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Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.

ABSTRACT: Patients undergoing hemodialysis have an annual mortality rate exceeding 20%, comparable to many types of cancer. Past research has shown that patients with cancer overestimate their likelihood of survival relative to their physicians, but this relationship has not been examined in patients with noncancer diagnoses. Perceptions of prognosis and transplant candidacy may influence goals of care.To compare the perceptions of hemodialysis patients and their nephrologists concerning prognosis and the likelihood of transplant; to follow actual survival; and to explore the relationship between patients' expectations and their goals of care.We completed a medical record abstraction to estimate 1-year mortality risk among patients who underwent dialysis at any time from November 1, 2010, through September 1, 2011. We then conducted in-person interviews with eligible patients whose predicted 1-year mortality, based on validated prognostic tools, was at least 20%. We also interviewed their nephrologists. We compared patients' and physicians' expectations about 1- and 5-year survival and transplant candidacy and measured the association between patients' expectations and goals of care. We then followed actual survival using Kaplan-Meier methods.Two dialysis units in Boston. Two hundred seven patients undergoing hemodialysis included in the medical record review, with 62 eligible patients interviewed.Predicted 1-year mortality risk using validated prognostic tools; actual survival; patients' and physicians' expectations about 1-year survival and likelihood of transplant; and patients' goals of care.Of the 207 hemodialysis patients, 72.5% had a predicted 1-year mortality of at least 20%. Of the 80 patients eligible for interview, 62 participated (response rate, 78%). Patients were significantly more optimistic than their nephrologists about 1- and 5-year survival (P < .001 for both) and were more likely to think they were transplant candidates (37 [66%] vs 22 [39%] [P = .008]). Of the 81% of patients reporting a 90% chance or greater of being alive at 1 year, 18 (44%) preferred care focused on extending life, even if it meant more discomfort, compared with 1 (9%) among patients reporting a lower chance of survival (P = .045). Actual survival was 93% at 1 year but decreased to 79% by 17 months and 56% by 23 months.Hemodialysis patients are more optimistic about prognosis and transplant candidacy than their nephrologists. In our sample, patients' expectations about 1-year survival were more accurate than those of their nephrologists, but their longer-term survival expectations dramatically overestimated even their 2-year survival rates. Patients' prognostic expectations are associated with their treatment preferences. Our findings suggest the need for interventions to help providers communicate effectively with patients about prognosis.

SUBMITTER: Wachterman MW

PROVIDER: S-EPMC3982381 | biostudies-literature | 2013 Jul

REPOSITORIES: biostudies-literature

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Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.

Wachterman Melissa W MW Marcantonio Edward R ER Davis Roger B RB Cohen Robert A RA Waikar Sushrut S SS Phillips Russell S RS McCarthy Ellen P EP

JAMA internal medicine 20130701 13

<h4>Importance</h4>Patients undergoing hemodialysis have an annual mortality rate exceeding 20%, comparable to many types of cancer. Past research has shown that patients with cancer overestimate their likelihood of survival relative to their physicians, but this relationship has not been examined in patients with noncancer diagnoses. Perceptions of prognosis and transplant candidacy may influence goals of care.<h4>Objectives</h4>To compare the perceptions of hemodialysis patients and their neph ...[more]

PMID: 23712681

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Project description:BackgroundThere is a high prevalence of psychosocial issues affecting patients with kidney failure.ObjectiveWe sought to examine Canadian nephrologists' attitudes and opinions regarding the importance of renal patient psychosocial care, nephrologists' roles, and experience with psychosocial care in addition to what barriers, if any, prevent these physicians from providing psychosocial care to their patients.DesignA self-administered, survey questionnaire.SettingOnline.SampleCanadian Society of Nephrology members who predominantly work in clinical care with adult, in-center hemodialysis patients.MeasurementsMeasurements of the survey include demographics, training, and nephrologists' opinions regarding their role in administering psychosocial care, potential administrative and patient time constraints, accessibility of other health care workers for this activity, and factors that influence or impede physicians' ability to address their patients' psychosocial needs.MethodsA self-administered survey was sent to almost 500 members of the Canadian Society of Nephrology between November 2018 and December 2018. The survey questionnaire was designed to gather opinions and attitudes on psychosocial care delivery as well as potential influencing factors on nephrologists' ability to provide this care. A univariate statistical analysis was used to analyze survey responses.ResultsA total of 30 nephrologists responded to the survey, generating a 6% response rate. Respondents varied across provinces, with the majority being staff nephrologists (80%). While over 94% of respondents either agreed or strongly agreed that focus on psychosocial care improves patient outcomes, only 43% felt that staff nephrologists were suited to provide this care to patients; 97% of respondents believed social workers to be the most suited to provide this. Lack of additional supporting health care members, the need for additional training, too many administrative duties, and empathy fatigue were some of the predominant barriers respondents felt prevented them from addressing the psychosocial care of their patients.LimitationsA low response rate for the survey was obtained, roughly 6%, limiting our ability to draw definitive conclusions. Survey answers by respondents may be different from those by nonrespondents. Answers may be subject to social desirability and/or selection bias.ConclusionNephrologists believe that the current psychosocial care of patients in hemodialysis units is inadequate. However, further research is necessary to elucidate the barriers nephrologists face in providing psychosocial care and the changes required to most effectively implement optimal psychosocial care for patients with kidney failure in hemodialysis units.

Project description:BackgroundThe expectation to include patients as partners in research has steadily gained momentum. The vulnerability of frail and/or seriously ill patients provides additional complexity and may deter researchers from welcoming individuals from this patient population onto their teams. The aim was to synthesize the evidence on the engagement of frail and/or seriously ill patients as research partners across the research cycle.MethodsA systematic review was conducted using PRISMA guidelines. A search strategy included MEDLINE®, EMBASE®, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO from database inception to April, 2019. Eligible studies were peer-reviewed qualitative, quantitative, and mixed methods research reporting on the engagement of frail and/or seriously ill patients as partners on research teams. The Mixed Methods Appraisal Tool was used to appraise study quality. Narrative analysis was conducted.ResultsOf 8763 citations, 30 were included. Most studies included individuals with cancer on the research team (60%). Barriers included: lack of time and resources (50%), discontinuity in contribution (37%), and concerns for well-being (33%). Facilitators included: trust and mutual respect (60%), structural accessibility (57%), flexibility in timing and methods of engagement (43%), and attention to care and comfort, (33%). Perceived impacts for patients included: renewed personal sense of agency (37%) and emotional/peer support (37%). Impacts for researchers included sensitization to the lived experience of disease (57%) and an increased appreciation of the benefits of patient engagement (23%). Research design, execution, and outcomes, developed with patients, were deemed more suitable, relevant and reflective of patients' priorities.ConclusionsThere is emerging evidence to suggest that research partnerships with frail and/or seriously ill patients can be achieved successfully. Patients mostly report benefit from partnering with research teams. Frailty and/or serious illness do present legitimate concerns for their well-being but appear to be successfully mitigated when researchers ensure that the purpose of engagement is well-defined, the timing and methods of engagement are flexible, and the practical and emotional needs of patient partners are addressed throughout the process.Systematic review registrationThe systematic review protocol was registered with the International Prospective Register of Systematic Reviews PROSPERO (CRD42019127994).

Project description:BACKGROUND:Criteria for the 2007 WHO algorithm for diagnosing tuberculosis among HIV-infected seriously ill patients are the presence of one or more danger signs (respiratory rate > 30/min, heart rate > 120/min, temperature > 39 °C, and being unable to walk unaided) and cough ? 14 days. Determining predictors of poor outcomes among HIV-infected inpatients presenting with WHO danger signs could result in improved treatment and diagnostic algorithms. METHODS:We conducted a prospective cohort study of inpatients presenting with any duration of cough and WHO danger signs to two regional hospitals in Cape Town, South Africa. The primary outcome was all-cause mortality up to 56 days post-discharge, and the secondary outcome a composite of any one of: hospital admission for > 7 days, died in hospital, transfer to a tertiary level or tuberculosis hospital. We first assessed the WHO danger signs as predictors of poor outcomes, then assessed the added value of other variables selected a priori for their ability to predict mortality in common respiratory opportunistic infections (CD4 count, body mass index (BMI), being on antiretroviral therapy (ART), hypotension, and confusion) by comparing the receiver operating characteristic (ROC) area under the curve (AUC) of the two multivariate models. RESULTS:484 participants were enrolled, median age 36, 66% women, 53% had tuberculosis confirmed on culture. The 56-day mortality was 13.2%. Inability to walk unaided, low BMI, low CD4 count, and being on ART were independently associated with poor outcomes. The multivariate model of the WHO danger signs showed a ROC AUC of 0.649 (95% CI 0.582-0.717) for predicting 56-day mortality, which improved to ROC AUC of 0.740 (95% CI 0.681-0.800; p = 0.004 for comparison between the two ROC AUCs) with the multivariate model including the a priori selected variables. Findings were similar in sub-analyses of participants with culture-positive tuberculosis and with cough duration ? 14 days. CONCLUSION:The study design prevented a rigorous evaluation of the prognostic value of the WHO danger signs. Our prognostic model could result in improved algorithms, but needs to be validated.

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Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.

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Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.

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