because mortality may be high in the first few months after initiating dialysis therapy, incorporating early mortality predictors in such a tool would be important for an informed decision. Our objective is to derive and validate a predictive risk score for early mortality after initiating dialysis therapy.Retrospective observational cohort, with development and validation cohorts.US Renal Data System and claims data from the Centers for Medicare & Medicaid Services for 69,441 (aged ?67 years) patients with end-stage renal disease with a previous 2-year Medicare history who initiated dialysis therapy from January 1, 2009, to December 31, 2010.Demographics, predialysis care, laboratory data, functional limitations, and medical history.All-cause mortality in the first 3 and 6 months.Predicted mortality by logistic regression.The simple risk score (total score, 0-9) included age (0-3 points), low albumin level, assistance with daily living, nursing home residence, cancer, heart failure, and hospitalization (1 point each), and showed area under the receiver operating characteristic curve (AUROC)=0.69 in the validation sample. A comprehensive risk score with additional predictors was also developed (with AUROC=0.72, high concordance between predicted vs observed risk). Mortality probabilities were estimated from these models, with the median score of 3 indicating 12% risk in 3 months and 20% in 6 months, and the highest scores (?8) indicating 39% risk in 3 months and 55% in 6 months.Patients who did not choose dialysis therapy and did not have a 2-year Medicare history were excluded.Routinely available information can be used by patients with chronic kidney disease, families, and their nephrologists to estimate the risk of early mortality after dialysis therapy initiation, which may facilitate informed decision making regarding treatment options.

Project description:Background and objectivesBehavioral stage of change (SoC) algorithms classify patients' readiness for medical treatment decision-making. In the precontemplation stage, patients have no intention to take action within 6 months. In the contemplation stage, action is intended within 6 months. In the preparation stage, patients intend to take action within 30 days. In the action stage, the change has been made. This study examines the influence of SoC on dialysis modality decision-making.Design, setting, participants, & measurementsSoC and relevant covariates were measured, and associations with dialysis decision-making were determined. In-depth interviews were conducted with 16 patients on dialysis to elicit experiences. Qualitative interview data informed the survey design. Surveys were administered to adults with CKD (eGFR?25 ml/min/1.73 m(2)) from August, 2012 to June, 2013. Multivariable logistic regression modeled dialysis decision-making with predictors: SoC, provider connection, and dialysis knowledge score.ResultsFifty-five patients completed the survey (71% women, 39% white, and 59% black), and median annual income was $17,500. In total, 65% of patients were in the precontemplation/contemplation (thinking) and 35% of patients were in the preparation/maintenance (acting) SoC; 62% of patients had made dialysis modality decisions. Doctors explaining modality options, higher dialysis knowledge scores, and fewer lifestyle barriers were associated with acting versus thinking SoC (all P<0.02). Patients making modality decisions had doctors who explained dialysis options (76% versus 43%), were in the acting versus the thinking SoC (50% versus 10%), had higher dialysis knowledge scores (1.4 versus 0.5), and had lower eGFR (13.9 versus 16.8 ml/min/1.73 m(2); all P<0.05). In adjusted analyses, dialysis knowledge was significantly associated with decision-making (odds ratio, 4.2; 95% confidence interval, 1.4 to 12.9; P=0.01), and SoC was of borderline significance (odds ratio, 5.8; 95% confidence interval, 1.0 to 32.6; P=0.05). The model C statistic was 0.87.ConclusionsDialysis decision-making was associated with SoC, dialysis knowledge, and physicians discussing treatment options. Future studies determining ways to assist patients with CKD in making satisfying modality decisions are warranted.

Project description:BackgroundHealth insurance enrollment is a difficult financial decision with large health impacts. Challenges such as low health insurance literacy and lack of knowledge about choosing a plan further complicate this decision-making process. Therefore, to support consumers in their choice of a health insurance plan, it is essential to understand how individuals go about making this decision.ObjectiveThis study aims to understand the sources of information used by individuals to support their employer-provided health insurance enrollment decisions. It seeks to describe how individual descriptive factors lead to choosing a particular type of information source.MethodsAn introduction was presented on health insurance plan selection and the sources of information used to support these decisions from the 1980s to the present. Subsequently, an electronic survey of 151 full-time faculty and staff members was conducted. The survey consisted of four sections: demographics, sources of information, health insurance literacy, and technology acceptance. Descriptive statistics were used to show the demographic characteristics of the 126 eligible respondents and to study the response behaviors in the remaining survey sections. Proportion data analysis was performed using the Cochran-Armitage trend test to understand the strength of the association between our variables and the types of sources used by the respondents.ResultsIn terms of demographics, most of the respondents were women (103/126, 81.7%), represented a small household (1-2 persons; 87/126, 69%), and used their insurance 3-12 times a year (52/126, 41.3%). They assessed themselves as having moderate to high health insurance literacy and high acceptance of technology. The most selected and top-ranked sources were Official employer or state websites and Official Human Resources Virtual Benefits Counselor Alex. From our data analysis, we found that the use of official primary sources was constant across age groups and health insurance use groups. Meanwhile, the use of friends or family as a primary source slightly decreased as age and use increased.ConclusionsIn this exploratory study, we identified the main sources of health insurance information among full-time employees from a large state university and found that most of the respondents needed 2-3 sources to gather all the information that they desired. We also studied and identified the relationships between individual factors (such as age, gender, and literacy) and 2 dependent variables on the types of primary sources of information. We encountered several limitations, which will be addressed in future studies.

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Patient perspectives on informed decision-making surrounding dialysis initiation.

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Patient perspectives on informed decision-making surrounding dialysis initiation.

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