jurisdiction: US

text: b'Department of Health and Human Services\n\n OFFICE OF\n INSPECTOR GENERAL\n\n\n\n\n\xe2\x80\x9cKNOW YOUR N(JMBERrr BROCHURE\n\n EXPERIENCES OF DIALYSIS FACILITIES\n\x0c OFFICE OF INSPECTOR GENERAL\n\nThe mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, is to\nprotect the integrity cf the Department of Health and Human Services programs as well as the health\nand welfare of beneficiaries served by them. This statutory mission is carried out through a\nnationwide program of audits, investigations, evaluations, sanctions, and fraud alerts. The Inspector\nGeneral informs the Secretary of program and management problems and recommends legislative,\nregulatory, and operational approaches to correct them.\n\n\n\n\n OFFICE OF EVALUATION AND INSPECTIONS\n\nThe OIG\xe2\x80\x99S OffIce of Evaluation and Inspections (OEI) conducts short-term management and program\nevaluations (called inspections) that focus on issues of concern to the Department, the Congress, and\nthe public. The inspection reports provide findings and recommendations on the eftlciency,\nvulnerability, and effectiveness of departmental programs.\n\nOEI\xe2\x80\x99S Dallas Regional Office prepared this report under the direction of Chester B. Slaughter,\nRegional Inspector General.\n\nProject staff included:\n\n\n DALLAS REGION\n HEADQUARTERS\n Michelle Adarns, Ph.D.\n Mary Beth Clarke\n Ruth Ann Dorrill\n Brian Ritchie\n Karen Erickson, Intern\n Barbara Tedesco\n Sarah Taylor\n\n Judy Tyler\n\n Nancy Watts\n\n\n\nFor additional copies of this report, please contact the Dallas Regional Office at (800) 848-8960.\n\x0cDepartment of Health and Human Services\n\n OFFICE OF\n INSPECTOR GENERAL\n\n\n\n\n\xe2\x80\x9cKNOW YOUR\n NUMBER\xe2\x80\x9d BROCHURE\n\n\n EXPERIENCES OF DIALYSIS FACILITIES\n\n\n\n\n +W \xe2\x80\x98-i\n $* JUNE GIBBS BROWN\n ~ Inspector General\n x\n \xe2\x80\x98b ~\n %++\n 4+~xG JANUARY 1997\n -2\n OEI-06-95-O0321\n\x0c EXECUTIVE SUMMARY\n\nPURPOSE\n\nThis study describes the experiences of renal dialysis facilities in using the Health Care\nFinancing Administration\xe2\x80\x99s (HCFA) \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure to educate end stage\nrenal disease (ESRD) patients on how to monitor the adequacy of their dialysis treatment.\n\nBACKGROUND AND METHODOLOGY\n\nBy Medicare\xe2\x80\x99s definition, ESRD is \xe2\x80\x9cthat stage of renal impairment that appears irreversible\nand permanent, and requires a regular course of dialysis or kidney transplantation to maintain\nlife. \xe2\x80\x9d Concern has grown over the adequacy of hemodialysis with the recent release of the\nEMU.1 Core Indicators Workgroup\xe2\x80\x99s report, conducted as part of HCFA\xe2\x80\x99s and the 18\ncontracting ESRD Network Organization\xe2\x80\x99s quality assurance and continuous improvement\nefforts. This report found that only 43 percent of patients were receiving adequate\nhemodialysis.\n\nThe ESRD brochure \xe2\x80\x9cKnow Your Number\xe2\x80\x9d was developed out of this concern. It\xe2\x80\x99s purpose\nis to educate the approximately 156,000 in-center hemodialysis patients so they may better\ndetermine the adequacy of their treatment and become more proactive in the treatment\nprocess. To ascertain the experience with and obtain the perspectives of facilities\xe2\x80\x99 staff\nregarding the brochure, we randomly surveyed 132 facilities treating hemodialysis patients.\n\nFINDINGS\n\nFacilities who received the brochure overwhelmingly reported the brochure includes useful\ninformation and most said it is somewhat or very easy for patients to understand. These\nfacilities said the brochure allows staff to help patients become actively involved in their own\ndialysis, encourages patient compliance with their recommended treatment, and its\xe2\x80\x99 content is\nsometimes being used or will be used in facilities\xe2\x80\x99 educational outreach materials.\n\nHowever, 22 percent of facilities reported ~t receiving the brochure. Some who got it,\ndidn\xe2\x80\x99t fully disseminate it to patients. Furthermore, we found 21 percent of facilities do ~t\ncalculate patients\xe2\x80\x99 URR or KT/V numbers on a monthly basis. Facilities calculating these\nnumbers on a monthly basis were much more likely to also distribute the brochure and have\npatients who participate more proactively in their dialysis. This finding clearly highlights an\nimportant interaction between facility practice and the effectiveness of the brochure.\n\n\n\n\n i\n\x0cDISSEMINATION\n\nSeventy six percent of facilities repotied receiving the brochure, 22 percent said they did\nnot. All but 13 percent of receiving facilities distributed the brochure, half to every patient\nand half to an average of 69 percent of their p~\xe2\x80\x9dents. Brochures were frequently (74\npercent) personally handed to pti\xe2\x80\x9dents, ofien accompanied by an explanation from a\nregistered nurse (84 percent).\n\nFacilities @ fully distributing the brochure said many patients wouldn\xe2\x80\x99t understand the\nbrochure\xe2\x80\x99s content or they didn\xe2\x80\x99t receive enough brochures to distribute it more extensively,\nFacilities distributing the brochure most commonly handed the brochure to patients and/or\nplaced it somewhere accessible in their facilities.\n\nRegistered nurses provided the majority of brochure explanations, with almost all facilities\nsaying at least half or more of their patients appeared alert during their explanations.\n\nBROCHURE\xe2\x80\x99S EFFECTIVENESS\n\nSeventy-two percent of facilities rated the brochure\xe2\x80\x99s effectiveness as a patient educti\xe2\x80\x9donal\ntool as either excellent or good, and 66 percent said the brochure was somewhat, or very,\neasy for their pti\xe2\x80\x9dents to understand.\n\nForty-six percent of facilities reported most or all of their patients wanted to know their own\nURR or KT/V number after receiving the brochure, and 47 percent said half or more of their\npatients asked questions about the brochure\xe2\x80\x99s content.\n\nAlmost all facilities (98 percent) said patients need to know the information in the brochure.\nEighty-two percent said a brochure was an appropriate method for communicating this\ninformation.\n\nDIALYSIS ADEOUACY\n\nFacilities sazii at least 50 percent of their patients are interested in the adequacy of their\ndhzlysis, with 29 percent tnzcking their numbem month-to-month.\n\nClearly, the brochure\xe2\x80\x99s effectiveness cannot be assessed without considering facilities\xe2\x80\x99\npractices, and in the process of conducting our study, we found not all facilities calculate\ndialysis adequacy measures on a monthly basis or routinely share them with their patients.\n\nOnly 77 percent of facilities calcukhte p~\xe2\x80\x9dents\xe2\x80\x99 numbers at least monthly, with 21 percent\ndoing this only quatierly. Futiher, only 53 percent of facilities ~\xe2\x80\x9cve pti\xe2\x80\x9dents their numbens\nall the time; many do so far less, 16 percent do this less than half the time.\n\nFacilities who give patients their numbers monthly, or more often, were much more likely to\nhave distributed the brochure to every patient and to have patients who track their numbers.\n\x0cRECOMMENDATIONS\n\nOverall, we found the brochure has the potential to serve as an effective part of a broader\n\nstrategy of improving patients\xe2\x80\x99 understanding of adequate dialysis and enlisting their support\n\nin monitoring the adequacy of their dialysis. The \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure was given\n\na positive assessment by facilities receiving it. However, the brochure was not received by\n\nall facilities nor was it fully distributed or explained to all patients by all receiving facilities.\n\n\nIt seems clear that the brochure\xe2\x80\x99s effectiveness in educating patients and involving them in\n\nmonitoring dialysis still is heavily dependent upon facility practices and the quality of staff-\n\npatient relationships.\n\n\nBased on our findings, we recommend that HCFA take the following actions to improve\n\nkidney dialysis:\n\n\nDISSEMINATION. Assure all facilities receive an ample supply of brochures and\n\nencoumge them to distribute a brochure to every patient. HCFA might also consider\n\nproviding guidelines to facilities on effective dissemination approaches.\n\n\nBROCHURE CONTENT & FORMAT. Simplify the language and concepts as much as\n\npossible in any subsequent or revised patient brochures. Consideration might be given to\n\ndeveloping alternate versions of the brochure for different reading levels, and to adding\n\ngreater use of color and graphics to gain interest and promote patient understanding.\n\n\nCONTINUING PATIENT EDUCATION. Encourage continuing efforts by facilities to\n\neducate patients and to reinforce the importance of patient understanding and monitoring of\n\nthe adequacy of their dialysis. A training video to introduce and/or reinforce the brochure\n\nconcepts might also prove effective, based on the suggestions and experiences of some\n\nfacilities.\n\n\nUSE OF ADEQUACY MEASURES. Encourage facilities to calculate dialysis adequacy\n\nmeasures on a monthly basis and to share these numbers with patients on a regular basis, in\n\norder for the brochure to achieve its intended impact on patients and facilities.\n\n\nAdditional OffIce of InsmXtor General Work\n\n\nA companion report by the Inspector General\xe2\x80\x99s office (OEI-06-95-O0320) provides\n\ninformation about perspectives of dialysis patients regarding the \xe2\x80\x9cKnow Your Number\xe2\x80\x9d\n\nbrochure. The report describes how successful the brochure was in increasing patient\n\nawareness of information about adequate dialysis, how it is measured, how patients know if\n\nthey have achieved it, and what they can do to improve their dialysis. Additionally, it\n\nhighlights how the brochure has helped enhance the dialogue between facilities and patients\n\nabout adequate dialysis and the use of URR or KT/V numbers to monitor adequacy of\n\ndialysis treatment. The report also addresses problems with brochure dissemination, lack of\n\npatient familiarity with dialysis tests used by their facility and with target numbers indicating\n\ndialysis adequacy, even among patients receiving the brochure.\n\n\n\n .. .\n m\n\x0cAGENCY COMMENTS\n\nThe Health Care Financing Administration (HCFA) concurred with all the report\xe2\x80\x99s\nrecommendations. We appreciate their responsiveness to our proposals. However, we have\na new concern that has arisen since we issued our draft report.\n\nWe originally recommended that HCFA encourage facilities to calculate dialysis adequacy\nmonthly and share these numbers with patients on a regular basis. HCFA informed us that\nthey had no requirement for facilities to measure the adequacy of dialysis at prescribed\nintervals but that their revised ESRD Conditions for Coverage will require facilities to\ncalculate the adequacy of dialysis quarterly. This is in marked constrast to the upcoming\nNational Kidney Foundation\xe2\x80\x99s Dial ysis Outcome Quality Initiative guidelines which\nrecommend a standard practice guideline of a monthly URR or KT/V calculation, not\nquarterly calculations. We are concerned that facilities will interpret HCFA\xe2\x80\x99S Conditions for\nCoverage as the acceptable standard and conduct adequacy testing on] y quarterly.\n\nIn our view, this could pose a severe health risk for ESRD patients whose dialysis could go\nthree months before needed corrections could be made to their treatment. We are convinced\nthat facilities should be required to calculate adequacy numbers monthly and we urge HCFA\nto reconsider \xe2\x80\x98or amend the Conditions for Coverage accordingly.\n\n\n\n\n iv\n\x0c 4\n\n\n\n\n TABLE OF CONTENTS\n\n PAGE\n\nEXECUTIVE SUMMARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1\n\n\nINTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1\n\n\nFINDINGS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4\n\n\n Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ,4\n\n\n Dissemination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4\n\n\n Brochure\xe2\x80\x99s Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ,8\n\n\n Dialysis Adequacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14\n\n\nRECOMMENDATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19\n\n\nAGENCY COMMENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20\n\n\nENDNOTES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21\n\n\nAPPENDICES\n\n\nA: Profiles: Respondent Facility Information and Patient Demographics . . . . . . . A-1\n\n\nB: Confidence Intervals and Tests for Significance . . . . . . . . . . . . . . . . . . . . . B-1\n\n\nC: Text ofAgency Comments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .C-l\n\x0c INTRODUCTION\n\nPURPOSE\n\nThis study describes the experiences of renal dialysis facilities in using the Health Care\nFinancing Administration\xe2\x80\x99s (HCFA) \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure to educate end stage\nrenal disease (EM?D) patients on how to monitor the adequacy of their dialysis treatment.\n\nBACKGROUND\n\nBy Medicare\xe2\x80\x99s definition, ESRD is \xe2\x80\x9cthat stage of renal impairment that appears irreversible\n\nand permanent, and requires a regular course of dialysis or kidney transplantation to maintain\n\nlife.\xe2\x80\x9d\xe2\x80\x99 Although some Americans with chronic kidney failure receive kidney transplants, the\n\nmajority receive either hemodialysis or peritoneal dialysis treatment.\xe2\x80\x9d3 Over 186,000 ESRD\n\npatients currently receive some form of dialysis therapy in the United States. Although\n\ndialysis is expensive and is not a cure, the treatments can greatly prolong an ESRD patient\xe2\x80\x99s\n\nlife.\n\n\nAs a result of the Social Security Amendments of 1972 (P.L. 92-603), ESRD patients may\n\nqualify for Medicare under the renal disease provision which pays for 80 percent of the cost\n\nof the treatment no matter how old they are. To qualify for Medicare a person must: 1)\n\nhave worked long enough to be insured under the Social Security program, or be the\n\nspouse/child of someone who has; or 2) already be receiving Social Security benefits. If a\n\nperson isn\xe2\x80\x99t eligible for Medicare, they may qualify for Medicaid if their income is below a\n\ncertain level.\n\n\nTo conduct oversight activities assuring the appropriateness of services for ESRD patients,\n\nCongress passed the ESRD Amendments of 1978 (P.L. 95-292) authorizing the establishment\n\nof ESRD Network Organizations. Currently, the Health Care Finance Administration\n\ncontracts with 18 ESRD Network Organizations throughout the United States. In striving for\n\nquality assurance and continuous improvement, the ESRD Networks, together with HCFA\n\nand the renal community, worked to implement the ESRD Health Care Quality Improvement\n\nProgram. This program allows the ESRD Networks and HCFA to track improvements in\n\nhealth care provided to renal Medicare beneficiaries through the development of quaMy\n\nindicators.\n\n\nESRD Core Indicators Proiect\n\n\nIn 1994 the IZSRD Health Care Quality Improvement Program conducted the\n\nNational/Network ESRD Core Indicators Project to assist providers of ESRD services in\n\nassessing and improving the care provided to ESRD patients. The fwst phase of this project\n\ntargeted adult in-center hemodialysis patients receiving care in the last quarter of 1993. The\n\nproject\xe2\x80\x99s focus was on establishing a consistent clinical database of key components of care.\n\nSuch clinical measures included the determination of the adequacy of dialysis using the pre-\n\nand post-dialysis blood urea nitrogen (BUN) levels to calculate the urea reduction ratios\n\n\n\n 1\n\x0c(uRR).4 Baseline estimates were then used to identify opportunities for improvement in\nESRD care across the United States.\n\n\nThe project\xe2\x80\x99s data was compared to standard medical levels of adequate hemodialysis\ndeveloped by the Renal Physicians Association and a National Institute of Health (NIH)\nConsensus Development Conference Panel (URR >0.65 or KT/V > 1.2) .5\xe2\x80\x996\xe2\x80\x997Only 43\npercent of the study\xe2\x80\x99s patients met these new standards, with significant differences existing\nby gender, race, age, and region. The percent of patients in particular Network areas who\nreceived adequate hemodialysis ranged from 29 to 57 percent, accounting for differences by\nrace and gender.\n\nThe ESRD Core Indicators Workgroup produced a report in late 1994, along with an analysis\nof the project\xe2\x80\x99s results, and is currently conducting an evaluation of the impact of the Health\nCare Quality Improvement Program on patient care and outcomes. Networks will also\nprepare summary reports of their intervention and follow-up activities on an annual basis.\n\nEM?D Brochure\n\nThe ESRD brochure \xe2\x80\x9cKnow Your Number\xe2\x80\x9d was developed out of concern for the large\npercent of hemodialysis patients not receiving adequate treatment. With the development of\na consensus medical standard for adequate hemodialysis, patients now have a benchmark\nagainst which to compare their own test results.\n\nThe brochure\xe2\x80\x99s purpose is to educate the approximately 156,000 in-center hemodialysis\npatients so they may better determine the adequacy of their treatment and become more\nproactive in the treatment process. The brochure focuses on heightening patients\xe2\x80\x99 awareness\nof the following: 1) there is a recommended level of dialysis associated with a number; 2)\nwhy achieving this level is important; and 3) how patients would know if the recommended\nlevel of dialysis was achieved. The brochure also seeks to inform patients on what they can\ndo to track and improve their dialysis test results.\n\nA total of 350,000 brochures were initially printed in English, with an additional 50,000\nbrochures printed in Spanish for a later distribution. The brochures were sent directly to\napproximately 2,500 dialysis facilities for dissemination to ESRD patients. Distribution of\nthe brochure to patients at the facility-level is intended to improve communication between\nproviders and patients, in addition to increasing patients\xe2\x80\x99 understanding of their treatment and\nprogress.\n\nSCOPE\n\nSince the goal of the EXD \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure is to increase patient awareness\nabout the adequacy of their dialysis, this study examined whether patients received the\nbrochure and understood its content and also facilities\xe2\x80\x99 experience in using the brochure. In\naddition, we determined how brochures were disseminated and the extent of interaction\nbetween patients and providers as a result of the brochure\xe2\x80\x99s distribution. We did not aim to\n\n\n 2\n\n\x0cmeasure any broad-based behavior changes by patients resulting from the brochure due to the\ndifficulty of making such causal inferences.\n\nMETHODOLOGY\n\nSample selection\n\nUsing the HCFA\xe2\x80\x99s Medical Information System (PMMIS) database, we used simple random\nsampling to obtain two separate samples of 800 hemodialysis patients each in late October\n1995 and mid-February 1996, testing both early and later dissemination of the brochure.\nThe findings from this survey will be included in a separate OIG report (OEI-06-95-00321 ).\n\nUsing HCFA\xe2\x80\x99s Online Survey Certification and Reporting System (OSCAR) and Medical\nInformation System (PMMIS) databases, we used simple random sampling to obtain a sample\nof 150 dialysis facilities in operation prior to October 1995. We surveyed the 132 facilities\nwith hemodialysis patients in April 1996. Our response rate for this sample was 86 percent,\nwith 113 facilities responding to our survey. Four additional completed surveys came in\nseveral months after the survey deadline and were not analyzed for this report.\n\nAn analysis of non-respondents versus respondents, based on key facility characteristics, such\nas ownership type, location of facility, number of hemodialysis stations, and the number of\nyears with Medicaid/Medicare certification, showed no differences between the two groups.\n\nA profile of responding facilities and facility staff completing our survey is provided in\nAppendix A. Confidence intervals for specific frequency estimates are provided in\nAppendix B.\n\nThis inspection was conducted in accordance with the Quality Standards for Inspections\nissued by the President\xe2\x80\x99s Council on Integrity and Efficiency.\n\n\n\n\n 3\n\n\x0c FINDINGS\n\n\nFacilities who received the brochure overwhelmingly reported the brochure includes useful\ninformation, and most said it is somewhat, or very, easy for patients to understand. These\nfacilities said the brochure allows staff to help patients become actively involved in their own\ndialysis, encourages dialysis time compliance among patients, and its\xe2\x80\x99 content is sometimes\nbeing used, or will be used, in facilities\xe2\x80\x99 educational outreach materials.\n\nHowever, 22 percent of facilities reported ~t receiving the brochure. Some who got it,\ndidn\xe2\x80\x99t fully disseminate it to patients. Furthermore, we found 21 percent of facilities do ~t\ncalculate patients\xe2\x80\x99 URR or KT/V numbers on a monthly basis. Facilities calculating these\nadequacy numbers on a monthly basis, were much more likely to also distribute the brochure\nand have patients who participate more proactively in their dialysis. This finding clearly\nhighlights that there is an important interaction between facility practice and the effectiveness\nof the brochure.\n\nDISSEMINATION\n\n Seventy six percent of facilities repotied receiving the brochure, allhough 22 percent said\n they did not. All but 13 percent of receiving facilities distributed the brochure, half to\n every pah\xe2\x80\x9dent and half to an average of 69 percent of their palients. Brochures were\n@equently (74 percent) personally handed to p~\xe2\x80\x9dents, often accompanied by an explan~\xe2\x80\x9don\nfrom a registered nurse (84 percent).\n\nA large majority (76 percent) of facilities reported receiving the brochure, while 22 percent\nsaid they did not receive it and another two percent did not remember receiving it. There\nwere significant differences in facilities receiving the brochure based on facility location and\ntype. Ninety-three percent of rural facilities reported receiving the brochure compared to\nonly 81 and 64 percent of suburban and urban facilities (see table 1).\n\n\n\n Table 1: FACILITIES RECEIVING BROCHURE\n by location of facility\n\n Urban area Suburban area Rural area\n\n Yes 64% 81% 93%\n (30) (25) (28)\n\n No/Didn\xe2\x80\x99t 36% 19%\n Remember (17) (6) (7;\n\n\n\n\n 4\n\n\x0cAdditionally, facilities attached to hospitals were more likely (88 vs. 72 percent) to have\nreceived the brochure than free-standing facilities (see table 2). However, there were no\ndifferences in the brochure\xe2\x80\x99s distribution based on the size of the facility or the number of\npatients treated.\n\n\n\n Table 2: FACILITIES RECEIVING BROCHURE\n by type of facility\n\n Free-standing Attached to hospital\n\n Yes 72% 88%\n (54) (30)\n\n No/Didn\xe2\x80\x99t 28% 12%\n Remember (21) (4)\n\n\n\nThe head nurse and/or dialysis facility administrator most commonly determined whether the\nbrochure would be disseminated to patients. Fifty-nine percent of head nurses and 25\npercent of dialysis facility administrators determined whether the brochure would be\ndistributed. Additionally, 17 percent of medical directors, along with nine percent of both\ndietitians and social workers, determined the brochure\xe2\x80\x99s dissemination.\n\n Most facilities hunded the brochure to patients and/or placed it somewhere accessible in their\nfacility.\n\nSeventy-four percent of facilities said they personally handed the brochure to patients, and 13\npercent gave it to family members or a signiilcant other. Although 47 percent of facilities\nreported placing the brochure somewhere accessible in the facility, only seven facilities relied\nexclusively on this method of dissemination. Brochures were most commonly placed in the\npatient waiting room or lobby area, and/or placed on the patient bulletin board. Twelve\nfacilities used several of the above methods of distributing the brochure, three facilities let\nthe staff decide how it would be distributed, and one facility translated it into Spariish first.\n\ni%irteen percent of facilities did Et distribute the brochure for a variety of reasons.\n\nOf the thirteen percent of facilities (11 facilities) not distributing the brochure, two facilities\ndidn\xe2\x80\x99t do so because they were either not calculating URR numbers at the time or were\nchanging the measure of adequacy reported to patients. Another three facilities mentioned\nplanning to distribute the brochure in the future. One facility reported not receiving enough\ncopies of the brochure, one needed the Spanish version of the brochure, two facilities were\nstill evaluating the brochure, and two facilities reported having tb.eir own \xe2\x80\x9creport card\xe2\x80\x9d or\nmethod of reporting URR or KT/V numbers to patients.\n\n\n\n\n 5\n\n\x0cHay of the facilities reported distributing the brochure to every patient, while the other half\nsaid they distributed it to an average of 69 percent of patients.\n\nFacilities were split evenly on whether they distributed the brochure to every patient or to\nonly a portion of patients. Facilities not distributing the brochure to every patient, reported\ndistributing it to an average of 69 percent of their patients. The modal distribution of the\nbrochure was 78 percent of patients with a median distribution of 75 percent.\n\nIn two separate patient surveys reported in a companion OIG report (OEI-06-95-O0320), only\none-third of patients reported receiving the brochure. The discrepancy between the number\nof facilities receiving the brochure (76 percent) and the much lower number of patients\nsaying they received- the brochure could be explained, at least in part, by the fact that half of\nthe facilities surveyed did not distribute the brochure to every patient.\n\nFor-profit facilities were almost three times as likely (74 vs. 26 percent) to distribute the\nbrochure to every patient compared to non-profit or government-owned facilities (see table\n3). There were significant differences in brochure distribution based on the type of facility\nadministration. Hospital administered facilities were much less likely (18 vs. 82 percent) to\ndistribute the brochure to every patient, compared to non-hospital administered facilities. 8\n\n\n\n Table 3: FACILITIES OWNERSHIP STATUS: PROFIT OR NON-PROFIT/GOVERNMENT\n by distribution of brochure\n\n Distributed to Dktributed to Brochure not\n every patient some patients distributed\n\n Facility ownership\n\n Non-profit/Government 26% 48% 73%\n (lo) (14) (8)\n\n For-profit 74% 52% 27%\n (28) (15) (3)\n\n Facilitv administration\n\n Hospital administered 18% 38% 45%\n (7) (11) (5)\n\n Non-hospital administered 82% 62% 55%\n (31) (18) (6)\n\n\n\nAmong facilities not distributing the brochure to every patient, the most commonly reported\nreasons were: 1) their belief that many patients wouldn\xe2\x80\x99t understand the brcchure\xe2\x80\x99s content\n(54 percent), and 2) they did not receive enough brochures to give one to every patient (37\npercent). Time constraints prevented the distribution of the brochure to every patient\naccording to five facilities, while four facilities said they didn\xe2\x80\x99t distribute it because they\nused other education materials instead. Other facilities not distributing brochures to each\n\n\n\n 6\n\n\x0cpatient reported the brochures were placed in the waiting area, they had already discussed the\nmaterial with patients, or said disseminating the brochure was not a staff priority.\n\nEighty-four percent of facilities reported they personally expkzined the brochure to patients,\nwith registered nurses providing the majon\xe2\x80\x9dty of these explanations.\n\nMost facilities (84 percent) reported their staff personally explained the brochure to patients.\n\nEighty percent of facilities said registered nurses provided these explanations. Thirty percent\n\nof dietitians, 18 percent of licensed vocational nurses (LVNS), and 17 percent of social\n\nworkers in facilities also provided such explanations. Fifteen percent of doctors and 12\n\npercent of technicians also provided explanations of the brochure to patients. Although\n\nseveral staff members might have provided these explanations, RNs had the greatest\n\nresponsibility.\n\n\nFacilities reported patients were usually alert but didn\xe2\x80\x99t always ask questions or didn\xe2\x80\x99t appear\n\nto understand staff explanations of the brochure. Almost all facilities (97 percent) said at\n\nleast half or more of their patients appeared alert during their explanations. However, only\n\n67 percent of facilities reported patients asked questions during these staff explanations, of\n\nwhich, 34 percent said only half of patients did so, and 33 percent said only a few.\n\n\nIn our patient surveys (OEI-06-95-O0321), only 49 percent of patients from our first sample,\n\nand 42 percent from our second sample, remembered receiving an explanation of the\n\nbrochure\xe2\x80\x99s content, although 84 percent of facilities reported giving explanations of the\n\nbrochure to patients. This discrepancy suggests some patients may not have actively listened\n\nto the explanation, or the explanation may have been cursory or low key, and thus\n\nforgettable.\n\n\nSeventy-three percent of facilities said a few patients didn\xe2\x80\x99t appear to understand the\n\nexplanation, while another nine percent said most, or about half, of patients didn \xe2\x80\x98t\n\nunderstand.\n\n\nThe majority of patients, reportedly, were listening during staff explanations, with only 59\n\npercent of facilities saying a few patients weren\xe2\x80\x99t listening. Seven facilities reported a few or\n\nmore patients slept through the staff explanation. Additionally, 87 percent of facilities\n\nreported no patients objected to having the information explained to them, while only three\n\nfacilities said that about half or more of their patients objected to such an explanation.\n\n\nFacilities with at least 50 percent of their patients interested in finding out about how\n\nadequate their dialysis is were also significantly more likely to explain the brochure to\n\npatients. Ninety-two percent of facilities with over half of their patients interested in their\n\nadequacy information also explained the brochure, compared to 77 percent of facilities with\n\nfewer than half of their patients interested in adequacy information.\n\n\n\n\n\n 7\n\n\x0cBROCHURE\xe2\x80\x99S EFFECTIVENESS\n\nSeventy-two percent of facilities rated the brochure\xe2\x80\x99s effectiveness as a pti\xe2\x80\x9dent educm\xe2\x80\x9donal\ntool as either excellent or good, and 66 percent said the brochure was somewhat, or very,\neasy for their p~\xe2\x80\x9dents to understand. Almost all facilities (98 percent) said pti\xe2\x80\x9dents need to\nknow the informti\xe2\x80\x9don in the brochure, and 82 percent considered a brochure to be an\napproptie method for communicating d to patients.\n\nFacilities\xe2\x80\x99 ratinm of brochure\xe2\x80\x99s effectiveness.\n\n\nTwenty-one percent of facilities rated the brochure\xe2\x80\x99s overall effectiveness in educating\n\npatients as excellent, and another 51 percent rated it as good. Twenty-four percent of\n\nfacilities felt the brochure did a fair job of achieving this goal, while only two facilities rated\n\nthe effectiveness of the brochure in educating patients as poor or very poor.\n\n\nTypical comments from facilities judging the brochure\xe2\x80\x99s effectiveness as excellent or good\n\ninclude the following: 1) \xe2\x80\x9c(It) was easy to understand with excellent and direct information;\xe2\x80\x9d\n\n2)\t \xe2\x80\x9cMakes the patient and family aware of the need for adequate dialysis;\xe2\x80\x9d 3) \xe2\x80\x9cIt was a good\nintroduction to this topic and assisted staff in presenting information;\xe2\x80\x9d and 4) \xe2\x80\x9cQuick self-\nlearning and backed up with concept we try to sell to patients. \xe2\x80\x9d\n\nA sampling of comments from facilities finding the brochure much less effective for\neducating patients listed several concerns: 1) \xe2\x80\x9cDoesn\xe2\x80\x99t address 24 week therapy, diabetes,\nresidual function...;\xe2\x80\x9d 2) \xe2\x80\x9cThe patients who most need information are the same ones who\nstruggle to understand...;\xe2\x80\x9d 3) \xe2\x80\x9cOnly some patients are interested;\xe2\x80\x9d 4) \xe2\x80\x9cLanguage is too\nsophisticated for most of our patients; 5) \xe2\x80\x9cMainly due to mismanaged distribution methods;\xe2\x80\x9d\nand 6) \xe2\x80\x9cPatients receive so much written material already, they don\xe2\x80\x99t pay attention... \xe2\x80\x9d\n\nFacilities rating the brochure as excellent for educating patients were much more likely to\nreport more of their patients were interested in adequate dialysis. For example, facilities\nrating the brochure as excellent reported 75 percent of their patients were interested in\nadequate dialysis. In contrast, facilities who did not give the brochure an excellent rating\nreported only 52 percent of their patients were interested in adequate dialysis (see table 4).\n\n\n\n Table 4: PERCENT OF PATIENTS REPORTED INTERESTED IN ADEQUATE DIALYSIS\n by facilities rating the brochure as excellent\n\n Facility rated brochure as excellent Average percent of patients interested in adequate dialysis\n\n Yes I 75%\n\n No 52%\n I\n\nAdditionally, facilities rating the brochure as excellent in educating patients reported almost\n1.5 times more of their patients track their URR or KT/V numbers from month to month\n(see table 5).\n\n\n\n 8\n\n\x0c Table 5: PERCENT OF PATIENTS IN FACILITIES REPORTED\n TRACKING THEIR URR OR KT/V NUMBER MONTH TO MONTH\n by facilities rating the brochure as excellent\n I\n Average percent of patients\n Facility rated brochure as excellent tracking number\n\n Yes I 40%\n\nII No I 27%\n\n\n\nFacilities also were more likely to rate the brochure as excellent if their patients had been\nundergoing dialysis for a longer period of time (see table 6).\n\n\n\n Table 6: AVERAGE MONTHS PATIENTS ON DIALYSIS PER FACILITY\n by facility rating of brochure\n\n Facility rated brochure as excellent Average months patients on dialysis\n\n Yes 55\n\n No 41\n\n\n\n\nFacilities\xe2\x80\x99 ratimm of brochure\xe2\x80\x99s understandability.\n\nSixty-six percent of facilities thought the brochure wa somewhat, or veq, easy for mos~ of\ntheir patients to understand.\n\nThe majority (66 percent) of facilities reported the brochure was either somewhat (38\npercent), or very, easy (28 percent) for most patients to understand. Eighteen percent said it\n\nwas neither easy nor hard to understand and, 14 percent said it was somewhat hard to\n\nunderstand. ~ facilities said the brochure was verv hard to understand and only one facility\n\nreported not knowing how well patients understood the brochure\xe2\x80\x99s contents.\n\n\nOur patient surveys (OEI-06-95-O0320) showed an even higher number of patients (84\n\npercent) thought the brochure was somewhat, or very, easy to understand. However, the\n\ninability of many patients to accurately recall key brochure concepts tempers their high\n\nratings of ease of understanding the brochure somewhat.\n\n\nTen facilities reported most of their patients found the brochure\xe2\x80\x99s content somewhat hard to\n\nunderstand, citing several reasons for this difficulty in patient understanding. Six facilities\n\nfound the use of the terms URR and KT/V too confusing, and five facilities said patients\n\nwere unclear what number the brochure was talking about. Four facilities said the\n\nbrochure\xe2\x80\x99s reading level was too high, and three facilities said the brochure\xe2\x80\x99s content was too\n\nadvanced for their patients.\n\n\n\n\n\n 9\n\n\x0cFacilities reporting the brochure as very easy to understand served patients with an average\nof 15 more months experience on dialysis (see table 7). Such a correlation suggests that\npatients undergoing dialysis for longer lengths of time may be more interested in or receptive\nto the brochure\xe2\x80\x99s content.\n\n\n Table 7: AVERAGE MONTHS PATIENTS ON DIALYSIS PER FACILITY\n by facility rating of brochure\n\n Brochure rated as very easy to understand Average months patients on dialysis\n\n Yes 56\n\n No I 41\n\n\nForty-six percent of facilities reported most or all of their patients wanted to know their own\n URR or KT/V number afier receiving the brochure, and 47 percent said hay or more of their\npatients asked questions about the brochure\xe2\x80\x99s content.\n\nForty-six percent of facilities reported most or all of their patients wanted to know their own\nadequacy numbers after receiving the brochure. Forty-seven percent of facilities also\nreported about half or more of their patients asked questions about the brochure\xe2\x80\x99s content.\nHowever, 33 and 40 percent of facilities reported onlv a few patients wanted to know their\nown UR.R or KT/V numbers and/or asked questions after receiving the brochure, with six\nand three facilities, respectively, reporting none of their patients did either of these things.\n\nEighteen percent of facilities reported about half or more of their patients requested more\ninformation about their treatment, while 55 percent of facilities said only a few patients did\nthis after receiving the brochure. Additionally, 22 percent of facilities said no patients made\nsuch an inquiry.\n\nHowever, far fewer facilities reported any negative reaction to the brochure. Only 11\npercent of facilities reported about half or more of their patients threw the brochure away\nwithout reading it, and 42 percent said only a few of their patients did this. Only ten percent\nof facilities reported about half or more patients were nt interested in the brochure\xe2\x80\x99s\ninformation. Fifty-eight percent of facilities reported only a few patients were @ interested\nin the brochure\xe2\x80\x99s information, and 13 percent of facilities said that none of their patients\nwere ~t interested in the brochure\xe2\x80\x99s content.\n\nFacilities\xe2\x80\x99 ratimzs of the inmortance of brochure\xe2\x80\x99s content.\n\nAlmost all facilities (98 percent) said patients need to know the information in the brochure,\n\nClearly, there is almost unanimous facility support of the adequacy information discussed in\nthe brochure. Further, the two facilities disagreeing with the brochure\xe2\x80\x99s content said this\nwas only because they had not seen a copy of the brochure or were already including this\ninformation on each patient\xe2\x80\x99s monthly lab report.\n\n\n\n 10\n\n\x0cAlmost all facilities had something positive to say about why the brochure\xe2\x80\x99s content provided\ncritical information. The majority of these explanations stressed the importance of teaching\npatients to be actively involved in their dialysis, and noted the brochure could reinforce staff\neducational efforts and help patients better understand why they might have to increase their\ntreatment time on the dialysis machines.\n\nSpecifically, the following comments represent the enthusiasm facility staff expressed about\nthis information: 1) \xe2\x80\x9cMore educated patients (are) more proactive and more responsible in\ntheir care...;\xe2\x80\x9d 2) \xe2\x80\x9cEncourage(s) compliance with attendance and patients to stay on prescribed\ntimes...;\xe2\x80\x9d 3) \xe2\x80\x9cEncourages patients to be more informed and take more responsibility, \xe2\x80\x9d 4) \xe2\x80\x9cSo\npatients will/can appreciate need for full time on dialysis;\xe2\x80\x9d 5) \xe2\x80\x9cThe brochure helps reinforce\ninformation given by us;\xe2\x80\x9d 6) \xe2\x80\x9cThe more (educational) information, the better;\xe2\x80\x9d and 7) \xe2\x80\x9cThe\nmore patients know about their illness, the better control they can have. \xe2\x80\x9d\n\nFacilities\xe2\x80\x99 ratinm of using a brochure as educational tool.\n\nEighty-two percent offacilities reported a brochure is the method they would have used to\ncommunicate this information to patients, while 17 percent said they did Wt support the\nbrochure as the method they would have used.\n\nFacility staff supporting the brochure as the method they would have used to inform patients\nsaid this because the brochure is compact, to the point, easy to read and distribute, and gives\npatients and families a chance to review the information at a later time.\n\nOthers said the brochure was one of several methods they would have used, especially for\ntheir literate English-speaking population. A few staff also said they would supplement the\nbrochure with a staff explanation of the information. Many staff members expressti the\nimportance of visual aids and charts, such as the one in the brochure.\n\nThe following comments are typical of facility staff views on the usefidness of the brochure\nas an educational tool: 1) \xe2\x80\x9cThey (patients) needed to see printed educational material to\nbelieve it\xe2\x80\x99s true;\xe2\x80\x9d 2) \xe2\x80\x9cQuick, self-learning and backed up concept trying to sell to patients;\xe2\x80\x9d\n3)\t \xe2\x80\x9cEasy to reach all patients and we use them in our new patient orientation packets;\xe2\x80\x9d 4)\n\xe2\x80\x9cWas easy to understand - colors were good in attracting patient attention;\xe2\x80\x9d 5) \xe2\x80\x9cBest way to\nget information to patients;\xe2\x80\x9d 6) Important they look at and refer back to;\xe2\x80\x9d and 7) \xe2\x80\x9cGood\nteaching tool if individually given, otherwise not sure... \xe2\x80\x9d\n\nFacility staff less supportive of using a brochure said they would have used a videotape\ninstead, especially for less literate patients. Others would have used a computer-generated\ntable of this information, or relied on individual verbal, face-to-face teaching, instead.\n\n\n\n\n 11\n\n\x0cFacilities\xe2\x80\x99 use of the brochure in educational outreach materials.\n\ni%irty percent of facilities reported they are already using the brochure or brochure\xe2\x80\x99s content\nin their educational outreach materials; others have plans to do so, and gave some plausible\nexplanations why they have not.\n\nAlmost one-third of facilities used the brochure in their educational outreach materials,\nmostly by including the material in their patient newsletter or using it in an educational in-\nservice training, or to educate new patients. Other facilities used the brochure in teaching\nfamilies, posting it on the patient bulletin board, and in reviewing the material with patients\nwhen going over monthly lab report cards.\n\nAlthough 70 percent of facilities did not report including the brochure\xe2\x80\x99s content in their\neducational material, 31 of 55 facilities specifically explained why they had not included the\nbrochure or it\xe2\x80\x99s content in their outreach efforts.\n\nSpecifically, twelve facilities indicated they have no newsletter or educational outreach\nmaterials. Seven facilities were planning to include the brochure in their future outreach but\nfour facilities said they had no need to do so. They feel handing the brochure out to all\npatients was enough, or that they continuously explain this information monthly. Four\nfacilities said they haven\xe2\x80\x99t had an opportunity due to time constraints. One facility displayed\nthe brochure in their lobby area. One facility didn\xe2\x80\x99t include the brochure because the\nlanguage was too sophisticated for most of their patients.\n\nFacilities\xe2\x80\x99 innovative methods in educating Datients.\n\n\nFacilities use a variety of innov~\xe2\x80\x99ve methods to educate ESRD pti.ents about their\ntreatment. Such innovative methods include using videotapes during patients\xe2\x80\x99 dtiysis\ntre@nents, bulletin boards, posters, or wall chatis; along with educational cbsses, in-\nservice trm\xe2\x80\x9dning, newsletters, and monthly repoti cards.\n\nVideotape was the most frequently mentioned (ten facilities) method used to educate patients\n\nabout their treatment. Videos can be used during patients\xe2\x80\x99 treatments and assure all patients\n\nbetter understand the material, even those with reading difficulties. One facility was using\n\nvideos produced by local physicians and featuring their own patients.\n\n\nFour facilities reported an innovative use of bulletin boards, wall charts, and patient incentive\n\nprograms to improve dialysis treatment, Other facilities conduct patient in-service training,\n\neducational classes, and/or use a theme of the month to focus staff and patients on a\n\nparticular topic. Facilities also employ monthly newsletters, report cards, and one-on-one\n\nteaching to educate patients about their treatment.\n\n\nFour facilities conduct educational meetings before new patients first begin their treatment to\n\nhelp them better understand their future dialysis treatment. Two facilities use current\n\npatients to teach their new patients.\n\n\n\n\n\n 12\n\n\x0cFacilities\xe2\x80\x99 recommendations for future educational initiatives.\n\n Facilities recommended thti future brochures for ESRD palients should be simplified, use\n lkyman \xe2\x80\x99s terms, and include more pictures, diugrams, and bright colors. Additionally,\nfacilities recommended providing a larger supply of brochures so facilities can distribute\nthem to every pti\xe2\x80\x9dent.\n\nThe majority of recommendations made by facilities (13 facilities) for future brochures for\nESRD patients involved the presentation of the brochure\xe2\x80\x99s content. Facilities recommended\nbrochures not be too detailed, but instead include; catchy titles, more visual explanations,\nmore graphs, and larger type for visually impaired patients. Additionally, facilities\nrecommended creating a separate brochure for patients with lower reading levels. One\nfacility wanted the \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure to leave blanks on the recommended\nlevel of URR or KT/V numbers so facilities could assign higher levels for their patients,\nwhile one facility wanted to see the brochure split into two brochures, one discussing URR\nand one discussing KT/V.\n\nSeven facilities recommended printing the brochure in additional languages, with the majority\nrequesting Spanish brochures. These facilities apparently were not aware HCFA has already\nproduced a Spanish version of the \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure which it will distribute\nshortly to facilities.\n\nSix facilities recommended improvements in the distribution of future brochures, mainly by\nassuring they receive a larger supply of brochures; one for each patient, plus extras to\ndisplay in certain areas of the facility. One facility reported confusion about how the\nbrochures were distributed to patients. This facility never received the brochure and was told\nby their network that the brochures were mailed individually to patients. One facility\nrecommended all staff members be informed prior to distributing the brochure to patients.\n\nSix facilities wanted to see additional brochures on various topics that help patients improve\ntheir compliance and overall treatment. Recommended topics included: fluid compliance,\nphosphate binders, and calcium intake.\n\nThe creation of educational progmm videos for both patients and staff was recommended by\ntwo facilities, while one facility wanted to see follow-up material to the \xe2\x80\x9cKnow Your\nNumber\xe2\x80\x9d brochure, including a more in-depth explanation and a larger graph.\n\nLastly, two facilities suggested continuing communication from dialysis facilities to assure\nnew patients receive introductory information about dialysis and the role of networks.\n\n\n\n\n 13\n\n\x0cDIALYSIS ADEQUACY\n\nFacihlies smii ai least 50 percent of their pah\xe2\x80\x9dents are interested in the adequacy of their\ndiulysis, with 29 percent tracking their numbers month-to-month. However, only 77\npercent of facilities calculate pm-ents\xe2\x80\x99 numbers d least monthly, with 21 percent doing this\nonly quatierly. Further, only 53 percent of facilities ~\xe2\x80\x9cve p~\xe2\x80\x9dents their numbers all the\ntime; many do so far less, 16 percent do this less than half the time.\n\nAn average of 57 percent of patients from all facilities were reported to be interested in\nfinding out how adequate their dialysis is. The modal percent of interested patients was 50\npercent, with a median of 60 percent of patients interested in knowing the adequacy of their\ndialysis.\n\nThe majority of facilities (77 percent) calculate patients\xe2\x80\x99 URR or KT/V numbers at least\nmonthly, but 21 percent of facilities calculate such numbers only on a quarterly basis, and 3\nfacilities calculate adequacy numbers only as ordered by the doctor or other staff members.\n\n Free-standing facilities were more likely to report more of their patients are interested in\njinding out abou~ the adequucy of their dialysis and were also more likely to calculate\npatients\xe2\x80\x99 adequacy information on a monthly basis, compared to hospital-based facilities.\n\nFree-standing facilities were more likely (61 vs. 42 percent) to report half or more of their\n\npatients were interested in finding out how adequate their dialysis is, compared to hospital-\n\nbased facilities. Free-standing facilities were also three times more likely (76 vs. 24 percent)\n\nto calculate patients\xe2\x80\x99 adequacy numbers at least monthly compared to hospital-based\n\nfacilities.\n\n\nFacilities who calcukzte their patients\xe2\x80\x99 numbers monthly or more oj?en were much more likely\nto have distributed ~he brochure to every patient.\n\nOf facilities reporting they distributed the brochure to every patient, 87 percent said they also\ncalculated patients\xe2\x80\x99 URR or KT/V numbers at least on a monthly basis. In contrast, of\nfacilities distributing the brochure to just some of their patients or to none at all only 62 and\n64 percent, respectively, calculated patients\xe2\x80\x99 URR or KT/V numbers at least monthly.\n(see table 8)\n\n\n Table 8: FREQUENCY OF CALCULATING PATIENTS\xe2\x80\x99 URR OR KT/V NUMBER\n by distribution of brochure\n\n Dktributed to Distributed to Brochure not\n Number calculated every patient some patients distributed\n\n Monthly or more 87% 62% 64%\n (33) (18) (7)\n\n Less than monthly 13% 38% 36%\n (5) (11) (4)\n\n\n\n\n 14\n\n\x0cFacilities with patients averaging 14 months longer on dialysis (48 months vs. 34 months)\nwere significantly more likely to calculate and share patient URR or KT/V numbers on a\nmonthly basis (see table 9).\n\n\n\n Table 9: AVERAGE MONTHS PATIENTS ON DIALYSIS PER FACILITY\n by facilities giving monthly URR or KT/V numbers to patients\n I\n Number calculated monthly I Total months patients on dialwis\n Yes I 48\n\n No I 34\n\n\n\nAlthough 53 percent of facilities said they give patients their URR or KT/V numbers all the\ntime, muny facilin\xe2\x80\x99es reported doing so far less, with 16 percent giving this information less\nthan half of the time.\n\nThe majority (53 percent) of facilities report giving patients their URR or KT/V numbers 100\npercent of the time, while 27 percent give this information only 75 percent of the time. Nine\npercent of facilities say they give this adequacy information to patients only half of the time,\nand seven percent of facilities only do so 25 percent of the time.\n\nFour percent of facilities never give patients information about their URR or KT/V numbers.\nTwo facilities gave the following reasons for not sharing this information: 1) \xe2\x80\x9cMost\noutpatients are very sick. We are a hospital-based unit, \xe2\x80\x9d and 2) \xe2\x80\x9cMost patients are not\ninterested or didn \xe2\x80\x98t understand URR or KT/V at the time the brochure came out. \xe2\x80\x9d\n\nIn our patient surveys (OEI-06-95-00320), we found only 45 percent in our first sample and\n35 percent in our second sample identified the URR test as one used in their dialysis facility\nto measure the adequacy of their dialysis, with even fewer identifying the KT/V test (37 and\n36 percent). Additionally, about one-quarter of all patients sampled said they did not know\nwhich test(s) were used by their dialysis facility to measure adequacy.\n\nFree-standing facilities were twice as likely (64 vs. 32 percent) to give patients their URR or\nKT/V numbers 100 percent of the time, compared to hospital-based facilities.\n\nOf facilities distributing the brochure to every patient, 73 percent also say they give patients\ntheir URR or KT/V number 100 percent of the time, compared to 43 and 36 percent of\nfacilities distributing it to a portion of their patients or not distributing the brochure at all.\n(see table 10)\n\n\n\n\n 15\n\n\x0c Table 10: FREQUENCY PATIENTS GIVEN URR OR KT/V NUMBER\n by distribution of brochure\n\n Distributed to Dktributed to Brochure not\n Frequency number given every patient some patients distributed\n\n 100% of time 73% 43% 36%\n (27) (12) (4)\n\n 50-75 % of time 19% 46% 27%\n (7) (13) (3)\n\n\n I\n 25% of time to never given 8% 11% 36%\n (3) (3) (4)\n\n\n\n\nFacilities reporting higher percentages of patients interested in adequate dialysis also were\n\nsignificantly more likely to give patients their URR or KT/V number 100 percent of the\n\ntime, than facilities reporting patients with lower interest in adequate dialysis. Facilities\n\ngiving adequacy information 100 percent of the time were over 1.5 times more likely (64 vs.\n\n41 percent) to also report patients were interested in adequate dialysis (see table 11).\n\nAlthough we don\xe2\x80\x99t know whether patients are more interested in adequate dialysis because\n\nthey are more frequently given this information or visa-versa, an observable correlation\n\nexists between these variables, suggesting the importance of both of these important\n\nelements.\n\n\n\n\n Table 11: PERCENT OF PATIENTS IN FACILITIES REPORTED\n INTERESTED IN ADEQUATE DIALYSIS\n by frequency patients are given URR or KT/V number\n I\n Frequency of patients given Average percent of patients\n URR or KT/V # interested in adequate dialysis\n\n 100 % of time\t 64%\n (55)\n\n 50-75 % of time\t 54%\n (39)\n\n 25% of time to 41%\n never given (11)\n\n\n\n\n 16\n\n\x0cSignificant differences also existed in the frequency with which some facilities gave patients\ntheir URR or KT/V numbers based on the percentage of Hispanic patients and patients of\nother backgrounds, such as Indian, Lebanese, and/or Hawaiian/Samoan (see table 12).\nFacilities with a higher proportion of these patients were much more likely to not give their\npatients adequacy information on a regular basis. Additionally, near significant differences\nexisted based on the percentage of black patients per facilities. Facilities distributing\nadequacy information only 25-50 percent of time also had a majority of black patients,\ninstead of a majority of wbite patients.\n\n\n\n Table 12: FREQUENCY PATIENTS GIVEN URR OR KT/V NUMBER\n by distribution of patients by race\n\n\n\n I Dktribution of patients\n in facilities by race\n\n\n Frequency # given \xe2\x80\x98%White % Black % Hispanic % Asian % Other\n\n 100% of time 47% 44% 5% 2% 2%\n\n 75% of time 47% 33% 14% 5% 1%\n\n 50% of time 38% 44% 1% 3% 14%\n\n 25% of time 30% 56% 5% 7% 2%\n\n Never 54% 17% 26% o% 3%\n\n\n\nFacilities reported an average of 29 percent of their patients track their URR or KT/V\nnumbers j?om month to month; patients given ~his information all the time are signljicantly\nmore likely to track their numbers.\n\nVast differences existed in the percentage of patients tracking URR or KT/V information\nfrom month to month, as reported by facilities. Just under one-third of facilities reported ten\npercent or fewer of their patients track this information, with the median number of patients\nwho track their number being 25 percent. Nevertheless, the largest number of facilities (19\npercent) reported 50 percent of their patients track adequacy information.\n\nFacilities reporting higher percentages of patients tracking URR or KT/V numbers on a\nmonthly basis also were signitlcantly more likely to also be facilities who report they give\npatients this information all the time (see table 13). Facilities giving this information 100\npercent of the time averaged 35 percent of their patients tracking adequacy information,\ncompared to only 25 and 14 percent of facilities giving this information 50-75 percent of the\ntime or less.\n\nThis correlation reinforces the importance of facilities giving this information to their patients\nevery time it is calculated, so that patients can actively participate in their dialysis care.\n\n\n\n 17\n\n\x0c Table 13: Percent of patients in facilities reported\n tracking URR or KT/V number from month to month\n by frequency patients are given URR or KT/V number\n\n Frequency of patients given URR Mean of patients\n or KTIV # tracking number\n\n 100% of time 35%\n (49)\n\n 50-75 % of time 25%\n (35)\n\n 25% of time to 14%\n never given ( 7)\n\n\n\nFacilities regulurly share patients\xe2\x80\x99 phosphorus, potassium, albumin, and B. U.N. test results\nwith them.\n\nIn addition to facilities sharing information about patients\xe2\x80\x99 URR or KT/V test results, 98 and\n97 percent of facilities reported they regularly share phosphorus and potassium test results\nwith patients, while 95 and 93 percent share patients\xe2\x80\x99 albumin and B. U. N results. Thirty-\nfive percent of facilities also share patients\xe2\x80\x99 HCT/Hematocrit test results, while 29 percent\ngive patients their calcium test results regularly. The protein catabolic rate is shared with\npatients by 25 percent of facilities and iron test results are shared by 15 percent of facilities.\nAdditional test results regularly shared with patients include: creatinine, glucose,\ncholesterol, ferritin, and Hgb/Hemoglobin. The only facility reporting they do not share test\nresults with patients regularly also said only 10 percent of their patients were interested in\nadequate dialysis. This same facility said it calculates URR and/or KT/V numbers on a\nmonthly basic but never shares these test results with patients.\n\nAdditionally, the results of our surveys (OEI-06-95-O0320) showed patients most frequently\nidentified the potassium test (60 and 61 percent of patients) and the phosphorus test (55 and\n58 percent) as being used by their dialysis facility to measure adequacy, rather than the URR\nor KT/V test.\n\n\n\n\n 18\n\n\x0c RECOMMENDATIONS\n\nOverall, we found the brochure has the potential to serve as an effective part of a broader\n\nstrategy of improving patients\xe2\x80\x99 understanding of adequate dialysis and enlisting their support\n\nin monitoring the adequacy of their dialysis. The \xe2\x80\x9cKnow Your Number\xe2\x80\x9d brochure was given\n\na positive assessment by facilities receiving it. However, the brochure was not received by\n\nall facilities, nor was it fully distributed or explained to all patients by all receiving facilities.\n\n\nFacilities receiving the brochure were receptive to the brochure\xe2\x80\x99s content, reporting it was\n\nessential information for patients to understand. Nevertheless, facilities varied greatly in how\n\nthey embraced the brochure\xe2\x80\x99s concepts in practice, with some fully engaging patients in\n\nunderstanding their own adequacy information by calculating their URR or KT/V number on\n\na monthly basis and regularly giving these numbers to patients, while others provide key\n\nadequacy information to patients far less often. Yet, when facilities do provide this adequacy\n\ninformation, it appears to increase patient interest and involvement in monitoring the\n\nadequacy of their dialysis. It seems clear that the brochure\xe2\x80\x99s effectiveness in educating\n\npatients and involving them in monitoring dialysis adequacy is heavily dependent upon\n\nfacility practices and the quality of staff-patient relationships.\n\n\nBased on our findings, we recommend that HCFA take the following actions to improve\n\nkidney dialysis:\n\n\nDISSEMINATION. Assure all facilities receive an ample supply of brochures and should\n\nencourage them to distribute a brochure to every patient. HCFA might also consider\n\nproviding guidelines to facilities on effective dissemination approaches.\n\n\nBROCHURE CONTENT & FORMAT. Simply the language and concepts as much as\n\npossible in any subsequent or revised patient brochures. Consideration might be given to\n\ndeveloping alternate versions of the brochure for different reading levels and to add greater\n\nuse of color and graphics to gain interest and promote patient understanding.\n\n\nCONTINUING PATIENT EDUCATION. Encourage continuing efforts by facilities to\n\neducate patients and to reinforce the importance of patient understanding and monitoring of\n\nthe adequacy of their dialysis. A training video to introduce and/or reinforce the brochure\n\nconcepts might also prove effective, based on the suggestions and experiences of some\n\nfacilities.\n\n\nUSE OF ADEQUACY MEASURES. Encourage facilities to calculate dialysis adequacy\n\nmeasures on a monthly basis and share these numbers with patients on a regular basis in\n\norder for the brochure to achieve its intended impact on patients and facilities.\n\n\n\n\n\n 19\n\n\x0c AGENCY COMMENTS\n\nThe Health Care Financiag Administration (HCFA) concurred with all the report\xe2\x80\x99s\nrecommendations. We appreciate their responsiveness to our proposals. However, we have\na new concern that has arisen since we issued our draft report.\n\nWe originally recommended that HCFA encourage facilities to calculate dialysis adequacy\nmonthly and share these numbers with patients on a regular basis. HCFA informed us that\nthey had no requirement for facilities to measure the adequacy of dialysis at prescribed\nintervals but that their revised ESRD Conditions for Coverage will require facilities to\ncalculate the adequacy of dialysis quarterly. This is in marked constrast to the upcoming\nNational Kidney Foundation\xe2\x80\x99s Dialysis Outcome Quality Initiative guidelines which\nrecommend a standard practice guideline of a monthly URR or KT/V calculation, not\nquarterly calculations. We are concerned that facilities will interpret HCFA\xe2\x80\x99s Conditions for\nCoverage as the acceptable standard and conduct adequacy testing only quarterly.\n\nIn our view, this could pose a severe health risk for ESRD patients whose dialysis could go\nthree months before needed corrections could be made to their treatment. We are convinced\nthat facilities should be required to calculate adequacy numbers monthly and we urge HCFA\nto reconsider or amend the Conditions for Coverage accordingly.\n\nDiscussion of Technical Comments\n\nHCFA suggested we assess whether some of the comprehension issues might be attributed to\na lack of cultural sensitivity in the brochure. We did analyses looking at both a patient\xe2\x80\x99s\nrace and primary language. However, we found no statistically significant differences on key\nquestions related to comprehension based on these two variables.\n\nAdditionally, HCFA called attention to the Spanish version of the brochure. We were happy\nto mention that 50,000 brochures would be printed for later distribution in the background\nsection of both reports. Of course this study examined only the English version; at the time\nof our facility survey the Spanish version had not been distributed.\n\nSee Appendix C for a full text of HCFA\xe2\x80\x99S comments.\n\n\n\n\n 20\n\n\x0c EN DNOTES\n\n\n\n\n1. \xe2\x80\x9clltle 42 CFR 4(H. 2 lW, Conditions tor Coverage ot\xe2\x80\x9d Suppliers ot\xe2\x80\x9d ESRD Services,\n October 1993; pg. 127.\n\n2. Hemodialysis therapy cleans and filters a patient\xe2\x80\x99s blood with a dialyzer. This\n procedure can be done at home or in-center by nurses or trained technicians.\n Hemodialysis is usually performed about three times a week, with treatments\n lasting 2 to 4 hours each. Through this treatment and a proper diet, ESRD patients\n can greatly reduce the amount of wastes building up in their blood.\n\n3. Peritoneal Dialysis replaces the work of the kidneys by removing extra water,\n wastes, and chemicals from the body. A cleansing solution, called dialysate, helps\n facilitate a patient\xe2\x80\x99s peritoneal membrane of the abdomen to filter their blood,\n requiring a catheter to be permanent y placed into their abdomen. Wastes are\n filtered from a patient\xe2\x80\x99s body once the dialysate is drained. There are three types\n of peritoneal dialysis, with Continuous Ambulatory Peritoneal Dialysis (CAPD)\n being the most common.\n\n4. The Urea Reduction Ratio (uRR) informs patients how well hemodialysis is\n working by telling them the percentage of urea (waste products) removed from\n their body during their treatment.\n\n5. Some dialysis facilities calculate a KT/V ratio instead of URR. This urea kinetic\n model or index is defined as the dialyzer urea clearance (K) multiplied by the\n patients\xe2\x80\x99 treatment time (T) divided by the volume of urea distribution (V).\n\n6. Consensus Development Conference Panel. Morbidity and mortality of renal\n dialysis: An NIH consensus conference statement. Ann Intern Meal, 1994; 121:\n 62-70.\n\n7. Renal Physicians Association. Clinical practice guideline on adequacy of\n hemodialysis: Clinical practice guideline, number 1. December, 1993\n\n8. Strong linkages exist between facilities\xe2\x80\x99 ownership type and the way they are\n administered. Over three-fourths (79 percent) of the non-profit/government-owned\n facilities are also administered by a hospital, while only one for-profit facility was\n administered by a hospital.\n\n\n\n\n 21\n\n\x0c APPENDIX A\n\nRESPONDENT FACILITY PROFILE\n\nKev facilitv characteristics\n\nSixty-seven percent of our facilities were free-standing, while 30 percent were attached to a\n\nhospital, and three percent were part of a clinic or medical complex. Sixty-five percent of\n\nfacilities were non-hospital administered and 35 percent were hospital administered. The\n\nmajority (56 percent) of responding facilities were for-profit, 39 percent were not-for-profit,\n\nand five percent were government facilities.\n\n\nForty-three percent of dialysis facilities were located in urban areas, 29 percent in suburban\n\nareas, and 28 percent in rural areas. Our responding dialysis facilities had an average of 16\n\ndialysis stations, ranging between two and eighty. The median number of dialysis stations\n\nwas 13.\n\n\nThe average length of participation in Medicare/Medicaid for responding facilities was 11\n\nyears, with four facilities participating for only one year and eight facilities participating for\n\n20 years. The mode for our facilities was 19 years (27 facilities) and the median was 11\n\nyears.\n\n\nPatient education resDonsibifities\n\n\nSixty-four percent of responding facilities had a primary person in charge of patient\n\neducation. Eighty-nine percent of facilities listed registered nurses as the position primarily\n\nresponsible for patient education, while 66 and 59 percent of facilities, respectively, listed\n\nthe dietitian and/or social worker as having this role. Doctors provided patient education in\n\n43 percent of facilities, dialysis facility administrators in 21 percent, technicians in 34\n\npercent, and LVNS in 26 percent of facilities. Other staff members playing a primary role in\n\neducating patients include the education or inservice coordinator and the director of nursing.\n\nThree facilities specifically mentioned that everyone in the facility or a specific staff team is\n\nin charge of patient education.\n\n\nFACILITY PATIENT DEMOGRAPHICS\n\nAverage age of patients\n\nThe average estimated age of ESRD patients from responding facilities was 58 years old,\nwith a range of patients between the ages of nine and 75. The mode and the median age\nestimated by our facilities was 60 years old, with 24 percent of facilities reporting 60 as their\naverage patient age.\n\n\n\n\n A-1\n\n\x0cMonths patients on dialvsis\n\nFacilities reported their patients spent an average of 45 months on dialysis, with one facility\nranging from patients only spending an average of one month on dialysis compared to\n126 months on dialysis in another facility. The mode number of months patients spent on\ndialysis was 24 months, with a median of 37 months.\n\nPatients\xe2\x80\x99 disability level\n\nFacilities estimated that an average of 22 percent of their patients have a disability that limits\ntheir ability to read or understand information. Two facilities reported none of their patients\nhad limiting disabilities, while 59 facilities said less than 24 percent of their patients have a\ndisability. Five facilities reported 75 percent or more of their patients had disabilities that\nlimit their ability to read or understand information. However, 21 facilities reported between\n25-49 percent of their patients had reading or comprehension disabilities and another 15\nfacilities said 50 percent or more of their patients had these disabilities.\n\nEducational level\n\nSeventy-eight percent of facilities reported information about their patients educational level.\nFacilities varied greatly in the educational level of their patients (see table 1). The highest\npercent of patients (43 percent) had high school diplomas. The average percent of patients\nwith less than a high school education was 42 percent. Far fewer patients had some college\n(9 percent) or college/professional degrees (5 percent).\n\n\n\n Table 1: PATIENT EDUCATIONAL LEVELS IN RESPONDING FACILITIES\n\n Average % of\n Patients\xe2\x80\x99 educational level patients Minimum % Maximum % Median \xe2\x80\x98%\n\n Less than high school 42% o% 100% 24%\n (3) (1)\n\n High school diploma 43% o% 100% 40%\n (3) (2) (6)\n\n Some college 9% 60% 5%\n (;: (1) (12)\n\n College or professional degree 5% o% 40% 4%\n (21) (1) (2)\n\n\n\n\n A-2\n\n\x0cRacial Composition of Patients\n\nOne hundred and five facilities reported the racial composition of their patients. White\npatients represented the largest racial group (45 percent). Black patients represented 40\npercent of patients in responding facilities (see table 2).\n\n\n\n Table 2: PATIENT RACIAL COMPOSITION IN RESPONDING FACILITIES\n\n Average % of\n Patients\xe2\x80\x99 racial composition patients Minimum % Maximum % Median %\n\n Wl_ite 45% o% 100% 40%\n (lo) (4) (11)\n\n Black 40% o% 100% 40%\n (11) (2) (6)\n\n Hispanic 7% o% 100% o%\n (57) (1) (57)\n\n Asian 3% o% 57% o%\n (72) (1) (72)\n\n Other 3% o% 69% o%\n (83) (1) (83)\n\n\n\n\nFACILITY STAFF RESPONDENT PROFILE\n\nSixty-seven percent of our facility surveys were completed by just a single respondent, while\ntwo staff members completed 16 percent of our surveys, and three surveys were completed\nby a team of three. Our surveys were most frequently completed by registered nurses (47\npercent), while facility administrators completed 20 percent. Dietitians completed 15 percent\nof the surveys, with social workers and director of nursing or nurse managers completing 13\npercent. Clinical coordinators completed six percent of our surveys.\n\nOf the 25 facilities completing the survey in teams of two or three staff members, the most\ncommon combination of staff was registered nurses and the director of nursing, or the\nfacility administrator and registered nurses.\n\n\n\n\n A-3\n\n\x0c APPENDIX B\n\nESTIMATES AND CONFIDENCE INTERVALS\n\nThe chart below summarizes the estimated proportions and the 95 confidence intervals for\nkey statistics presented in this report based on this simple random sample.\n\n\n Table 1: POINT ESTIMATES AND CONFIDENCE INTERVALS FOR KEY QUESTIONS.\n\n 95% CONFIDENCE\n QUESTION POINT ESTIMATE INTERVAL\n\n Proportion of facilities receiving the brochure.\n\n Overall 76% 68.1% - 83.9%\n Urban 64% 50.3% - 77.7%\n Suburban 81% 67.2% - 94.8%\n Rural 93% 83.9% - 100%\n\n Proportion of facilities handing brochure to patients.\n\n 74% 64.7% - 83.3%\n\n Proportion of facilities distributing brochure to every patient.\n\n 50% 38.5% -61.5%\n\n For-profit facility ownership by distribution of brochure.\n\n 74% 60.1% - 87.9%\n\n Hospital administered facility by distribution of brochure.\n\n 18% 5.8% - 30.2%\n\n Proportion of facilities providing an explanation of brochure to patients.\n\n 84% 75.6% - 92.4%\n\n Proportion of patients in facilities appearing alert during the staff explanation.\n\n 59% 46.3% -71.7%\n\n Proportion of facilities rating brochure as excellent or good.\n\n 72% 61.9% - 82.1%\n\n Proportion of facilities rating the brochure as somewhat or very easy for patients to understand.\n\n 66% 55.0% - 77.0%\n\n\n\n\n B-1\n\n\x0c Table 1: CONT.\n\n 95% CONFIDENCE\nQUESTION POINT ESTIM.4TE INTERVAL\n\nAverage percent of patients interested in finding out about adequate dialysis.\n\n 57% 51.4% - 62.6%\n\nProportion of facilities calculating patients\xe2\x80\x99 URR or KT/V number(s) at least monthly.\n\n 77% 59.9% - 84.8%\n\nProportion of facilities calculating URR or KT/V number(s) monthly by type of distribution of the\t\nbrochure.\t\n\nType of distribution:\t\nAll patients 87% 76.3% - 97.7%\t\nSome patients 62% 44.3% - 79.7%\t\nNo patients 64% 35.6% - 92.4%\t\n\nProportion of facilities giving adequacy information to patients 100 percent of the time.\n\n\n 53% 43.4% - 62.0%\n\nProportion of patients in facilities tracking their adequacy numbers monthly.\n\n 29% 24.4% - 34.4%\n\nProportion of facilities giving patients their potassium test results regularly.\n\n 97% 93.8% - 100%\n\n\n\n\n B-2\n\n\x0c TESTS FOR SIGNIFICANCE\n\n Differences between the way facilities responded to the survey; whether they thought the\n brochure was excellent or not, whether they thought it was very easy to understand or not,\n and whether they calculated patients\xe2\x80\x99 URR or KT/V numbers at least on a monthly basis or\n not, were tested for significance for several questions. The table below shows the difference\n between groups and the resulting value when a t-test was performed.\n\n\n\n Table 2: TESTS FOR SIGNIFICANCE FOR KEY QUESTIONS.\n I I\n RATED BROCHURE AS EXCELLENT\n QUESTION\n YEs NO T VALUE\n r\n Average % of patients in facilities\n interested in adequate dialysis 75.1% 52.3% 2.89-\n\n Average % of patients in facilties\n tracking their URR or KT/V 40.1% 27.1% 1.42\n numbers monthly\n\n Average months patients on\n dialysis per facility 55 months 41 months 2.05=\n\n RATED BROCHURE AS VERY EASY\n QUESTION TO UNDERSTAND T VALUE\n\n YEs NO\n\n Average months patients on\n dialysis per facility 55 months 41 months 1.90-\n\n URR OR KT/V # CALCULATED AT\n QUESTION LEAST MONTHLY T VALUE\n\n YEs NO\n\n Average months patients on\n dialysis per facility 48 months 34 months 3.13-\n\n\xe2\x80\x98 Indicates significance at the 90% confidence level.\n- Indicates significance at the 95% confidence level.\n- Indicates significance at the 99% confidence level.\n\n\n\n\n B-3\n\n\x0c APPENDIX C\n\n\n\nTEXT OF AGENCY COMMENTS\n\n\n\n\n c-1\n\x0c .. .. -et,.\n ,4\n ..\xe2\x80\x9d\n\n\n\n\n d .p---\n . Health Care Finaw!na Administra$i\xe2\x80\x9dn\n. DEPARTiMENT OF HEALTH & HUMAN SERVICES\n:\n\xef\xbf\xbd\n\n5-\n -\xe2\x80\x9c*,,,,mTd The Admln!strator\n Washlfigtfw. O C. Poml\n\n\n\n\n DATE:\n\n To\n\n\n FROM\n Administrator\n\n SUEU-ECT:\n Ofiw of hpccux @ncd (OIG) ~ Rqort%: \xe2\x80\x9c~OW Your Nutnhr\xe2\x80\x9d\n Brochure - Pempcctiws of Dia.I@s Paricnts (OEI-06-9S40320) and\n \xe2\x80\x9cIGmw Your Numb& Brochure - E~cncu of Dinlysis Faciiiri~\n (oEL06-95-tM321)\n\n We reviewed the almw-r&rcnced reports which examine the cfl%tj~m~ of the Hea?th\n Care Fmcing Administration\xe2\x80\x99s End Sragv H D&ax wqzax-n\n ..\n Our detiki cwnmenti on& report rt#uuneadations arc attached fur yOur\n cousid-cration. Thank you for tix oppxtuni~ to review andmmmentm thee rupm.\n\n Anachmcnt\n\x0c Commenfi of the Health cue FiIIanchz Adrninistiation U-ICFA) on\n\n Offlcc of Inspector Gened (OIG) Draft Reports:\n\n \xe2\x80\x9chow Yow Number\xe2\x80\x9d Brochure - Perspectives of\n\n Dialysis Patients, (OEI-06-95-00320) and \xe2\x80\x9cKnow Your Number\xe2\x80\x9d\xe2\x80\x99 Brochure \xc2\xad\n\n ~xueriences of Dialysis Facilities. (OEI-06-95-0032 1]\n\n\n\n\n\n\xe2\x80\x9cfiow YOW Number\xe2\x80\x9d Brochure - Perspectives of Dialvsis Patients. (OEI-06-95-0032U,)\n\nOIG Recommendation 1\n\nHCFA should ensure fiture patient brochures are received by all Medicare dialysis\npatients.\n\nHCFA Resuonse\n\nWe concur. Direct mailing of brochures to patients was considered for our initial\nbrochure distribution. However, the American Association of Kidney Patients\nrecommended that the brochure be distributed through facilities where questions can be\nasked and explanations provided. Impossible, future distributions will be a combination\nof direct mailing to patients and bulk mailing to facilities.\n\nOIG Recommendation 2\n\nHCFA should build on the patienth.ff relationship in order to improve patient\nunderstanding of urea reduction ratios md tie ufea kinetic modeI and the importanc~ of\nachieving adequate dialysis.\n\n~CFA Response\n\nWe concur. The patientistaff relahonship is critical to t-he improvement of a patient\xe2\x80\x99s\nunderstanding of end-stage rend disease (ES~). Most patients rely on their c~e givers\nfor necessary information and encouragement in order to be active participants in the\nhealth care decisions that involve them. Facility guidelines that provide the staff with\nadditional background materials and suggeshons on successful ways to use the brochure\nin patient education would support paticntistfiff dialogue as well as patient empow-erment.\nHowever, it will not guarantee that the brochure will be distributed or that dialogue tvill\noccur.\n\x0cPage 2\n\n<\xe2\x80\x99\n Know Your Number\xe2\x80\x9d Brochure - Exucriences\n .. of Dialvsis Facilities, (OEI-06-95-0032 1.)\n\nOIG Recommendation 1 (Dissemination)\n\nHCFA should ensure that all facilities receive an ample supply of brochures and\nencourage them to distribute a brochure to every patient. HCFA might also consider\nproviding guidelines to facdities on effective dissemination approaches.\n\nHCFA Responsq\n\n\nWe concur, The initial distribution was intended to provide all ESRD dialysis facilities\n\nwith enough brochures for 100-percent patient distribution plus extra brochures for\n\nanticipated new patients. The mailing labels and distribution amounts were provided long\n\nbefore the brochures were actually mailed. Consequently, some new facilities were not\n\non the list, To the extent possible, future mailings will be done from the most ~urrent\n\nroster of facilities. Additional brochures will be sent to the Networks with a request that\n\nthey send an ample supply to all facilities added to their Network rolls afier the mailing\n\nlist was created,\n\n\nHCFA worked closely with the renal community (Renal Physicians\xe2\x80\x99 Association,\n\nAmerican Association of Kidney Patients, National Kidney Fotmdatio~ American\n\nNephrology Nurses Association National Renal Administrators\xe2\x80\x99 Association, ESi7 ~\n\nNetwork Forum and National Association of Nephrology Technicians) in the\n\ndevelopment and distribution of the brochure, as well m alerting the renal communi~- to\n\nthe brochure distribution. The national associations were most helpfid in promoting the\n\nbrochure at theti national meetings and in their newsletters, as well as distributing\n\nbrochures to their membership. The initial bulk mailing to facilities was accompanied by\n\na letter of introduction that described the brochure development and encouraged facilities\n\nto use the brochures for patient education. We realize that continued and addition~l\n\nfacility support are needed and that facilities which need the most support with the\n\nutilization of the brochure do not belong to or attend the. various national meetings\n\nprovided by the renal commwtity. We will consider developing facili~ guidelines\n\ndescribing brochure disbibution to patients and staff for patient education The\n\nguidelines, if developed, will be included in future brochure bulk mailings to dialysis\n\nfacilities.\n\n\x0c \xef\xbf\xbd\n\n\n\n\nPage 3\n\nOIG Recommendation203 roclmre Content and Format)\n\nHCFA should simpli~ the language and concepts as much\xe2\x80\x99as possible in any subsequent\nor.revised patient brochures. Consideration might be given to developing alternate\nversions of the brochure for different reading levels and to add greater use of color mi\ngraphics to gain interest and promote patient understanding\n\nJ-iCFA Resuonse\n\nWe concur. We appreciate the concern expressed regarding the language and concept ~\n\npresented in the brochure The National Renal Physicians\xe2\x80\x99 Association has a professional\n\nlevel brochure. There is also a high school level brochure on the topic. It is important for\n\nstatipatient dialogue to occur if a patient has difficulty understanding this brochure and\n\nneeds the concepts explained fi.u-ther. Consideration can also be given to developing\n\nalternate versions of the brochure for different reading levels if needed and resources\n\npermit. Development of numerous versions of the brochure does not guarantee that all\n\npatients WM get a copy, that the facility will educate their patients, or that all patients will\n\nbe interested in learning about ESRD. Careful distribution plans would need to be\n\ndeveloped to enable a variety of versions of the brochure to be effectively distributed so\n\nthat the brochure supply and the need would coincide.\n\n\nIn considering reaching rend patients Witi information about adequacy of dialysis. the\n\nneed for a Spanish version of the brochme became apparent, We have, therefore, had the\n\nbl-ochure translated into Spanish and distributed to facilities with Spanish-speaking\n\npatients. Since all facilities were supposed to receive copies of the English version of the\n\nbrochure with the introduction letter, we included information about the availability of\n\nthe Spanish translation in the letter. As a result, we have had a number of requests for t}w\n\nSpanish version from facilities who were not on the original Spanish brochure\n\ndistribution list\n\n\nWe originally designed the brochure to have Iarger print and brighter, more varied colors.\n\nHowever, the Government Printing Office ordy allows a two-color process for printing\n\nbrochures, and budgetary considerations reduced the size of the brochure. Future\n\nprintings of the brochure will be more sensitive to the visually-impaired and more\n\nvisually stimulating if at all possible.\n\n\x0cPage 4\n\n ndation 3 (C on tinuirw Pah\xe2\x80\x98ent Education)\n91G NQQXIYIKE\n\nHCFA should encourage continuing cfforts by facilities to educate patients and rcinfbrce\nthe importance of patient understanding and monitoring of the adequacy of their dialysis.\nA training video to in~oduce ardor reinforce the brochure concepts might also prove\neffective, based on the suggestions and experiences of some facilities.\n\n\n\nWe concur. If tiding permits, a training video to educate patients and reinforce the\nbrochure concepts would probably be very helpfid and well received. Having the\nbrochure information on video would allow the visually-impaired to either better see the\nconcepts or at least hear the concepts. SupportirIg patientistaff dialogue wotild still be\nneeded,\n\nIn additioz since facifi~ staff, in conjunction with the patient are required to\nperiodically review and update the patient\xe2\x80\x99s care p}a~ perhaps staff can be encouraged to\ntake this opportunity to explain tic information to patients and answer questions or\naddress any concerns about the information in the brochure,\n\nOIG R ecomm endation 4 (\xe2\x80\x99U e of AdequacvMea sures)\n\nHCFA shouId encourage facilities to calculate dialysis adequacy measures on a monthly\nbask and share these numbers with patients on a regular basis in order for the brochure to\nachieve its intended impact on patients and facilities.\n\n /\nHCFA Re S?ons e\n\nWe, concur, At this time there is no requirement for facilities to measure the adequacy of\ndialysis at prescribed intemls, Although the re}ised ESRD Conditions for Coverage,\nscheduled for release in early 1997, will require dialysis facilities to calculate the\nadequacy of dialysis quarterly, we encourage more frequent calculations as part of the\nfacilities coWi.nuous quality improvement program.\n\nThe Facilities of Achievement Miative will dernonstiate, in volunteer ESRD dialysis\nfacilities with existing computer capacity, the possibility of collecting medical indicators\non 100 percent patient sample, then collating and analyzing the data and returning it to\nthe prulicipating facility for use in developing quality improvement interventions. The\nclinical indicators of the care received will be submitted to HCFA on a quarterly basis.\n\x0cPage 5\n\nTechnical Comments\n\nThe report should assess whether some of comprehension issues of the beneficiaries\nmight be attributed to a lack of cultural sensitivity in the presentation. Not only is there\nthe relatively large number of Hispanics in the ESRI) progr~ but also American Indims\nand Mican-Amcricarts are represented in the population disproportionately,\n\nWe also note that the report failed to mention that there was a Spanish edition of this\npublication. TM is particukidy important considering the huge Hispanic community\naffected by ESRD.\n\x0c'