Kidney Failure Patients' Perceptions and Definitions of Health: A Qualitative Study.

Rationale & Objective: Patients with kidney failure who have used multiple treatment modalities are a unique source of information for how different options may best fit their values. We aimed to understand how people interpret their health and kidney failure treatment experience to inform providers who facilitate shared decision-making conversations. Study Design: This qualitative, interpretive phenomenological study explores how patients with kidney failure interpret health throughout their treatment trajectory. Setting & Participants: We recruited a purposive sample of patients who had used 3 or more kidney failure treatment options, including transplant and dialysis from transplant clinics and online support groups, for semi-structured interviews. Eligible participants were over 18 and spoke English for a total of 7 current transplant, 10 current home dialysis, and 1 current in-center patient. Analytical Approach: A 6-step iterative process of data analysis occurred concurrently with data collection. Results: Half of the 18 participants were Black; 67% were women. Three interrelated themes emerged from interviews: ability to engage in meaningful activities; working for balance; and living in context. Participants evaluated health according to their ability to engage in meaningful activities while balancing their emotional and physical needs with their life goals. When their social and treatment environments supported their autonomy, participants also considered themselves healthy. Limitations: The inclusion of only English-speaking patients limits the transferability of findings. A longitudinal design, repeated interviews, observation, and dyadic interviews would increase the health care providers' understanding and interpretation of health. Conclusions: The themes demonstrated patients evaluated health based on ability to engage in meaningful activities while maintaining balance. The treatment context, particularly how health care providers responded to patients' physiological experience, autonomy, and power, influenced interpretation of patient treatment experiences. Integrating patient interpretations of health with quantitative measures of treatment effectiveness can help health care providers better partner with patients to provide effective care for kidney failure.

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.

Negligible impact of differential item functioning between Black and White dialysis patients on the Kidney Disease Quality of Life 36-item short form survey (KDQOLTM-36).

PURPOSE: Black dialysis patients report better health-related quality of life (HRQOL) than White patients, which may be explained if Black and White patients respond systematically differently to HRQOL survey items. METHODS: We examined differential item functioning (DIF) of the Kidney Disease Quality of Life 36-item (KDQOLTM-36) Burden of Kidney Disease, Symptoms and Problems with Kidney Disease, and Effects of Kidney Disease scales between Black (n = 18,404) and White (n = 21,439) dialysis patients. We fit multiple group confirmatory factor analysis models with increasing invariance: a Configural model (invariant factor structure), a Metric model (invariant factor loadings), and a Scalar model (invariant intercepts). Criteria for invariance included non-significant χ2 tests, > 0.002 difference in the models' CFI, and > 0.015 difference in RMSEA and SRMR. Next, starting with a fully invariant model, we freed loadings and intercepts item-by-item to determine if DIF impacted estimated KDQOLTM-36 scale means. RESULTS: ΔCFI was 0.006 between the metric and scalar models but was reduced to 0.001 when we freed intercepts for the burdens and symptoms and problems of kidney disease scales. In comparison to standardized means of 0 in the White group, those for the Black group on the Burdens, Symptoms and Problems, and Effects of Kidney Disease scales were 0.218, 0.061, and 0.161, respectively. When loadings and thresholds were released sequentially, differences in means between models ranged between 0.001 and 0.048. CONCLUSION: Despite some DIF, impacts on KDQOLTM-36 responses appear to be minimal. We conclude that the KDQOLTM-36 is appropriate to make substantive comparisons of HRQOL between Black and White dialysis patients.

Psychometric Properties of the Kidney Disease Quality of Life 36-Item Short-Form Survey (KDQOL-36) in the United States.

BACKGROUND: The Centers for Medicare & Medicaid Services require that dialysis patients' health-related quality of life be assessed annually. The primary instrument used for this purpose is the Kidney Disease Quality of Life 36-Item Short-Form Survey (KDQOL-36), which includes the SF-12 as its generic core and 3 kidney disease-targeted scales: Burden of Kidney Disease, Symptoms and Problems of Kidney Disease, and Effects of Kidney Disease. Despite its broad use, there has been limited evaluation of KDQOL-36's psychometric properties. STUDY DESIGN: Secondary analyses of data collected by the Medical Education Institute to evaluate the reliability and factor structure of the KDQOL-36 scales. SETTINGS & PARTICIPANTS: KDQOL-36 responses from 70,786 dialysis patients in 1,381 US dialysis facilities that permitted data analysis were collected from June 1, 2015, through May 31, 2016, as part of routine clinical assessment. MEASUREMENTS & OUTCOMES: We assessed the KDQOL-36 scales' internal consistency reliability and dialysis facility-level reliability using coefficient alpha and 1-way analysis of variance. We evaluated the KDQOL-36's factor structure using item-to-total scale correlations and confirmatory factor analysis. Construct validity was examined using correlations between SF-12 and KDQOL-36 scales and "known groups" analyses. RESULTS: Each of the KDQOL-36's kidney disease-targeted scales had acceptable internal consistency reliability (α=0.83-0.85) and facility-level reliability (r=0.75-0.83). Item-scale correlations and a confirmatory factor analysis model evidenced the KDQOL-36's original factor structure. Construct validity was supported by large correlations between the SF-12 Physical Component Summary and Mental Component Summary (r=0.40-0.52) and the KDQOL-36 scale scores, as well as significant differences on the scale scores between patients receiving different types of dialysis, diabetic and nondiabetic patients, and patients who were employed full-time versus not. LIMITATIONS: Use of secondary data from a clinical registry. CONCLUSIONS: The study provides support for the reliability and construct validity of the KDQOL-36 scales for assessment of health-related quality of life among dialysis patients.

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.

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.