In April 2006, Japan's health insurance system instituted a bundling policy that included recombi... more In April 2006, Japan's health insurance system instituted a bundling policy that included recombinant human erythropoietin (rHuEPO) in outpatient hemodialysis therapy. To evaluate outcomes of this, we analyzed a prospective cohort of hemodialysis patients in the Japan Dialysis Outcomes and Practice Patterns Study, in 53 facilities using prevalent cross-sections of 1584 patients before and 1622 patients after the rHuEPO reimbursement change. Patient data included hemoglobin levels, iron management profiles, and anemia treatment with rHuEPO and intravenous iron. No significant differences were found in pre-or post-policy cross-sections for hemoglobin distributions or the percentage of patients prescribed rHuEPO. Among patients receiving rHuEPO, the mean dose significantly decreased by 11.8 percent. The percentage of patients prescribed intravenous iron over 4 months significantly increased; however, the mean dose of iron did not significantly change. Thus, this bundling policy was associated with reduced rHuEPO doses, increased intravenous iron use, and stable hemoglobin levels in Japanese patients receiving hemodialysis.
Aims/hypothesis There are few data on the target level of glycaemic control among patients with d... more Aims/hypothesis There are few data on the target level of glycaemic control among patients with diabetes on haemodialysis. We investigated the impact of glycaemic control on mortality risk among diabetic patients on haemodialysis. Subjects and methods Data were analysed from the Dialysis Outcomes Practice Pattern Study (DOPPS) for randomly selected patients on haemodialysis in Japan. The diagnosis of diabetes at baseline and information on clinical events during follow-up were abstracted from the medical records. A Cox proportional hazards model was used to evaluate the association between presence or absence of diabetes, glycaemic control (HbA 1c quintiles) and mortality risk. Results Data from 1,569 patients with and 3,342 patients without diabetes on haemodialysis were analysed. Among patients on haemodialysis, those with diabetes had a higher mortality risk than those without (multivariable hazard ratio 1.37, 95% CI 1.08-1.74). Compared with those in the bottom quintile of HbA 1c level, the multivariable-adjusted hazard ratio for mortality was not increased in the bottom second to fourth quintiles of HbA 1c (HbA 1c 5.0-5.5% to 6.2-7.2%), but was significantly increased to 2.36 (95% CI 1.02-5.47) in the fifth quintile (HbA 1c ≥7.3%). The effect of poor glycaemic control did not statistically correlate with baseline mortality risk (p=0.27). Conclusions/interpretation Among dialysis patients, poorer glycaemic control in those with diabetes was associated with higher mortality risk. This suggests a strong effect of poor glycaemic control above an HbA 1c level of about 7.3% on mortality risk, and that this effect does not appear to be influenced by baseline comorbidity status.
Journal of the American Medical Informatics Association, Oct 12, 2021
The AUTHOR CONTRIBUTIONS statement also lacked details. This should read: "TV supervised the proj... more The AUTHOR CONTRIBUTIONS statement also lacked details. This should read: "TV supervised the project and study design, TV designed data collection instruments for the observations and individual interviews, and LH designed focus group data collection instruments. TV, LH, and MA collected data, and LH con-ducted first-cycle data analysis. ZH designed ideas for the application and developed the application. MAW and TV conducted the literature review, analyzed data, developed the theoretical framework, and drafted the manuscript and revisions. RS, MA, JBG, SLK, BG, and KZ provided input into design of the study, substantive review, and final approval." instead of "TV supervised the project and study design. MAW and TV conducted literature review, drafted the manuscript and revisions, analyzed data, and developed the theoretical framework. ZH designed ideas for the application and developed the application. TV and MA collected data. RS, MA, JBG, SLK, BG, and KZ contributed input into design of the study, substantive review, and final approval." These errors have now been corrected.
Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session... more Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. Results: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context
There was an error in the Appendix of the original article. The 'Questions or Items' text for 'Ro... more There was an error in the Appendix of the original article. The 'Questions or Items' text for 'Role emotional' was incorrect. The correct text is shown in the column on the right. Scale Questions or Items Role emotional During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of any emotional problems (such as feeling depressed or anxious)? Cut down on the amount of time you spent on work or other acitivities; Accomplished less than you would like; Didn't do work or other activities as carefully as usual. Possible responses: yes or no.
Background: Health-related quality of life (HRQOL), a validated system of measuring patients' phy... more Background: Health-related quality of life (HRQOL), a validated system of measuring patients' physical, mental, and social well-being, can be of particular use in populations with chronic conditions, such as end-stage renal disease (ESRD). Methods: The Dialysis Outcomes and Practice Patterns Study (DOPPS) has used the Kidney Disease Quality of Life Short Form (KDQOL-SF) to measure ESRD patients' self-assessment of functioning and well-being, as measured by 3 component scores: physical component summary (PCS, 4 subscales), mental component summary (4 subscales), and kidney disease component summary (11 subscales). Several DOPPS studies examined HRQOL's associations with mortality and hospitalization by country, ethnicity (United States only), and in comparison with serum albumin levels; international variations in HRQOL of ESRD patients were also evaluated. Results: Lower scores for all 3 summary scores were strongly associated with higher risk of death and hospitalization; these measures, especially PCS, may better identify patients at risk for death and hospitalization than serum albumin level. Japanese patients reported a greater burden of kidney disease but higher physical functioning than patients in Europe or the United States; many other significant regional differences in HRQOL were found. In the United States, all summary scores were significantly associated with mortality risk, regardless of ethnicity. Compared with whites, blacks had higher scores for all 3 summary scores, Asians and Hispanics had higher PCS scores, and Native Americans had lower mental component summary scores. Conclusion: Among ESRD patients, HRQOL displays an important predictive power for adverse events. Identifying effective interventions to improve the HRQOL of patients with ESRD should be viewed as a valued health care goal. Am J Kidney Dis 44(S2):S54-S60.
BACKGROUND End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, wi... more BACKGROUND End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, with most patients with ESKD receiving in-center hemodialysis treatment. This life-saving treatment can result in cardiovascular and hemodynamic instability, with the most common form being low blood pressure during the dialysis treatment (intradialytic hypotension [IDH]). IDH is a complication of hemodialysis that can involve symptoms such as fatigue, nausea, cramping, and loss of consciousness. IDH increases risks of cardiovascular disease and ultimately hospitalizations and mortality. Provider-level and patient-level decisions influence the occurrence of IDH; thus, IDH may be preventable in routine hemodialysis care. OBJECTIVE This study aims to evaluate the independent and comparative effectiveness of 2 interventions—one directed at hemodialysis providers and another for patients—in reducing the rate of IDH at hemodialysis facilities. In addition, the study will assess the effects of i...
Background Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session.... more Background Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)—low blood pressure during hemodialysis—is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing–based mentoring from patient peers via videoconferencing. Methods We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-alou...
Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session... more Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. Results: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context
Additional file 1: Supplementary materials. Cramping, Crashing, Cannulating, and Clotting: A Qual... more Additional file 1: Supplementary materials. Cramping, Crashing, Cannulating, and Clotting: A Qualitative Study of Patients' Definitions of a "Bad Run" on Hemodialysis: Study Instruments. Single file containing: (1) Patient Focus Group Discussion Guide; (2) Peer Mentor Focus Group Discussion Guide; (3) Survey for Patient and Peer Mentor Focus Group Participants; and (4) Patient Advocate Survey.
Objectives: To evaluate the measurement equivalence of the U.S. English and Malay versions of the... more Objectives: To evaluate the measurement equivalence of the U.S. English and Malay versions of the RAND 36-Item Health Survey 1.0 (SF-36v1). MethOds: A cross-sectional study design was utilized where health-related quality of life (HRQOL) for 315 Chronic Kidney Disease (CKD) patients was assessed using the SF-36v1 instrument. Both the Malay and U.S. English versions of the instrument were administered to 315 bilingual (Malay and English speakers) Malaysian CKD patients at Penang General Hospital, Penang, Malaysia. Reliability, test-retest and equivalent forms reliability tests were done for the eight scales of each of the two versions. To further assess equivalence, the mean scores of eight scales of the two versions were calculated and compared. Results: Of the 315 consenting participants, 72.4% were females and 27.60% were males. The mean age of participants was 65.8 ± 9.4 years. Majority (72.7%) of participants were Chinese, followed by Malay (21.9) and Indian participants (5.4%). The results supported the equivalence of the two versions through both items and scales comparisons. Cronbach's alpha for the Malay and U.S. English version was quiet similar with values around or slightly exceeding 0.7 in multiple measurements. Wilcoxon tests showed non-significant differences between the mean scores obtained from the two versions for each of its eight scales. cOnclusiOns: The U.S. English-and Malay-language versions of the RAND 36-Item Health Survey 1.0 (SF-36v1).demonstrated equivalence in bilingual Malaysian CKD patients. Our results suggest that the Malay and U.S. English versions can be used interchangeably in further studies for patients who speak either one of the two languages.
Kidney disease is a common, complex, costly and life-limiting condition. Most kidney disease regi... more Kidney disease is a common, complex, costly and life-limiting condition. Most kidney disease registries or information systems have been limited to single institutions or regions. A national United States Department of Veterans Affairs (VA) Renal Information System (VA-REINS) was recently developed. We describe its creation and present key initial findings related to CKD without kidney replacement therapy (KRT). Data from VA's Corporate Data Warehouse were processed and linked with national Medicare Data on CKD patients receiving KRT. Operational definitions for 'VA user', chronic kidney disease (CKD), acute kidney injury (AKI), and kidney failure were developed. Among seven million VA users in fiscal year 2014, CKD was identified using either a 'strict' or a 'liberal' operational definition, in 1.1 million (16.4%) and 2.5 million (36.3%) veterans, respectively. Most were identified using an eGFR laboratory phenotype, some via proteinuria assessment, and very few via ICD-9 coding. The VA spent approximately $18 billion for the care of patients with CKD without KRT, the majority of which was for CKD Stage 3, with higher per-patient costs by CKD stage. VA-REINS can be leveraged for disease surveillance, population health management, improving quality and value of care, thereby enhancing VA's capacity as a patient-centered learning health system for US veterans.
Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, 2019
Hemodialysis is life-saving therapy for end-stage renal disease; yet, 20% of hemodialysis session... more Hemodialysis is life-saving therapy for end-stage renal disease; yet, 20% of hemodialysis sessions are complicated by intradialytic hypotension ("IDH"). There is a need for approaches to preventing IDH that account for their implementation contexts. Using Activity Theory, we outline the design of a digital diagnostic checklist to identify patients at risk of IDH. Checklists were chosen a priori as an outcome due to prior evidence of effectiveness. Drawing on individual interviews with 20 clinicians and three focus groups with 17 patients, we describe four activity systems within hemodialysis care. We then outline a novel design process that includes co-design activities with clinicians, and four rapid-cycle iterations that progressively incorporated activity system elements into checklist design. We contribute a new type of checklist design to HCI: one that supports diagnostic thinking rather than consistent task completion. We further broaden checklist design by including a formal role for patients in checklist completion.
Journal of the American Medical Informatics Association, 2021
Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by in... more Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. Methods We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. Results Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients’ strength of character and resolve in all parts of their life; respects and supports patients’ individual needs, preferences, and choices; and links “feel...
Background. Hemodialysis (HD) patients have high unemployment rates associated with higher mortal... more Background. Hemodialysis (HD) patients have high unemployment rates associated with higher mortality and poor quality of life. Changes in employment status prior to dialysis initiation may predict subsequent patient outcomes. We sought to examine US national trends in employment status prior to and at HD initiation, risk factors for job loss and their association with transplantation and mortality. Methods. Employment was defined as working full-time or part-time for 496 989 patients initiating maintenance HD from 2006 to 2015. Associations between patient and dialysis facility characteristics and employment change were analyzed using multivariable logistic regression. Cox regression was used to assess job loss with mortality and transplantation. Results. About 26% (n ¼ 129 622) of patients were employed 6 months prior compared with 15% (n ¼ 75 719) at HD initiation. Employment rates 6 months prior to HD initiation decreased from 29% in 2006 to 23% in 2014. Employed patients who maintained employment increased from 57% in 2006 to 64% in 2015. Patients who were older, female, Hispanic, Black, with more comorbidities or living in low-income zip codes were less likely to maintain employment. Facility characteristics associated with employment maintenance included nonprofit status, more stations, dialysis availability after 5 p.m. and home dialysis training. Patients maintaining employment during the 6 months prior to HD had lower mortality and higher transplantation rates than patients who became unemployed. Conclusions. Employment rates among HD patients are low and employment changes common during the 6 months prior to HD. Maintaining employment status was associated with key patient and facility characteristics, kidney transplantation and survival.
Conclusions: Diabetes, low serum albumin, or fewer months on dialysis at randomization did not su... more Conclusions: Diabetes, low serum albumin, or fewer months on dialysis at randomization did not substantively increase the trend for better survival or fewer composite endpoints in patients assigned to high-vs. low-flux membranes. Grouping by centerdelivered ß2-M clearance also failed to improve the trend for a flux effect. These results appear to differ from analyses of the MPO study presented at ASN 2007 that suggested a greater benefit of high flux dialysis in patients with low serum albumin and/or diabetes.
Background. Mortality and hospitalization rates are reported for nationally representative random... more Background. Mortality and hospitalization rates are reported for nationally representative random samples of haemodialysis patients treated at randomly selected dialysis facilities in five European countries participating in the Dialysis Outcomes and Practice Pattern Study (DOPPS) (France, Germany, Italy, Spain and the UK). Results. In the UK, 28.1% of haemodialysis patients received prior peritoneal dialysis treatment compared with 4.2-8.3% in other countries. Kidney transplantation rates ranged from 3.3 (per 100 patient years) in Italy to 11.6 in Spain. The relative risk (RR) of mortality, adjusted for age, sex and diabetes status was significantly higher in the UK (RR ¼ 1.39, P ¼ 0.02) compared with Italy (reference) and increased in association with age (RR ¼ 1.60 for every 10 years older, P <0.001), diabetes as cause of end-stage renal disease (ESRD) (RR ¼ 1.55, P < 0.001), male patients <65 years (RR ¼ 1.29, P ¼ 0.02) and peritoneal dialysis in the 12 months prior to starting haemodialysis (RR ¼ 1.72, P ¼ 0.06). Hospitalization for cardiovascular disease was highest in France and Germany (0.40 and 0.43 hospitalizations per patient year, respectively) and lowest in the UK (0.19), although cardiovascular comorbidity was similar in the UK and France. Hospitalization rates for vascular access-related infection ranged from 0.01 hospitalizations per patient year in Italy to 0.08 in the UK, consistent with the higher dialysis catheter use in the UK (25%) vs Italy (5%). Hospitalization risk was significantly higher in France than in other Euro-DOPPS countries and was significantly (P < 0.05) associated with prior peritoneal dialysis therapy, peripheral vascular disease, gastrointestinal bleeding in the prior 12 months, diabetes, cancer, cardiac disease, psychiatric disease and recent onset of ESRD (within 30 days of study entry). Conclusions. The large differences in haemodialysis practice and outcomes in the Euro-DOPPS countries suggest opportunities for improvement in patient care.
Background. Haemodialysis patients were studied in 12 countries to identify practice patterns of ... more Background. Haemodialysis patients were studied in 12 countries to identify practice patterns of prescription of antihypertensive agents (AHA) associated with survival. Methods. The sample included 28 513 patients enrolled in DOPPS I and II. The classes of AHA studied were beta blocker (BB), angiotensin-converting enzyme inhibitor (ACEI), angiotensin receptor blocker (ARB), peripheral blocker, central antagonist, vasodilator, long-acting dihydropyridine calcium channel blocker (CCB), short-acting dihydropyridine CCB and non-dihydropyridine CCB. To reduce bias due to unmeasured confounders, the associations with mortality were assessed by separate Cox models based on patient-level prescription and facility prescription practice. Results. An increase in prescription of ARBs (9.5%) and BBs (9.1%) was observed from DOPPS I to II. Prescription of AHA classes varied significantly by country, ranging for BBs from 9.7% in Japan to 52.7% in Sweden and for ARBs from 5.5% in Italy to 21.3% in Japan in DOPPS II. Facilities that treated 10% more patients with ARBs had, on average, 7% lower all-cause mortality, independent of patient characteristics and the prescription patterns of other antihypertensive medications (P = 0.05). Significant and independent associations with reduction in cardiovascular mortality were observed for ARBs (RR = 0.79; P = 0.005) and BBs (RR = 0.87, P = 0.004) in analyses of patientlevel prescriptions. These associations in the facility-level model followed the same direction. Conclusions. DOPPS data show large variations across countries in AHA prescription for haemodialysis patients.
In April 2006, Japan's health insurance system instituted a bundling policy that included recombi... more In April 2006, Japan's health insurance system instituted a bundling policy that included recombinant human erythropoietin (rHuEPO) in outpatient hemodialysis therapy. To evaluate outcomes of this, we analyzed a prospective cohort of hemodialysis patients in the Japan Dialysis Outcomes and Practice Patterns Study, in 53 facilities using prevalent cross-sections of 1584 patients before and 1622 patients after the rHuEPO reimbursement change. Patient data included hemoglobin levels, iron management profiles, and anemia treatment with rHuEPO and intravenous iron. No significant differences were found in pre-or post-policy cross-sections for hemoglobin distributions or the percentage of patients prescribed rHuEPO. Among patients receiving rHuEPO, the mean dose significantly decreased by 11.8 percent. The percentage of patients prescribed intravenous iron over 4 months significantly increased; however, the mean dose of iron did not significantly change. Thus, this bundling policy was associated with reduced rHuEPO doses, increased intravenous iron use, and stable hemoglobin levels in Japanese patients receiving hemodialysis.
Aims/hypothesis There are few data on the target level of glycaemic control among patients with d... more Aims/hypothesis There are few data on the target level of glycaemic control among patients with diabetes on haemodialysis. We investigated the impact of glycaemic control on mortality risk among diabetic patients on haemodialysis. Subjects and methods Data were analysed from the Dialysis Outcomes Practice Pattern Study (DOPPS) for randomly selected patients on haemodialysis in Japan. The diagnosis of diabetes at baseline and information on clinical events during follow-up were abstracted from the medical records. A Cox proportional hazards model was used to evaluate the association between presence or absence of diabetes, glycaemic control (HbA 1c quintiles) and mortality risk. Results Data from 1,569 patients with and 3,342 patients without diabetes on haemodialysis were analysed. Among patients on haemodialysis, those with diabetes had a higher mortality risk than those without (multivariable hazard ratio 1.37, 95% CI 1.08-1.74). Compared with those in the bottom quintile of HbA 1c level, the multivariable-adjusted hazard ratio for mortality was not increased in the bottom second to fourth quintiles of HbA 1c (HbA 1c 5.0-5.5% to 6.2-7.2%), but was significantly increased to 2.36 (95% CI 1.02-5.47) in the fifth quintile (HbA 1c ≥7.3%). The effect of poor glycaemic control did not statistically correlate with baseline mortality risk (p=0.27). Conclusions/interpretation Among dialysis patients, poorer glycaemic control in those with diabetes was associated with higher mortality risk. This suggests a strong effect of poor glycaemic control above an HbA 1c level of about 7.3% on mortality risk, and that this effect does not appear to be influenced by baseline comorbidity status.
Journal of the American Medical Informatics Association, Oct 12, 2021
The AUTHOR CONTRIBUTIONS statement also lacked details. This should read: "TV supervised the proj... more The AUTHOR CONTRIBUTIONS statement also lacked details. This should read: "TV supervised the project and study design, TV designed data collection instruments for the observations and individual interviews, and LH designed focus group data collection instruments. TV, LH, and MA collected data, and LH con-ducted first-cycle data analysis. ZH designed ideas for the application and developed the application. MAW and TV conducted the literature review, analyzed data, developed the theoretical framework, and drafted the manuscript and revisions. RS, MA, JBG, SLK, BG, and KZ provided input into design of the study, substantive review, and final approval." instead of "TV supervised the project and study design. MAW and TV conducted literature review, drafted the manuscript and revisions, analyzed data, and developed the theoretical framework. ZH designed ideas for the application and developed the application. TV and MA collected data. RS, MA, JBG, SLK, BG, and KZ contributed input into design of the study, substantive review, and final approval." These errors have now been corrected.
Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session... more Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. Results: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context
There was an error in the Appendix of the original article. The 'Questions or Items' text for 'Ro... more There was an error in the Appendix of the original article. The 'Questions or Items' text for 'Role emotional' was incorrect. The correct text is shown in the column on the right. Scale Questions or Items Role emotional During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of any emotional problems (such as feeling depressed or anxious)? Cut down on the amount of time you spent on work or other acitivities; Accomplished less than you would like; Didn't do work or other activities as carefully as usual. Possible responses: yes or no.
Background: Health-related quality of life (HRQOL), a validated system of measuring patients' phy... more Background: Health-related quality of life (HRQOL), a validated system of measuring patients' physical, mental, and social well-being, can be of particular use in populations with chronic conditions, such as end-stage renal disease (ESRD). Methods: The Dialysis Outcomes and Practice Patterns Study (DOPPS) has used the Kidney Disease Quality of Life Short Form (KDQOL-SF) to measure ESRD patients' self-assessment of functioning and well-being, as measured by 3 component scores: physical component summary (PCS, 4 subscales), mental component summary (4 subscales), and kidney disease component summary (11 subscales). Several DOPPS studies examined HRQOL's associations with mortality and hospitalization by country, ethnicity (United States only), and in comparison with serum albumin levels; international variations in HRQOL of ESRD patients were also evaluated. Results: Lower scores for all 3 summary scores were strongly associated with higher risk of death and hospitalization; these measures, especially PCS, may better identify patients at risk for death and hospitalization than serum albumin level. Japanese patients reported a greater burden of kidney disease but higher physical functioning than patients in Europe or the United States; many other significant regional differences in HRQOL were found. In the United States, all summary scores were significantly associated with mortality risk, regardless of ethnicity. Compared with whites, blacks had higher scores for all 3 summary scores, Asians and Hispanics had higher PCS scores, and Native Americans had lower mental component summary scores. Conclusion: Among ESRD patients, HRQOL displays an important predictive power for adverse events. Identifying effective interventions to improve the HRQOL of patients with ESRD should be viewed as a valued health care goal. Am J Kidney Dis 44(S2):S54-S60.
BACKGROUND End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, wi... more BACKGROUND End-stage kidney disease (ESKD) is treated with dialysis or kidney transplantation, with most patients with ESKD receiving in-center hemodialysis treatment. This life-saving treatment can result in cardiovascular and hemodynamic instability, with the most common form being low blood pressure during the dialysis treatment (intradialytic hypotension [IDH]). IDH is a complication of hemodialysis that can involve symptoms such as fatigue, nausea, cramping, and loss of consciousness. IDH increases risks of cardiovascular disease and ultimately hospitalizations and mortality. Provider-level and patient-level decisions influence the occurrence of IDH; thus, IDH may be preventable in routine hemodialysis care. OBJECTIVE This study aims to evaluate the independent and comparative effectiveness of 2 interventions—one directed at hemodialysis providers and another for patients—in reducing the rate of IDH at hemodialysis facilities. In addition, the study will assess the effects of i...
Background Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session.... more Background Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)—low blood pressure during hemodialysis—is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing–based mentoring from patient peers via videoconferencing. Methods We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-alou...
Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session... more Background: Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)-low blood pressure during hemodialysis-is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective: This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing-based mentoring from patient peers via videoconferencing. We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. Results: Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context
Additional file 1: Supplementary materials. Cramping, Crashing, Cannulating, and Clotting: A Qual... more Additional file 1: Supplementary materials. Cramping, Crashing, Cannulating, and Clotting: A Qualitative Study of Patients' Definitions of a "Bad Run" on Hemodialysis: Study Instruments. Single file containing: (1) Patient Focus Group Discussion Guide; (2) Peer Mentor Focus Group Discussion Guide; (3) Survey for Patient and Peer Mentor Focus Group Participants; and (4) Patient Advocate Survey.
Objectives: To evaluate the measurement equivalence of the U.S. English and Malay versions of the... more Objectives: To evaluate the measurement equivalence of the U.S. English and Malay versions of the RAND 36-Item Health Survey 1.0 (SF-36v1). MethOds: A cross-sectional study design was utilized where health-related quality of life (HRQOL) for 315 Chronic Kidney Disease (CKD) patients was assessed using the SF-36v1 instrument. Both the Malay and U.S. English versions of the instrument were administered to 315 bilingual (Malay and English speakers) Malaysian CKD patients at Penang General Hospital, Penang, Malaysia. Reliability, test-retest and equivalent forms reliability tests were done for the eight scales of each of the two versions. To further assess equivalence, the mean scores of eight scales of the two versions were calculated and compared. Results: Of the 315 consenting participants, 72.4% were females and 27.60% were males. The mean age of participants was 65.8 ± 9.4 years. Majority (72.7%) of participants were Chinese, followed by Malay (21.9) and Indian participants (5.4%). The results supported the equivalence of the two versions through both items and scales comparisons. Cronbach's alpha for the Malay and U.S. English version was quiet similar with values around or slightly exceeding 0.7 in multiple measurements. Wilcoxon tests showed non-significant differences between the mean scores obtained from the two versions for each of its eight scales. cOnclusiOns: The U.S. English-and Malay-language versions of the RAND 36-Item Health Survey 1.0 (SF-36v1).demonstrated equivalence in bilingual Malaysian CKD patients. Our results suggest that the Malay and U.S. English versions can be used interchangeably in further studies for patients who speak either one of the two languages.
Kidney disease is a common, complex, costly and life-limiting condition. Most kidney disease regi... more Kidney disease is a common, complex, costly and life-limiting condition. Most kidney disease registries or information systems have been limited to single institutions or regions. A national United States Department of Veterans Affairs (VA) Renal Information System (VA-REINS) was recently developed. We describe its creation and present key initial findings related to CKD without kidney replacement therapy (KRT). Data from VA's Corporate Data Warehouse were processed and linked with national Medicare Data on CKD patients receiving KRT. Operational definitions for 'VA user', chronic kidney disease (CKD), acute kidney injury (AKI), and kidney failure were developed. Among seven million VA users in fiscal year 2014, CKD was identified using either a 'strict' or a 'liberal' operational definition, in 1.1 million (16.4%) and 2.5 million (36.3%) veterans, respectively. Most were identified using an eGFR laboratory phenotype, some via proteinuria assessment, and very few via ICD-9 coding. The VA spent approximately $18 billion for the care of patients with CKD without KRT, the majority of which was for CKD Stage 3, with higher per-patient costs by CKD stage. VA-REINS can be leveraged for disease surveillance, population health management, improving quality and value of care, thereby enhancing VA's capacity as a patient-centered learning health system for US veterans.
Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, 2019
Hemodialysis is life-saving therapy for end-stage renal disease; yet, 20% of hemodialysis session... more Hemodialysis is life-saving therapy for end-stage renal disease; yet, 20% of hemodialysis sessions are complicated by intradialytic hypotension ("IDH"). There is a need for approaches to preventing IDH that account for their implementation contexts. Using Activity Theory, we outline the design of a digital diagnostic checklist to identify patients at risk of IDH. Checklists were chosen a priori as an outcome due to prior evidence of effectiveness. Drawing on individual interviews with 20 clinicians and three focus groups with 17 patients, we describe four activity systems within hemodialysis care. We then outline a novel design process that includes co-design activities with clinicians, and four rapid-cycle iterations that progressively incorporated activity system elements into checklist design. We contribute a new type of checklist design to HCI: one that supports diagnostic thinking rather than consistent task completion. We further broaden checklist design by including a formal role for patients in checklist completion.
Journal of the American Medical Informatics Association, 2021
Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by in... more Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. Methods We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. Results Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients’ strength of character and resolve in all parts of their life; respects and supports patients’ individual needs, preferences, and choices; and links “feel...
Background. Hemodialysis (HD) patients have high unemployment rates associated with higher mortal... more Background. Hemodialysis (HD) patients have high unemployment rates associated with higher mortality and poor quality of life. Changes in employment status prior to dialysis initiation may predict subsequent patient outcomes. We sought to examine US national trends in employment status prior to and at HD initiation, risk factors for job loss and their association with transplantation and mortality. Methods. Employment was defined as working full-time or part-time for 496 989 patients initiating maintenance HD from 2006 to 2015. Associations between patient and dialysis facility characteristics and employment change were analyzed using multivariable logistic regression. Cox regression was used to assess job loss with mortality and transplantation. Results. About 26% (n ¼ 129 622) of patients were employed 6 months prior compared with 15% (n ¼ 75 719) at HD initiation. Employment rates 6 months prior to HD initiation decreased from 29% in 2006 to 23% in 2014. Employed patients who maintained employment increased from 57% in 2006 to 64% in 2015. Patients who were older, female, Hispanic, Black, with more comorbidities or living in low-income zip codes were less likely to maintain employment. Facility characteristics associated with employment maintenance included nonprofit status, more stations, dialysis availability after 5 p.m. and home dialysis training. Patients maintaining employment during the 6 months prior to HD had lower mortality and higher transplantation rates than patients who became unemployed. Conclusions. Employment rates among HD patients are low and employment changes common during the 6 months prior to HD. Maintaining employment status was associated with key patient and facility characteristics, kidney transplantation and survival.
Conclusions: Diabetes, low serum albumin, or fewer months on dialysis at randomization did not su... more Conclusions: Diabetes, low serum albumin, or fewer months on dialysis at randomization did not substantively increase the trend for better survival or fewer composite endpoints in patients assigned to high-vs. low-flux membranes. Grouping by centerdelivered ß2-M clearance also failed to improve the trend for a flux effect. These results appear to differ from analyses of the MPO study presented at ASN 2007 that suggested a greater benefit of high flux dialysis in patients with low serum albumin and/or diabetes.
Background. Mortality and hospitalization rates are reported for nationally representative random... more Background. Mortality and hospitalization rates are reported for nationally representative random samples of haemodialysis patients treated at randomly selected dialysis facilities in five European countries participating in the Dialysis Outcomes and Practice Pattern Study (DOPPS) (France, Germany, Italy, Spain and the UK). Results. In the UK, 28.1% of haemodialysis patients received prior peritoneal dialysis treatment compared with 4.2-8.3% in other countries. Kidney transplantation rates ranged from 3.3 (per 100 patient years) in Italy to 11.6 in Spain. The relative risk (RR) of mortality, adjusted for age, sex and diabetes status was significantly higher in the UK (RR ¼ 1.39, P ¼ 0.02) compared with Italy (reference) and increased in association with age (RR ¼ 1.60 for every 10 years older, P <0.001), diabetes as cause of end-stage renal disease (ESRD) (RR ¼ 1.55, P < 0.001), male patients <65 years (RR ¼ 1.29, P ¼ 0.02) and peritoneal dialysis in the 12 months prior to starting haemodialysis (RR ¼ 1.72, P ¼ 0.06). Hospitalization for cardiovascular disease was highest in France and Germany (0.40 and 0.43 hospitalizations per patient year, respectively) and lowest in the UK (0.19), although cardiovascular comorbidity was similar in the UK and France. Hospitalization rates for vascular access-related infection ranged from 0.01 hospitalizations per patient year in Italy to 0.08 in the UK, consistent with the higher dialysis catheter use in the UK (25%) vs Italy (5%). Hospitalization risk was significantly higher in France than in other Euro-DOPPS countries and was significantly (P < 0.05) associated with prior peritoneal dialysis therapy, peripheral vascular disease, gastrointestinal bleeding in the prior 12 months, diabetes, cancer, cardiac disease, psychiatric disease and recent onset of ESRD (within 30 days of study entry). Conclusions. The large differences in haemodialysis practice and outcomes in the Euro-DOPPS countries suggest opportunities for improvement in patient care.
Background. Haemodialysis patients were studied in 12 countries to identify practice patterns of ... more Background. Haemodialysis patients were studied in 12 countries to identify practice patterns of prescription of antihypertensive agents (AHA) associated with survival. Methods. The sample included 28 513 patients enrolled in DOPPS I and II. The classes of AHA studied were beta blocker (BB), angiotensin-converting enzyme inhibitor (ACEI), angiotensin receptor blocker (ARB), peripheral blocker, central antagonist, vasodilator, long-acting dihydropyridine calcium channel blocker (CCB), short-acting dihydropyridine CCB and non-dihydropyridine CCB. To reduce bias due to unmeasured confounders, the associations with mortality were assessed by separate Cox models based on patient-level prescription and facility prescription practice. Results. An increase in prescription of ARBs (9.5%) and BBs (9.1%) was observed from DOPPS I to II. Prescription of AHA classes varied significantly by country, ranging for BBs from 9.7% in Japan to 52.7% in Sweden and for ARBs from 5.5% in Italy to 21.3% in Japan in DOPPS II. Facilities that treated 10% more patients with ARBs had, on average, 7% lower all-cause mortality, independent of patient characteristics and the prescription patterns of other antihypertensive medications (P = 0.05). Significant and independent associations with reduction in cardiovascular mortality were observed for ARBs (RR = 0.79; P = 0.005) and BBs (RR = 0.87, P = 0.004) in analyses of patientlevel prescriptions. These associations in the facility-level model followed the same direction. Conclusions. DOPPS data show large variations across countries in AHA prescription for haemodialysis patients.
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Papers by Jennifer Bragg-Gresham