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FOR RETIRED ATTORNEYROBERT GROSS, QUALITY IN HIS DIALYSIS EXPERIENCE IS SUMMED UPIN ONE WORD: PATIENCE.More than anything, he appreciates patience in his careteam and a caring atmosphereduring treatment sessions.Quality is a personal experience and is therefore differentfor each individual. Anotherperson, for example, reportedhaving a horrible time in thetreatment chair with restlesslegs syndrome (RLS), whichis a strong urge to move yourlegs often accompanied byuncomfortable sensations thatstart or become worse whenyou are resting. One day herprimary care nurse gave hera newspaper clipping from amedical column. In the article,the doctor described RLS andsuggested avoiding all caffeine-rich drinks like coffee,tea and colas. The person triedthe advice and after a coupleof weeks it worked. Qualityof life for this individual wasquite simply relief from restless twitching during dialysis.Today, people with CKD, boththose on dialysis and those inthe earlier stages of CKD, andtheir caregivers can compareMedicare-certified dialysisfacilities by services provided,characteristics and threequality measures— anemia,hemodialysis (HD) adequacyand patient survival—byusing the Dialysis FacilityCompare (DFC) tool launchedin January 2001 on Medicare’sWeb site (go to www.medicare.gov, then click on“Compare Dialysis Facilitiesin Your Area” at the bottomof the page). The anemia tabmeasures how well peopleon dialysis at a facility havetheir anemia (low red bloodcell count) under control. TheHD tab measures how manyindividuals at a facility getenough waste removed fromtheir blood during dialysistreatments (urea reduction4QUALITY in DialysisBy Josephine MahiKnowing what quality dialysis care means toyou can improve your quality of life.ratio [URR] of 65 or greater).The patient survival tab measures if the people treated ata facility generally live longerthan, as long, or not as long asexpected.The DFC tool also includesother types of informationon HD and peritoneal dialysis (PD) for individuals ondialysis and family members,such as dialysis and kidneydisease publications, linksto other kidney disease Websites, statement of rights andresponsibilities of people whodialyze and contact information for End Stage RenalDisease (ESRD) Networks andstate survey agencies.Care teams and nephrologists usually measure monthlyblood tests for levels of albumin, hemoglobin and Kt/V(URR) as markers of qualityof life. However, quality oflife, including physical andmental health and spiritualfactors are equal, if not moreimportant matters for peoplewith kidney failure in dialysisfacilities, based on the information gathered from participants with CKD in the study,“Promoting Excellence in Endof-Life Care” by the NationalProgram Office of the RobertWood Johnson Foundation (1).Those individuals who participated in the study respondedto interviewers’ questionsbased on the McGill Qualityof Life Questionnaire, theSatisfaction of Life Scale, andtwo patient satisfaction scales,with one adapted from theKidney Disease Quality of Lifeinstrument. The interviewersincluded a new scale exploringthe effects of spiritual beliefsand patient supports. Issuessuch as encouragement fromFAMILY FOCUS Volume 16, Number 1the care team and their levelof satisfaction with doctors,nurses and social workerswere important. More researchneeds to be done to help dialysis care teams improve qualityof life with an informed understanding of the psychologicaland social needs of the personon dialysis.concerned physicians and thevoices of patients, there maycome a time when dialysis providers receive payment basedon measurements of the quality of care given.REFERENCE1. Robert Wood Johnson Foundation.Executive summary of findings fromthe ESRD Quality of Life for DialysisPatients Questionnaire Study. l Editor's Note:Josephine passed away inFebruary. She had chronic kidney disease and had been on incenter hemodialysis since 2000.HandsBy John RiderJosephine MahiTo support the educationalneeds of people on CKD andtheir families for a betterquality of life, the NationalKidney Foundation launchedKidney Learning System(KLS) in April 2003. KLSprovides live programs andaudio/video and printed materials for people with CKD.Visit www.kidney.org/KLSor call 800.622.9010. Requesta copy of the NKF Patientand Family Council DialysisPatients’ Bill of Rights andResponsibilities, or view itonline at www.nkfkidneypatients.orgThe demand for quality indialysis should be a priorityfor people with CKD becauseit would lead to better outcomes and decreased hospitalizations. Concerns about costefficiency and dialysis caredelivery should bring aboutchanges in the future. Withthe leadership of Congress,There is a special groupWho come into this place,With hands of love and kindness,Bringing helpful care and grace.Sometimes the day is hardWith many ups and downsBut they handle each and every one,Without any grumps and frowns.Their hands are sure and nimble,As we watch them do their workWith the sounds of daily business,There is never time to shirk.Friends of those who come here,Are amazed at all they doThey encourage all of us folks,Without an ounce of rue.Their hands and great big hearts,A wonder in every wayLet’s clap our hands for them,Let’s honor them today.John’s wife dialyzes at CedarValley Dialysis Center inWaterloo, Iowa.

TM E D I C A LC O R N E RNational Kidney Foundation'sDialysis Guidelines UpdatesIf you are preparing for HD,plans for a vascular accessshould be made at least sixmonths before you start dialyBy Michael Rocco, MDsis. Planning early will helpimprove the chances thatUpdated guidelines help to determinea fistula (also known as anarteriovenous [AV] fistula),the treatment plan that's best for you.the preferred type of access,recommended unless yourstarted and allow the doctorwill be ready to use whendoctor is able to test your urine you start dialysis. A fistulato take care of other medicalto be sure that your kidneysproblems that may be presentis the best type of accessclear enough waste productsbecause of kidney disease.because they last longer andon their own.For people who receive HDhave fewer problems thanthree times a week, the recgrafts or catheters. A gortexFor individuals on PD, theommendation about howgraft should be consideredminimum amount of dialysismuch dialysis is needed hasfor dialysis access only if ayou should get has been lownot changed. The amount offistula cannot be placed. Thedialysis is based on blood work ered to achieve a weekly Kt/Vuse of catheters for dialysisof 1.7. This change is based on access should be discouragedobtained at the start and endseveral studies done in Mexico because long-term catheterof the dialysis session. Theseand Hong Kong that showednumbers show how muchuse results in a higher risk ofdialysis has cleaned your blood this lower dose of dialysis didinfections and death comparednot result in a higher rate ofof the waste products thatwith fistulas or graphs. Oncebuild up when your kidneys do death. All people on PD should a fistula is placed, the doctorhave enough dialysis to be atnot work. The reduction ratioshould examine it about sixleast at this level, and somebetween the blood urea nitroweeks later to find out if themay require levels higher than fistula is growing normallygen level at the start and end1.7 to stay healthy. Your doctor or if some additional surgeryof dialysis (the urea reductionratio or URR) should be higher will determine if you need awill be needed to make thehigher amount of dialysis. You fistula usable for dialysis. Thethan 65%, which is aboutYour stage of kidney disease is equivalent to a Kt/V (yourneed to bring your collection of guidelines inform doctors andbased on the presence of kiddialysis fluid and urine (if youdelivered dose of dialysis) ofdialysis units how to monitorney damage and your glomeru- 1.2 or more. This recommenda- make any) to the home trainthe access on a regular basislar filtration rate (GFR), which tion is based on a study calleding unit at least three times ato allow them to find and fixis a measure of your level ofyear to help determine if youthe HEMO Study. This studyproblems as early as possiblekidney function. Thus, theare getting enough dialysis.was done in more than 1,800to keep the access from failing.treatment of your kidney dispeople in the United Statesease is based on your level ofwho received HD three timesWhether you receive HD orare on PD, it is important foryou to work with your doc"Whether you receive HD or are on PD, it istor to be sure that your bloodimportant for you to work with your doctorpressure is under good control. Blood pressure controlto be sure that your blood pressure is underincludes not only taking yourblood pressure medicines, butgood control."Peritoneal Dialysisalso not eating too much saltkidney function. People with a per week and showed thator drinking too much fluid.GFR less than 30 ml per minincreasing the time for eachIf you are on HD, limitingThe dialysis unit should haveute should know about the dif- dialysis treatment by aboutyour fluid intake not onlya plan to look at the qualityferent ways to replace kidney30 to 45 minutes per sessionmakes controlling your bloodof care for all people on dialyfunction, including HD in adid not lower the death ratepressure easier, you are lesssis. Recommendations of whatdialysis center or at home, PD for people on dialysis. Therelikely to have cramps or lowto look at are included in theand kidney transplant. If your are now new recommendations blood pressure during treatguidelines. Finally, recommenGFR falls to 15 ml perthat help your doctor decidement. For those on PD, if youdations are given for childrenminute or less, regular dialyhow much dialysis you needlimit the amount of fluid youwho are on either HD or PD.sis may need to be started.if you dialyze either more ordrink, you may need to useConsultation with a kidneyless than three times perfewer dialysate bags withEvaluation and treatment ofdoctor (nephrologist) will helpweek. Getting HD less thana high dextrose or sugaranemia for people on dialysisdecide when dialysis should be three times a week is notconcentration.Continued on page 12REATMENT GUIDELINESFOR HEMODIALYSIS(HD) AND PERITONEALDIALYSIS (PD) ADEQUACY,VASCULAR ACCESS ANDANEMIA (LOW RED BLOODCELL COUNT) WERE FIRSTPUBLISHED IN 1997 ANDFIRST UPDATED IN 2001.Because a number of importantstudies were done to improvetreatment for people on dialysissince 2001, new informationwas available and the NationalKidney Foundation decidedthat it was time for anotherupdate. These new guidelineswere outlined in the supplement to the July 2006 edition ofthe American Journal of KidneyDiseases (AJKD) and are highlighted below.FAMILY FOCUS Volume 16, Number 15

H E L P I N GQUALITY MEANS DIFFERENT THINGS TODIFFERENT PEOPLE. TheU.S. Office of PersonnelManagement defines “good”quality health care as doingthe right thing at the righttime in the right way forthe right person and gettingthe best possible results (1).Experiencing quality in yourlife means investing time andenergy in yourself. Ways tobegin investing are to understand and manage your disease. “Doing the right thing”belongs to both you and yourhealth care team.In 1998, the Centers forMedicare and MedicaidServices (CMS) developed EndStage Renal Disease (ESRD)Clinical Performance Measures(CPMs) based on the NationalKidney Foundation’s KidneyDisease Outcomes QualityInitiative (NKF-KDOQI ; ref.2). Sixteen CPMs were identified to measure and reportthe quality of dialysis servicesprovided under Medicare (3).However, the performancemeasures relating to bonehealth, nutrition, anemia,diabetes and blood pressureare expected outcomes for allpeople with CKD, regardlessof stage of kidney failure ortreatment. Table 1 lists several of these quality measurements (see page 7).These measurements are onlya few pieces of the puzzlerequired to achieve high quality care for you. Although yourhealth care team is responsiblefor providing the education,you need to understand eachmeasurement and how to getto your target as you go aboutyour daily activities. Of course,you should participate as ateam member to ensure thatyou are meeting your goalson a monthly basis. The tableshows a checklist to help youtrack if you met your target.6Y O U R S E L FQUALITY OF CARE: You Are in ChargeBy Jennifer Vavrinchik, MSN, RN, CNNTake charge of your health by makinghealthy lifestyle choices.If not, develop an action planwith your health care team toachieve your goals.Being faced with a chronicillness and ongoing treatmentcan be a frightening experience, especially at first if youdo not know what to expect. Itis your responsibility to applywhat you have learned toeveryday living, and in return,lessen your fears and live lifeto the fullest. Examples maybe learning new recipes for aCKD diet and savoring everya quality life. One thing thatmight help is to get involvedwith patient organizations tolearn more about your disease and how others like youmanage their daily activities.Ask yourself and your doctorand staff what changes youneed to make. Pick one or twoand work on them little bylittle. This is the essence ofself-management, which linkswith higher physical andmental functioning (4). Askyour health care team thefollowing questions throughout your care.1. HOW can I keep my qualitymeasurements in the goalrange? By medication, diet,lifestyle?2. WILL I see my laboratoryresults every month? Whowill review them with me?3. WILL someone help me withmy diet and make suggestions for menus and recipesthat are good for me?Your health care teamhas a responsibility to“do the right thing” andprovide quality care, butultimately, you are incontrol of your care.bite, learning to enjoy activities again because your energylevel has improved or goingback to work because you havelearned to manage your disease. Taking small steps eachday toward a more normaland healthy lifestyle willbring you one step closer toachieving your goals towardFAMILY FOCUS Volume 16, Number 14. WHAT help can I get withquestions about health insurance and prescription drugs?5. WHO will help me withwork and family issues? Arethere support groups for meand my family to discussthese issues?6. WHAT are my treatmentoptions? Which treatmentmodality (HD, PD or transplant) is best for me?7. WHAT kind of vascularaccess do I have and how doI care for it? Am I a candidate for a fistula?8. WILL I have access to mymedical records? Havingaccess to your medicalrecords allows for greaterknowledge and coordinationof care for both you and yourhealth care team.9. WILL my various doctorsand health care team talkto one another to coordinatemy care?The more you know aboutyour treatment and healthstatus, the better able youwill be to care for yourself andlive a quality life. Expect noless. Your health care teamhas a responsibility to “do theright thing” and provide quality care, but ultimately, youare in control of your care.Get involved with the healthcare team to set your monthlygoals. Ask questions! The bottom line is to invest in you andquality will follow.REFERENCES1. Office of Personnel Management.Federal Employees Health BenefitsGlossary. 28 April 2006. www.opm.gov/insure/health/about/glossary.asp 2. National Kidney Foundation. ClinicalPractice Guidelines. 11 June 2006. www.kidney.org 3. Center for Medicare and MedicaidServices. Clinical PerformanceMeasure (CPM) Project. 11 June2006. www.cms.hhs.gov/CPMProject 4. Curtin, R.B. Self-management,Knowledge, and Functioningand Well-being of Patients onHemodialysis. Nephrology NursingJournal 41:1286–1292, 2003.Jennifer Vavrinchik holdsa Master of Science andBachelor of Science inNursing from the University ofCincinnati. She has 18 yearsexperience in nephrology asa clinical educator, and staffdevelopment and client services professional.

C H I L D ' SYOU MAY NOT KNOWTHAT THE KIDNEYSCONTROL BLOOD PHOSPHORUS, A MINERALFOUND IN BONES. The kidneys also turn the vitamin Dthat we get in our diets into ahormone that helps our bodiesabsorb calcium, which is important for keeping bones strongand healthy.When the kidneys fail, phosphorus builds up in the bloodand levels of calcium andvitamin D fall. These changeslead to higher amounts ofparathyroid hormone (PTH),which is made by the parathyroid glands, and weaker bones(commonly known as rickets).The medical term for thiscondition is renal osteodystrophy, which is one of the majorreasons children with chronickidney disease may not grownormally.The signs and symptoms ofrenal osteodystrophy are listedin Table 1. Fortunately, bloodtests and X-rays can be used tocheck for signs of renal osteodystrophy, and medicationssuch as phosphate binders andspecial forms of vitamin D canbe used to treat it. Althoughpediatric nephrologists haveknown about renal osteodystrophy for many years, they didnot agree on guidelines for howto watch for it and treat it.This changed in October of2005, when the NationalKidney Foundation’s KidneyDisease Outcomes QualityInitiative published BoneMetabolism and Disease inChildren with Chronic KidneyDisease as a supplement to theAmerican Journal of KidneyDiseases. This publication isthe result of three years’ workby eight volunteer experts inkidney disease, pediatrics,nutrition, bone and mineralmetabolism disorders whoreviewed scientific evidenceH E A L T HYour Child's HealthBy Joseph T. Flynn, MD, MSNew bone disease guidelines for children highlight the importance of early interventionpublished in medical journalsbefore writing the guidelines.Many aspects of renal osteodystrophy in children are highlighted in the new guidelines.For example, the guidelinespoint out that osteodystrophybegins early in the course ofCKD in children and thatGood nutrition, especiallygetting enough calciumand vitamin D, and avoiding too much phosphorus,is the first step recommended by the guidelines inmanaging osteodystrophy.children must have enoughcalcium in their diets in orderto grow and develop properly.The importance of vitamin Dand proper nutrition in childrenwith CKD is stressed, as is theneed to check levels of calcium,phosphorus and PTH regularly.As seen in Table 2 (p. 11), thenew guidelines vary for different stages of CKD. Thisis because some of the goalsand treatments used for earlier stages of CKD are different than those for people ondialysis, and vice versa. Forexample, treating the problemof not enough dietary vitaminD is helpful in mild to moderate CKD Stages 2, 3 and 4,but probably is not helpful inCKD Stage 5, when dialysisis needed.Good nutrition, especially getting enough calcium and vitamin D, and avoiding too muchphosphorus, is the first steprecommended by the guidelinesin managing renal osteodystrophy.

be more likely to feel better and live longer. For example, your care team should do a monthly blood test to find your delivered dose of dialysis. This tells whether you are getting the right amount of dialysis to remove enough wastes from your blood and keep you healthy. Your result