Assessing Nephrology Fellows' Skills in Communicating About Kidney Replacement Therapy and Kidney Biopsy: A Multicenter Clinical Simulation Study on Breaking Bad News.

RATIONALE & OBJECTIVE: Interpersonal communication skills and professionalism competencies are difficult to assess among nephrology trainees. We developed a formative "Breaking Bad News" simulation and implemented a study in which nephrology fellows were assessed with regard to their skills in providing counseling to simulated patients confronting the need for kidney replacement therapy (KRT) or kidney biopsy. STUDY DESIGN: Observational study of communication competency in the setting of preparing for KRT for kidney failure, for KRT for acute kidney injury (AKI), or for kidney biopsy. SETTING & PARTICIPANTS: 58 first- and second-year nephrology fellows assessed during 71 clinical evaluation sessions at 8 training programs who participated in an objective structured clinical examination of simulated patients in 2017 and 2018. PREDICTORS: Fellowship training year and clinical scenario. OUTCOME: Primary outcome was the composite score for the "overall rating" item on the Essential Elements of Communication-Global Rating Scale 2005 (EEC-GRS), as assessed by simulated patients. Secondary outcomes were the score for EEC-GRS "overall rating" item for each scenario, score < 3 for any EEC-GRS item, Mini-Clinical Examination Exercise (Mini-CEX) score < 3 on at least 1 item (as assessed by faculty), and faculty and fellow satisfaction with simulation exercise (via a survey they completed). ANALYTICAL APPROACH: Nonparametric tests of hypothesis comparing performance by fellowship year (primary goal) and scenario. RESULTS: Composite scores for EEC-GRS overall rating item were not significantly different between fellowship years (P = 0.2). Only 4 of 71 fellow evaluations had an unsatisfactory score for the EEC-GRS overall rating item on any scenario. On Mini-CEX, 17% scored < 3 on at least 1 item in the kidney failure scenario; 37% and 53% scored < 3 on at least 1 item in the AKI and kidney biopsy scenarios, respectively. In the survey, 96% of fellows and 100% of faculty reported the learning objectives were met and rated the experience good or better in 3 survey rating questions. LIMITATIONS: Relatively brief time for interactions; limited familiarity with and training of simulated patients in use of EEC-GRS. CONCLUSIONS: The fellows scored highly on the EEC-GRS regardless of their training year, suggesting interpersonal communication competency is achieved early in training. The fellows did better with the kidney failure scenario than with the AKI and kidney biopsy scenarios. Structured simulated clinical examinations may be useful to inform curricular choices and may be a valuable assessment tool for communication and professionalism.

Life activity, disease acceptance and quality of life in patients treated with renal replacement therapy since childhood.

BACKGROUND: Advances in the treatment of chronic kidney disease (CKD) resulted in expanding therapy goals from simple prolongation of life to a return to normal social functioning and having an active and satisfactory life after reaching adulthood. OBJECTIVES: The aim of the study was to evaluate life activity, disease acceptance (DA) and quality of life (QOL) in patients with end-stage renal disease (ESRD) treated with renal replacement therapy (RRT) since childhood. MATERIAL AND METHODS: We surveyed 117 patients aged .16 years on RRT since childhood. The control group included 25 healthy subjects. We used questionnaires that included a sociodemographic questionnaire (questions regarding education, work, family, and offspring), Acceptance of Illness Scale (AIS), Satisfaction With Life Scale, and Kidney Disease Quality of Life (KDQOL). RESULTS: A completed survey was returned by 45 respondents aged 27.16 }6.78 years, among whom 82.2% had a transplanted kidney and 17.8% were on hemodialysis (HD). Higher education was reported by 18.18% of respondents, secondary and primary by 63.64% and 18.18%, respectively. Employment was reported by 46.67% of the respondents. A family was started by 35% of women and 4% of men. Good DA was found in 28.9% of the respondents. Satisfaction with life was lower in the study group compared to the control group. We found statistically significant correlations between the age when the kidney disease was diagnosed and satisfaction with life (r = 0.33), and between the time since the last change of RRT modality and emotional well-being (r = 0.34). The number of kidney transplantations correlated negatively with emotional component of QOL (r = .0.66) and emotional well-being (r = .0.73). CONCLUSIONS: Patients treated with RRT were quite well adapted to their chronic disease but showed less ability to live independently. Young age at the diagnosis of kidney disease, loss of kidney transplant and living on social security benefit had a negative effect on their emotional well-being.

Exploring the nature of illness perceptions in people with end-stage kidney disease.

BACKGROUND: Diagnosis and treatment for End-Stage Kidney Disease (ESKD) results in vast lifestyle changes. Despite the high prevalence of depression in people with ESKD, the psychosocial impacts of ESKD are still often overlooked. Illness perceptions enable people to make sense of their illness and are closely associated with depression. Due to the high levels of depression within ESKD, this study sought to understand the nature of illness perceptions in people with ESKD. METHODOLOGY: In this qualitative study, eleven participants were identified through hospital and online patient support groups. Semi-structured interviews were audio-taped, transcribed and analysed using grounded theory techniques. RESULTS: Three themes emerged from the data: Renal Conflicts, Forced Adjustment and Coping. The main dimensions of illness perception discussed by participants were Consequences, Control, Timeline and Identity. CONCLUSION: The results of this study have practical implications for informing practitioners about the psychosocial effects of ESKD diagnosis and treatment.

Palliative care needs of patients living with end-stage kidney disease not treated with renal replacement therapy: An exploratory qualitative study from Blantyre, Malawi.

BACKGROUND: The burden of end-stage kidney disease (ESKD) in sub-Saharan Africa is increasing rapidly but the palliative care needs of patients living with ESKD are not well described. Resource limitations at both health system and patient level act as major barriers to patients receiving renal replacement therapy (RRT) in the form of dialysis. We undertook an exploratory qualitative study to describe the palliative care needs of patients with ESKD who were not receiving RRT, at a government teaching hospital in Blantyre, Malawi. METHODS: A qualitative, explorative and descriptive design was used. Study participants were adults aged > 18 years with an estimated glomerular filtration rate < 15 ml/min on two separate occasions, three months apart, who either chose not to have or were not deemed suitable for RRT. Data were collected by means of semi-structured interviews. RESULTS: In October and November 2013, interviews were conducted with 10 adults (7 women with median age of 60.5 years). All were hypertensive and four were on treatment for HIV. Four themes emerged from the data: changes in functional status because of physical symptoms, financial challenges impacting hospital care, loss of role within the family and the importance of spiritual and cultural beliefs. CONCLUSION: This study reports on four thematic areas which warrant further quantitative and qualitative studies both in Malawi and other low-resource settings, where a growing number of patients with ESKD unable to access RRT will require palliative care in the coming years.

African American and non-African American patients' and families' decision making about renal replacement therapies.

We conducted focus group meetings of African American and non-African American patients with end-stage renal disease (six groups) and their family members (six groups), stratified by race/ethnicity and treatment. We elicited differences in participants' experiences with shared decision making about initiating renal replacement therapy (RRT; that is, hemodialysis, peritoneal dialysis, or a kidney transplant). Patients were often very sick when initiating RRT, and had little, if any, time to make a decision about what type of RRT to initiate. They also lacked sufficient information about alternative treatment options prior to initiation. Family members played supportive roles and shared in decision making when possible. Reports were similar for African American and non-African American participants. Our findings suggest that a greater emphasis on the improved engagement of patients and their families in shared decision making about RRT initiation is needed for both ethnic/racial minorities and nonminorities.

From CKD to ESRD: a tale of two transitions.

Transitions in levels of health offer important opportunities to affect patient outcomes. The transition from CKD to ESRD and dialysis dependence is costly in personal, social, and economic terms. This paper reviews these costs and offers resources that can be used by physicians and medical teams to help patients and their families weather the challenges of this process.

The future of the artificial kidney: moving towards wearable and miniaturized devices.

New directions in dialysis research include cheaper treatments, home based therapies and simpler methods of blood purification. These objectives may be probably obtained with innovations in the field of artificial kidney through the utilization of new disciplines such as miniaturization, microfluidics, nanotechnology. This research may lead to a new era of dialysis in which the new challenges are transportability, wearability and why not the possibility to develop implantable devices. Although we are not there yet, a new series of papers have recently been published disclosing interesting and promising results on the application of wearable ultrafiltration systems (WUF) and wearable artificial kidneys (WAK). Some of them use extracorporeal blood cleansing as a method of blood purification while others use peritoneal dialysis as a treatment modality (ViWAK and AWAK.) A special mention deserves the wearable/portable ultrafiltration system for the therapy of overhydration and congestive heart failure (WAKMAN). This system will allow dehospitalization and treatment of patients with less comorbidity and improved tolerance. On the way to the wearable artificial kidney, new discoveries have been made such as a complete system for hemofiltration in newborns (CARPEDIEM). The neonate in fact is the typical patient who may benefit from miniaturization of the dialysis circuit. This review analyzes the rationale for such endeavour and the challenges to overcome in order to make possible a true ambulatory dialysis treatment. Some initial results with these new devices are presented. We would like to stimulate a collaborative effort to make a quantum leap in technology making the wearable artificial kidney a reality rather than a dream. 

Socio-economic status, ethnicity and geographical variations in acceptance rates for renal replacement therapy in England and Wales: an ecological study.

BACKGROUND: It is not known to what extent the reported regional variations in renal replacement therapy (RRT) acceptance rates in England and Wales are due to differences in the socio-demographic characteristics of the population. METHODS: The authors calculated age-gender indirectly standardised RRT rates in 2007 for Primary Care Trusts (PCT)/Local Health Boards (LHB) in England and Wales and Government Office Regions (GOR) in England. Multivariable Poisson regression was used to examine the regional variations in the age-gender standardised RRT rates before and after adjustment for area deprivation (Townsend index) and the proportion of non-white people living in an area. RESULTS: Increasing deprivation of PCT/LHB was associated with higher RRT acceptance rates. RRT rates were higher in PCTs with a greater proportion of non-white people in England (correlation coefficient 0.60, p<0.001) but not in Wales. There were variations in the age-gender standardised RRT rates between PCT/LHBs in England and Wales. Adjusting for deprivation and the proportion of non-white people attenuated the high RRT rate ratio observed in London and West Midlands, but the RRT acceptance rate ratio (95% CI) remained higher in Wales 1.38 (1.22 to 1.57) and lower in North West England 0.82 (0.74 to 0.93) and Yorkshire and Humberside 0.86 (0.77 to 0.98). CONCLUSIONS: This study highlights that RRT acceptance rates are positively associated with social deprivation and the proportion of non-white people in a PCT/LHB, but regional variations in RRT acceptance rates still persist despite taking these into account. Further study is required to understand the extent to which these differences reflect variation in underlying need or provision of care.

The validity of A new practical quality of life measure in patients on renal replacement therapy.

OBJECTIVE: A new quality of life measure, apart of the National Health and Welfare 2003 survey, is a promising tool for outcome evaluation of clinical practice due to its brevity, validity, reliability, and providing easy interpretation against general population norm-based scores. The measure consisting of 9-items, and so called 9-item Thai Health status Assessment Instrument (9-THAI) was used to assess its validity and reliability in patients on renal replacement therapy (RRT). MATERIAL AND METHOD: Three hundred and two patients on RRT who visited Srinagarind Hospital from March to May 2005 were studied Convergent and divergent validity were assessed using SF-36 as the concurrent measure. Concurrent validity was also assessed using hematocrit level and hospitalization history in the last year as concurrent clinical measures. Test-retest reliability was studied by repeated measure within one 1 month. Responsiveness of 9-THAI was studied in patients who reported health improvement. RESULTS: Results of correlations between 9-THAI and SF-36 domains were as hypothesized 9-THAI scores were significantly correlated with hematocrit level and hospitalization history. The results confirmed the validity of 9-THAI for use as a quality of life measure. Intraclass correlation coefficients of 9-THAI scores in stable patients were satisfactory. Among patients on RRT who reported overall health improvement, 9-THAI scores significantly increased, thus adding further evidence of the responsiveness of 9-THAI. CONCLUSION: The 9-THAI is a valid and reliable generic health status measure that can be used as an ideal core in a battery of quality of life measures in clinical practice for patients on RRT.

Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis.

BACKGROUND: Nephrologists report that patients' choice should play an important role in the selection of renal replacement therapy (RRT) for end-stage renal disease (ESRD). In the United States, kidney transplant rates remain low and <10% of patients utilize home dialysis therapies. This study examined the effect of pre-ESRD processes on the selection of RRT among incident ESRD patients. METHODS: Using surveys, data were collected for all patients admitted to 229 dialysis units in ESRD Network 18 between April 1, 2002 and May 31, 2002. A total of 1365 patients began chronic dialysis and 1193 facility (87%) and 428 patient (31%) surveys were returned. RESULTS: Substantial proportions of patients were unaware of their kidney disease (36%) or were not seeing a nephrologist (36%) until <4 months before first dialysis. The presentation of treatment options was delayed (48% either after or < 1 month before the first dialysis). The majority of ESRD patients were not presented with chronic peritoneal dialysis, home hemodialysis, or renal transplantation as options (66%, 88%, and 74%, respectively). Using multivariate analyses, variables significantly associated with selection of chronic peritoneal dialysis as dialysis modality were the probability of chronic peritoneal dialysis being presented as a treatment option and the time spent on patient education. CONCLUSION: An incomplete presentation of treatment options is an important reason for under-utilization of home dialysis therapies and probably delays access to transplantation. Improvements in and reimbursement for pre-ESRD education could provide an equal and timely access for all medically suitable patients to various RRTs.

[Impact of lack of resources in dialysis practice in Quebec]. / L'impact de la rareté des ressources sur la pratique de la dialyse au Québec.

The purpose of this descriptive study was to assess the impact of limited resources on the practice of dialysis in Quebec and to highlight certain ethical issues. Twelve semi-structured interviews were done with nurses in charge of 14 dialysis centres in Quebec. A survey using self-administered questionnaires was also carried out between January 2000 and July 2001, with a convenience sample of 412 patients and 156 other persons involved, including 116 dialysis nurses. Two discussion groups brought together sixteen stakeholders from four dialysis centres. The results presented here were obtained by triangulating methods and data. They show that access to dialysis is not limited by Quebec nephrologists, that patients are increasingly old and sick, that teams are working to the utmost of their ability and that it is difficult for nursing staff to provide optimal care under these conditions.

Depression, anxiety and adjustment in renal replacement therapy: a quality of life assessment.

OBJECTIVES: To measure the quality of life (QOL) of patients on RRT with regard to depression, anxiety, and adjustment to illness. MATERIAL: The study was conducted between 1996 and 1998 at a teaching hospital in Porto Alegre, Brazil. The study population included 125 patients (transplant n = 64, hemodialysis n = 42 and continuous ambulatory peritoneal dialysis [CAPD] n = 19). METHODS: The Beck Depression Inventory (BDI), the State-Trait Anxiety Inventory (STAI), and the Psychosocial Adjustment to Illness Scale (PAIS) were used for patient assessment. Results were analyzed using the Kruskall-Wallis, Mann-Whitney and ANOVA tests. RESULTS: Depression scores were higher for hemodialysis patients compared with transplant patients (H = 15.22; p < 0.005). CAPD patients had intermediate scores (no statistical difference). As far as anxiety was concerned, no statistical difference was observed when the groups were compared. In terms of adjustment to illness, hemodialysis patients were significantly less well adjusted than transplant patients (H = 23.34; p < 0.001). Patients on CAPD had intermediate scores, with no significant difference compared with the other two groups. CONCLUSION: The overall quality of life of transplant patients is higher than that of hemodialysis patients.

Costs of care, long-term prognosis and quality of life in patients requiring renal replacement therapy during intensive care.

OBJECTIVE: To assess (1) the long-term outcome of patients requiring renal replacement therapy (RRT) in terms of 6-month and 5-year mortality, (2) quality of life and (3) costs of the intensive care. DESIGN: A retrospective observational cohort study. SETTING: Twenty-three-bed multidisciplinary intensive care unit (ICU) in a tertiary care center. PATIENTS AND PARTICIPANTS: Out of 3,447 intensive care patients admitted, 62 patients with no end-stage renal failure required RRT. INTERVENTIONS: None. MEASUREMENTS AND RESULTS: The incidence rate of acute renal failure (ARF) was 8/100,000 inhabitants/ year. The majority of patients (71%) had ARF in conjunction with multiple organ failure. The mortality in the ICU and in the hospital was 34 % and 45%, respectively. Mortality was 55% at 6 months and 65 % at 5 years. Renal function recovered in 82 % of the survivors during hospitalization. Loss of energy and limitations of physical mobility assessed by Nottingham Health Profile were the most frequently reported complaints at 6 months. Functional ability, as assessed by the Activities of Daily Living score was fairly good at 6 months. The cost per ARF 6-month survivor was $80,000. CONCLUSIONS: There was only a minor increase in mortality after discharge from hospital among patients treated for ARF in intensive care. The costs related to ARF in intensive care are high, but the almost complete physical and functional recovery seen in ARF survivors should be noted in cost-effective analyses.

Future developments in renal care, the patient's perspective.

This paper explores from a patients perspective, how collaboration between staff and patients enhances the quality of care for patients with ends stage renal disease. The role of patient associations and professional associations are discussed.

The marital context of end-stage renal disease: illness intrusiveness and perceived changes in family environment.

End-stage renal disease (ESRD) is associated with illness-induced disruptions (i.e. illness intrusiveness) that challenge patients and their families to accommodate and adapt. We advance previous research in ESRD by examining the extent to which illness intrusiveness extends to marital, non-marital, and family life among patients and their spouses. We also investigate whether gender and mode of renal replacement therapy moderate these effects. A sample of 19 ESRD patients and their spouses completed the Illness Intrusiveness Ratings Scale and the Family Environment Scale (FES) (completed with reference to two time frames, currently and before ESRD) in structured individual interviews. As hypothesized, ESRD patients reported significantly higher illness intrusiveness than their spouses, but this discrepancy was greater in relation to aspects of non-marital as compared to marital life. Significant moderating effects were observed for gender on the FES Relationship subscale and mode of renal replacement on the FES Personal Growth subscale. Spouses reported significantly more family emphasis on norms and the regulation of family members' behavior (FES System Maintenance) than patients. A pattern of significant correlations linked patient ratings of illness intrusiveness with both premorbid and current family environment. The pattern of findings is consistent with previous clinical reports that women and spouses are more likely than their male and patient counterparts to shoulder much of the burden of adapting family environment to accommodate life with ESRD and renal replacement therapy.