The Essential Role of the Social Worker in Home Hemodialysis: The Essential Role of the Social Worker in Home Hemodialysis © 2005 Medical Education Institute, Inc., Madison, WI Made possible by an unrestricted educational grant from Aksys, Ltd.: Home feels better.


Which Dialysis Would You Choose?: Which Dialysis Would You Choose? …to live as long as possible …to feel your best …to maintain your lifestyle …to stay active …to spend time with your family …to keep your job and insurance …to enjoy your life


Dialysis Modalities 2002308,910 Dialysis Patients: Dialysis Modalities 2002 308,910 Dialysis Patients USRDS 2004 Annual Data Report, Table D.1, p. 365.


Why Do So Many Patients Dialyze In-center, When…: Why Do So Many Patients Dialyze In-center, When… …the patient population is continuing to grow …there is a nursing shortage …in-center hemo 3 times a week is not physiologic …in-center hemo has the most restricted diet & fluids …symptoms limit patients’ work and activities ? ? ? ? ?


Today You’ll Learn…: Today You’ll Learn… History of home hemo Current home choices Benefits of home hemo to patients & clinics Barriers to home hemo How social workers can help


History Of Home Hemo: History Of Home Hemo 1961: first clinic (Seattle) 1962-1971: “Life and Death” committees 1964: first home hemo 1970: 90% WA patients on home hemo 1973: Medicare covers ESRD 1973-1980: home hemo declined from 40% to 4.6% Today: <1% do home hemo Drake-Willock machine with Kiil dialyzer early 1960s Blagg, CR. The history of home hemodialysis: A view from Seattle. Home Hemodial Int. 1:1-7, 1997.


Interest in Longer/More Frequent Home Hemo Is Increasing: Interest in Longer/More Frequent Home Hemo Is Increasing New machines New treatments: short daily, long nocturnal Fewer diet, fluid, schedule limits High patient satisfaction Better patient outcomes


Current Modalities: Conventional Home Hemo: Current Modalities: Conventional Home Hemo 3 to 5 hrs, 3-3.5 times/week Training 6-8 weeks Self-scheduled Possibly fewer diet/fluid limits May have same symptoms as in-center Trained partner needed Use any vascular access Single cannulator; access may last longer


Current Modalities:Nocturnal Home Hemo: Current Modalities: Nocturnal Home Hemo 7-8 hours, 3-6 nights/week Training usually 4-8 weeks No diet or fluid limits Few symptoms during or between sessions Trained partner may be needed Uses any vascular access Single cannulator; access may last longer


Current Modalities:Short Daily Home Hemo: Current Modalities: Short Daily Home Hemo 2-2.5 hours 6 times/week Self-scheduled; easy to fit in short treatments Training 2-3 weeks Few diet/fluid limits, symptoms Trained partner may be needed Uses any vascular access Single cannulator; access may last longer


Aksys PHD for Daily Dialysis: Aksys PHD for Daily Dialysis Set up in 20-30 minutes Easy-to-use touch screen F-80 dialyzer and lines last up to 30 treatments Makes ultrapure dialysate Internal RO filter External water pre-treatment if needed Clean up in 20 minutes Heat disinfects and prepares for next dialysis over 15 hrs Short-term battery backup Cost of electricity and water: $1.20/day Needs 20 amp dedicated GFCI circuit


Health Benefits of Longer or More Frequent Hemo: Health Benefits of Longer or More Frequent Hemo Better adequacy1 Improved nutritional status1 Better BP and volume control1 Better anemia management1 Better calcium/phosphorus1 Fewer medicines2 No increase in access problems2 Improved quality of life2 Fewer hospitalizations2 Possibly better survival2 1Lindsay R, et al. London, Ontario Daily/Nocturnal Dialysis Study. Semin Dial. 17(2):85-91, 2004. 2Ting et al. Long-term study of high-comorbidity ESRD patients converted from conventional to short daily hemodialysis. Am J Kidney Dis. 42(5):1020-1035, 2003.


Psychosocial Benefits ofLonger/More Frequent Hemo: Psychosocial Benefits of Longer/More Frequent Hemo More control Less disruption of day Less travel to clinic Better sleep More hours for work/play More time with family or friends; less time with sick or dying people Better sexual functioning Twardowski ZJ. Daily dialysis: is this a reasonable option for the new millennium? Nephrol Dial Transplant 16: 1321-1324, 2001.


Slide14: Improving Patient Outcomes Follow- through by Patients Life Options Model: Healthcare Equation


Slide15: Improved Self-Management A week in the life of a dialysis patient… In-center HD PD or Home Hemo


Self-management Domains: Self-management Domains Suggestions to providers Information seeking Patient knowledge (MCS) Self-care during dialysis (PCS) Shared responsibility in care (PCS) Selective symptom mgmt (PCS, MCS) [Adversarial] Self-advocacy (MCS) Impression management (PCS,MCS) Curtin RB et al. Self-management, knowledge, and functioning and well-being of patients on hemodialysis.. Nephrol Nurs J 31(4), 2004:378-387


Slide17: Better Functioning & Well-Being (FWB) Physical Component Summary: PCS Mental Component Summary: MCS


Slide18: FWB Scores Predict Morbidity & Mortality 1 Point  in MCS Mortality rate 2% Hosp. rate 2% Lowrie EG et al. Medical Outcomes Study Short Form-36: A consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis 41(6):1286-1292, 2003. 1 Point  in PCS Mortality rate 2% Hosp. rate 1%


Employment and FWB: Employment and FWB Employment predicted PCS and MCS in African American CKD patients Kusek et al. Cross-sectional study of health-related quality of life in African Americans with chronic renal insufficiency: The African American Study of Kidney Disease and Hypertension Trial. Am J Kidney Dis 39(3):513-524, 2002


Slide20: Working Benefits Patients Greater independence Higher self-esteem More socialization Less depression Greater income May have commercial health insurance coverage Better adherence due to higher income and insurance


Age: All Incident ESRD Patients: Age: All Incident ESRD Patients 52% of ESRD patients are < 65 USRDS 2003 Annual Data Report, Table C4, Incident ESRD Patients 1995-2002 N= 607,329


Slide22: Job Loss with Kidney Failure Pts Age 18-55 at 90 Days Post Initiation, May 1995-June 2001 USRDS Special Data Request 2003


Slide23: Employment & EGHP Status Patients Age 18-55, May 1995-June 2001 Chi-square = 1094.38122097901, df = 1, p ≤ 0.001 USRDS Special Data Request 2003


Slide24: Clinic Revenue Per Patient/Year Medicare-only vs. EGHP


Hurdles to Longer/More Frequent Home Hemo: Hurdles to Longer/More Frequent Home Hemo Lack of awareness of home options Patient misperceptions Staff misperceptions Financial barriers


Are Patients Told All Options?: Are Patients Told All Options? Before their first treatment Patients told of in-center hemo: 89.7% In-center patients told of HHD: 24.6% PD patients told of HHD: 21.2% USRDS 1997 Annual Data Report, USRDS Dialysis Morbidity and Mortality (Wave 2), p. 53.


Who Chooses the Modality?: Who Chooses the Modality? Joint or patient-led decision: 84% of new home dialysis patients 47% of new in-center HD patients Medical team led decision: 53% of new in-center HD patients 16% of new home dialysis patients USRDS 1997 Annual Data Report, USRDS Dialysis Morbidity and Mortality (Wave 2), p. 54.


Patient Misperceptions: Patient Misperceptions You need a professional to do hemodialysis I can’t do needle sticks Insurance won’t pay or home hemo costs more Home hemo burdens the patient and family more


Patient Misperceptions: Patient Misperceptions No schedule control Travel to/from clinic Time off work/school No choice of stick-er Living w. symptoms Strict diet/fluid limits Other patient deaths Travel planning… Emergency worries Order/store supplies Space for equipment Wiring/plumbing changes Putting in needles Doing treatments Alarms at night Troubleshooting Dialysis emergencies In-Center Burdens Home HD Burdens


Staff Misperceptions: Staff Misperceptions Professionals need to do HD Machines are too complex Patients are too: Old Uneducated Non-technical Unmotivated Liability risk is too high


What Social Workers Can DoTo Increase Awareness: What Social Workers Can Do To Increase Awareness Help patients believe in their own ability Inform patients about all treatment options Tell patients about Home Dialysis Central: Message boards Find a Center Links and resources Patient stories Medicare FAQs


www.homedialysis.org: www.homedialysis.org


Hurdles to Overcome: Hurdles to Overcome Doctors and nurses need home hemo experience Clinics need examples of policies and procedures Staff/patients need home hemo mentors Staff/patients must believe home hemo clinics need not be “around the corner”


Messages Social WorkersCan Give Patients: Messages Social Workers Can Give Patients “You have options besides in-center hemo.” “You can feel better with more frequent dialysis.” “You can work more easily on home hemo.” “You can get Medicare sooner with home dialysis.” “AKF can help you pay set-up costs.”


Messages Social Workers Can Give Administrators: Messages Social Workers Can Give Administrators Patient outcomes are better with longer/more frequent dialysis Offering longer/more frequent dialysis can attract working patients Commercial payers may pay more for each treatment and/or for more weekly treatments than Medicare


Messages Social Workers Can Give Staff: Messages Social Workers Can Give Staff Encourage staff to ask about home hemo Techs learn dialysis: patients can, too Assess all patients for home hemo, especially: Patients changing from PD Working patients Students Patients who live far away


How Social Workers Can Advocate for Home Hemo: How Social Workers Can Advocate for Home Hemo Advocate with doctors, showing clinical benefits Advocate with administrators, showing financial benefits Advocate with patients, showing clinical & psychosocial benefits Advocate with Congress, showing cost savings and patient benefits


What Patients Say About Daily Home Hemo: What Patients Say About Daily Home Hemo "I feel so much better. I dialyze seven times a week." Dadi Ding “People who want to do home hemodialysis should have the option.” KJoy Kemper "People shouldn't live to dialyze but to have a life and do the things they were meant to do." Bill Peckham


Help Your Patients Benefit from Longer/More Frequent Dialysis: Help Your Patients Benefit from Longer/More Frequent Dialysis Tell them… They can feel better They may live longer New home machines make HHD easier