Screening for symptoms of anxiety and depression in patients treated with renal replacement therapy: utility of the Edmonton Symptom Assessment System-Revised.

PURPOSE: The Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools have not been evaluated in patients treated with renal replacement therapy. METHODS: Kidney transplant recipients and patients on dialysis were recruited in Toronto. Patients were classified as having moderate/severe depression and anxiety symptoms using the established cut-off score of ≥ 10 on the Patient Health Questionnaire-9 (PHQ-9) and the General Anxiety Disorder-7 (GAD-7) questionnaires. RESULTS: This study included 931 participants; 62% male, mean age (SD) 55(16), and 52% White. All participants completed ESASr, however only 748 participants completed PHQ-9 and 769 participants completed GAD-7. Correlation between ESASr item scores and legacy scores were moderately strong (ESASr-D/PHQ-9: 0.61; ESASr-A/GAD-7: 0.64). We found good discrimination for moderate/severe depression and anxiety [area under the receiver operating characteristics curve (95% CI) ESASr-D 0.82(0.78-0.86); ESASr-A 0.87 (0.82, 0.92)]. The cut-off ≥ 2 for ESASr-D [Sensitivity = 0.76; Specificity = 0.77; Likelihood Ratio (LR) + = 3.29; LR - = 0.31] and ≥ 4 for ESASr-A (Sensitivity = 0.75; Specificity = 0.87; LR + = 5.76; LR - = 0.29) had the best combination of measurement characteristics. CONCLUSION: The identified ESASr-D and ESASr-A cut-off scores may be used to rule out patients without emotional distress with few false negatives. However, the low sensitivity identified in our analysis suggests that neither ESASr-D or ESASr-A are acceptable as standalone screening tools.

Evaluating symptom burden in kidney transplant recipients: validation of the revised Edmonton Symptom Assessment System for kidney transplant recipients - a single-center, cross-sectional study.

We assessed the validity of the Edmonton Symptom Assessment System (ESAS-r) in kidney transplant recipients (KTR). A cross-sectional sample of 252 KTR was recruited. Individual ESAS-r symptom scores and symptom domain scores were evaluated. Internal consistency, convergent validity, and construct validity were assessed with Cronbach's α, Spearman's rank correlations, and a priori-defined risk group comparisons. Mean (SD) age was 51 (16), 58% were male, and 58% Caucasian. ESAS-r Physical, Emotional, and Global Symptom Scores demonstrated good internal consistency (α > 0.8 for all). ESAS-r Physical and Global Symptom Scores strongly correlated with PHQ-9 scores (0.72, 95% CI: 0.64-0.78 and 0.74, 95% CI: 0.67-0.80). For a priori-defined risk groups, individual ESAS-r symptom score differed between groups with lower versus higher eGFR [pain: 1 (0-3) vs. 0 (0-2), delta = 0.18; tiredness: 3 (1-5) vs. 1.5 (0-4), delta = 0.21] and lower versus higher hemoglobin [tiredness: 3 (1-6) vs. 2 (0-4), delta = 0.27]. ESAS-r Global and Physical Symptom Scores differed between groups with lower versus higher hemoglobin [13 (6-29) vs. 6.5 (0-18.5), delta = 0.3, and 9 (2-19) vs. 4 (0-13), delta = 0.24] and lower versus higher eGFR [11 (4-20) vs. 6.5 (2-13), delta = 0.21, and 7 (2-16) vs. 3 (0-9), delta = 0.26]. These data support reliability and construct validity of ESAS-r in KTR. Future studies should explore its clinical utility for symptom assessment among KTR.

Ethnic background is associated with no live kidney donor identified at the time of first transplant assessment-an opportunity missed? A single-center retrospective cohort study.

Patients from ethnocultural minorities have reduced access to live donor kidney transplant (LDKT). To explore early pretransplant ethnocultural disparities in LDKT readiness, and the impact of the interactions with the transplant program, we assessed if patients had a potential live donor (LD) identified at first pretransplant assessment, and if patients with no LD initially received LDKT subsequently. Single-center, retrospective cohort of adults referred for kidney transplant (KT) assessment. Multivariable logistic regression assessed the association between ethnicity and having a potential LD. Cox proportional hazard analysis assessed the association between no potential LD initially and subsequent LDKT. Of 1617 participants, 66% of Caucasians indicated having a potential LD, compared with 55% of South Asians, 44% of African Canadians, and 41% of East Asians (P < 0.001). In multivariable logistic regression analysis, the odds of having a potential LD identified was significantly lower for African, East and South Asian Canadians. No potential LD at initial KT assessment was associated with lower likelihood of LDKT subsequently (hazard ratio [HR], 0.14; [0.10-0.19]). Compared to Caucasians, African, East and South Asian and African Canadians are less likely to have a potential LD identified at first KT assessment, which predicts a lower likelihood of subsequent LDKT.

Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study.

RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. STUDY DESIGN: Descriptive qualitative study using semi-structured interviews and focus groups. SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. ANALYTIC APPROACH: Thematic analysis. RESULTS: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). LIMITATIONS: Participants were primarily white, educated, married, and English speaking, which limits generalizability. CONCLUSIONS: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.

Ethnic Background Is a Potential Barrier to Living Donor Kidney Transplantation in Canada: A Single-Center Retrospective Cohort Study.

BACKGROUND: We examined if African or Asian ethnicity was associated with lower access to kidney transplantation (KT) in a Canadian setting. METHODS: Patients referred for KT to the Toronto General Hospital from January 1, 2003, to December 31, 2012, who completed social work assessment, were included (n = 1769). The association between ethnicity and the time from referral to completion of KT evaluation or receipt of a KT were examined using Cox proportional hazards models. RESULTS: About 54% of the sample was white, 13% African, 11% East Asian, and 11% South Asian; 7% had "other" (n = 121) ethnic background. African Canadians (hazard ratio [HR], 0.75; 95% CI: 0.62-0.92]) and patients with "other" ethnicity (HR, 0.71; 95% CI, 0.55-0.92) were less likely to complete the KT evaluation compared with white Canadians, and this association remained statistically significant in multivariable adjusted models. Access to KT was significantly reduced for all ethnic groups assessed compared with white Canadians, and this was primarily driven by differences in access to living donor KT. The adjusted HRs for living donor KT were 0.35 (95% CI, 0.24-0.51), 0.27 (95% CI, 0.17-0.41), 0.43 (95% CI, 0.30-0.61), and 0.34 (95% CI, 0.20-0.56) for African, East or South Asian Canadians and for patients with "other" ethnic background, respectively. CONCLUSIONS: Similar to other jurisdictions, nonwhite patients face barriers to accessing KT in Canada. This inequity is very substantial for living donor KT. Further research is needed to identify if these inequities are due to potentially modifiable barriers.

Health-related quality of life and clinical outcomes in kidney transplant recipients.

BACKGROUND: Health-related quality of life (HRQoL) is an important outcome measure in patients with chronic kidney disease. It also has been shown repeatedly to predict mortality in various patient populations. In a prospective cohort study, we assessed the association between HRQoL and long-term clinical outcome in kidney transplant recipients. STUDY DESIGN: Prospective prevalent cohort study. SETTING & PARTICIPANTS: We collected sociodemographic parameters, medical and transplant history, and laboratory data at baseline from 879 prevalent kidney transplant recipients (mean age, 49 ± 13 [standard deviation] years; 58% men; and 17% with diabetes mellitus). PREDICTOR: We assessed HRQoL using the KDQoL-SF (Kidney Disease Quality of Life Short Form) questionnaire and assessed depressive symptoms using the Center for Epidemiologic Studies-Depression Scale. OUTCOMES: All-cause mortality and death-censored transplant loss or death with functioning transplant. Cox regression models and semiparametric competing-risks regression analyses were used to measure associations between HRQoL scores and outcomes. RESULTS: Most examined HRQoL domains were associated with clinical outcome in unadjusted models. After adjusting for several important confounders, the 36-Item Short Form Health Survey (SF-36) Physical Composite Score and Physical Functioning and General Health Perception subscale scores remained independently associated with clinical outcomes. Every 10-point increase in SF-36 Physical Composite Score and Physical Functioning and General Health Perception scores was associated with 18% (HR, 0.82; 95% CI, 0.71-0.95), 11% (HR, 0.89; 95% CI, 0.84-0.94), and 7% lower risks of mortality (HR, 0.93; 95% CI, 0.88-1.00), respectively. LIMITATIONS: Single-center study. CONCLUSIONS: We showed that the SF-36 Physical Composite Score and Physical Functioning and General Health Perception KDQoL-SF domain scores are associated independently with increased risk of mortality in kidney transplant patients. Regular assessment of HRQoL may be a useful tool to inform health care providers about the prognosis of kidney transplant recipients. Additional studies are needed to assess whether interventions aimed at improving HRQoL would improve clinical outcomes in this patient population.

Comorbid depression is associated with increased healthcare utilization and lost productivity in persons with diabetes: a large nationally representative Hungarian population survey.

OBJECTIVE: To estimate the prevalence of depression among people with diabetes and to examine the association of comorbid depression with lost productivity and health resource utilization in persons with and without diabetes. METHODS: Cross-sectional survey, enrolling 12,643 individuals aged >18 years. Clustered, stratified sampling procedure was utilized. This sample represented 0.16% of the Hungarian adult population according to age, gender, and geographic regions. The severity of depressive symptoms was measured by the abbreviated Beck Depression Inventory. RESULTS: The prevalence of diabetes in the sample was 6.2% (95% Confidence Interval (CI) = 5.7-6.6), and 13.4% (95% CI = 12.8-13.9) were classified as depressed. Adults with diabetes were two times more likely to have depression (adjusted odds ratio (OR) = 1.83, 95% CI = 1.53-2.19, p < .001) versus individuals without diabetes. Compared with nondepressed people with diabetes, those with diabetes and comorbid depression were older, less educated, more likely to be female and physically inactive, less likely to be employed, and married and had more comorbidities. In multivariate regression analyses, people with diabetes and depression had significantly greater odds of prolonged bed days due to illness (>or=20 days) (OR = 2.6, 95% CI = 1.69-3.88, p < .001), prolonged length of hospital stay (>or=18 days) (OR = 2.1, 95% CI = 1.27-3.45, p = .004), and multiple hospital admissions (>or=2) (OR = 1.8, 95% CI = 1.13-2.82, p = .01) compared with nondepressed diabetic patients. CONCLUSIONS: These findings further document the association between depression and health resource utilization and lost productivity in people with diabetes. Screening and treating depression are important for everyday clinical care and public health initiatives to improve health outcomes for people with diabetes.

Non-medical factors influencing access to renal transplantation.

Considering the scarcity of available donor kidneys and the increasing number of patients with end-stage renal disease (ESRD) who would potentially benefit from renal transplantation, objective and equitable patient selection and equitable access to renal transplantation bear substantial importance. Inequalities in access to renal transplantation have been extensively documented over the last 2 decades with regard to age, gender, ethnicity, socioeconomic and psycho-social factors. In this paper we review a wide spectrum of social, patient and system-related factors along the transplantation process that may be associated with disparities, and we aim to describe the complex interrelationship between these factors that might influence treatment decisions by patients and health-care professionals. Understanding potentially modifiable barriers to kidney transplantation may allow designing targeted interventions in order to guarantee fair recipient selection and equal access to renal transplantation.

Sociodemographic factors and patient perceptions are associated with attitudes to kidney transplantation among haemodialysis patients.

BACKGROUND: Treatment decisions made by patients with chronic kidney disease are crucial in the renal transplantation process. These decisions are influenced, amongst other factors, by attitudes towards different treatment options, which are modulated by knowledge and perceptions about the disease and its treatment and many other subjective factors. Here we study the attitude of dialysis patients to renal transplantation and the association of sociodemographic characteristics, patient perceptions and experiences with this attitude. METHODS: In a cross-sectional study, all patients from eight dialysis units in Budapest, Hungary, who were on haemodialysis for at least 3 months were approached to complete a self-administered questionnaire. Data collected from 459 patients younger than 70 years were analysed in this manuscript. RESULTS: Mean age of the study population was 53 +/- 12 years, 54% were male and the prevalence of diabetes was 22%. Patients with positive attitude to renal transplantation were younger (51 +/- 11 versus 58 +/- 11 years), better educated, more likely to be employed (11% versus 4%) and had prior transplantation (15% versus 7%)(P < 0.05 for all). In a multivariate model, negative patient perceptions about transplantation, negative expectations about health outcomes after transplantation and the presence of fears about the transplant surgery were associated, in addition to increasing age, with unwillingness to consider transplantation. CONCLUSIONS: Negative attitudes to renal transplantation are associated with potentially modifiable factors. Based on this we suggest that it would be necessary to develop standardized, comprehensible patient information systems and personalized decision support to facilitate modality selection and to enable patients to make fully informed treatment decisions.

Co-morbidity and quality of life in chronic kidney disease patients.

Chronic kidney disease (CKD) is frequently associated with other chronic medical conditions. Adjusting for potential confounding factors that are associated with the outcome of interest is important both in clinical research and in everyday clinical practice. Comorbidity is such an important co-variable that it is reported to predict different outcomes in patients with ESRD. Health related quality of life (HRQoL) has increasingly been recognized as an important aspect of health care delivery, measure of effectiveness and patient experience, in chronic medical conditions. The progressively older ESRD patient population of industrialized countries is significantly debilitated by the burden of disease and also by the intrusiveness of renal replacement therapies. For these patients simply prolonging life is not enough. Little information has been published about the association of comorbidity and HRQoL. The aim of this review is to summarize the significance of comorbidity in patients with ESRD, with a special focus on the complex relationship between comorbidity and HRQoL. Several frequently used instruments will be described and the current literature, that compared the relative utility and accuracy of these tools, will be reviewed. Finally, the impact of selected medical conditions on HRQoL of patients with end-stage renal disease will be demonstrated.

Factor structure and reliability of the Hungarian version of the Illness Intrusiveness Scale: invariance across North American and Hungarian dialysis patients.

OBJECTIVES: The objectives of this study were to compare the factor structure and to assess the reliability of the Hungarian version of the Illness Intrusiveness Rating Scale (IIRS), testing internal validity and employing simultaneous confirmatory factor analysis (SCFA) in two large samples of North American versus Hungarian patients with end-stage renal disease (ESRD). METHODS: Translation was conducted according to current recommendations. Following pilot testing, 365 maintenance haemodialysis patients completed the scale. Hungarian data were compared with IIRS data from North American ESRD patients undergoing maintenance hemodialysis to evaluate item bias (Group x Item ANOVA). RESULTS: Confirmatory factor analyses indicated a good fit between the previously hypothesized three-factor model ("relationships and personal development", "intimacy", and "instrumental" life domains) of the original English version and the Hungarian translation. Although statistically significant (P<.05), the effect size for the Groups x Items interaction was not substantial. Internal consistency was very good (Cronbach's alpha=.80) for the total score, and, although somewhat lower than ideal, it was still in the acceptable range for the subscales (.64-.67). These numbers are similar to values reported for the original English version. Test-retest reliability was also acceptable. CONCLUSION: The Hungarian translation of the IIRS has the same three-dimensional factor structure as the original English-language version does. Furthermore, it is sufficiently reliable for research applications. These features satisfy important requirements of cultural equivalence.

Increased utilization of health services by insomniacs--an epidemiological perspective.

OBJECTIVES: Epidemiological data describing the prevalence of sleep complaints in Hungary and its region are lacking; furthermore, limited information is available on health care use by individuals with sleep complaints. We assessed the prevalence of sleep complaints, insomnia in particular, in a nationally representative sample of the Hungarian population and assessed health care utilization by insomniacs. METHODS: Cross-sectional study, enrolling a nationally representative sample (N=12,643) of the adult Hungarian population. A battery of questionnaires was administered during a home interview. The Athens Insomnia Scale (AIS), additional questions on sleep behavior, as well as questions on current medical therapy for somatic and mental disorders were included in the battery of questionnaires administered. Psychosocial and demographic characteristics were also tabulated. RESULTS: Forty-seven percent of the sample reported at least one complaint related to sleep. Based on the AIS we report a 9% prevalence of insomnia in the total sample. Sleep deprivation was highly prevalent in the younger and middle-aged groups. The frequency of sleep problems increased with age. Individuals diagnosed with insomnia reported more frequent utilization of health services, including sick leave, emergency visits and hospitalization, than those without insomnia. CONCLUSION: Sleep complaints and sleep deprivation are frequent problems in the Hungarian population and are associated with increased health care utilization. The prevalence of insomnia in our sample was similar to what has been previously reported from other countries. The high prevalence of sleep-deprived individuals warrants further attention. Interventions that effectively improve insomnia may also reduce health care utilization by the affected individuals.

[Significance and practical aspects of quality-of-life research]. / Az életminóség vizsgálatának jelentósége és gyakorlati szempontjai.

Over the past ten-fifteen years there has been a continuous increase in the interest in quality of life research. There is a huge increase in the number of clinical trials applying quality of life as an outcome measure and also in the number of studies where assessment of quality of life is the main focus of the research. During the last decades the resources of health care has increasingly been directed towards the care of chronically ill patients. In these conditions several symptoms persist or may even worsen even with effective therapy. This provides an explanation why quality of life has become an important and useful outcome measure complementing the traditional "hard outcomes" such as morbidity and mortality. Assessment of quality of life is also an important component of cost-effectiveness studies and health-technology assessment. Recently, the overall quality of quality of life research has improved significantly. In the early days, several instruments were used without any rigorous methodological assessment of the instrument itself. At present there are a number of meticulously developed and well documented instruments available with their reliability and validity evaluated with psychometric methods in different patient's populations. When one wants to use one of these measures in a different cultural environment or in a different language one faces several difficulties and a rigorous methodology needs to be followed when translating and validating quality of life tools. In this review the authors discuss the significance of quality of life assessments and list some practical issues concerning the methodology of quality of life studies. Finally they provide a short description of the most commonly used instruments and will give a reference of the scales available in Hungarian.