Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36) Normative Values for the United States Dialysis Population and New Single Summary Score.

BACKGROUND: The Kidney Disease Quality of Life 36-item short form survey (KDQOL-36) is a widely used, patient-reported outcome measure for patients on dialysis. Efforts to aid interpretation are needed. METHODS: We used a sample of 58,851 dialysis patients participating in the Medical Education Institute (MEI) KDQOL Complete program, and 443,947 patients from the US Renal Data System (USRDS) to develop the KDQOL-36 Summary Score (KSS) for the kidney-targeted KDQOL-36 scales (Burdens of Kidney Disease [BKD], Symptoms and Problems of Kidney Disease [SPKD], and Effects of Kidney Disease [EKD]). We also used the MEI and USRDS data to calculate normative values for the Short Form-12 Health Survey's Physical Component Summary (PCS) and Mental Component Summary (MCS), and the KDQOL-36's BKD, SPKD, and EKD scales for the United States dialysis population. We used confirmatory factor analysis (CFA) models for KDQOL-36 kidney-targeted items, evaluated model fit with the comparative fit index (CFI; >0.95 indicates good fit) and root-mean-squared error of approximation (RMSEA; <0.06 indicates good fit), and estimated norms by matching the joint distribution of patient characteristics in the MEI sample to those of the USRDS sample. RESULTS: A bifactor CFA model fit the data well (RMSEA=0.046, CFI=0.990), supporting the KSS (α=0.91). Mean dialysis normative scores were PCS=37.8 and MCS=50.9 (scored on a T-score metric); and KSS=73.0, BKD=52.8, SPKD=79.0, and EKD=74.1 (0-100 possible scores). CONCLUSIONS: The KSS is a reliable summary of the KDQOL-36. The United States KDQOL-36 normative facilitate interpretation and incorporation of patient-related outcome measures into kidney disease care.

Insights into nephrologist training, clinical practice, and dialysis choice.

There is variable emphasis on dialysis-specific training among US nephrology fellowship programs. Our study objective was to determine the association between nephrology training experience and subsequent clinical practice. We conducted a national survey of clinical nephrologists using a fax-back survey distributed between March 8, 2010 and April 30, 2010 (N = 629). The survey assessed the time distribution of clinical practice, self-assessment of preparedness to provide care for dialysis patients at the time of certification examination, distribution of dialysis modality among patients, and nephrologists' choice of dialysis modality for themselves if their kidneys failed. While respondents spent 28% of their time caring for dialysis patients, 38% recalled not feeling very well prepared to care for dialysis patients when taking the nephrology certification examination. Sixteen percent obtained additional dialysis training after fellowship completion. Only 8% of US dialysis patients use home dialysis; physicians very well prepared to care for dialysis patients at the time of certification or who obtained additional dialysis training were significantly more likely to provide care to home peritoneal dialysis patients. Even though 92% of US dialysis patients receive thrice weekly in-center hemodialysis, only 6% of nephrologists selected this for themselves; selection of therapy for self was associated with dialysis modalities used by their patients. Nephrology training programs need to ensure that all trainees are very well prepared to care for dialysis patients, as this is central to nephrology practice. Utilization of dialysis therapies other than standard hemodialysis is dependent, in part, on training experience.

Successful daily home hemodialysis patient-care partner dyads: benefits outweigh burdens.

Understanding and communicating the benefits vs. burdens of short daily home hemodialysis (SDHD) is presumed to be important to the success of recruiting patients and care partners and preventing dropout. We conducted an in-depth qualitative study of 13 patient and care partner couples (dyads) who completed at least 6 months of SDHD after at least 6 months of in-center hemodialysis to inform strategies for screening, training, and support to improve SDHD retention. In this exploratory descriptive study, all patients reported better well-being since starting SDHD. Considering the relationship and psychosocial factors, 4 profiles for dyadic coping emerged: (1) Thriving (n=5)--patients and care partners were flourishing; (2) Surviving (n=4)--strong couples were adjusting to challenges; (3) Martyrdom (n=3)--1 partner defers his/her needs and resentments to make SDHD work; and (4) Seeking another option (n=1)--patient unwilling to burden an anxious partner. Overall, patients who did more SDHD self-care, particularly self-cannulation, were more likely to thrive, regardless of dyad profile, and strong relationships tended to become stronger when faced with the challenge of SDHD. Training that was unhurried and valued care partners as well as patients, used a mix of learning strategies, and provided a home visit for the first home treatment was associated with Thriving dyads; training that was directive, inflexible, and focused on the patient at the expense of the partner was not. We recommend that centers screen dyads for relationship quality and integrate couple relationship education into SDHD training as required. Further, we recommend a large-scale, multi-center prospective study to test this model of how couple relationship and coping styles affect clinical outcomes and rates of continuation with SDHD.

Self-efficacy and self-management behaviors in patients with chronic kidney disease.

Although past research has examined self-management among patients with end-stage renal disease (ESRD), little is known about self-management in patients with chronic kidney disease (CKD). In this cross-sectional survey (no intervention), 174 patients with CKD (serum creatinine > or =1.7 mg/dL) completed self-reported measures of self-efficacy, physical and mental functioning, and self-management. The purpose of the study was to explore the association between patients' perceived self-efficacy and their self-management behaviors. Five types of self-management behaviors were measured: communication with caregivers, partnership in care, self-care, self-advocacy, and medication adherence. Controlling for other relevant variables including age, education, diabetic status, hypertension, serum creatinine, physical functioning, and mental health functioning, higher perceived self-efficacy scores were associated with increased communication, partnership, self-care, and medication-adherence behaviors. In this study, patients' perceived self-efficacy was a more consistent correlate of self-management behavior than were demographic or health characteristics. Because self-management has been associated with positive patient outcomes, fostering self-management by supporting patient self-efficacy may have long-term benefits.

In-center hemodialysis patients' use of the internet in the United States: a national survey.

BACKGROUND: Education is critical to help patients with chronic kidney disease self-manage their illness by thoroughly understanding their treatment options, medications, diet and fluids, and symptoms. METHODS: This study assesses in-center hemodialysis patients' use of the Internet in general and for health information seeking, both independently and by proxy-asking a family member or friend. Patients (n = 1,804) were recruited from 37 randomly selected dialysis clinics in 18 End-Stage Renal Disease Networks. Respondents completed a survey in English or Spanish. RESULTS: Across the entire sample, 34.7% had used the Internet themselves compared with 38% of disabled Americans. Internet use was more likely among patients who were younger, non-Hispanic, from the Southeast or Texas, and more highly educated. Median education level of English-reading respondents was 12th grade. Their total Internet health information use was 43.5% (24.7% independently, 18.8% by proxy). Median education level of Spanish-reading respondents was 6th grade; their total Internet health information use was only 25.5% (8.5% independently, 17% by proxy). Reasons for not using the Internet related more to not having access to a computer or knowledge (70.4%) than to lack of interest (21.3%). CONCLUSION: Alerting patients to Internet access at public libraries or providing a computer in dialysis clinic waiting rooms may help overcome this barrier. Proxy use may extend the reach of the Internet to patients who do not have access on their own.

Self-management, knowledge, and functioning and well-being of patients on hemodialysis.

Past research suggests that patients' self-management behavior and knowledge about their condition/treatment may impact functioning and well-being. Specific self-management activities used by patients on hemodialysis have included cooperative/participatory and protective/proactive strategies. In this cross-sectional study, measures of self-management and knowledge were administered to 372 patients on hemodialysis-from 17 dialysis facilities. Findings suggest that the patients studied were low self-managers. The most commonly used self-management strategies were the cooperative/participatory activities of self-care during hemodialysis and shared responsibility in care. Multiple linear regression showed self-care during hemodialysis to be positively associated with physical functioning, measured by the SF-12 Physical Component Summary (PCS-12) scale. Age, diabetes, and two protective/proactive strategies (selective symptom management and assertive self-advocacy) were negatively associated with the PCS-12. Selective symptom management was also negatively associated with mental health functioning measured by the SF-12 Mental Component Summary (MCS-12), whereas patient knowledge of kidney disease/treatment was positively associated with the MCS-12. Because past research has shown the SF-36 PCS and the MCS scores to be associated with mortality and hospitalizations, using cooperative/participatory self-management behaviors, minimizing the need for protective/proactive strategies, and increasing patients' knowledge of kidney disease may have long-term benefits.

The peritoneal dialysis experience: insights from long-term patients.

This exploratory-descriptive study identifies dimensions of self-management demonstrated by patients with end stage renal disease (ESRD) who have been successfully treated with peritoneal dialysis (PD) for more than 4 years (range = 4.1 to 13.1 years, mean = 7.5 years). After IRB review, semi-structured interviews were conducted with 18 individuals, 10 male and 8 female; 11 Caucasian, 6 African-American, and 1 Hispanic. Respondents ranged in age from 33 to 86 years (mean = 54.4 years). Interviews were audio-recorded and verbatim transcriptions were analyzed according to a content analytic procedure, with movement from specific to general. Two broad domains of self-management were identified: autonomy/control in health care and normality in everyday life. Autonomy/control was comprised of three specific dimensions: partnership in care, self-care, and self-care self-efficacy. Normality in everyday life included the dimensions of flexibility/freedom, interpretation of illness severity, and perception of body image. Although the small sample size and methodology limit generalizability, insights into the lived self-management experience on PD were identified. Such insights lay the groundwork for development of interventions to facilitate informed decision-making regarding dialysis modality, to teach tactics for effective self-management on PD, and to help health care professionals to support the self-management efforts of patients on PD.

Activating chronic kidney disease patients and family members through the Internet to promote integration of care.

PURPOSE: To describe the potential role of the Internet as a vehicle for improving integration of care through activating chronic kidney disease patients and their family members. Also, to describe how that potential is being developed through a website sponsored by the Medicare program in the United States. BACKGROUND: The Internet is expanding at a rapid rate, and health-related websites are one of its most popular features. Efforts to promote integration of care have focused mainly on providers up to now, and more emphasis is needed on the potential roles of patients. Chronically ill patients have particular needs for improved education about their conditions and enhanced involvement in care planning and treatment decisions. Medicare developed the Dialysis Facility Compare website to serve those goals for people with chronic kidney disease. METHODS: We conducted qualitative research with 140 chronic kidney disease patients and family members, and 130 renal care professionals to evaluate and improve the Dialysis Facility Compare website. A series of 19 focus groups, 13 triads (small focus groups), and 56 individual interviews were conducted in four regions of the United States and by telephone. RESULTS: We found that the Dialysis Facility Compare website has the potential to improve integration of care for people with chronic kidney disease in at least three ways. First: by expanding the roles of patients as members of the multi-disciplinary team of caregivers treating their disease. Second: through better integration of the informal care provided in the home and community with the formal care provided by health professionals. Third: by improving coordination of between care provided in the pre-dialysis and dialysis phases of the disease. DISCUSSION: We developed recommendations for revising and enhancing the Dialysis Facility Compare website in a number of ways to better promote patient activation and integration of care. The unique features of the Internet, such as its different dimensions of interactivity, and applications of behavioural theories for website design should also be further explored.

Medical outcomes study short form-36: a consistent and powerful predictor of morbidity and mortality in dialysis patients.

BACKGROUND: One of the guidelines released by the National Kidney Foundation Kidney Disease Outcomes Quality Initiative (K/DOQI) recommends that patients with glomerular filtration rate (GFR) less than 60 mL/min/1.73 m2 undergo regular assessment of functioning and well-being (FWB) to establish baselines, monitor changes in FWB over time, and assess the effect of interventions on FWB. Although this recommendation stresses the importance of assessing and monitoring physical and mental health functioning, the Medical Outcomes Study Short Form-36 (MOS SF-36) might also be useful for predicting crucial longer-term patient outcomes. This cross-sectional study tested the hypothesis that the Physical Component Summary (PCS) and Mental Component Summary (MCS) scales of the MOS SF-36 predict morbidity (measured as hospitalization) and mortality rates among dialysis patients. METHODS: Data were collected from 13,952 prevalent dialysis patients served by Fresenius Medical Care North America including age, gender, race, diabetes, serum albumin, creatinine, bicarbonate, potassium, phosphorus, hemoglobin, iron, ferritin, white blood cell count, urea reduction ratio, serum glutamic oxaloacetic-transaminase, and systolic blood pressure. FWB was measured via the MOS SF-36 Summary scale scores, PCS, and MCS. Also collected was information about hospitalizations and patient mortality. RESULTS: PCS and MCS were consistent predictors of hospitalizations and mortality rates even after adjustment for clinically relevant factors. CONCLUSION: Because PCS and MCS are associated with hospitalization and mortality, administering this self-report measure may serve as a valuable supplement to clinical measures traditionally relied on to predict patient outcomes. Moreover, such information may be unavailable through any other single mechanism.

Renal rehabilitation and improved patient outcomes in Texas dialysis facilities.

BACKGROUND: Because a cure is not a reasonable goal for patients with end-stage renal disease (ESRD), optimal physical and mental health functioning are primary objectives of care and major determinants of health-related quality of life, morbidity, and mortality. This cross-sectional study used facility-level survey data to test the hypothesis that dialysis unit rehabilitation activities are associated with higher patient functional status. METHODS: Data were collected from 169 dialysis facilities in the ESRD Network of Texas (Network 14), including facility characteristics, facility-level patient demographic and clinical characteristics, and facility rehabilitation activities measured by the Life Options Unit Self-Assessment Tool (USAT). Facility-level data on patient functioning and well-being measured by the Medical Outcomes Study 36-Item Short-Form Health Survey were obtained from all 86 of the respondent facilities that collected it. RESULTS: Most participating facilities reported performing rehabilitation activities in all five categories (encouragement, education, exercise, employment, and evaluation). The median number reported was 32 of a possible 100 activities. Exercise interventions were the least often implemented activities. Linear multiple regression showed that facility rehabilitation activity scores measured by the USAT were associated with higher facility mean Mental Component Scale (MCS) scores, controlling for facility characteristics (size, profit status), facility-level patient demographic characteristics (diabetes, race, sex, age), and facility-level patient laboratory variables: urea reduction ratio and hemoglobin and serum albumin levels. CONCLUSION: Because MCS scores have been shown in other studies to be inversely related to morbidity and mortality, this finding suggests that the introduction of rehabilitation interventions into the dialysis care regimen may prove beneficial.

Hemodialysis patients' symptom experiences: effects on physical and mental functioning.

Dialysis patients experience numerous symptoms, some serious in terms of medical outcomes and all serious in terms of potential reductions in functioning and well-being. This cross-sectional study used self-reports of hemodialysis patients to catalogue symptoms; hypothesizing that frequently experienced symptoms, regardless of acuity, negatively affect functioning and well-being. Data were collected from 307 randomly selected hemodialysis patients from 14 dialysis facilities. Twenty-two of the 47 symptoms queried had mean experience scores of > or = 1 on a scale of 0-4, that is, were experienced by patients at least "a little of the time." Seventeen of these 22 symptoms were significantly correlated (< or = .01) with the SF-36 Physical Component Summary (PCS) scale, Mental Component Summary (MCS) scale, or both. All but four of these 17 symptoms (dry mouth, itchy skin, lack of appetite, and restless legs) clustered around fatigue/sleep, sexual concerns, or mobility. Linear multiple regression showed age, diabetes, the fatigue/sleep and mobility clusters, and itchy skin to be negatively associated with the PCS (p < or = .01). The fatigue/sleep cluster was also negatively associated with the MCS. Because previous research has shown the PCS and MCS to be associated with morbidity and mortality, management of common, non-acute symptoms may have long-term benefits for hemodialysis patients.