Evaluation of psychosocial status of CKD patients on renal replacement therapy and post renal transplant patients: An observational study.

INTRODUCTION: Recent studies have shown a high prevalence of depression and anxiety in patients with end-stage renal disease (ERSD) and renal transplant recipients. AIM: The aim of this observational study is to asses prevalence of depression and anxiety symptoms in CKD patients and post renal transplant patients. METHODS: In this study 100 patients divided in 50-50 each group. Group 1 with CKD patients on dialysis and group 2 with post renal transplant patients. Each group evaluated for depression and anxiety symptoms using BDI (Beck's Depression Inventory) and STAI (State-Trait Anxiety Inventory) score which is divided into STAI-X1 and STAI-X2, respectively. RESULTS: Our study revealed in group 1 48% patient versus group 2 34% patients present with depressive symptoms whereas in case of anxiety symptoms STAI-X1 and STAI-X2. Group 1 24% and 18% whereas group 2 34% and 28% patients, respectively. CONCLUSION: It is observed that depressive symptoms are more common in CKD patients on dialysis whereas anxiety symptoms observed more in patients after renal transplant. The obtained results indicate that screening tests and monitoring of the emotional state of patients with CKD are necessary, regardless of the disease stage and treatment; this includes patients after kidney transplantation.

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.

The Effects of Shared Decision Making on Different Renal Replacement Therapy Decisions in Patients With Chronic Kidney Disease.

BACKGROUND: The prevalence and incidence of end-stage renal disease (ESRD) in Taiwan are the highest of any country in the world. The different renal replacement therapies that are adopted by patients with ESRD significantly affect their social roles and daily life. However, because of the complexities of different renal replacement therapies, patients may be unsure of which to choose. PURPOSE: The aim of this study was to explore the effectiveness of a shared decision-making (SDM) program regarding different renal replacement therapies for patients with chronic kidney disease. METHODS: A quasi-experimental design was conducted at two similar regional hospitals in Miaoli County, Taiwan. One hospital hosted the intervention group, and the other hospital hosted the control group. The 31 participants in the intervention group took part in a SDM program. The 36 control group participants took part in the pre-ESRD care program. Data collection included demographic and disease characteristics, decisional conflict scale, and decision self-efficacy scale. Results were analyzed using independent t test, Fisher's exact test, generalized estimating equation, and paired t tests. RESULTS: The study results revealed that the intervention group experienced a significant increase in decision self-efficacy and a significant decrease in decisional conflict at 1 month after receiving the SDM intervention in comparison to before and immediately after receiving the intervention. Moreover, the intervention group had higher decision self-efficacy and lower decisional conflict than the control group. CONCLUSIONS/IMPLICATIONS FOR PRACTICE: The SDM program may be an effective intervention for complex decision-making processes, such as the process involved in making renal replacement treatment decisions. The SDM program group intervention improved decisional conflict and decision self-efficacy. Thus, to improve patients' decision-making processes, the application of an SDM program focused on the personal values and opinions of patients with ESRD will be necessary. Physicians and case managers of patients with ESRD should act in complementary and cooperative roles in SDM programs.

Timing of patient-reported renal replacement therapy planning discussions by disease severity among children and young adults with chronic kidney disease.

BACKGROUND: Preparing children with chronic kidney disease (CKD) for renal replacement therapy (RRT) begins with a discussion about transplant and dialysis, but its typical timing in the course of CKD management is unclear. We aimed to describe participant-reported RRT planning discussions by CKD stage, clinical and sociodemographic characteristics, in the Chronic Kidney Disease in Children (CKiD) cohort. METHODS: Participants responded to the question "In the past year, have you discussed renal replacement therapy with your doctor or healthcare provider?" at annual study visits. Responses were linked to the previous year CKD risk stage based on GFR and proteinuria. Repeated measure logistic models estimated the proportion discussing RRT by stage, with modification by sex, age, race, socioeconomic status, and CKD diagnosis (glomerular vs. non-glomerular). RESULTS: A total of 721 CKiD participants (median age = 12, 62% boys) contributed 2856 person-visits. Proportions of person-visits reporting RRT discussions increased as CKD severity increased (10% at the lowest disease stage and 87% at the highest disease stage). After controlling for CKD risk stage, rates of RRT discussions did not differ by sex, age, race, and socioeconomic status. CONCLUSIONS: Despite participant-reported RRT discussions being strongly associated with CKD severity, a substantial proportion with advanced CKD reported no discussion. While recall bias may lead to underreporting, it is still meaningful that some participants with severe CKD did not report or remember discussing RRT. Initiating RRT discussions early in the CKD course should be encouraged to foster comprehensive preparation and to align RRT selection for optimal health and patient preferences.

Renal Replacement Knowledge and Preferences for African Americans With Chronic Kidney Disease.

BACKGROUND: Renal replacement therapies (RRT) other than in-centre haemodialyses are underutilised by African Americans with end-stage renal disease (ESRD) even though they are associated with reduced costs, morbidity and mortality as well as improved quality of life for patients. OBJECTIVES: To understand African American patients' knowledge of RRT options and how patient, provider and system-factors contribute to knowledge and preferences. Participants' interviews were conducted at the University of Chicago Medical Center with African American patients with chronic kidney disease (CKD). The final analysis included 28 interviews; 22 patients had CKD not yet on dialysis or having received a transplant, while 6 had reached ESRD and were receiving treatment for kidney failure. Approach Transcripts were uploaded into NVivo8 for coding. Thematic analysis was used for data interpretation. RESULTS: Four themes were identified: (1) limited knowledge of home modalities and deceased donor options, (2) CKD patients gave little thought to choosing RRT options, (3) CKD patients relied on doctors for treatment decisions, and (4) while patients reported knowledge of living kidney donation transplants (LKDT), it did not translate to receiving an LKDT. CONCLUSION: African Americans face significant knowledge and access barriers when deciding on their RRT treatment. Even patients with advanced CKD were still in the early stages of RRT selection. Understanding the knowledge gaps and barriers patients face will inform our subsequent intervention to educate and motivate patients to increase CKD self-care and improve communication between patients, their families and their providers about different RRT treatments.

Perceived Health and Quality of Life in Patients With CKD, Including Those With Kidney Failure: Findings From National Surveys in France.

RATIONALE & OBJECTIVE: Health-related quality of life (HRQoL) is a major outcome measure increasingly used in patients with chronic kidney disease (CKD). We evaluated the association between different stages of CKD and the physical and mental health domains of HRQoL. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: 2,693 outpatients with moderate (stage 3, estimated glomerular filtration rate [eGFR], 30-60mL/min/1.73m2) or advanced (stages 4-5, estimated glomerular filtration rate<30mL/min/1.73m2, not on kidney replacement therapy [KRT]) CKD under the care of a nephrologist at 1 of 40 nationally representative facilities, 1,658 patients with a functioning kidney transplant, 1,251 patients on maintenance dialysis randomly selected from the national Renal Epidemiology and Information Network registry, and 20,574 participants in the French Decennial Health Survey, representative of the general population. PREDICTOR: Severity of kidney disease (moderate CKD, advanced CKD, maintenance dialysis as KRT, and functioning kidney transplant as KRT), compared with a sample of the general population. OUTCOMES: HRQoL scores assessed using the Medical Outcomes Study 36-Item Short Form Health Survey or the Kidney Disease Quality of Life 36 scale. ANALYTICAL APPROACH: Age- and sex-standardized (to the general population) prevalence of poor or fair health status was estimated for each study kidney disease group. Analysis of variance was used to estimate adjusted differences in mean physical and mental health scores between the kidney disease subgroups and the general population. RESULTS: Mean age was 67.2±12.6 (SD) years for patients with non-KRT-requiring CKD, 69.3±17.7 years for dialysis patients, and 55.3±14.2 years for those with functioning kidney transplants; 60% were men. Age- and sex-standardized health status was perceived as fair or poor in 27% of those with moderate CKD,>40% of those with advanced CKD or receiving dialysis, 12% with a functioning transplant, and 3% of the general population sample. HRQoL physical scores (adjusted for age, sex, education, obesity, and diabetes) were significantly lower in patients in all CKD subgroups than in the general population. For patients receiving dialysis, the magnitude of the difference in physical score versus the general population exceeded 4.5 points, the minimal clinically important difference for this score in this study; for both kidney transplant recipients and patients with advanced CKD, the magnitude of the difference was close to this threshold. For mental score, only dialysis patients had a score that differed from that of the general population by more than the minimal clinically important difference. LIMITATIONS: Cross-sectional study design for each subpopulation. CONCLUSIONS: This study highlights the degree to which perceived physical health is lower in the setting of CKD than in the general population, even in the absence of kidney failure, and calls for greater attention to CKD-related quality of life.

Factors influencing the timing of initiation of renal replacement therapy and choice of modality in children with end-stage kidney disease.

BACKGROUND: Decision-making in pediatric end-stage renal disease (ESRD) is a complex process for patients, families, and physicians. We evaluated the factors influencing the timing of initiation of renal replacement therapy (RRT) and choice of modality in children with ESRD. METHODS: We retrospectively reviewed the RRT decision-making process for all children up to 19 years of age with ESRD, who underwent RRT over an 11-year period (2004 to 2014), at a Canadian pediatric tertiary care center. RRT modalities included peritoneal dialysis (PD), hemodialysis (HD), pre-emptive kidney transplant (PKT), and continuous renal replacement therapy (CRRT). RESULTS: Ninety-two patients progressed to ESRD. RRT was started electively for 58 patients, and urgently for 34 patients. For elective patients, modalities included PD (34%), HD (19%), and PKT (47%). The glomerular filtration rate at initiation of RRT was higher in patients who underwent PKT as opposed to dialysis (11.7 vs. 9.1 ml/min/1.73m2). Medical and quality of life factors, including fatigue and poor concentration, influenced the timing of initiation of elective RRT. Medical factors were primarily important in urgent RRT, including oligoanuria and metabolic disturbances. Medical factors, patient/family preference, and contextual factors such as location of residence influenced choice of modality. CONCLUSIONS: Our study found that the decision-making process in ESRD is multifactorial and involves not only medical factors, but also assessment of social factors, quality of life, and patient/family preference. Bettering our understanding of this decision-making process will positively impact patients and families through more informed decision-making.

Reasons for dialysis patients choosing or refusing kidney transplantation as renal replacement therapy: A qualitative study.

This paper aims to identify the reasons for choosing or refusing kidney transplantation as renal replacement therapy among patients with Chronic Kidney Disease (CKD). Data were collected through interviews with CKD patients treated by dialysis. Health professionals were also interviewed. A thematic analysis was used to analyze the data. Results show that various reasons account for CKD patients' refusal to have a kidney transplant: the perception of kidney transplantation as a renal replacement therapy without positive outcome, refusal to have an allograft. There are also situations such as the lack of organ, the age factor, the contraindications to kidney transplantation that not allow some CKD patients to have a kidney transplant. Among the patients who choose kidney transplantation, some insist on the high level of health literacy, others see kidney transplantation as a cure or a normal process. Ultimately, this paper shows that the choice of kidney transplantation depends on patients' perceptions of its outcomes. Some circumstances, such as the lack of an available organ or specific medical criteria, reduce CKD patients' participation in the decision-making process.

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.

Modality transition on renal replacement therapy and quality of life of patients: a 10-year follow-up cohort study.

PURPOSE: Despite advance in renal replacement therapy (RRT), patients with chronic end-stage renal disease (ESRD) face various limitations, and renal transplantation (Tx) is the treatment that impacts most on quality of life (QoL). This study aimed to assess changes in QoL in a cohort of ESRD dialysis patients. METHODS: Sociodemographic, clinical, nutritional, lifestyle, and QoL data were collected from 712 patients at baseline (time 1) and after 10 years of follow-up (time 2) for patients surviving. The QoL was assessed through the 36-Item Short Form Health Survey (SF-36) and the multiple linear regression model was used to analyze the factors associated with change in QoL. RESULTS: A total of 205 survivors were assessed and distributed into three groups according to current RRT (Dialysis-Dialysis, Dialysis-Tx, and Dialysis-Tx-Dialysis). At time 1, only age was significantly different among groups; at time 2, transplant patients sustained greater social participation, job retention, and improvement in SF-36 scores. The factors associated with change in QoL were more time on dialysis interfering negatively on physical functioning (p = 0.002), role-physical limitations (p  = 0.002), general health (p  = 0.007), social functioning (p = 0.02), role-emotional (p = 0.003), and physical components ( p = 0.002); non-participation in social groups at times 1 and 2 reducing vitality (p = 0.02) scores; and having work at time 2, increasing vitality (p = 0.02) and mental health (p  = 0.02) scores. CONCLUSIONS: QoL was shown to be dynamic throughout the years of RRT, transplantation being the treatment with more benefits to the ESRD. More time on dialysis and limited social and occupational routine were associated with a reduction in QoL.

[Examination of attitudes towards transplantation among patients with chronic renal failure]. / A krónikus vesebetegek transzplantációval kapcsolatos attitudjeinek vizsgálata.

The patients' attitudes towards kidney transplantation are significantly affected by the acceptance of the treatment to have a better quality of life. Exploration of the cognitive-emotional relation in patients with chronic renal failure. Our study included 285 kidney patients. We investigated three groups of patients: predialysis, dialysis and transplantation patients. In the framework of a pre-examination we have created an attitudinal questionnaire (85 items) that can be used to describe the cognitive and emotional attitude of kidney patients towards their illness and to measure scales. Negative attitudes towards transplantation were reported in dialysis and predialysis patients. In contrast, patients who had already undergone surgery were particularly positive about kidney transplantation. Many patients refuse transplantation which correlates with attitudes towards illness and healing. Our results showed that the exploration of the patients' cognitive emotional relation along with the medical diagnosis would have a better adherence towards the kidney substitutional treatment which ensures a better quality of life. Orv Hetil. 2018; 159(46): 1898-1904.

Decision-making process in the pre-dialysis CKD patients: do anxiety, stress and depression matter?

BACKGROUND: The transition from pre-dialysis chronic kidney disease (CKD) to renal replacement therapy (RRT) is a stressful event. Anxiety, depression and stress are frequent conditions in this population, and might play a role on the choice of dialysis modality. METHODS: This is a prospective study that included stages 4-5 CKD patients during a dialysis multi-disciplinary education program. Demographic, clinical, and laboratory data were evaluated. Hospital Anxiety and Depression Scale and a Perceived Stress Scale assessed levels of anxiety, depression and stress, respectively. RESULTS: A total of 67 from 190 recruited patients were included (59 ± 15 years, 54% males). Comparing patients who chose peritoneal dialysis (PD) and hemodialysis (HD), there were no differences on anxiety (p = 0.55), and depression scores (p = 0.467), and stress (p = 0.854). Anxious (p = 0.007) and depressive (p = 0.030) patients presented lower levels of phosphate than those not affected. There was a significant correlation (p < 0.0001) between anxiety and depression scores (R2 = 0.573), anxiety and stress scores (R2 = 0.542), depression and stress scores (R2 = 0.514). At the end of study, 29.8% of patients had already started on dialysis, and scores of anxiety, depression and stress reduced significantly (all p values < 0.0001), from 5.9 ± 3.3 to 1.8 ± 1.8, from 7.7 ± 4.0 to 3.8 ± 2.9 and from 28.6 ± 7.8 to 10.0 ± 6.2, respectively, regardless of which therapy was chosen. CONCLUSION: Depression, anxiety and perceived stress during final stages of CKD do not seem to be related to the choice of dialysis therapy and tend to decrease after dialysis initiation.

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.

Sociodemographic, Psychologic Health, and Lifestyle Outcomes in Young Adults on Renal Replacement Therapy.

BACKGROUND AND OBJECTIVES: Young adults receiving RRT face additional challenges in life. The effect of established kidney failure on young adulthood is uncertain. We aimed to establish the psychosocial and lifestyle status of young adults receiving RRT. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Our study was a systematic review and meta-analysis of 16-30-year olds receiving RRT compared with the general population. We selected randomized, controlled trials; cohort studies; or cross-sectional studies without language restriction and extracted proportions of sociodemographic and lifestyle outcomes or validated psychologic health tests producing quality of life, wellbeing, and self-esteem scores. We undertook random effects meta-analysis. RESULTS: There were 60 studies with a total of 15,575 participants. Studies were largely single-center cross-sectional studies of those transplanted in childhood. Compared with healthy peers, young adults on RRT had lower quality of life, which was worse for patients on dialysis (seven studies: standardized mean difference, -1.01; 95% confidence interval [95% CI], -1.32 to -0.70) compared with patients with transplants (nine studies: standardized mean difference, -0.42; 95% CI, -0.64 to -0.20). They were more likely to be unemployed (seven studies: relative risk, 1.89; 95% CI, 1.47 to 2.44) and live in the family home (two studies: relative risk, 1.84; 95% CI, 1.40 to 2.43). They were less likely to be married or have a partner (four studies: relative risk, 0.71; 95% CI, 0.53 to 0.95). Higher education (three studies: relative risk, 1.05; 95% CI, 0.73 to 1.51), alcohol abstinence (three studies: relative risk, 1.96; 95% CI, 0.84 to 4.67), and smoking status (two studies: relative risk, 0.72; 95% CI, 0.36 to 1.44) did not differ. Results were limited by high heterogeneity and a small evidence base, biased toward surviving patients. CONCLUSIONS: Established kidney failure is associated with lower quality of life in young people and limited employment, independence, and relationships compared with healthy peers. PODCAST: This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2017_10_19_CJASNPodcast_17_12_.mp3.

Patient Attitudes Toward Transplantation as Preferred Treatment Modality in Different Stages of Renal Disease.

OBJECTIVE: Kidney transplantation is generally considered to be the best treatment for end-stage renal disease. Not every patient can be operated, but many of suitable patients refuse this possibility. We aimed to explore the attitudes of patients with chronic kidney disease towards renal replacement therapies to recognize motives, thoughts, and feelings concerning accepting or refusing the treatment. We studied the attitudes towards the illness and the treatment, the appearance of depression, and the disease burden during different stages of the disease. METHODS: For this study we implemented a questionnaire that we developed (which has been described in an earlier publication of this journal) with 99 pre-dialysis patients, 99 dialysis patients, and 87 transplantation patients. We completed the attitude questionnaire designed by our team to include disease burden and depression questionnaires. RESULTS: We used discriminant analysis to describe different stages of the disease. There was a significant difference in the following factors between the three patient groups: accepting the new kidney, lack of confidence in transplantation therapy, fear of surgery, accepting self-responsibility in recovery, dependency on the transplanted kidney, confidence in recovery, subjective burden of dialysis, and denial of personal responsibility in maintaining the transplanted kidney. Significant differences were also detected in these three groups regarding the level of depression and disease burden: we measured the highest value among the dialysis patients, and the lowest value among the pre-dialysis patients. Comparing patients accepting and refusing transplantation, we found a correlation between the refusal of transplantation and the attitudes towards the illness and treatment. CONCLUSIONS: Most patients remain unmotivated to change treatment modality and refuse transplantation. Misbelief about transplantation shows a correlation with the motive of refusal. Dissemination of information may facilitate a change in the situation.

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.

Symptom Prevalence and the Negative Emotional States in End-Stage Renal Disease Patients with or without Renal Replacement Therapy: A Cross-Sectional Analysis.

BACKGROUND: Limited comparative data are available on the symptom severity and burden of dialyzed versus nondialyzed end-stage renal disease (ESRD) patients and their association with negative emotional states. OBJECTIVE: To investigate the prevalence of symptom burden and severity of ESRD patients and correlate the findings with their psychological status. METHODS: This was a cross-sectional study of dialyzed (N = 87) and nondialyzed (N = 100) patients. The symptom burden and severity were determined using the Dialysis Symptom Index (DSI) and the psychological assessment using Depression Anxiety Stress Scale 21 (DASS-21). RESULTS: Symptom severity evaluated using the DSI was comparable in both groups with fatigue as the most common symptom (n = 141, 75.4%), followed by sleep-related, sexual dysfunction, and dry skin problems. The symptom burden for worrying, dry skin and mouth, decreased appetite, numbness, and leg swelling were significant in not dialyzed group (p < 0.05).The DASS-21 scores revealed that 11% of patients were depressed, 21.8% were stressed, and 15.6% were anxious (p < 0.030). The prevalence of psychological disturbances was associated with high symptom burden regardless of their treatment options (p < 0.005). Dialyzed patients showed a positive psychological status trend on DASS-21 assessment. The not dialyzed group consisted of 34% from comprehensive conservative group, 26% of choice-restricted conservative care, and 40% with no definitive future plan. CONCLUSIONS: There was no difference in the prevalence of symptom burden and severity, irrespective of the type of treatment. Psychological disturbances were associated with higher symptom burden and severity and, therefore, should be screened thoroughly to achieve optimal ESRD management.

Depression, anxiety and health-related quality of life amongst patients who are starting dialysis treatment.

BACKGROUND: Chronic kidney disease (CKD) has a severe impact on patients' health-related quality of life (HRQL). The start of renal replacement therapy (RRT) significantly influences psychological, physical and social aspects of life. OBJECTIVES: To analyse the HRQL and psychological status (anxiety and depression) at the start of RRT. METHODS: We undertook an observational descriptive cross-sectional study. A total of 152 patients starting RRT were recruited for the study. HRQL was measured by the Kidney Disease and Quality of Life Short Form questionnaire. Levels of anxiety and depression were assessed by the Hospital Anxiety and Depression Scale questionnaire. Comorbidities and sociodemographic and clinical factors were also evaluated. FINDINGS: HRQL in patients with end-stage kidney disease (ESKD) is significantly affected by the initiation of RRT in all respects. States of anxiety and depression were present in 26.6% and 27% of patients, respectively. These states are significantly related to the emotional component of the quality of life. CONCLUSION: The initiation of RRT has a strong impact on HRQL in comparison with a reference population and with other stages of CKD. The early detection of an altered psychological state is important, as this condition should be treated from the first stages of the disease, as it can significantly affect the subsequent development of RRT and the patient's quality of life.

The Choice of Renal Replacement Therapy (CORETH) project: dialysis patients' psychosocial characteristics and treatment satisfaction.

Background: Until today, research has underestimated the role of psychosocial conditions as contributing factors to dialysis modality choice. The novelty within the Choice of Renal Replacement Therapy (CORETH) project (German Clinical Trials Register #DRKS00006350) is its focus on the multivariate associations between these aspects and their consecutive significance regarding treatment satisfaction (TS) in peritoneal dialysis (PD) versus haemodialysis (HD) patients. In this article, we present the baseline results of a multicentre study, which is supported by a grant from the German Ministry for Education and Research. Methods: Six to 24 months after initiation of dialysis, 780 patients from 55 dialysis centres all over Germany were surveyed. The questionnaire addressed psychosocial, physical, socio-demographic and shared decision-making (SDM) aspects. Furthermore, cognitive functioning was tested. After indexing the measures, two propensity score-matched groups (n = 482) were compared in a first step, after having chosen PD or HD. In a second step, a moderated multiple regression (n = 445) was conducted to initially investigate the multivariate impact of patient characteristics on TS. Results: In comparison with HD patients, PD patients were more satisfied with their treatment (P < 0.001), had a more autonomy-seeking personality (P = 0.04), had better cognitive functioning (P = 0.001), indicated more satisfying SDM (P < 0.001) and had a larger living space (P < 0.001). All patients were more satisfied when they had a good psychological state and received SDM. Especially in HD patients, TS was higher when the patient had a less autonomous personality, lower cognitive functioning, more social support, a poorer physical state and poorer socio-demographic conditions (R2 = 0.26). Conclusions: Psychosocial characteristics play a major role in TS in dialysis patients. Within a multivariate approach, these factors are even more important than physical or environment-related factors. In practice, focusing on SDM and screening patient characteristics at an early stage can foster patients' TS. Changes will be examined in a 1-year follow-up.

The Experience of Older People in the Shared Decision-Making Process in Advanced Kidney Care.

Introduction. This qualitative descriptive study was designed to understand the experiences of older people (>70 years) when making a decision about renal replacement therapy. This was a coproduced study, whereby patients and carers were involved in all aspects of the research process. Methods. A Patient and Carer Group undertook volunteer and research training. The group developed the interview questions and interviewed 29 people who had commenced dialysis or made a decision not to have dialysis. Interview data were transcribed and analysed, and common themes were identified. Results. 22 men and 7 women (mean age 77.4 yrs) from two hospitals were interviewed. 18 had chosen haemodialysis, 6 peritoneal dialysis, and 5 supportive care. The majority of patients were involved in the dialysis decision. Most were satisfied with the amount of information that they received, although some identified that the quality of the information could be improved, especially how daily living can be affected by dialysis. Conclusion. Our findings show that overall older patients were involved in the dialysis decision along with their families. Our approach is innovative because it is the first time that patients and carers have been involved in a coproduced study about shared decision-making.