Life Options History & Philosophy: Innovation in Motion
Rehabilitation—returning individuals to their previous level of functioning, preferably employment—is the purpose of dialysis,1 and the reason Medicare began to pay for it in 1973.2 As Senator Hartke testified at the time, "Sixty percent of those on dialysis can return to work but require retraining, and most of the remaining 40% require no retraining whatso-ever. These are people who can be active and productive, but only if they have the life-saving treatment they need so badly."2
By the early 1990s, though, despite improved technology and the breakthrough introduction of EPOGEN®, U.S. dialysis morbidity and mortality far exceeded that of Europe or Japan.3 Dialysis alone, even with EPO, was not enough to rehabilitate patients. Many were "functionally debilitated."4 Outcomes for elderly minority patients were termed "dismal."5 Poor outcomes, then and now, threaten ongoing ESRD funding: why spend billions to keep a small group of end-organ failure patients barely alive?
Dr. R. Alexander Vachon summed up the challenge in a 1992 article, Rehab: Should We Just Give Up? He noted that 20 years after creation of the Medicare ESRD Program, there is "no well-developed field of renal rehabilitation research or practice in the United States, and even its scope is poorly defined," adding, "the history of renal rehabilitation is one of false starts and initiatives begun with great enthusiasm, but with little permanent result."6
Bridging the Barriers
It was clear that a long-term, strategic effort to define, study, and improve rehabilitation was needed to change practice and improve patient outcomes. In 1993, Amgen visionaries provided grant support to the non-profit Medical Education Institute (MEI) to create Life Options, a program dedicated to helping people live long and live well with kidney disease. Life Options suited Amgen's focus on improving patient longevity and quality of life.
Life Options began by recruiting a diverse panel of thought leaders—doctors, patients, nurses, social workers, researchers, physical therapists, dietitians, ESRD Network Directors, administrators, vocational rehabilitation specialists, and industry reps—and charging them with the task of identifying rehab barriers and solutions. They are the Life Options Rehabilitation Advisory Council (LORAC).
The LORAC first identified core principles of rehab called the "5 Es"—encouragement, education, exercise, employment, and evaluation. These provided a common language and defined a new paradigm and research agenda. In 1994, the LORAC published a white paper, Renal Rehabilitation: Bridging the Barriers, documenting its findings and recommendations.7
From Strategy to Action
At face-to-face meetings, LORAC members shared progress, ideas, and synergies. Supported by staff, the group outlined a Donabedian structure-process-outcomes model,8 a research agenda, and a systematic approach to changing behavior among the renal community to support rehabilitation, including such tactics as:
- Holding Exemplary Practices contests, with awards given at national meetings
- Conducting qualitative and quantitative studies among patients and professionals
- Publishing research results—and sending out press releases
- Making rehab-focused presentations at regional and national meetings
- Inserting rehab perspectives into the national dialogue, particularly with HCFA (CMS)
- Writing articles for organizational newsletters and opinion pieces for trade publications
- Launching a Life Options website (the height of innovation, circa 1995!)
- Mailing a newsletter to keep rehab issues front-and-center among 25,000+ recipients
- Disseminating free, research-based materials to operationalize rehab9,10,11,12,13,14,15,16,17
- Offering free technical support to the community via a toll-free hotline
Even without public relations, these approaches, honed and refined over more than a decade, have successfully achieved diffusion of rehab innovation in the renal community.
Defining and Measuring Rehab
Life Options holds that good clinical care is necessary—but not sufficient—to improve patient outcomes. Bridging the Barriers clinical recommendations formed the basis of the NKF-DOQI Guidelines,18 also administered by the MEI.19 Meanwhile, Life Options research began with a national, random study which found that, while 73% of working-age patients had been employed prior to ESRD, just 24% were still working on dialysis, though another 21% said they were "able and willing" to work.20
The Life Options booklet Employment: A Kidney Patient's Guide To Working and Paying for Treatment, updated in 2003 with support from the Forum of ESRD Networks, was developed in response to patients' need for work support.
For the 50% of patients who are working-age, a paying job is the rehab gold standard. But the "5 Es" paradigm broadened the concept of rehab to also focus on physical activity, emotional well-being, education, and evaluation of rehab efforts. Four Exemplary Practices contests identified best practices in each of the 5 Es. This enabled Life Options to develop a report card to measure rehab elements; the Unit Self-Assessment Tool (USAT). ESRD Networks 3 and 6, and Renal Care Group, sent a USAT to every center for several years. These data prove Life Options has changed behavior: While fewer than 1% of centers reported any rehab in 1993,21 by 2002 rehab penetration was 97% for Network 622 and 100% for RCG.23
Listening to Patients
Life Options aims to deeply understand patients' experiences. In the 1980s and '90s, dialysis researchers looked at quality of life with the Karnofsky Performance Status Scale, a 10-item staff rating of patients' physical activity level ranging from "dead" (0 points) to "normal" (100 points). Life Options took a radically different approach: who better to say how kidney disease affects patients than patients themselves?24
We conducted three series of 30 phone interviews,25,26 in which we learned that fatigue and dialysis time commitments took a tremendous toll, and that virtually all patients had two key questions when they learned their kidneys were failing:
- How long will I live?
- How well will I live?
These findings were translated into Life Options Keys to a Long Life materials—a video, audiotapes, posters, fact sheets, Patient Interest Checklists, and a goal-setting worksheet.
Learning directly from patients also informed Life Options' approach to a core nephrology question: Why, when some of the first U.S. patients to go through Life and Death committees and start dialysis in the mid-1960s are still alive nearly 40 years later, does our annual dialysis mortality rate exceed 22%?
Why is the gap between potential and actual survival so enormous? LORAC members decided to study long-term survivors. Dr. Roberta Braun Curtin conducted face-to-face qualitative interviews with 18 patients who'd survived on hemodialysis for at least 15 years. She found that these survivors kept a core sense of self that was unchanged by the illness,27 and that they were active, comprehensive self-managers of their disease and their lives.28
The Self-Management Path
To self-manage, the long-term dialysis survivors learned how dialysis worked, what their medications were for, how to adjust their diet to keep lab tests in the target range, how to calculate fluid goals—even how to operate the machine.
Seminal as the Life Options Patient Longevity Study was, though, qualitative findings can't be generalized. So, Life Options did a national, random, quantitative follow-up to validate the results. The ESRD Self-management Study looked at self-management and functioning and well-being (FWB), physical and mental functioning assessed by the SF-36, a paper-and-pencil tool completed by patients. The results: more dialysis knowledge and participation in self-management correlated with higher FWB.29
This was a critical finding. Why? Because FWB independently predicts morbidity and mortality—as well as Kt/V.30,31,32 In fact, each 1-point gain in physical or mental functioning (FWB) reduces the relative risk of death by 2% and the risk of hospitalization by 1-2%.31 Some interventions— like exercise—can improve FWB.33
The Patient's Role in Chronic Disease
The importance of self-management in chronic disease has face validity—it makes sense. In an acute illness, like appendicitis, patients relinquish control of their health to doctors and resume it when the crisis is over. Acute illness is self-limiting: it ends, or results in death; the goal is cure. The patient's role is to comply with orders. The staff's role is to care for the patient.
But a chronic illness—like kidney disease—needs a different model of care. Chronic disease never goes away, so the goal is not cure, it is adaptation and symptom management. The patient's job is not to comply: since patients are on their own vastly more than they are medically supervised (8% of the time for in-center hemo patients), their job is to self-manage—to follow their treatment plans, maintain their own safety, and manage symptoms. And the staff's role is not merely to care for patients—it is also to prepare them for an extensive and vital self-management job. Thus, Life Options rehab focus evolved from the 5 Es to patient self-management.
Kidney School™, Life Options' award-winning tailored online kidney learning center, is a how-to curricula to teach self-management knowledge and skills to patients with stages 3, 4, and 5 CKD. Offered free, 24 hours a day, visited by nearly 9,000 unique users per month, and downloaded more than 72,000 times in 2005, Kidney School is a truly national U.S. CKD education program.
Collaboration and Partnership
From the start, Life Options has relied on building working relationships with other organizations to further messages of rehab and self-management. Collaborative efforts with CMS, ESRD Networks, AAKP, AKF, NKF, ANNA, DaVita, DCI, Fresenius Medical Care, Gambro, Renal Care Group, KCP, NKDEP, NKUDIC, NRAA, RPA, and RSN have helped to move forward Life Options policy, research, and presentations.
In particular, Life Options successfully advocated to add employment and insurance fields to the CMS-2728 dialysis intake form, enabling research on factors linked with patient job loss.34 We've helped train CMS dialysis center surveyors, commented on the ESRD Conditions for Coverage and the Network Statement of Work, contributed to a CKD training manual for vocational rehab counselors, conducted research with Networks and Large Dialysis Organizations, and much more.
As a long-term, strategic program to improve patient longevity and quality of life, Life Options has been on a consistent path since 1993, and that path continues before us, with three primary goals:
- Shift the paradigm of nephrology care toward a chronic disease model that supports patient self-management. Acknowledging that ESRD is a chronic disease and must be managed as such will change staff's orientation to patients. Instead of being passive recipients of care, more patients will learn to "own" their disease and become partners in their own care, which can improve their outcomes and make the staff's jobs more rewarding.
- Measure FWB as a quality care outcome. The dialysis outcomes measures in use now— anemia, adequacy, access, blood pressure—are all strictly clinical. None of them gets at the true, rehabilitation, purpose of dialysis. Assessing and improving FWB will ensure that we are looking at the whole patient—not just his or her blood.
- Intervene in stages 3, 4, and 5 CKD to help working-age patients retain their jobs. A focus on job retention brings us back around to the purpose of the Medicare ESRD Program. Currently, half of all new patients are working-age,35 but only 23% of them still have their jobs at the start of dialysis.36 Working improves patients' self-esteem and income.37 Employer group health plans pay twice as much per patient/year as Medicare26, which helps dialysis providers stay afloat. And if just 10,000 extra patients kept working, the savings to Medicare would reach nearly half a billion dollars a year.38
In 13 years, Life Options has made tremendous strides, won numerous awards—including a Golden Nephron Award, NN&I Quality of Life Award, Golden Web Award, and National Health Information Award (Gold level)—and our efforts in research, education, and patient advocacy continue. The nephrology community benefits from Life Options' patient-centric approach to care.
We will know that our work is done when people with kidney disease are routinely able to lead full and active lives.
- Domoto DT. Rehabilitation of the End-stage Renal Disease patient: Are the right questions being asked? (Editorial). Am J Kidney Dis Mar;23(3):467-468, 1994
- Rettig RA. Origins of the Medicare kidney disease entitlement: The Social Security Amendments of 1972. Biomedical Politics (1991). National Academy of Sciences.
- Held PJ, Carroll CE, Liska DW, Turenne MN, Port FK. Hemodialysis therapy in the United States: what is the dose and does it matter? Am J Kidney Dis Dec;24(6):974-80, 1994
- Ifudu O, Paul H, Mayers JD, Cohen LS, Brezsnyak WF, Herman AI, Avram MM, Friedman EA. Pervasive failed rehabilitation in center-based maintenance hemodialysis patients. Am J Kidney Dis Mar;23(3):394-400, 1994
- Ifudu O, Mayers J, Matthew J, Tan CC, Cambridge A, Friedman EA. Dismal rehabilitation in geriatric inner-city hemodialysis patients. J Amer Soc Nephrol Jan 5;271(1):29-33, 1994
- Vachon RA. Rehab: Should we just give up? Nephrol News Issues July;6(7):25,29-30,45, 1992
- Life Options Rehabilitation Advisory Council. Renal rehabilitation: Bridging the barriers. Medical Education Institute, 1994
- Oberley ET, Sadler JH, Alt PS. Renal Rehabilitation: Obstacles, Progress, and Prospects for the Future. Am J Kidney Dis April;35(4):S141-147, 2000
- Life Options Rehabilitation Advisory Council. Bridging the barriers: For patients and their families. Medical Media Associates, 1994
- Life Options Rehabilitation Advisory Council. New life, new hope: A book for families & friends of renal patients. Medical Media Associates, 1997
- Life Options Rehabilitation Advisory Council. Building quality of life: A practical guide to renal rehabilitation. Medical Education Institute, 1997
- Painter P. Exercise for the dialysis patient: A guide for the dialysis team. Medical Education Institute, 1995
- Life Options Rehabilitation Advisory Council. Exercise for the dialysis patient: A prescribing guide. Medical Education Institute, 1995
- Painter P, Blagg CR, Moore GE. Exercise for the dialysis patient: A guide for the nephrologist. Medical Education Institute, 1995
- Painter P. Exercise: A guide for people on dialysis. Medical Education Institute, 1995
- Life Options Rehabilitation Advisory Council. Exercise for the dialysis patient: A video guide for the dialysis team. Medical Education Institute, 1995
- Life Options Rehabilitation Advisory Council. Feeling better with exercise: A video guide for people on dialysis. Medical Education Institute, 1995
- Conversations with Donna Mapes, DNSc, MS; Life Options and DOQI founder, 2001
- Eknoyan G, Levin N. Foreword, NKF DOQI Guidelines, 1997
- Curtin RB, Oberley ET, Sacksteder P, Friedman A. Differences between employed and nonemployed dialysis patients. Am J Kidney Dis April;27(4):533-40, 1996
- Life Options Exemplary Practices competitions, 1994-1997
- Schrag WF. Using a self-assessment tool to improve rehabilitation programming. Nephrol News Issues Mar;17(4):46-8, 2003
- ESRD Network 6 2003 Annual Report
- Sadler JH. Trying to measure quality? Ask the patient. Nephrol News Issues Oct;10(10):19,28, 1996
- Juhnke J, Curtin RB. New study identifies ESRD patient education needs. Nephrol News Issues May 2000
- Schatell D, Thompson N, Oberley E. Life Options patient opinion study identifies keys to a long life for dialysis patients. Nephrol News Issues Apr;13(4):24-6, 1999
- Curtin RB, Mapes D, Petillo M, Oberley E. Long-term dialysis survivors: A transformational experience. Qual Health Res May;12(5):609-24, 2002
- Curtin RB, Mapes DL. Health care management strategies of long-term dialysis survivors. Nephrol Nurs J Aug;28(4):385-92,discussion 393-4, 2001
- Curtin RB, Sitter DC, Schatell D, Chewning BA. Self-management, knowledge, and functioning and well-being of patients on hemodialysis. Nephrol Nurs J Jul-Aug;31(4):378-86,396;quiz 387, 2004
- DeOreo PB. Hemodialysis patient-assessed functional health status predicts continued survival, hospitalization, and dialysis-attendance compliance. Am J Kidney Dis Aug;30(2):204-12, 1997
- Lowrie EG, Curtin RB, LePain N, Schatell D. Medical outcomes study short form-36: a consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis Jun;41(6):1286-92, 2003
- Knight EL, Ofsthun N, Teng M, Lazarus JM, Curhan GC. The association between mental health, physical function, and hemodialysis mortality. Kidney Int May;63(5):1853-51, 2003
- Painter P, Carlson L, Carey S, Paul SM, Myll J. Physical functioning an dhealth-related quality of life changes with exercise training in hemodialysis patients. Am J Kidney Dis Mar;35(3):482-92, 2000
- Witten B, Schatell DR, Becker BN. Relationship of ESRD working-age patient employment to treatment modality. Poster presented at the American Society of Nephrology meeting, St. Louis, MO, October 31, 2004. (Abstract) J Am Soc Nephrol. 2004; 15:633A.
- U.S. Renal Data System, USRDS 2005 Annual Data Report: Atlas of End-Stage Renal Disease in the United States, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2005
- Witten B, Schatell D, Becker BN. Relationship of ESRD Working-age Patient Employment to Treatment Modality. Poster presented at the American Society of Nephrology meeting, St. Louis, MO, October 31, 2004.
- Blake C, Codd MB, Cassidy A, O’Meara YM. Physical function, employment and quality of life in end-stage renal disease. J Nephrol 13(2):142-9, 2000
- Schatell D, Witten B. Kidney patient job retention: The next rehabilitation frontier. Nephrol News Issues Apr 2006