quality of life and patient satisfaction: esrd managed ... · assess patient satisfaction and...

To study the ef fects of managed care ondialysis patients, we compared the quality oflife and patient satisfaction of patients in amanaged care demonstration with threecomparison samples: fee-for-service (FFS)patients, managed care patients outside thedemonstration, and patients in a separatenational study. Managed care patients wereless satisfied than FFS patients about accessto health care providers, but more satisfiedwith the financial benefits (copayment cov-erage, prescription drugs, and nutritionalsupplements) provided under the demon-stration managed care plan (MCP). After 1year in the demonstration, patients exhibit-ed statistically and clinically significantincreases in quality of life scores.

INTRODUCTION

It has been postulated that an MCP canprovide better and more comprehensivehealth care at a lower cost (Starr, 2000).However, it has also been stated that themain disadvantage of MCPs is the restric-tive nature of their health care manage-ment approaches (Reschovsky, Kemper,and Tu, 2001). For instance, patients are

confined to a specific group of health careproviders. This has often caused great dis-satisfaction among patients who desire orneed greater flexibility in their health careplan. Improving and maintaining patientsatisfaction and quality of life have becomeimportant treatment goals in end stagerenal disease (ESRD) (Kutner, Brogan andKutner, 1986). Patient quality of life, as mea-sured by the SF-36® (Medical OutcomesTrust, Inc., 2003), has been shown to pre-dict morbidity, hospitalization, and mortali-ty in dialysis patients (Hays et al., 1994).This investigation evaluates patient satisfac-tion and quality of life in the ESRD man-aged care demonstration.

The demonstration was conducted from1996 to 2001 at three different sites: HealthOptions, Inc. (HOI), a subsidiary of BlueCross®/Blue Shield® of Florida; KaiserPermanente Southern California Region(Kaiser); and Xantus Health Care Corpor-ation in Tennessee. Only the Florida andCalifornia sites remained operational forthe duration of the demonstration. Enroll-ment was strictly voluntary. Recruitmentmaterials were mailed by CMS to adult,Medicare primary, ESRD patients residingin the demonstration service area counties.The demonstration sites were also givenopportunities to directly recruit ESRDpatients and staff at local dialysis facilities.Patients were allowed to disenroll at anytime.

The two active demonstration sites werebased on different models of care. Kaiserwas a large closed-system plan for specialists

HEALTH CARE FINANCING REVIEW/Summer 2003/Volume 24, Number 4 45

Trinh B. Pifer, Jennifer L. Bragg-Gresham, Dawn M. Dykstra,and Philip J. Held are with University Renal Research andEducation Association. Jennifer R. Shapiro is with the Centersfor Medicare & Medicaid Services (CMS). Caitlin CarrollOppenheimer and Daniel S. Gaylin are with National OpinionResearch Center. Nancy Beronja is with The Lewin Group.Robert J. Rubin is with Georgetown University School ofMedicine. The research in this article was funded under HCFAContract Number 500-95-0059. The views expressed in this arti-cle are those of the authors and do not necessarily reflect theviews of the University Renal Research and EducationAssociation, CMS, National Opinion Research Center, TheLewin Group, or Georgetown University School of Medicine.

Quality of Life and Patient Satisfaction: ESRD ManagedCare Demonstration

Trinh B. Pifer, M.P.H., Jennifer L. Bragg-Gresham, M.S., Dawn M. Dykstra, Jennifer R. Shapiro, M.P.H.,Caitlin Carroll Oppenheimer, M.P.H., Daniel S. Gaylin, M.P.A., Nancy Beronja, M.S.,

Robert J. Rubin, M.D., and Philip J. Held, Ph.D.

and inpatient care. In contrast to Kaiser’sgroup-model structure, HOI relied on con-tracts with an independent network ofproviders to provide patient care. Bothplans were based on a multidisciplinaryteam approach to patient-centered caremanagement. Each enrollee was assignedto a team including a nephrologist, a casemanager, a renal social worker, a dietitian,and a pharmacist; other relevant providersand specialists were included as needed. Inmost cases, the nephrologist also servedas the patient’s primary care provider inthe MCP. Case managers were expected tobe in daily contact with the nephrologistand coordinate the multidisciplinary team.Responsibilities of the case managersincluded monitoring patient care and pro-moting quality improvement, coordinatingand managing patient needs, providingearly intervention, and educating patients.The Kaiser case management team alsoincluded transplant coordinators, who pro-vided case management for all transplantpatients and worked to obtain transplantsfor qualified patients as quickly as possible.The coordinator also provided patient edu-cation and long-term post-transplant fol-lowup. Additional benefits provided byboth plans included coverage for prescrip-tion drugs, other copayments, and nutri-tional supplements. Oppenheimer etal.(2003) fully describes marketing, enroll-ment practices, and benefit offerings in thedemonstration.

Patient satisfaction was assessed fromquestions designed to measure satisfactionwith services provided by dialysis facilityand staff, and primary care physician. Thequestions also examined patient satisfac-tion with the benefits provided by thedemonstration plans and the reasons whypatients chose to enroll or not enroll.Patient quality of life was assessed usingthe SF-36® instrument, which has been val-idated to capture physical and mental

health scores for the ESRD patient popula-tion. Both patient satisfaction and quality oflife data were collected on a questionnairethat was administered to demonstrationpatients and comparison groups.

METHODS

Sampling and Data Collection

Baseline data were collected on 1,479demonstration patients, and followup datawere collected on 750 one year after enroll-ment. The smaller sample size at followupwas due to data collection and budgetarylimitations, not patient attrition or disen-rollment. This smaller sample was ran-domly selected from the larger baselinesample and a power analysis determinedthat this was the smallest sample size need-ed to detect a 5-point difference in qualityof life scores.

For the evaluation of patient satisfaction,data on two different comparison groupswere collected in a similar fashion andfrom the same dialysis facilities as thedemonstration. The first comparison groupconsisted of 190 FFS patients and the sec-ond group was a sample of 190 managedcare patients not enrolled in the demon-stration—non-demonstration managed care(NDMC). Both of these samples werematched to the demonstration patients onage, race, and time since onset of ESRD.

In addition to the comparison groups, thequality of life analysis also compared demon-stration patients to those from the DialysisOutcomes and Practice Patterns Study(DOPPS), a nationally representative sam-ple of hemodialysis patients in the U.S.(Young et al., 2000). The sample of DOPPSpatients was restricted to California andFlorida (n=377 and n=539, respectively).

As part of the evaluation data collection,experienced local nephrology personnelwho were not part of the patient’s dialysis

46 HEALTH CARE FINANCING REVIEW/Summer 2003/Volume 24, Number 4

or transplant unit staff abstracted baselinemedical record data and conducted in-per-son patient interviews on quality of life. Apatient questionnaire (SF-36®) was used toassess patient satisfaction and quality oflife and other targeted questions. Thequestionnaire was administered to demon-stration patients in person by trained datacollectors, usually while they were at thedialysis facility. For the DOPPS compari-son sample, quality of life data were takenfrom patient questionnaires collected forall DOPPS patients. These forms were sim-ilar to the demonstration questionnaire andincluded the SF-36®, but were generallyself-administered. The differences in themethod of survey administration (self ver-sus interviewer) may affect the completionrates and responses, but this was notadjusted for in the analyses.

Outcome Measures

Patient satisfaction measures from thequestionnaire were grouped into threemajor categories: (1) reasons for joiningthe demonstration health plan, includingcost of outpatient drugs, cost of copay-ments, and recommendation of doctor; (2)satisfaction with health care providers andservices, including dialysis staff, medicalteam (e.g., primary physician, social worker,dietitian, and transplant medical team),dialysis facilities, and hospitals; and (3) sat-isfaction with health plan benefits, includ-ing copayment/cost requirements, med-ication costs, and access to nutritional sup-plements.

Patient quality of life was assessed usingthe SF-36®—a comprehensive short-formwith only 36 questions—which yields an 8-scale health profile as well as summarymeasures of health-related quality of life.As is widely documented, the SF-36® hasproven useful in monitoring general andspecific populations, comparing the bur-

den of different diseases, differentiatingthe health benefits produced by differenttreatments, and in screening individualpatients. The two measures of the SF-36®

are the physical and mental componentsummary scores. Each of these comprisesfour related subscales: physical function-ing, role—physical, bodily pain, and gener-al health (physical component summaryscore); and vitality, social functioning,role—emotional and mental health (mentalcomponent summary score). This articlepresents results for each subscale as wellas the two summary measures.

Statistical Analysis

All analyses were restricted to hemodial-ysis patients in the demonstration and allcomparison groups. Chi-square statisticswere used to test differences in propor-tions of satisfaction responses between thedemonstration group at baseline versus 1year followup and the demonstration groupat followup versus the FFS and NDMCgroups. The demonstration followup groupwas used in comparisons with the FFS andNDMC groups because the demonstrationpatients would have less experience (and aless accurate perception of satisfaction)with the demonstration at baseline ratherthan after 1 year. T statistics were used totest differences in mean quality of lifescores from baseline to 1-year followupwithin the demonstration and the DOPPSsamples. Statistical significance was inter-preted at the 0.05 level for a two-tailed test.

Multiple linear regression analysis wasused to detect differences in the adjustedquality of life scores between the managedcare demonstration and the DOPPS sam-ple. These quality of life models wereadjusted for patient age, sex, race, and his-tory of the following conditions: coronaryartery disease, congestive heart failure,cerebrovascular disease, peripheral vascular


disease, hypertension, diabetes, chronicobstructive pulmonary disease, cancer,smoking, alcohol abuse, drug abuse, andHIV. These models were also adjusted forpatient mobility status, nursing home sta-tus, albumin, time since onset of ESRD,body mass index, and visual determinationof undernourishment. All statistical estima-tion was performed using SAS® version 8.0(SAS® Institute Inc., 1997).

RESULTS

The response rates for the patient ques-tionnaire were 85 percent for the demon-stration patients at baseline, 84 percent forthe demonstration patients after 1 year inthe demonstration, and 98 percent for theFFS and NDMC comparison groups. Thehigher response rate in the comparisongroups was largely due to a more clusteredsampling and timely data collection efforts.The matched comparison groups were ran-domly selected from mostly the same dial-ysis facilities as demonstration patients,but the demonstration patients were

enrolled in a staggered manner over awider geographic region. Therefore, datacollection was more cumbersome and diffi-cult for the demonstration patients than theclustered comparison groups, resulting ina slightly lower response rate.

For the DOPPS comparison sample, theresponse rate was approximately 60 per-cent. There was concern raised about thelower response rate in the DOPPS sincehealthier patients were more likely to com-plete the questionnaire, possibly introduc-ing a bias toward healthier respondents forthe DOPPS. However, a study of non-response showed no statistical differencebetween patient characteristics or qualityof life scores between the respondents andnon-respondents (Pifer et al., 2000).

The demonstration patients were gener-ally healthier, younger, and had lowerincome than the comparison samples(Table 1). The characteristics of disen-rollees (excluding death) were capturedfor 31 of 53 disenrollees at Kaiser, and for53 of 119 disenrollees at HOI. The patients’ages, number of comorbidities, and days in


Table 1

Descriptive Statistics for End Stage Renal Disease (ESRD) Managed Care Demonstration andComparison Groups: 1996-2001

Comparison GroupsDemonstration Groups

California Florida Non-Demonstration Measure Kaiser HOI DOPPS1 DOPPS1 Managed Care Fee-for-Service

Sample Size (n) 523 386 377 539 188 177Age (Years) 57.6 60.3 60.3 61.8 61.4 59.1Male (Percent) 62.2 61.8 54.4 57.7 54.6 54.2Black (Percent) 26.1 47.3 16.1 35.4 31.5 36.5Time on ESRD (Years) 3.2 3.7 2.3 2.0 4.1 5.5Average Number of Comorbidities 3.8 3.3 3.7 4.2 3.3 3.3

Household Income Percent< $10,000 27.3 43.2 32.6 36.9 23.4 51.2$10,001 - $40,000 61.7 48.4 48.4 49.8 64.8 39.2> $40,000 11.0 8.4 19.0 13.3 11.8 9.5

Medicare Insurance — — 63.4 71.7 66.5 80.1Unable to Walk 18.7 15.4 34.0 30.6 28.6 22.01 Among patients completing a patient questionnaire (response rate equals 60 percent).

NOTE: DOPPS is Dialysis Outcomes and Practice Patterns Study.

SOURCES: Pifer, T.B., Bragg-Gresham, J.L., Dykstra, D.M., and Held, P.J., University Renal Research and Education Association, Shapiro, J. R.,Centers for Medicare & Mediciad Services, Oppenheimer, C.C., and Gaylin, D.S., National Opinion Research Center, Beronja, N., The Lewin Group,and Rubin, R.J., Georgetown University School of Medicine, 2003.

the hospital prior to enrolling in thedemonstration were similar between con-tinuous enrollees and disenrollees at bothsites (data not shown). These results indi-cate that patients who chose to enroll in thedemonstration were healthier and younger,but after enrollment, there were no signifi-cant differences between the patients whodisenrolled or stayed in the demonstrationhealth plan.

SATISFACTION

Enrolling or Staying in theDemonstration

Among Kaiser patients, the two mostcommonly given reasons for enrolling inthe demonstration MCP or staying in thenew plan after a year were the coverage ofoutpatient drugs and copayments (Table2). However, among HOI patients, the twomain reasons were coverage of outpatientdrugs and recommendation of their doctor.Coverage of copayments was still a majorreason, but seemed to be less of a factorthan the recommendation of their doctor. Itis important to note that doctors did notreceive additional financial benefit forenrolling patients in the demonstration,thereby reducing the likelihood of anyselection bias. The major other reason

reported by both HOI and Kaiser patientsfor enrolling in the demonstration was lackof other health care coverage.

Satisfaction with Providers andServices

The demonstration patients reported ahigh level of satisfaction with their dialysisstaff in terms of friendliness and interest,staff encouragement, and support. For bothHOI and Kaiser patients, there were no sig-nificant differences between patient satis-faction with dialysis staff at baseline andafter 1 year in the demonstration group.

Although the demonstration and compar-ison patients all reported a high overall sat-isfaction with their dialysis staff, Table 3shows that a higher percentage of FFSpatients (80.6 percent) versus demonstra-tion patients at followup (71.3 percent)reported that their dialysis staff encour-aged them to be independent (p<0.05).Furthermore, a higher percentage of FFSand NDMC patients (89.0 percent, p<0.05and 88.2 percent, p<0.05, respectively) weresatisfied compared with the demonstrationpatients (81.6 percent) in terms of staff sup-port in coping with kidney disease.

While the differences between thedemonstration and comparison groupswere significant for these two questions, it


Table 2

Reasons for Enrolling or Staying in End Stage Renal Disease Managed Care DemonstrationHealth Plan, Percent Demonstration Patients at Baseline and Followup: 1998-2000

Health Options, Inc. Kaiser PermanenteReason Baseline Followup Baseline Followup

PercentCost of Outpatient Drugs 26.4 30.4 29.4 32.6Cost of Copayments 21.0 20.3 31.2 29.1Recommendation of Doctor 23.7 25.3 7.0 5.8Other 10.4 11.6 12.6 13.4

NOTE: Other includes the following reasons listed on the Patient Questionnaire: Recommendation of a friend or relative, Choice of hospitals, Choiceof doctors, Benefit for transportation to the dialysis unit, Out-of-area dialysis benefit for when you have to travel, Benefit for family supportive services,Benefit for home health care services, Location of dialysis facility, Support services provided by case managers or care managers, and Other.

SOURCES: Pifer, T.B., Bragg-Gresham, J.L., Dykstra, D.M., and Held, P.J., University Renal Research and Education Association, Shapiro, J.R.,Centers for Medicare & Medicaid Services, Oppenheimer, C.C., and Gaylin, D.S., National Opinion Research Center, Beronja, N., The Lewin Group,and Rubin, R.J., Georgetown University School of Medicine, 2003.

should be noted that there were also sig-nificant differences in terms of patientswho reported, “don’t know.” In otherwords, more comparison patients mayhave reported satisfaction with staffencouragement and support, but that doesnot mean that more demonstration patientsreported dissatisfaction with these aspectsof their health care; rather, more demon-stration patients reported that they did nothave an opinion about these questions.

Overall, demonstration patients at base-line and followup, as well as comparisonpatients, reported high satisfaction withcare and services provided by their medicalcare team and dialysis facility. There werefew significant differences in the demon-stration group from baseline to followup.

However, Table 4 shows that FFS patientsreported higher satisfaction comparedwith the demonstration patients in terms ofease in obtaining appointments with a pri-mary doctor, ease in obtaining referral to aspecialist, and availability of social workersand dietitians. FFS patients also reportedsignificantly higher satisfaction with their

ability to get to and from their dialysis facil-ity, but lower satisfaction with medical carewhen hospitalized.

There were few differences between thedemonstration and NDMC groups, withthe exception of satisfaction with waitingtime to see a doctor for a scheduledappointment. NDMC patients reportedless satisfaction with this measure (74.9percent) versus demonstration patients(84.3 percent, p<0.01).

Satisfaction with Health Plan Benefits

There were significant differencesbetween the demonstration patients at base-line and followup and between the demon-stration and comparison groups in terms ofthree major benefits provided by thedemonstration plan: no copayments, freemedications, and free nutritional supple-ments (Table 5). Within the demonstrationgroup, significantly fewer HOI and Kaiserpatients reported financial burdens at a yearfollowup (p<0.0001) compared with base-line. At the 1 year followup, HOI patients


Table 3

End Stage Renal Disease Managed Care Demonstration Patient Satisfaction with Dialysis StaffFollowup Versus Comparison Groups: 1998-2000

Demonstration Matched Matched Non-Demonstration Measure (Followup) Fee-for-Service Managed Care

Percent Question 1:14Friendliness and Interest of Dialysis Staff Excellent 36.9 33.1 *25.7Good 60.9 65.7 *73.3Poor 2.2 1.1 1.0Question 1:15aStaff Encourages Me to Be IndependentTrue 71.3 *80.6 72.2False 13.6 11.4 10.2Don’t Know 15.1 *8.0 17.6Question 1:15bStaff Supports Me in Coping with My Kidney DiseaseTrue 81.6 *89.0 *88.2False 8.6 8.7 7.5Don’t Know 9.8 *2.3 *4.3

*p<0.05.


also reported greater ease (p<0.01) inobtaining nutritional supplements under thedemonstration health plan, in contrast to theKaiser patients, who reported no difference.

A significantly smaller percentage ofdemonstration patients reported financialburdens for copayments and medicationsas compared with the FFS and NDMCpatients (p<0.0001), while a significantly larg-er percentage of demonstration patientsreported ease in obtaining nutritional sup-plements (p<0.0001).

QUALITY OF LIFE

DOPPS Comparison toDemonstration

Managed care demonstration patientscomprise a healthier group than most dialy-sis patients. Compared with a nationally rep-

resentative sample (DOPPS), demonstrationpatients have fewer comorbidities, bettermobility, and higher albumin, on average.This better health is also reflected in theirbaseline quality of life. Crude baseline phys-ical and mental component summary scoresshow the two demonstration sites havingsignificantly higher scores than the State-specific DOPPS comparisons (Table 6).

After taking into account the variationdue to differences in health factors betweenthe demonstration and DOPPS, the statisti-cally significant differences at baseline dis-appeared. Table 6 also shows the baselinescores after adjustments were made.

Matched FFS and NDMC Comparisons

The demonstration patients reportedsimilar quality of life to the matched NDMCand FFS patients. Table 7 shows the samples


Table 4

End Stage Renal Disease Managed Care Demonstration: Patient Satisfaction with Medical Team,Dialysis Facility, and Hospitals Versus Comparison Groups: 1998-2000

Demonstration Matched Matched Non-Demonstration Measure (Followup) Fee-for-Service Managed Care

Percent AgreeingPatient Satisfaction with Medical Team Medical Care Provided by Primary Doctor is Excellent 86.8 91.0 81.3Satisfied with the Effort of My Health Care Team in

Determining Whether I Could Have a Transplant 75.8 82.0 82.6Overall Care from My Transplant Medical Team is

Excellent Quality 78.3 71.6 68.1Easy to Obtain Appointments with Primary Doctor 83.2 **92.8 80.6Easy to Obtain Referral to a Specialist 88.0 *93.9 84.8Do Not Have to Wait Long to See My Doctor for a

Scheduled Appointment 84.3 80.2 **74.9Social Worker is Usually Available to See Me When Needed 89.4 *94.8 88.8Dietitian is Usually Available to See Me When Needed 90.8 *96.0 92.6

Patient Satisfaction with Dialysis Facility Easy to Get to and from Dialysis at this Facility 90.9 *96.6 89.6Care I Receive During Dialysis Is Excellent 91.0 90.4 90.1Usually Able to Obtain Dialysis Schedule I Desire 91.3 94.3 94.5Facility Provides Comfortable Atmosphere and

Useful Amenities 92.8 92.5 94.1

Patient Satisfaction with Hospitals Medical Care When Hospitalized Is High Quality 85.3 *77.7 81.7Hospital Choices are Satisfactory 86.0 80.7 84.5

* p<0.05.

**p<0.01.



Tab

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had generally similar unadjusted physicaland mental component summary scores atbaseline. No differences were seen in themental component summary score foreither comparison group, but the NDMCsample showed higher physical componentsummary scores.

Pre-Managed Versus Managed Care

One year following their enrollment inthe demonstration, patients were asked toreport their quality of life a second time.Table 8 shows that quality of life scoreseither stayed the same or increased fordemonstration patients after 1 year ofenrollment in the demonstration. Severalof the physical and mental subscalesshowed statistically significant, and clini-cally meaningful increases as determinedby a criterion of a ≥ 3-point difference(Samsa et al., 1999; Hays and Woolley,2000). In addition, the mental component

summary score showed a significantincrease (D=1.9, p<0.001) at the 1 year fol-lowup. Although results are shown forboth sites combined, the effect ofimproved mental scores was seen in bothdemonstration populations independently.

In contrast to the demonstration qualityof life scores increasing, Table 9 illustratesthat 1 year change in quality of life for thenationally representative DOPPS sampleshowed some small, but statistically signif-icant, decreases.

DISCUSSION

Patient Satisfaction

Health Plan Benefits

We found significant differences inpatient satisfaction with the financial incen-tives provided by the demonstration plan.After 1 year of coverage, significantly fewer


Table 6

End Stage Renal Disease Managed Care Demonstration Baseline Quality of Life Summary ScoresVersus DOPPS Comparison Groups: 1996-2001

Physical Component Summary Mental Component SummaryGroup Sample Size (n) Crude Adjusted Crude Adjusted

Kaiser Demonstration 523 *34.9 33.3 *47.4 46.7California DOPPS 377 32.7 32.5 45.6 45.5HOI Demonstration 386 *35.3 33.4 *48.9 47.4Florida DOPPS 539 32.9 32.4 46.6 46.2

* p<0.05.

NOTES: DOPPS is Dialysis Outcomes and Practice Patterns Study. Kaiser is Kaiser Permanente. HOI is Health Options, Inc.


Table 7

End Stage Renal Disease Managed Care Demonstration Baseline Quality of Life Scores VersusNon-Demonstration Managed Care and Fee-for-Service: 1998-2000

Group Sample Size Physical Component Summary Mental Component Summary

Demonstration1 1,068 35.1 48.1Matched Non-Demonstration Managed Care 188 *37.0 48.1Matched Fee-for-Service 177 35.9 47.8

* p<0.05.1 Includes all patients at baseline.


demonstration patients reported financialburdens due to the benefit of free medica-tions and no copayments provided underthe demonstration MCP. These financialincentives were also the most importantreasons listed by the demonstrationpatients for enrolling and/or staying in theplan. It is not surprising that these aremajor incentives for ESRD patients giventhe high costs that they may incur for med-ications and copayments if they do nothave supplemental insurance. Further-more, demonstration patients tended tohave lower incomes than the comparison

groups; therefore, these financial benefitswould certainly be important incentives forenrolling and staying in the demonstration.

Surprisingly, neither the HOI nor Kaiserpatients reported higher satisfaction withpreventive care and wellness under thedemonstration plan. This is one of the mostfrequently cited benefits of an MCP, butthis does not appear to have been an impor-tant factor for the two demonstration sites.A variety of explanations are possible.Patients may not have perceived a greateremphasis on preventive care. Alternatively,patients may have valued this benefit less


Table 8

Quality of Life for End Stage Renal Disease Managed Care Demonstration Patients at Baselineand 1 Year Followup: 1998-2000

1 Year Change in p-value fromMeasure Baseline Mean1 Followup Mean Quality of Life paired t-test

Physical Functioning 49.9 49.4 -0.5 0.7059Role—Physical 39.7 43.0 3.3 0.1283Bodily Pain 66.3 69.5 3.2 0.0390General Health 48.3 48.3 0.0 0.9954Physical Component Summary 36.6 36.4 -0.2 0.6126

Mental Health 71.2 74.7 3.5 0.0004Role—Emotional 60.0 68.2 8.2 0.0004Social Functioning 67.2 67.8 0.6 0.6592Vitality 46.5 47.4 0.9 0.3912Mental Component Summary 48.3 50.2 1.9 0.0006

1 Restricted to patients with 1 year of followup; n=422.


Table 9

End Stage Renal Disease Managed Care Demonstration Quality of Life for DOPPS ComparisonGroup at Baseline and 1 Year Followup: 1996-2001

1 Year Change in p-value fromMeasure Baseline Mean1 Followup Mean Quality of Life paired t-test

Physical Functioning 42.8 41.0 -1.8 0.0039Role—Physical 33.3 32.4 -0.9 0.3894Bodily Pain 60.5 58.9 -1.6 0.0191General Health 41.9 41.0 -0.9 0.0503Physical Component Summary 33.5 32.9 -0.6 0.0144Mental Health 69.8 69.2 -0.6 0.2037Role—Emotional 55.9 54.7 -1.2 0.3183Social Functioning 64.9 62.9 -2.0 0.0041Vitality 44.9 43.5 -1.4 0.0059Mental Component Summary 48.1 47.7 -0.4 0.1215

NOTE: DOPPS is Dialysis Outcomes and Practice Patterns Study.


than the significant financial incentives ofparticipating in the demonstration. Anotherpossibility is that patients considered cov-erage of preventive services to be a finan-cial benefit (i.e., they received preventiveservices prior to the demonstration, buthad to pay out-of-pocket for them).

Health Care Providers and Services

Patient satisfaction with dialysis staffand facility, and medical team appeared tobe very high among both demonstrationand comparison groups. The demonstra-tion patients reported few differences insatisfaction with their health care providersand their dialysis facility after 1 year ofenrollment. This is not surprising, as manyof the demonstration patients did notchange dialysis facilities after enrolling inthe demonstration. Therefore, we did notexpect any significant differences in satis-faction toward the health care team or dial-ysis facility from the demonstration patientsat the 1 year followup.

In contrast, there were some very largeand statistically significant differences inpatient satisfaction with health careproviders and services between the demon-stration and comparison groups, especiallythe FFS group. The matched FFS andNDMC patients reported significantly high-er satisfaction with their dialysis staff com-pared with the demonstration patients. It isuncertain why these comparison groupswould report higher satisfaction with theirdialysis staff since they were recruited frommostly the same facilities as the demonstra-tion patients. It is unlikely that the dialysisstaff would have treated demonstrationpatients differently from FFS or NDMCpatients within the same facility.

Another significant difference was that,compared with demonstration patients,FFS patients reported higher satisfaction

with the ease in obtaining appointmentswith their primary care doctor and obtain-ing referrals to a specialist. This supportsthe commonly reported disadvantage of anMCP, namely, difficulty in gaining accessto a primary care doctor or specialist(Reschovsky et al., 2000). In addition tohigher satisfaction with access to theirphysicians, FFS patients also reportedhigher satisfaction with the availability ofsocial workers and dietitians. A possibleexplanation for this observation is thatunder an MCP, there may be the percep-tion of restricted access (through referralrequirements). FFS patients also reportedgreater satisfaction with the ability to get toand from their dialysis facilities.

Although FFS patients reported highersatisfaction with their health care providers,they appeared to be less satisfied with theirmedical care when hospitalized comparedwith demonstration patients. It is unclearwhy these differences would be observed,but it may be a reflection of the more com-prehensive hospitalization coverage provid-ed under MCPs. Additionally, the demon-stration plans provided a comprehensivecase management approach, which mayhave resulted in better coordination of careamong physicians, dietitians, social work-ers, and other specialists when patientswere hospitalized. This coordinated carewould seemingly provide greater comfortto the demonstration patients during a timewhen they are not in good health andreceiving treatment in a large unfamiliarhealth care system.

Quality of Life

Results from our quality of life analysesaddress a key evaluation question of thedemonstration: Does enrollment in man-aged care rather than traditional (i.e., FFS)programs affect the quality of life experienced


by ESRD patients? Quality of life measuresare increasingly being recognized as impor-tant indicators of health, emphasizing theimportance of the question.

The results presented here touch on sev-eral quality of life issues. First, these analy-ses assess whether or not baseline differ-ences exist among those ESRD patientschoosing to enroll in the demonstration ascompared with a nationally representativesample of patients. Second, baseline quali-ty of life was compared between managedcare patients and the FFS and NDMC sam-ples, which were matched on age, race,and time on ESRD. Differences betweenthe first and second sets of comparisonscan indicate differences in quality of liferesulting from characteristics other thanthe ones matched for. Finally, our resultsexplore changes in quality of life over time.

Quality of Life at Baseline

Results of the analyses comparing base-line quality of life of hemodialysis demon-stration patients to that of DOPPS patientsin California and Florida provide evidencethat demonstration patients in these twoStates were healthier than a cross sectionof all hemodialysis patients in these serviceareas. At baseline, demonstration patientshad higher physical and mental componentsummary scores. These differences werestatistically significant at p<0.05, but theywere not clinically meaningful as deter-mined by the criterion of a ≥ 3-point differ-ence (Samsa et al., 1999; Hays and Woolley,2000). Furthermore, adjusted results indi-cate that demographic and comorbidity fac-tors (including age, sex, race, coronaryartery disease, peripheral vascular disease,and hypertension) accounted for all of thedifference in baseline quality of life scores.

Matched Comparisons

Baseline quality of life comparisons werealso conducted to compare physical andmental component scores of demonstra-tion patients with the matched FFS andNDMC samples. With the exception of thephysical component score among theNDMC sample, there were no differencesin quality of life scores between demon-stration patients and the two matched com-parison samples.

The higher physical component scoreamong NDMC patients may indicate thatpatients who had been in managed care forsome period of time (NDMC patients)were healthier and had better physicalquality of life than patients who opted formanaged care at baseline. However, sincethis difference does not appear to be clini-cally significant, further work would benecessary to determine whether there isindeed any benefit of MCPs over time.

Changes in Quality of Life

Longitudinal analyses that assess changesin quality of life and other health indicatorsover time are especially crucial for evaluat-ing the success of managed care modelsfor ESRD patients. The results showedsome statistically and clinically significantchanges in quality of life scores amongdemonstration patients between baselineand followup. Nearly every subscale of thephysical and mental component scoreseither improved or stayed approximatelythe same after 1 year. For three of thesesubscales—bodily pain, mental health, androle-emotional—the improvement is statis-tically significant as well as clinically mean-ingful. The overall mental componentscore also showed a statistically significant


increase. These results are strikingbecause ESRD patients, due to the chronicnature of their illness, typically exhibitdeteriorating quality of life over time.Indeed, when we examined a sample ofDOPPS patients over a 1-year period oftime, we observed a decrease in scoreamong all of the subscale components aswell as the two summary scores. Five ofthe scores (physical functioning, bodilypain, physical component score, socialfunctioning, and vitality) showed statisti-cally significant declines.

There are several factors that likelyaccounted for the higher mental compo-nent summary scores among the demon-stration patients after 1 year in the demon-stration. The financial benefits of thedemonstration plan, resulting in less finan-cial burden and stress to the patients andtheir families, may have been the primaryfactor. The higher scores may also haveresulted from the better coordination ofcare from the case managers assigned topatients on enrollment, which was anessential component of the demonstrationprogram. The basic functions of the casemanagers included initial screening,assessment, care planning, service provi-sion and/or referral, monitoring, andreassessment. This level of service inte-gration and case management likely pro-vided greater assurance and comfort toESRD patients.

CONCLUSIONS

The patient satisfaction and quality of lifeanalyses presented here have importantimplications for evaluating the success ofCMS’ managed care demonstration. Weobserved that patients in MCPs are lesssatisfied than FFS patients about theiraccess to health care providers. However,

demonstration patients clearly expressedgreater satisfaction with the financial bene-fits provided under the plan, primarily thecoverage of copayments, prescription drugs,and nutritional supplements. This greatersatisfaction with the demonstration healthplan benefits may partially explain the find-ing that mental quality of life scoresincreased after a year for patients enrolledin the demonstration. The statistically andclinically significant increase in quality oflife scores for demonstration patients aftera year in the MCP is striking and may indi-cate potential value in managed careapproaches for ESRD patients. As qualityof life indicators have been shown to pre-dict morbidity, hospitalization, and mortali-ty in dialysis patients, this is a result wor-thy of careful consideration.

REFERENCES

Hays, R.D., and Woolley, J.M.: The Concept ofClinically Meaningful Difference in Health-RelatedQuality-of-Life Research. How Meaningful Is It?Pharmacoeconomics 18(5):419-423, November 2000.Hays, R.D., Kallich, J.D., Mapes, D.L., et al.:Development of the Kidney Disease Quality of Life(KDQOLTM) Instrument. Quality of Life Research3(5):329-338, October 1994.Kutner, N.G., Brogan, D., and Kutner, M.H.: End-Stage Renal Disease Treatment Modality andPatients’ Quality of Life. American Journal ofNephrology 6(5):396-402, 1986.Oppenheimer, C.C., Shapiro, J.R., Beronja, N., et al.:Evaluation of the ESRD Managed Care Demonstra-tion Operations. Health Care Financing Review24(4):7-29, Summer 2003.Pifer, T.B., Meredith, D.T., Mapes, D.L., et al.:Preliminary Results: Non-Response Bias Study ofthe SF-36® Quality of Life (QoL) Scores forHemodialysis (HD) Patients in the DOPPS. Journalof the American Society of Nephrology 11:A1265,2000. Reschovsky, J.D., Kemper, P., and Tu, H.: DoesType of Health Insurance Affect Health Care Useand Assessments of Care Among the PrivatelyInsured? Health Services Research 31:219-237, April2001.


Samsa, G., Edelman, D., Rothman, M.L., et al.:Determining Clinically Important Differences inHealth Status Measures: A General Approach withIllustration to the Health Utilities Index Mark II.Pharmacoeconomics 15(2):141-155, February 1999.SAS® Institute, Inc.: SAS®/STAT User’s Guide.Version 8.0. Cary, NC., 1997. Internet address:http://www.sf.36.com (Accessed July 2003.)SF-36® Health Survey. Medical Outcomes Trust,Inc. Internet address: www.outcomes-trust.org(Accessed July 2003) and http://www.sf-36.com.(Accessed June 2003.)

Starr, P.: Health Care Reform and the NewEconomy. Health Affairs 19(6):23-32, November/December 2000.Young, E.W., Goodkin, D.A., Mapes, D.L., et al.: TheDialysis Outcomes and Practice Patterns Study(DOPPS): An International Hemodialysis Study.Kidney International 57(Supplement 74):S74-S81,2000.

Reprint Requests: Trinh B. Pifer, M.P.H., University RenalResearch and Education Association, 315 W. Huron, Suite 260,Ann Arbor, MI 48103. E-mail: [email protected]


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