• Dialysis
• Kidney failure
• Nephrology
• Palliative care
• Patient-physician communication

• Humans
• Heart Failure/psychology
• Heart Failure/physiopathology
• Female
• Male
• Aged
• Hospitalization
• Qualitative Research
• Middle Aged
• Acute Kidney Injury/psychology
• Acute Kidney Injury/physiopathology
• Acute Kidney Injury/therapy
• Renal Insufficiency, Chronic/psychology
• Renal Insufficiency, Chronic/physiopathology
• Renal Insufficiency, Chronic/therapy
• Aged, 80 and over
• Acute Disease

• K26 DK138333 NIDDK NIH HHS
• R01 DK121800 NIDDK NIH HHS

• feedback form
• medical education
• medical student
• patient-centered care
• patient-feedback
• pediatrics

• Advance Care Planning
• Renal failure

• Humans
• Advance Care Planning
• Male
• Female
• Patient-Centered Care/organization & administration
• Cross-Sectional Studies
• Renal Dialysis
• Middle Aged
• Aged
• Quality of Health Care
• Japan
• Adult

• biocompatibility
• dialysis-related disease
• end stage kidney disease
• healthcare economic perspective
• hemodialysis
• kidney replacement therapy
• morbidity
• mortality

This study showed variation in satisfaction and quality of life between three dialysis centers, suggesting local factors influence outcomes. One center linked better dialysis to less satisfaction, but fully grasping satisfaction differences between sites warrants additional study.

The concept of patient-centered care puts the individual's health needs and desired health outcomes as the driving forces behind medical decision making and quality assessment in the health care system. Patients with ESKD treated by hemodialysis require frequent encounters with the dialysis facility to survive. Therefore, their satisfaction with care and perceived patient experience are important aspects that might affect their adherence to the care regimen. The aim of this study was to evaluate patient satisfaction and its association with perceived patient experience and objective clinical quality parameters, across three hemodialysis clinics.

A prospective cohort study analyzed the data of 126 patients with ESKD receiving chronic hemodialysis over 9 months in three different care facilities. Sociodemographic characteristics, medical history, treatment details, and dialysis adequacy (measures as STDKt/V) were collected. Perceived quality of care, patient satisfaction, and clinical outcomes were assessed.

Patients differed significantly between sites by age, diabetes status, and biochemical parameters. Satisfaction scores varied significantly for 12/14 survey questions and at the site-level, with site 2 scoring the highest. Overall satisfaction did not correlate with Kt/V. At site 1, a moderate negative correlation was found between satisfaction and Kt/V. Kt/V correlated positively with age but inversely with satisfaction. Hospitalization rates were similar regardless of satisfaction. Mortality trended lower in the highest Kt/V quartile.

Achieving clinical quality while optimizing patient satisfaction requires multifactorial approaches tailored to the unique population of the hemodialysis facility. Further research is needed to fully understand factors influencing satisfaction and perceived quality.

• dialysis
• hemodialysis
• hemodialysis adequacy
• patient satisfaction
• quality of life

• Humans
• Renal Dialysis/methods
• Kidney Failure, Chronic/therapy
• Kidney Failure, Chronic/psychology

• Autonomy support
• Diabetes mellitus
• Patient activation
• Patient adherence
• Patient-centered care

• Humans
• Kidney Diseases/therapy
• Kidney Diseases/diagnosis
• Regenerative Medicine
• Tissue Engineering
• Nephrology
• Genetic Therapy

• Humans
• United States/epidemiology
• Kidney Diseases/epidemiology
• Kidney
• Data Systems
• Research Report
• Kidney Failure, Chronic/epidemiology

• UL1 TR002494 NCATS NIH HHS

• eskd
• health status
• hemodialysis
• patient satisfaction
• patient-centered care
• peritoneal dialysis
• quality of life
• krt
• transplantation

• Humans
• Self-Management
• Quality of Life
• Renal Insufficiency/therapy
• Renal Insufficiency/psychology
• Activities of Daily Living
• Social Participation
• Self Care

• Innovation
• Kidney
• Nephrology
• Patient-centered
• Research

• Humans
• Nephrology
• Reproducibility of Results
• Patients
• Patient-Centered Care

• primary health care
• quality of life
• self care

• Humans
• Consensus
• Checklist
• Self-Management
• Delphi Technique
• Chronic Disease

• activities of daily living
• haemodialysis
• older adults
• quality of life
• rehabilitation

• Decision-making
• dialysis
• kidney transplant
• qualitative research
• shared decision-making

Receiving the diagnosis of kidney failure has a major impact on patients. Yet, the way in which this diagnosis should be delivered is not formally taught within our medical curriculum. To fill this gap we set up a training course of kidney failure diagnosis delivery for nephrology trainees since 2016. This study assessed the effectiveness of this educational intervention.

The primary outcome was change in the empathy score immediately after the training session and several months afterward, based on the Jefferson Scale of Physician Empathy (JSPE). Self-reported change in clinical practice was also evaluated. As control groups, we assessed empathy levels in untrained nephrology trainees (n = 26) and senior nephrologists (n = 71). Later on (>6 months) we evaluated participants’ perception of changes in their clinical practice due to the training.

Six training sessions permitted to train 46 trainees. Most respondents (76%) considered the training to have a durable effect on their clinical practice. Average empathy scores were not significantly different in pre-trained trainees (average JSPE: 103.7 ± 11.4), untrained trainees (102.8 ± 16.4; P = 0.81) and senior nephrologists (107.2 ± 13.6; P = 0.15). Participants’ empathy score significantly improved after the training session (112.8 ± 13.9; P = 0.003). This improvement was sustained several months afterwards (average JSPE 110.5 ± 10.8; P = 0.04).

A single 4-hour training session can have long lasting impact on empathy and clinical practice of participants. Willingness to listen, empathy and kindness are thought to be innate and instinctive skills, but they can be acquired and should be taught.

• Cross-Sectional Studies
• Education, Medical
• Empathy
• Female
• Humans
• Kidney Failure, Chronic/diagnosis
• Male
• Patient Satisfaction
• Physician-Patient Relations
• Physicians

• Agence regionale de la Sante, Ile de France

• communication
• digital health
• hemodialysis
• patient-centered care
• usability

• R01 HS021472 AHRQ HHS
• Canadian Institutes of Health Research under Canada’s Strategy for Patient-Oriented Research (SPOR)

• Adult
• Australia/epidemiology
• England/epidemiology
• Fear/psychology
• Health Personnel
• Health Services Accessibility
• Hospitals
• Humans
• Kidney/pathology
• Kidney Failure, Chronic/epidemiology
• Kidney Failure, Chronic/prevention & control
• Kidney Failure, Chronic/psychology
• Male
• Middle Aged
• Nurses
• Peritoneal Dialysis/psychology
• Psychology
• Qualitative Research
• Renal Dialysis/psychology
• Renal Dialysis/standards

• Baxter Global Grant Program

• access to care
• dialysis
• end-stage kidney disease
• health services research
• narrative inquiry
• nurse-patient communication
• nursing
• patient perspectives
• renal nursing; symptom management

• Care transitions
• Family member research partners
• Kidney disease
• Outcomes
• PCORI
• Patient and public involvement
• Patient centered
• Patient research partners
• Shared decision-making

• IHS-1409-20967 Patient-Centered Outcomes Research Institute

Chronic kidney disease (CKD) has become a public health burden worldwide for its increasing incidence and prevalence, high impact on the health related quality of life (HRQoL) and life expectancy, and high personal and social cost. Patients with advanced CKD, in dialysis or not, suffer a burden from symptoms very similar to other chronic diseases and have a life span not superior to many malignancies. Accordingly, in recent years, renal palliative care has been recommended to be integrated in the traditional care delivered to this population. This research provides an updated overview on renal palliative care from the relevant literature.

• Ambiguity
• Chronic Kidney Disease
• Illness
• Nephrotic syndrome
• Self-Management/Self-Care
• Uncertainty

• Adaptation, Psychological
• Adult
• Aged
• Aged, 80 and over
• Female
• Humans
• Male
• Nephrotic Syndrome/complications
• Nephrotic Syndrome/psychology
• Patient Comfort/methods
• Patient Comfort/standards
• Patient Comfort/statistics & numerical data
• Qualitative Research
• Sweden

Provider recognition of level of functioning may be suboptimal in the dialysis setting, and this lack of recognition may lead to less patient-centered care. We aimed to assess whether delivery of an app-based, individualized functioning report would improve patients’ perceptions of patient-centeredness of care.

In this pre-post pilot study at three outpatient dialysis facilities in metropolitan Atlanta, an individualized functioning report—including information on physical performance, perceived physical functioning, and community mobility—was delivered to patients receiving hemodialysis (n = 43) and their providers. Qualitative and quantitative approaches were used to gather patient and provider feedback to develop and assess the report and app. Paired t test was used to test for differences in patient perception of patient-centeredness of care (PPPC) scores (range, 1 = most patient-centered to 4 = least patient-centered) 1 month after report delivery.

Delivery of the reports to both patients and providers was not associated with a subsequent change in patients’ perceptions of patient-centeredness of their care (follow-up vs. baseline PPPC scores of 2.35 vs. 2.36; P > 0.9). However, patients and providers generally saw the potential of the report to improve the patient-centeredness of care and reacted positively to the individualized reports delivered in the pilot. Patients also reported willingness to undergo future assessments. However, while two-thirds of surveyed providers reported always or sometimes discussing the reports they received, most (98%) participating patients reported that no one on the dialysis care team had discussed the report with them within 1 month.

Potential lack of fidelity to the intervention precludes definitive conclusions about effects of the report on patient-centeredness of care. The disconnect between patients’ and providers’ perceptions of discussions of the report warrants future study. However, this study introduces a novel, individualized, multi-domain functional report that is easily implemented in the setting of hemodialysis. Our pilot study provides guidance for improving its use both clinically and in future pragmatic research studies, both within and beyond the dialysis population.

• Hemodialysis
• Patient-centered care
• Patient-provider communication
• Physical functioning

Person-centered care (PCC) can benefit patients, clinical staff, and health care organizations, but has not yet been widely adopted into practice. Hemodialysis is a unique care environment in which clinical staff can be involved with patients for protracted periods of time each week and often over a number of years. While kidney care is arguably more holistic than other chronic condition management programs, most patients requiring hemodialysis do not receive care that is optimally person-centered.

The purpose of this research was to explore how care is experienced and provided in a large urban hemodialysis program in western Canada in relation to key principles of PCC. In addition, we wanted to understand what factors at an individual, unit, and organizational level facilitate or inhibit PCC in this environment.

We used a qualitative case-study approach to explore multiple perspectives of care provision using a number of data sources including semi-structured interviews with patients, family members, clinical staff, and administrative staff, as well as observing patterns of clinical practice in local hemodialysis units.

In our study of a single hemodialysis program, we found limited evidence of PCC. Overall, patients reported that their care was good and they had positive relationships with their care team. However, they did not feel involved in decisions regarding their care or consider it to be individualized. In general, providers acknowledged the potential benefits of PCC but were constrained in their practice by a number of factors, including individual perceptions of their role, a prescriptive care environment, and an organizational focus on managing demand.

Evidence of PCC within hemodialysis services was limited, with a number of individual, unit level, and organizational barriers mitigating against its adoption and spread.

• hemodialysis
• nephrology
• organizational support
• person-centered care
• research
• service delivery

Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD.

A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires.

The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal.

The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.

The online version of this article (10.1186/s12882-019-1521-9) contains supplementary material, which is available to authorized users.

• Chronic kidney disease (CKD)
• Dialysis
• End-stage kidney disease (ESKD)
• Patient-reported outcome measures (PROMs)
• Pre-dialysis
• Questionnaire
• Symptom burden
• Value-based healthcare

• ambulatory care
• kidney palliative care
• nephrology
• outpatient care
• palliative care
• person-centered care
• quality of life
• renal supportive care
• symptom management

• Ambulatory Care
• Cause of Death
• Female
• Follow-Up Studies
• Health Promotion
• Hispanic Americans
• Humans
• Kidney Failure, Chronic
• Language
• Middle Aged
• Physicians, Primary Care
• Proportional Hazards Models
• Prospective Studies
• Renal Insufficiency, Chronic
• Risk
• Surveys and Questionnaires
• glomerular filtration rate
• hospitalization

• Adult
• Aged
• Communication Barriers
• Cultural Competency
• Disease Progression
• Female
• Glomerular Filtration Rate
• Health Promotion
• Hispanic or Latino/statistics & numerical data
• Hospitalization/statistics & numerical data
• Humans
• Kidney Failure, Chronic/epidemiology
• Language
• Longitudinal Studies
• Male
• Middle Aged
• Physician-Patient Relations
• Primary Health Care/standards
• Prospective Studies
• Quality of Health Care
• Renal Insufficiency, Chronic/physiopathology
• Risk Factors
• Surveys and Questionnaires
• Trust

• UL1 TR002548 NCATS NIH HHS
• U01 DK060980 NIDDK NIH HHS
• U01 DK060963 NIDDK NIH HHS
• UL1 RR024131 NCRR NIH HHS
• U01 DK061022 NIDDK NIH HHS
• UL1 TR000003 NCATS NIH HHS
• UL1 TR000439 NCATS NIH HHS
• U01 DK060990 NIDDK NIH HHS
• UL1 RR029879 NCRR NIH HHS
• U01 DK061028 NIDDK NIH HHS
• UL1 TR000433 NCATS NIH HHS
• K24 DK092290 NIDDK NIH HHS
• R01 DK072231 NIDDK NIH HHS
• U01 DK060984 NIDDK NIH HHS
• U01 DK061021 NIDDK NIH HHS
• UL1 TR000424 NCATS NIH HHS
• M01 RR016500 NCRR NIH HHS
• P20 GM109036 NIGMS NIH HHS
• U01 DK060902 NIDDK NIH HHS
• UL1 TR002003 NCATS NIH HHS
• P30 DK092949 NIDDK NIH HHS
• K23 DK094829 NIDDK NIH HHS

• Abandonment
• Advance Care Planning
• Advanced Kidney Disease
• Emotions
• Fragmentation
• Grounded Theory
• Humans
• Isolation
• Loneliness
• Mistrust
• Patient Experience
• Patient-centered
• Self-blame
• Specialization
• dialysis
• glomerular filtration rate
• kidney
• peritoneal dialysis
• renal dialysis

• Adult
• Aged
• Aged, 80 and over
• Attitude to Health
• Cost of Illness
• Emotions
• Female
• Humans
• Kidney Failure, Chronic/psychology
• Kidney Failure, Chronic/therapy
• Male
• Middle Aged
• Severity of Illness Index