Department  of  Health  and  Human  Services 
OFFICE  OF 
INSPECTOR  GENERAL 
KNOW  YOUR  N(JMBERrr  BROCHURE 
EXPERIENCES  OF  DIALYSIS  FACILITIES  OFFICE  OF  INSPECTOR  GENERAL 
The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452,  is to 
protect the integrity cf the Department of Health and Human Services programs  as well as the health 
and welfare of beneficiaries  served by them.  This statutory mission is carried out through a 
nationwide program of audits,  investigations,  evaluations,  sanctions,  and fraud alerts.  The Inspector 
General informs the Secretary of program and management problems and recommends  legislative, 
regulatory,  and operational  approaches to correct them. 
OFFICE  OF  EVALUATION  AND  INSPECTIONS 
The OIGS OffIce of Evaluation and Inspections (OEI) conducts short-term  management and program 
evaluations  (called inspections) that focus on issues of concern to the Department,  the Congress,  and 
the public.  The inspection reports provide findings and recommendations  on the eftlciency, 
vulnerability,  and effectiveness of departmental programs. 
OEIS Dallas Regional Office prepared this report under the direction of Chester B. Slaughter, 
Regional Inspector General. 
Project staff included: 
DALLAS  REGION
 HEADQUARTERS 
Michelle Adarns, Ph.D.
 Mary Beth Clarke 
Ruth Ann Dorrill
 Brian Ritchie 
Karen Erickson,  Intern
 Barbara Tedesco 
Sarah Taylor

Judy Tyler

Nancy Watts

For additional copies of this report,  please contact the Dallas Regional Office at (800) 848-8960.  Department  of  Health  and  Human  Services 
OFFICE  OF 
INSPECTOR  GENERAL 
KNOW  YOUR
 NUMBER  BROCHURE

EXPERIENCES  OF  DIALYSIS  FACILITIES 
+W  -i 
$*  JUNE  GIBBS  BROWN 
~ 
Inspector  General 
x 
b 
~
%++ 
4-+2~xG JANUARY  1997 
OEI-06-95-O0321  EXECUTIVE  SUMMARY 
PURPOSE 
This  study  describes  the  experiences  of renal  dialysis  facilities  in using  the  Health  Care 
Financing  Administrations  (HCFA)  Know  Your  Number  brochure  to educate  end  stage 
renal  disease  (ESRD)  patients  on how  to monitor  the  adequacy  of their  dialysis  treatment. 
BACKGROUND  AND METHODOLOGY 
By Medicares  definition,  ESRD  is  that  stage  of renal  impairment  that  appears  irreversible 
and  permanent,  and  requires  a regular  course  of dialysis  or kidney  transplantation  to maintain 
life.   Concern  has  grown  over  the  adequacy  of hemodialysis  with  the  recent  release  of the 
EMU.1 Core  Indicators  Workgroups  report,  conducted  as part  of HCFAs  and  the  18 
contracting  ESRD  Network  Organizations  quality  assurance  and  continuous  improvement 
efforts.  This  report  found  that  only  43 percent  of patients  were  receiving  adequate 
hemodialysis. 
The  ESRD  brochure  Know  Your  Number  was  developed  out  of this  concern.  Its  purpose 
is to educate  the  approximately  156,000  in-center  hemodialysis  patients  so they  may  better 
determine  the  adequacy  of their  treatment  and  become  more  proactive  in the  treatment 
process.  To  ascertain  the  experience  with  and  obtain  the perspectives  of facilities  staff 
regarding  the  brochure,  we randomly  surveyed  132 facilities  treating  hemodialysis  patients. 
FINDINGS 
Facilities  who  received  the  brochure  overwhelmingly  reported  the  brochure  includes  useful 
information  and  most  said  it is somewhat  or very  easy  for patients  to understand.  These 
facilities  said  the  brochure  allows  staff  to help  patients  become  actively  involved  in their  own 
dialysis,  encourages  patient  compliance  with  their  recommended  treatment,  and  its content  is 
sometimes  being  used  or  will  be used  in facilities  educational  outreach  materials. 
However,  22 percent  of facilities  reported  ~t  receiving  the  brochure.  Some  who  got  it, 
didnt  fully  disseminate  it to patients.  Furthermore,  we found  21 percent  of facilities  do ~t 
calculate  patients  URR  or KT/V  numbers  on a monthly  basis.  Facilities  calculating  these 
numbers  on  a monthly  basis  were  much  more  likely  to also  distribute  the  brochure  and  have 
patients  who  participate  more  proactively  in their  dialysis.  This  finding  clearly  highlights  an 
important  interaction  between  facility  practice  and  the  effectiveness  of the  brochure. 
i  DISSEMINATION 
Seventy  six percent  of facilities  repotied  receiving  the  brochure,  22 percent  said  they  did 
not.  All  but  13 percent  of  receiving  facilities  distributed  the  brochure,  half  to every patient 
and  half  to an  average  of  69 percent  of their  p~ents.  Brochures  were frequently  (74 
percent)  personally  handed  to ptients,  ofien  accompanied  by an  explanation  from  a 
registered  nurse  (84 percent). 
Facilities  @  fully  distributing  the  brochure  said  many  patients  wouldnt  understand  the 
brochures  content  or they  didnt  receive  enough  brochures  to distribute  it more  extensively, 
Facilities  distributing  the  brochure  most  commonly  handed  the  brochure  to patients  and/or 
placed  it somewhere  accessible  in their  facilities. 
Registered  nurses  provided  the  majority  of brochure  explanations,  with  almost  all facilities 
saying  at least  half  or  more  of their  patients  appeared  alert  during  their  explanations. 
BROCHURES  EFFECTIVENESS 
Seventy-two  percent  of facilities  rated  the  brochures  effectiveness  as  a patient  eductional 
tool  as  either  excellent  or good,  and  66 percent  said  the  brochure  was  somewhat,  or  very, 
easy for  their  ptients  to understand. 
Forty-six  percent  of facilities  reported  most  or all of their  patients  wanted  to know  their  own 
URR  or KT/V  number  after  receiving  the  brochure,  and  47 percent  said  half  or  more  of their 
patients  asked  questions  about  the  brochures  content. 
Almost  all facilities  (98 percent)  said  patients  need  to know  the  information  in the  brochure. 
Eighty-two  percent  said  a brochure  was  an appropriate  method  for  communicating  this 
information. 
DIALYSIS  ADEOUACY 
Facilities  sazii at  least  50 percent  of their  patients  are  interested  in the  adequacy  of their 
dhzlysis,  with  29 percent  tnzcking  their  numbem  month-to-month. 
Clearly,  the  brochures  effectiveness  cannot  be assessed  without  considering  facilities 
practices,  and  in the  process  of conducting  our  study,  we found  not  all  facilities  calculate 
dialysis  adequacy  measures  on  a monthly  basis  or  routinely  share  them  with  their  patients. 
Only  77 percent  of facilities  calcukhte p~ents  numbers  at least  monthly,  with  21 percent 
doing  this  only  quatierly.  Futiher,  only  53 percent  of facilities  ~ve ptients  their  numbens 
all the  time;  many  do  so far  less,  16 percent  do  this  less  than  half  the  time. 
Facilities  who  give  patients  their  numbers  monthly,  or  more  often,  were  much  more  likely  to 
have  distributed  the  brochure  to every  patient  and  to have  patients  who  track  their  numbers.  RECOMMENDATIONS 
Overall,  we found  the  brochure  has  the potential  to  serve  as an effective  part  of a broader

strategy  of improving  patients  understanding  of adequate  dialysis  and  enlisting  their  support

in monitoring  the  adequacy  of their  dialysis.  The  Know  Your  Number  brochure  was  given

a positive  assessment  by facilities  receiving  it.  However,  the  brochure  was  not  received  by

all  facilities  nor  was  it fully  distributed  or explained  to all patients  by all  receiving  facilities.

It seems  clear  that  the  brochures  effectiveness  in educating  patients  and  involving  them  in

monitoring  dialysis  still  is heavily  dependent  upon  facility  practices  and  the  quality  of  staff-

patient  relationships.

Based  on our  findings,  we recommend  that  HCFA  take  the  following  actions  to improve

kidney  dialysis:

DISSEMINATION.  Assure  all facilities  receive  an ample  supply  of brochures  and

encoumge  them  to distribute  a brochure  to every  patient.  HCFA  might  also  consider

providing  guidelines  to facilities  on effective  dissemination  approaches.

BROCHURE  CONTENT  & FORMAT.  Simplify  the  language  and  concepts  as much  as

possible  in any  subsequent  or  revised  patient  brochures.  Consideration  might  be given  to

developing  alternate  versions  of the  brochure  for  different  reading  levels,  and  to adding

greater  use  of color  and  graphics  to gain  interest  and  promote  patient  understanding.

CONTINUING  PATIENT  EDUCATION.  Encourage  continuing  efforts  by facilities  to

educate  patients  and  to reinforce  the  importance  of patient  understanding  and  monitoring  of

the  adequacy  of their  dialysis.  A training  video  to introduce  and/or  reinforce  the  brochure

concepts  might  also  prove  effective,  based  on the  suggestions  and  experiences  of  some

facilities.

USE OF ADEQUACY  MEASURES.  Encourage  facilities  to calculate  dialysis  adequacy

measures  on  a monthly  basis  and  to  share  these  numbers  with  patients  on  a regular  basis,  in

order  for  the  brochure  to achieve  its intended  impact  on patients  and  facilities.

Additional  OffIce  of InsmXtor  General  Work

A companion  report  by the Inspector  Generals  office  (OEI-06-95-O0320)  provides

information  about  perspectives  of dialysis  patients  regarding  the  Know  Your  Number

brochure.  The  report  describes  how  successful  the  brochure  was  in increasing  patient

awareness  of information  about  adequate  dialysis,  how  it is measured,  how  patients  know  if

they  have  achieved  it,  and  what  they  can  do to improve  their  dialysis.  Additionally,  it

highlights  how  the  brochure  has  helped  enhance  the  dialogue  between  facilities  and  patients

about  adequate  dialysis  and  the  use  of URR  or KT/V  numbers  to monitor  adequacy  of

dialysis  treatment.  The  report  also  addresses  problems  with  brochure  dissemination,  lack  of

patient  familiarity  with  dialysis  tests  used  by their  facility  and  with  target  numbers  indicating

dialysis  adequacy,  even  among  patients  receiving  the  brochure.

... 
m  AGENCY  COMMENTS 
The  Health  Care  Financing  Administration  (HCFA)  concurred  with  all the  reports 
recommendations.  We  appreciate  their  responsiveness  to our  proposals.  However,  we have 
a new  concern  that  has  arisen  since  we  issued  our  draft  report. 
We  originally  recommended  that  HCFA  encourage  facilities  to calculate  dialysis  adequacy 
monthly  and  share  these  numbers  with  patients  on a regular  basis.  HCFA  informed  us that 
they  had  no  requirement  for  facilities  to  measure  the  adequacy  of dialysis  at prescribed 
intervals  but  that  their  revised  ESRD  Conditions  for  Coverage  will  require  facilities  to 
calculate  the  adequacy  of dialysis  quarterly.  This  is in marked  constrast  to the  upcoming 
National  Kidney  Foundations  Dial ysis  Outcome  Quality  Initiative  guidelines  which 
recommend  a standard  practice  guideline  of a monthly  URR  or KT/V  calculation,  not 
quarterly  calculations.  We  are  concerned  that  facilities  will  interpret  HCFAS  Conditions  for 
Coverage  as the  acceptable  standard  and  conduct  adequacy  testing  on] y quarterly. 
In our  view,  this  could  pose  a severe  health  risk  for  ESRD  patients  whose  dialysis  could  go 
three  months  before  needed  corrections  could  be made  to their  treatment.  We  are  convinced 
that  facilities  should  be required  to calculate  adequacy  numbers  monthly  and  we urge  HCFA 
to  reconsider  or amend  the  Conditions  for  Coverage  accordingly. 
iv  4 
TABLE  OF  CONTENTS 
PAGE

EXECUTIVE  SUMMARY  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  .1

INTRODUCTION  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  .1

FINDINGS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  .4

Overview  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  ,4

Dissemination  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  .4

Brochures  Effectiveness  . . . . . . . . . . . . . . . . . . .  . . . . . . . . . . . . . . . . . .  ,8

Dialysis  Adequacy  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  14

RECOMMENDATIONS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  19

AGENCY  COMMENTS  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  20

ENDNOTES  . . . . . . . . . . . . . . . . . . . .  . . . . . . . .  . . .  . . .  . . .  . . .  . . . . .  21

APPENDICES

A:  Profiles:  Respondent  Facility  Information  and  Patient  Demographics  .  . . . . . .  A-1

B:  Confidence  Intervals  and Tests for Significance  . . . . . . . . . . . . . . . . . . . . . B-1

C:  Text  ofAgency  Comments  . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  .C-l  INTRODUCTION 
PURPOSE 
This  study  describes  the  experiences  of renal  dialysis  facilities  in using  the Health  Care 
Financing  Administrations  (HCFA)  Know  Your  Number  brochure  to educate  end  stage 
renal  disease  (EM?D)  patients  on  how  to monitor  the  adequacy  of their  dialysis  treatment. 
BACKGROUND 
By Medicares  definition,  ESRD  is  that  stage  of renal  impairment  that  appears  irreversible

and  permanent,  and  requires  a regular  course  of dialysis  or kidney  transplantation  to maintain

life.  Although  some  Americans  with  chronic  kidney  failure  receive  kidney  transplants,  the

majority  receive  either  hemodialysis  or peritoneal  dialysis  treatment.3  Over  186,000  ESRD

patients  currently  receive  some  form  of dialysis  therapy  in the  United  States.  Although

dialysis  is expensive  and  is not  a cure,  the  treatments  can  greatly  prolong  an ESRD  patients

life.

As a result  of the  Social  Security  Amendments  of  1972  (P.L.  92-603),  ESRD  patients  may

qualify  for  Medicare  under  the  renal  disease  provision  which  pays  for  80 percent  of the  cost

of the  treatment  no  matter  how  old  they  are.  To  qualify  for  Medicare  a person  must:  1)

have  worked  long  enough  to be insured  under  the  Social  Security  program,  or be the

spouse/child  of  someone  who  has;  or 2) already  be receiving  Social  Security  benefits.  If a

person  isnt  eligible  for  Medicare,  they  may  qualify  for  Medicaid  if their  income  is below  a

certain  level.

To conduct  oversight  activities  assuring  the  appropriateness  of  services  for  ESRD  patients,

Congress  passed  the  ESRD  Amendments  of  1978  (P.L.  95-292)  authorizing  the  establishment

of ESRD  Network  Organizations.  Currently,  the  Health  Care  Finance  Administration

contracts  with  18 ESRD  Network  Organizations  throughout  the  United  States.  In  striving  for

quality  assurance  and  continuous  improvement,  the  ESRD  Networks,  together  with  HCFA

and  the  renal  community,  worked  to implement  the  ESRD  Health  Care  Quality  Improvement

Program.  This  program  allows  the  ESRD  Networks  and HCFA  to track  improvements  in

health  care  provided  to renal  Medicare  beneficiaries  through  the  development  of quaMy

indicators.

ESRD  Core  Indicators  Proiect

In  1994  the  IZSRD Health  Care  Quality  Improvement  Program  conducted  the

National/Network  ESRD  Core  Indicators  Project  to assist  providers  of ESRD  services  in

assessing  and  improving  the  care  provided  to ESRD  patients.  The  fwst phase  of this  project

targeted  adult  in-center  hemodialysis  patients  receiving  care  in the  last  quarter  of  1993.  The

projects  focus  was  on establishing  a consistent  clinical  database  of key  components  of care.

Such  clinical  measures  included  the  determination  of the  adequacy  of dialysis  using  the pre-

and  post-dialysis  blood  urea  nitrogen  (BUN)  levels  to calculate  the  urea  reduction  ratios

1  (uRR).4  Baseline  estimates  were  then  used  to identify  opportunities  for  improvement  in 
ESRD  care  across  the  United  States. 
The  projects  data  was  compared  to  standard  medical  levels  of adequate  hemodialysis 
developed  by  the Renal  Physicians  Association  and  a National  Institute  of Health  (NIH) 
Consensus  Development  Conference  Panel  (URR  >0.65  or KT/V  >  1.2) .567Only  43 
percent  of the  studys  patients  met  these  new  standards,  with  significant  differences  existing 
by  gender,  race,  age,  and  region.  The  percent  of patients  in particular  Network  areas  who 
received  adequate  hemodialysis  ranged  from  29 to 57 percent,  accounting  for  differences  by 
race  and  gender. 
The  ESRD  Core  Indicators  Workgroup  produced  a report  in late  1994,  along  with  an analysis 
of the projects  results,  and  is currently  conducting  an evaluation  of the  impact  of the  Health 
Care  Quality  Improvement  Program  on patient  care  and  outcomes.  Networks  will  also 
prepare  summary  reports  of their  intervention  and  follow-up  activities  on an annual  basis. 
EM?D  Brochure 
The  ESRD  brochure  Know  Your  Number  was  developed  out  of concern  for  the  large 
percent  of hemodialysis  patients  not  receiving  adequate  treatment.  With  the  development  of 
a consensus  medical  standard  for  adequate  hemodialysis,  patients  now  have  a benchmark 
against  which  to compare  their  own  test  results. 
The  brochures  purpose  is to educate  the  approximately  156,000  in-center  hemodialysis 
patients  so they  may  better  determine  the  adequacy  of their  treatment  and  become  more 
proactive  in the  treatment  process.  The  brochure  focuses  on heightening  patients  awareness 
of the  following:  1) there  is a recommended  level  of dialysis  associated  with  a number;  2) 
why  achieving  this  level  is important;  and  3) how  patients  would  know  if the  recommended 
level  of dialysis  was  achieved.  The  brochure  also  seeks  to inform  patients  on what  they  can 
do to track  and  improve  their  dialysis  test  results. 
A total  of 350,000  brochures  were  initially  printed  in English,  with  an additional  50,000 
brochures  printed  in Spanish  for  a later  distribution.  The  brochures  were  sent  directly  to 
approximately  2,500  dialysis  facilities  for  dissemination  to ESRD  patients.  Distribution  of 
the  brochure  to patients  at the  facility-level  is intended  to improve  communication  between 
providers  and  patients,  in addition  to  increasing  patients  understanding  of their  treatment  and 
progress. 
SCOPE 
Since  the  goal  of the  EXD  Know  Your  Number  brochure  is to increase  patient  awareness 
about  the  adequacy  of their  dialysis,  this  study  examined  whether  patients  received  the 
brochure  and  understood  its content  and  also  facilities  experience  in using  the  brochure.  In 
addition,  we determined  how  brochures  were  disseminated  and  the  extent  of  interaction 
between  patients  and  providers  as a result  of the  brochures  distribution.  We  did  not  aim  to 
2
 measure  any  broad-based  behavior  changes  by patients  resulting  from  the  brochure  due  to the 
difficulty  of making  such  causal  inferences. 
METHODOLOGY 
Sample  selection 
Using  the  HCFAs  Medical  Information  System  (PMMIS)  database,  we used  simple  random 
sampling  to obtain  two  separate  samples  of  800  hemodialysis  patients  each  in late  October 
1995  and  mid-February  1996,  testing  both  early  and  later  dissemination  of the  brochure. 
The  findings  from  this  survey  will  be  included  in a separate  OIG  report  (OEI-06-95-00321  ). 
Using  HCFAs  Online  Survey  Certification  and  Reporting  System  (OSCAR)  and  Medical 
Information  System  (PMMIS)  databases,  we used  simple  random  sampling  to obtain  a sample 
of  150 dialysis  facilities  in operation  prior  to October  1995.  We  surveyed  the  132 facilities 
with  hemodialysis  patients  in April  1996.  Our  response  rate  for  this  sample  was  86 percent, 
with  113 facilities  responding  to our  survey.  Four  additional  completed  surveys  came  in 
several  months  after  the  survey  deadline  and  were  not  analyzed  for this  report. 
An analysis  of non-respondents  versus  respondents,  based  on key  facility  characteristics,  such 
as ownership  type,  location  of facility,  number  of hemodialysis  stations,  and  the  number  of 
years  with  Medicaid/Medicare  certification,  showed  no differences  between  the  two  groups. 
A profile  of responding  facilities  and  facility  staff  completing  our  survey  is provided  in 
Appendix  A.  Confidence  intervals  for  specific  frequency  estimates  are  provided  in 
Appendix  B. 
This  inspection  was  conducted  in accordance  with  the  Quality Standards for  Inspections 
issued  by the  Presidents  Council  on Integrity  and  Efficiency. 
3
 FINDINGS

Facilities  who  received  the  brochure  overwhelmingly  reported  the  brochure  includes  useful 
information,  and  most  said  it is somewhat,  or  very,  easy  for  patients  to understand.  These 
facilities  said  the  brochure  allows  staff  to  help  patients  become  actively  involved  in their  own 
dialysis,  encourages  dialysis  time  compliance  among  patients,  and  its  content  is sometimes 
being  used,  or  will  be used,  in facilities  educational  outreach  materials. 
However,  22 percent  of facilities  reported  ~t  receiving  the  brochure.  Some  who  got  it, 
didnt  fully  disseminate  it to patients.  Furthermore,  we found  21 percent  of facilities  do ~t 
calculate  patients  URR  or KT/V  numbers  on a monthly  basis.  Facilities  calculating  these 
adequacy  numbers  on a monthly  basis,  were  much  more  likely  to also  distribute  the  brochure 
and  have  patients  who  participate  more  proactively  in their  dialysis.  This  finding  clearly 
highlights  that  there  is an important  interaction  between  facility  practice  and  the  effectiveness 
of the  brochure. 
DISSEMINATION 
Seventy  six percent  of facilities  repotied  receiving  the  brochure,  allhough  22 percent  said 
they  did  not.  All  but  13 percent  of  receiving  facilities  distributed  the  brochure,  half  to 
every pahent and  half  to an  average  of  69 percent  of their palients.  Brochures  were 
@equently  (74 percent)  personally  handed  to p~ents,  often  accompanied  by an  explan~on 
from  a registered  nurse  (84 percent). 
A large  majority  (76 percent)  of facilities  reported  receiving  the  brochure,  while  22 percent 
said  they  did  not  receive  it and  another  two  percent  did  not  remember  receiving  it.  There 
were  significant  differences  in facilities  receiving  the  brochure  based  on facility  location  and 
type.  Ninety-three  percent  of  rural  facilities  reported  receiving  the  brochure  compared  to 
only  81 and  64 percent  of  suburban  and  urban  facilities  (see  table  1). 
Table  1:  FACILITIES  RECEIVING  BROCHURE 
by locationof facility 
Urban  area  Suburban  area  Rural  area 
Yes  64%  81%  93% 
(30)  (25)  (28) 
No/Didnt  36%  19% 
Remember  (17)  (6)  (7; 
4
 Additionally,  facilities  attached  to hospitals  were  more  likely  (88 vs.  72 percent)  to have 
received  the  brochure  than  free-standing  facilities  (see table  2).  However,  there  were  no 
differences  in the  brochures  distribution  based  on the  size  of the  facility  or the  number  of 
patients  treated. 
Table  2:  FACILITIES  RECEIVING  BROCHURE 
by type  of facility 
Free-standing  Attached  to hospital 
Yes  72%  88% 
(54)  (30) 
No/Didnt  28%  12% 
Remember  (21)  (4) 
The  head  nurse  and/or  dialysis  facility  administrator  most  commonly  determined  whether  the 
brochure  would  be  disseminated  to patients.  Fifty-nine  percent  of head  nurses  and  25 
percent  of dialysis  facility  administrators  determined  whether  the  brochure  would  be 
distributed.  Additionally,  17 percent  of medical  directors,  along  with  nine  percent  of both 
dietitians  and  social  workers,  determined  the  brochures  dissemination. 
Most facilities  hunded the brochure  to patients  and/or placed  it somewhere  accessible  in their 
facility. 
Seventy-four  percent  of facilities  said  they  personally  handed  the  brochure  to patients,  and  13 
percent  gave  it to  family  members  or a signiilcant  other.  Although  47 percent  of facilities 
reported  placing  the  brochure  somewhere  accessible  in the  facility,  only  seven  facilities  relied 
exclusively  on this  method  of dissemination.  Brochures  were  most  commonly  placed  in the 
patient  waiting  room  or  lobby  area,  and/or  placed  on the patient  bulletin  board.  Twelve 
facilities  used  several  of the  above  methods  of distributing  the  brochure,  three  facilities  let 
the  staff  decide  how  it would  be distributed,  and  one  facility  translated  it into  Spariish  first. 
i%irteen percent  of facilities  did Et  distribute  the brochure for  a variety of reasons. 
Of the  thirteen  percent  of facilities  (11 facilities)  not  distributing  the  brochure,  two  facilities 
didnt  do  so because  they  were  either  not  calculating  URR  numbers  at the  time  or  were 
changing  the  measure  of adequacy  reported  to patients.  Another  three  facilities  mentioned 
planning  to distribute  the  brochure  in the  future.  One  facility  reported  not  receiving  enough 
copies  of the  brochure,  one  needed  the  Spanish  version  of the  brochure,  two  facilities  were 
still  evaluating  the  brochure,  and  two  facilities  reported  having  tb.eir own  report  card  or 
method  of reporting  URR  or KT/V  numbers  to patients. 
5
 Hay  of the facilities  reported distributing  the brochure  to every patient,  while the other half 
said they distributed  it to an average  of 69 percent  of patients. 
Facilities  were  split  evenly  on whether  they  distributed  the brochure  to every  patient  or to 
only  a portion  of patients.  Facilities  not distributing  the  brochure  to every  patient,  reported 
distributing  it to an average  of 69 percent  of their  patients.  The  modal  distribution  of the 
brochure  was  78 percent  of patients  with  a median  distribution  of 75 percent. 
In two  separate  patient  surveys  reported  in a companion  OIG  report  (OEI-06-95-O0320),  only 
one-third  of patients  reported  receiving  the  brochure.  The  discrepancy  between  the  number 
of facilities  receiving  the  brochure  (76 percent)  and  the  much  lower  number  of patients 
saying  they  received- the  brochure  could  be explained,  at least  in part,  by  the  fact  that  half  of 
the  facilities  surveyed  did  not  distribute  the  brochure  to every  patient. 
For-profit  facilities  were  almost  three  times  as likely  (74 vs.  26 percent)  to distribute  the 
brochure  to every  patient  compared  to  non-profit  or government-owned  facilities  (see table 
3).  There  were  significant  differences  in brochure  distribution  based  on the  type  of facility 
administration.  Hospital  administered  facilities  were  much  less  likely  (18 vs.  82 percent)  to 
distribute  the  brochure  to every  patient,  compared  to non-hospital  administered  facilities.  8 
Table  3:  FACILITIES  OWNERSHIP  STATUS:  PROFIT  OR  NON-PROFIT/GOVERNMENT 
by distribution  of brochure 
Distributed  to  Dktributed  to  Brochure  not 
every  patient  some  patients  distributed 
Facility  ownership 
Non-profit/Government  26%  48%  73% 
(lo)  (14)  (8) 
For-profit  74%  52%  27% 
(28)  (15)  (3) 
Facilitv  administration 
Hospital  administered  18%  38%  45% 
(7)  (11)  (5) 
Non-hospital  administered  82%  62%  55% 
(31)  (18)  (6) 
Among  facilities  not  distributing  the  brochure  to every  patient,  the  most  commonly  reported 
reasons  were:  1) their  belief  that  many  patients  wouldnt  understand  the  brcchures  content 
(54 percent),  and  2) they  did  not  receive  enough  brochures  to give  one  to every  patient  (37 
percent).  Time  constraints  prevented  the  distribution  of the  brochure  to every  patient 
according  to five  facilities,  while  four  facilities  said  they  didnt  distribute  it because  they 
used  other  education  materials  instead.  Other  facilities  not  distributing  brochures  to each 
6
 patient  reported  the  brochures  were  placed  in the  waiting  area,  they  had  already  discussed  the 
material  with  patients,  or  said  disseminating  the  brochure  was  not  a staff  priority. 
Eighty-four  percent  of facilities  reported they personally  expkzined the brochure to patients, 
with registered  nurses providing  the majonty of these explanations. 
Most  facilities  (84 percent)  reported  their  staff  personally  explained  the  brochure  to patients.

Eighty  percent  of facilities  said  registered  nurses  provided  these  explanations.  Thirty  percent

of dietitians,  18 percent  of  licensed  vocational  nurses  (LVNS),  and  17 percent  of  social

workers  in facilities  also  provided  such  explanations.  Fifteen  percent  of doctors  and  12

percent  of technicians  also  provided  explanations  of the  brochure  to patients.  Although

several  staff  members  might  have  provided  these  explanations,  RNs  had  the  greatest

responsibility.

Facilities  reported  patients  were  usually  alert  but  didnt  always  ask  questions  or didnt  appear

to understand  staff  explanations  of the  brochure.  Almost  all facilities  (97 percent)  said  at

least  half  or  more  of their  patients  appeared  alert  during  their  explanations.  However,  only

67 percent  of facilities  reported  patients  asked  questions  during  these  staff  explanations,  of

which,  34 percent  said  only  half  of patients  did  so,  and  33 percent  said  only  a few.

In  our  patient  surveys  (OEI-06-95-O0321), only  49 percent  of patients  from  our  first  sample,

and  42 percent  from  our  second  sample,  remembered  receiving  an explanation  of the

brochures  content,  although  84 percent  of facilities  reported  giving  explanations  of the

brochure  to patients.  This  discrepancy  suggests  some  patients  may  not  have  actively  listened

to the  explanation,  or the  explanation  may  have  been  cursory  or  low  key,  and  thus

forgettable.

Seventy-three  percent  of facilities  said  a few  patients  didnt  appear  to understand  the

explanation,  while  another  nine  percent  said  most,  or about  half,  of patients  didn t

understand.

The  majority  of patients,  reportedly,  were  listening  during  staff  explanations,  with  only  59

percent  of facilities  saying  a few  patients  werent  listening.  Seven  facilities  reported  a few  or

more  patients  slept  through  the  staff  explanation.  Additionally,  87 percent  of facilities

reported  no patients  objected  to having  the  information  explained  to them,  while  only  three

facilities  said  that  about  half  or  more  of their  patients  objected  to such  an explanation.

Facilities  with  at least  50 percent  of their  patients  interested  in finding  out  about  how

adequate  their  dialysis  is were  also  significantly  more  likely  to explain  the  brochure  to

patients.  Ninety-two  percent  of facilities  with  over  half  of their  patients  interested  in their

adequacy  information  also  explained  the  brochure,  compared  to 77 percent  of facilities  with

fewer  than  half  of their  patients  interested  in adequacy  information.

7
 BROCHURES  EFFECTIVENESS 
Seventy-two  percent  of facilities  rated  the  brochures  effectiveness  as  a ptient  educmonal 
tool  as  either  excellent  or good,  and  66 percent  said  the  brochure  was  somewhat,  or  very, 
easy for  their  p~ents  to  understand.  Almost  all facilities  (98 percent)  said ptients  need  to 
know  the  informtion  in the  brochure,  and  82 percent  considered  a brochure  to be an 
approptie  method  for  communicating  d to patients. 
Facilities  ratinm  of brochures  effectiveness.

Twenty-one  percent  of facilities  rated  the  brochures  overall  effectiveness  in educating

patients  as excellent,  and  another  51 percent  rated  it as good.  Twenty-four  percent  of

facilities  felt the  brochure  did  a fair job  of achieving  this  goal,  while  only  two  facilities  rated

the  effectiveness  of the  brochure  in educating  patients  as poor  or very  poor.

Typical  comments  from  facilities  judging  the  brochures  effectiveness  as excellent  or good

include  the  following:  1) (It) was  easy  to understand  with  excellent  and  direct  information;

2)	 Makes  the patient  and  family  aware  of the  need  for  adequate  dialysis;  3)  It was  a good 
introduction  to this  topic  and  assisted  staff  in presenting  information;  and  4)  Quick  self-
learning  and  backed  up  with  concept  we try  to sell  to patients.   
A sampling  of comments  from  facilities  finding  the  brochure  much  less  effective  for 
educating  patients  listed  several  concerns:  1) Doesnt  address  24 week  therapy,  diabetes, 
residual  function...;  2)  The  patients  who  most  need  information  are  the  same  ones  who 
struggle  to understand...;  3)  Only  some  patients  are  interested;  4)  Language  is too 
sophisticated  for  most  of our  patients;  5)  Mainly  due  to mismanaged  distribution  methods; 
and  6)  Patients  receive  so much  written  material  already,  they  dont  pay  attention...   
Facilities  rating  the  brochure  as excellent  for  educating  patients  were  much  more  likely  to 
report  more  of their  patients  were  interested  in adequate  dialysis.  For  example,  facilities 
rating  the  brochure  as excellent  reported  75 percent  of their  patients  were  interested  in 
adequate  dialysis.  In contrast,  facilities  who  did  not  give  the brochure  an excellent  rating 
reported  only  52 percent  of their  patients  were  interested  in adequate  dialysis  (see table  4). 
Table  4:  PERCENT  OF  PATIENTS  REPORTED  INTERESTED  IN ADEQUATE  DIALYSIS 
by facilities  rating  the brochure  as excellent 
Facility  rated  brochure  as excellent  Average  percent  of patients  interested  in adequate  dialysis 
Yes  I  75% 
No  52% 
I 
Additionally,  facilities  rating  the  brochure  as excellent  in educating  patients  reported  almost 
1.5  times  more  of their  patients  track  their  URR  or KT/V  numbers  from  month  to month 
(see  table  5). 
8
 Table  5:  PERCENT  OF  PATIENTS  IN FACILITIES  REPORTED 
TRACKING  THEIR  URR  OR  KT/V  NUMBER  MONTH  TO  MONTH 
by facilities  rating  the brochure  as excellent 
I 
Average  percent  of patients 
Facility  rated  brochure  as excellent  tracking  number 
Yes  I  40% 
II I 
No  27% 
Facilities  also  were  more  likely  to rate  the  brochure  as excellent  if their  patients  had  been 
undergoing  dialysis  for  a longer  period  of time  (see table  6). 
Table  6:  AVERAGE  MONTHS  PATIENTS  ON  DIALYSIS  PER  FACILITY 
by facility  rating  of brochure 
Facility  rated  brochure  as excellent  Average  months  patients  on dialysis 
Yes  55 
No  41 
Facilities  ratimm  of brochures  understandability. 
Sixty-six percent  of facilities  thought the brochure  wa  somewhat,  or veq,  easy for  mos~ of 
their patients  to understand. 
The majority  (66 percent)  of facilities  reported  the  brochure  was  either  somewhat  (38 
percent),  or  very,  easy  (28 percent)  for  most  patients  to understand.  Eighteen  percent  said  it

was  neither  easy  nor  hard  to understand  and,  14 percent  said  it was  somewhat  hard  to

understand.  ~  facilities  said  the  brochure  was  verv  hard  to understand  and  only  one  facility

reported  not  knowing  how  well  patients  understood  the  brochures  contents.

Our  patient  surveys  (OEI-06-95-O0320)  showed  an even  higher  number  of patients  (84

percent)  thought  the  brochure  was  somewhat,  or  very,  easy  to understand.  However,  the

inability  of many  patients  to accurately  recall  key  brochure  concepts  tempers  their  high

ratings  of ease  of understanding  the  brochure  somewhat.

Ten  facilities  reported  most  of their  patients  found  the  brochures  content  somewhat  hard  to

understand,  citing  several  reasons  for  this  difficulty  in patient  understanding.  Six facilities

found  the  use  of the  terms  URR  and  KT/V  too  confusing,  and  five  facilities  said patients

were  unclear  what  number  the  brochure  was  talking  about.  Four  facilities  said the

brochures  reading  level  was  too  high,  and  three  facilities  said  the  brochures  content  was  too

advanced  for  their  patients.

9
 Facilities  reporting  the  brochure  as very  easy  to understand  served  patients  with  an average 
of  15 more  months  experience  on dialysis  (see table  7).  Such  a correlation  suggests  that 
patients  undergoing  dialysis  for  longer  lengths  of time  may  be more  interested  in or receptive 
to the  brochures  content. 
Table  7:  AVERAGE  MONTHS  PATIENTS  ON  DIALYSIS  PER  FACILITY 
by facility  rating  of brochure 
Brochure  rated  as very  easy  to understand  Average  months  patients  on dialysis 
Yes  56 
No  I  41 
Forty-six percent  of facilities  reported most or all of their patients  wanted to know their own 
URR or KT/V  number afier receiving  the brochure,  and 47 percent  said hay  or more of their 
patients  asked questions  about the brochures  content. 
Forty-six  percent  of facilities  reported  most  or all of their  patients  wanted  to know  their  own 
adequacy  numbers  after  receiving  the  brochure.  Forty-seven  percent  of facilities  also 
reported  about  half  or  more  of their  patients  asked  questions  about  the  brochures  content. 
However,  33 and  40 percent  of facilities  reported  onlv  a few patients  wanted  to know  their 
own  UR.R or KT/V  numbers  and/or  asked  questions  after  receiving  the  brochure,  with  six 
and three  facilities,  respectively,  reporting  none  of their  patients  did  either  of these  things. 
Eighteen  percent  of facilities  reported  about  half  or more  of their  patients  requested  more 
information  about  their  treatment,  while  55 percent  of facilities  said only  a few  patients  did 
this  after  receiving  the  brochure.  Additionally,  22 percent  of facilities  said  no patients  made 
such  an inquiry. 
However,  far  fewer  facilities  reported  any  negative  reaction  to the  brochure.  Only  11 
percent  of facilities  reported  about  half  or  more  of their  patients  threw  the  brochure  away 
without  reading  it,  and  42 percent  said  only  a few  of their  patients  did  this.  Only  ten percent 
of facilities  reported  about  half  or more  patients  were  nt  interested  in the  brochures 
information.  Fifty-eight  percent  of facilities  reported  only  a few  patients  were  @  interested 
in the  brochures  information,  and  13 percent  of facilities  said  that  none  of their  patients 
were  ~t  interested  in the  brochures  content. 
Facilities  ratimzs  of the  inmortance  of brochures  content. 
Almost  all facilities  (98 percent)  said patients  need to know the information  in the brochure, 
Clearly,  there  is almost  unanimous  facility  support  of the  adequacy  information  discussed  in 
the  brochure.  Further,  the  two  facilities  disagreeing  with  the  brochures  content  said  this 
was  only  because  they  had  not  seen  a copy  of the brochure  or were  already  including  this 
information  on  each  patients  monthly  lab  report. 
10
 Almost  all  facilities  had  something  positive  to  say about  why  the  brochures  content  provided 
critical  information.  The  majority  of these  explanations  stressed  the  importance  of teaching 
patients  to be actively  involved  in their  dialysis,  and  noted  the  brochure  could  reinforce  staff 
educational  efforts  and  help  patients  better  understand  why  they  might  have  to  increase  their 
treatment  time  on the  dialysis  machines. 
Specifically,  the  following  comments  represent  the  enthusiasm  facility  staff  expressed  about 
this  information:  1) More  educated  patients  (are)  more  proactive  and  more  responsible  in 
their  care...;  2)  Encourage(s)  compliance  with  attendance  and  patients  to  stay  on prescribed 
times...;  3)  Encourages  patients  to be more  informed  and  take  more  responsibility,   4)  So 
patients  will/can  appreciate  need  for  full  time  on dialysis;  5)  The  brochure  helps  reinforce 
information  given  by  us;  6)  The  more  (educational)  information,  the  better;  and  7)  The 
more  patients  know  about  their  illness,  the better  control  they  can  have.  
Facilities  ratinm  of using  a brochure  as educational  tool. 
Eighty-two percent  offacilities  reported a brochure is the method they would have used to 
communicate  this information  to patients,  while 17 percent  said they did Wt  support the 
brochure as the method they would have used. 
Facility  staff  supporting  the  brochure  as the  method  they  would  have  used  to inform  patients 
said  this  because  the  brochure  is compact,  to the point,  easy  to read  and  distribute,  and  gives 
patients  and  families  a chance  to review  the  information  at a later  time. 
Others  said  the  brochure  was  one  of several  methods  they  would  have  used,  especially  for 
their  literate  English-speaking  population.  A few  staff  also  said they  would  supplement  the 
brochure  with  a staff  explanation  of the  information.  Many  staff  members  expressti  the 
importance  of visual  aids  and  charts,  such  as the  one  in the  brochure. 
The  following  comments  are typical  of facility  staff  views  on the  usefidness  of the  brochure 
as an educational  tool:  1) They  (patients)  needed  to  see printed  educational  material  to 
believe  its  true;  2)  Quick,  self-learning  and  backed  up concept  trying  to  sell to patients; 
3)	 Easy  to  reach  all patients  and  we use  them  in our  new  patient  orientation  packets;  4) 
Was  easy  to understand  - colors  were  good  in attracting  patient  attention;  5)  Best  way  to 
get  information  to patients;  6) Important  they  look  at and  refer  back  to;  and  7)  Good 
teaching  tool  if individually  given,  otherwise  not  sure...   
Facility  staff  less  supportive  of using  a brochure  said they  would  have  used  a videotape 
instead,  especially  for  less  literate  patients.  Others  would  have  used  a computer-generated 
table  of this  information,  or  relied  on  individual  verbal,  face-to-face  teaching,  instead. 
11
 Facilities  use  of the  brochure  in educational  outreach  materials. 
i%irty percent  of facilities  reported they are already  using the brochure or brochures  content 
in their educational  outreach materials;  others have plans  to do so, and gave some plausible 
explanations  why they have not. 
Almost  one-third  of facilities  used  the  brochure  in their  educational  outreach  materials, 
mostly  by  including  the  material  in their  patient  newsletter  or using  it in an educational  in-
service  training,  or to educate  new  patients.  Other  facilities  used  the brochure  in teaching 
families,  posting  it on the  patient  bulletin  board,  and  in reviewing  the  material  with  patients 
when  going  over  monthly  lab  report  cards. 
Although  70 percent  of facilities  did  not  report  including  the  brochures  content  in their 
educational  material,  31 of 55  facilities  specifically  explained  why  they  had  not  included  the 
brochure  or  its content  in their  outreach  efforts. 
Specifically,  twelve  facilities  indicated  they  have  no newsletter  or educational  outreach 
materials.  Seven  facilities  were  planning  to  include  the  brochure  in their  future  outreach  but 
four  facilities  said  they  had  no need  to do  so.  They  feel  handing  the  brochure  out  to all 
patients  was  enough,  or that  they  continuously  explain  this  information  monthly.  Four 
facilities  said  they  havent  had  an opportunity  due  to time  constraints.  One  facility  displayed 
the  brochure  in their  lobby  area.  One  facility  didnt  include  the  brochure  because  the 
language  was  too  sophisticated  for  most  of their  patients. 
Facilities  innovative  methods  in educating  Datients. 
Facilities  use  a variety  of innov~ve  methods  to educate  ESRD  pti.ents  about  their 
treatment.  Such  innovative  methods  include  using  videotapes  during  patients  dtiysis 
tre@nents,  bulletin  boards,  posters,  or  wall  chatis;  along  with  educational  cbsses,  in-
service  trmning,  newsletters,  and  monthly  repoti  cards. 
Videotape  was  the  most  frequently  mentioned  (ten  facilities)  method  used  to educate  patients

about  their  treatment.  Videos  can be  used  during  patients  treatments  and  assure  all patients

better  understand  the  material,  even  those  with  reading  difficulties.  One  facility  was  using

videos  produced  by  local  physicians  and  featuring  their  own  patients.

Four  facilities  reported  an innovative  use  of bulletin  boards,  wall  charts,  and  patient  incentive

programs  to  improve  dialysis  treatment,  Other  facilities  conduct  patient  in-service  training,

educational  classes,  and/or  use  a theme  of the  month  to focus  staff  and  patients  on  a

particular  topic.  Facilities  also  employ  monthly  newsletters,  report  cards,  and  one-on-one

teaching  to educate  patients  about  their  treatment.

Four  facilities  conduct  educational  meetings  before  new  patients  first  begin  their  treatment  to

help  them  better  understand  their  future  dialysis  treatment.  Two  facilities  use  current

patients  to teach  their  new  patients.

12
 Facilities  recommendations  for  future  educational  initiatives. 
Facilities  recommended  thti  future  brochures  for  ESRD  palients  should  be simplified,  use 
lkyman  s terms,  and  include  more  pictures,  diugrams,  and  bright  colors.  Additionally, 
facilities  recommended  providing  a larger  supply  of brochures  so facilities  can  distribute 
them  to every  ptient. 
The  majority  of  recommendations  made  by facilities  (13 facilities)  for  future  brochures  for 
ESRD  patients  involved  the presentation  of the  brochures  content.  Facilities  recommended 
brochures  not  be too  detailed,  but  instead  include;  catchy  titles,  more  visual  explanations, 
more  graphs,  and  larger  type  for  visually  impaired  patients.  Additionally,  facilities 
recommended  creating  a separate  brochure  for patients  with  lower  reading  levels.  One 
facility  wanted  the  Know  Your  Number  brochure  to  leave  blanks  on the  recommended 
level  of URR  or KT/V  numbers  so facilities  could  assign  higher  levels  for  their  patients, 
while  one  facility  wanted  to  see the  brochure  split  into  two  brochures,  one  discussing  URR 
and  one  discussing  KT/V. 
Seven  facilities  recommended  printing  the  brochure  in additional  languages,  with  the  majority 
requesting  Spanish  brochures.  These  facilities  apparently  were  not  aware  HCFA  has  already 
produced  a Spanish  version  of the  Know  Your  Number  brochure  which  it will  distribute 
shortly  to facilities. 
Six  facilities  recommended  improvements  in the  distribution  of future  brochures,  mainly  by 
assuring  they  receive  a larger  supply  of brochures;  one  for  each  patient,  plus  extras  to 
display  in certain  areas  of the  facility.  One  facility  reported  confusion  about  how  the 
brochures  were  distributed  to patients.  This  facility  never  received  the  brochure  and  was  told 
by their  network  that  the  brochures  were  mailed  individually  to patients.  One  facility 
recommended  all  staff  members  be informed  prior  to distributing  the brochure  to patients. 
Six  facilities  wanted  to  see additional  brochures  on  various  topics  that  help  patients  improve 
their  compliance  and  overall  treatment.  Recommended  topics  included:  fluid  compliance, 
phosphate  binders,  and  calcium  intake. 
The  creation  of educational  progmm  videos  for  both  patients  and  staff  was  recommended  by 
two  facilities,  while  one  facility  wanted  to  see follow-up  material  to the  Know  Your 
Number  brochure,  including  a more  in-depth  explanation  and  a larger  graph. 
Lastly,  two  facilities  suggested  continuing  communication  from  dialysis  facilities  to assure 
new  patients  receive  introductory  information  about  dialysis  and  the  role  of networks. 
13
 DIALYSIS  ADEQUACY 
Facihlies  smii  ai  least  50 percent  of their  pahents are  interested  in the  adequacy  of their 
diulysis,  with  29 percent  tracking  their  numbers  month-to-month.  However,  only  77 
percent  of facilities  calculate  pm-ents  numbers  d  least  monthly,  with  21 percent  doing  this 
only  quatierly.  Further,  only  53 percent  of facilities  ~ve p~ents  their  numbers  all the 
time;  many  do  so far  less,  16 percent  do this  less  than  half  the  time. 
An  average  of 57 percent  of patients  from  all facilities  were  reported  to be  interested  in 
finding  out  how  adequate  their  dialysis  is.  The  modal  percent  of interested  patients  was  50 
percent,  with  a median  of 60 percent  of patients  interested  in knowing  the  adequacy  of their 
dialysis. 
The  majority  of facilities  (77 percent)  calculate  patients  URR  or KT/V  numbers  at least 
monthly,  but  21 percent  of facilities  calculate  such  numbers  only  on a quarterly  basis,  and  3 
facilities  calculate  adequacy  numbers  only  as ordered  by the  doctor  or other  staff  members. 
Free-standing facilities  were more likely to report more of their patients  are interested  in 
jinding  out abou~ the adequucy  of their dialysis and were also more likely to calculate 
patients  adequacy  information  on a monthly basis,  compared to hospital-based facilities. 
Free-standing  facilities  were  more  likely  (61 vs.  42 percent)  to report  half  or more  of their

patients  were  interested  in finding  out  how  adequate  their  dialysis  is,  compared  to hospital-

based  facilities.  Free-standing  facilities  were  also  three  times  more  likely  (76 vs.  24 percent)

to calculate  patients  adequacy  numbers  at least  monthly  compared  to hospital-based

facilities.

Facilities  who calcukzte their patients  numbers monthly  or more oj?en were much more likely 
to have distributed  ~he brochure  to every patient. 
Of facilities  reporting  they  distributed  the  brochure  to every  patient,  87 percent  said  they  also 
calculated  patients  URR  or KT/V  numbers  at least  on a monthly  basis.  In contrast,  of 
facilities  distributing  the  brochure  to just  some  of their  patients  or to none  at all  only  62 and 
64 percent,  respectively,  calculated  patients  URR  or KT/V  numbers  at least  monthly. 
(see table  8) 
Table  8:  FREQUENCY  OF  CALCULATING  PATIENTS  URR  OR  KT/V  NUMBER 
by distribution  of brochure 
Dktributed  to  Distributed  to  Brochure  not 
Number  calculated  every  patient  some  patients  distributed 
Monthly  or more  87%  62%  64% 
(33)  (18)  (7) 
Less  than  monthly  13%  38%  36% 
(5)  (11)  (4) 
14
 Facilities  with  patients  averaging  14 months  longer  on dialysis  (48 months  vs.  34 months) 
were  significantly  more  likely  to calculate  and  share  patient  URR  or KT/V  numbers  on a 
monthly  basis  (see  table  9). 
Table  9:  AVERAGE  MONTHS  PATIENTS  ON  DIALYSIS  PER  FACILITY 
by facilities  giving  monthly  URR  or KT/V  numbers  to patients 
I 
Number  calculated  monthly  I  Total  months  patients  on dialwis 
I 
Yes  48 
No  I  34 
Although  53 percent  of facilities  said they give patients  their  URR or KT/V numbers all the 
time,  muny facilines reported doing so far  less,  with 16 percent  giving this information  less 
than half of the time. 
The  majority  (53 percent)  of facilities  report  giving  patients  their  URR  or KT/V  numbers  100 
percent  of the  time,  while  27 percent  give  this  information  only  75 percent  of the  time.  Nine 
percent  of facilities  say they  give  this  adequacy  information  to patients  only  half  of the  time, 
and  seven  percent  of facilities  only  do  so 25 percent  of the  time. 
Four  percent  of facilities  never  give  patients  information  about  their  URR  or KT/V  numbers. 
Two  facilities  gave  the  following  reasons  for  not  sharing  this  information:  1) Most 
outpatients  are  very  sick.  We  are  a hospital-based  unit,  and  2)  Most  patients  are  not 
interested  or didn t understand  URR  or KT/V  at the  time  the  brochure  came  out.  
In our  patient  surveys  (OEI-06-95-00320),  we found  only  45 percent  in our  first  sample  and 
35 percent  in our  second  sample  identified  the  URR  test  as one  used  in their  dialysis  facility 
to  measure  the  adequacy  of their  dialysis,  with  even  fewer  identifying  the  KT/V  test  (37 and 
36 percent).  Additionally,  about  one-quarter  of all patients  sampled  said they  did  not  know 
which  test(s)  were  used  by their  dialysis  facility  to measure  adequacy. 
Free-standing  facilities  were  twice  as  likely  (64 vs.  32 percent)  to give  patients  their  URR  or 
KT/V  numbers  100 percent  of the  time,  compared  to  hospital-based  facilities. 
Of facilities  distributing  the  brochure  to every  patient,  73 percent  also  say they  give  patients 
their  URR  or KT/V  number  100 percent  of the time,  compared  to 43 and  36 percent  of 
facilities  distributing  it to a portion  of their  patients  or  not  distributing  the  brochure  at all. 
(see table  10) 
15
 Table  10:  FREQUENCY  PATIENTS  GIVEN  URR  OR  KT/V  NUMBER 
by distribution  of brochure 
Distributed  to  Dktributed  to  Brochure  not 
Frequency  number  given  every  patient  some  patients  distributed 
100%  of time  73%  43%  36% 
(27)  (12)  (4) 
50-75 % of time  19%  46%  27% 
(7)  (13)  (3) 
25%  of time  to never  given  8%  I  11%  36% 
(3)  (3)  (4) 
Facilities  reporting  higher  percentages  of patients  interested  in adequate  dialysis  also  were

significantly  more  likely  to give  patients  their  URR  or KT/V  number  100 percent  of the

time,  than  facilities  reporting  patients  with  lower  interest  in adequate  dialysis.  Facilities

giving  adequacy  information  100 percent  of the  time  were  over  1.5 times  more  likely  (64 vs.

41 percent)  to also  report  patients  were  interested  in adequate  dialysis  (see table  11).

Although  we dont  know  whether  patients  are  more  interested  in adequate  dialysis  because

they  are  more  frequently  given  this  information  or  visa-versa,  an observable  correlation

exists  between  these  variables,  suggesting  the  importance  of both  of these  important

elements.

Table  11:  PERCENT  OF  PATIENTS  IN FACILITIES  REPORTED 
INTERESTED  IN ADEQUATE  DIALYSIS 
by frequency  patients are given  URR or KT/V  number 
I 
Frequency  of patients  given  Average  percent  of patients 
URR  or KT/V  #  interested  in adequate  dialysis 
100 % of time	 64% 
(55) 
50-75 % of time	 54% 
(39) 
25%  of time  to  41% 
never  given  (11) 
16
 Significant  differences  also  existed  in the  frequency  with  which  some  facilities  gave  patients 
their  URR  or KT/V  numbers  based  on the  percentage  of Hispanic  patients  and  patients  of 
other  backgrounds,  such  as Indian,  Lebanese,  and/or  Hawaiian/Samoan  (see table  12). 
Facilities  with  a higher  proportion  of these  patients  were  much  more  likely  to not give  their 
patients  adequacy  information  on a regular  basis.  Additionally,  near  significant  differences 
existed  based  on the  percentage  of black  patients  per  facilities.  Facilities  distributing 
adequacy  information  only  25-50  percent  of time  also  had  a majority  of black  patients, 
instead  of a majority  of wbite  patients. 
Table  12:  FREQUENCY  PATIENTS  GIVEN  URR  OR  KT/V  NUMBER 
by distribution  of patients  by race 
I  Dktribution  of patients 
in facilities  by race 
Frequency  # given  %White  % Black  % Hispanic  % Asian  % Other 
100% of time  47%  44%  5%  2%  2% 
75%  of time  47%  33%  14%  5%  1% 
50%  of time  38%  44%  1%  3%  14% 
25%  of time  30%  56%  5%  7%  2% 
Never  54%  17%  26%  o%  3% 
Facilities  reported an average  of 29 percent  of their patients  track their  URR or KT/V 
numbers j?om  month to month; patients  given ~his information  all the time are signljicantly 
more likely to track their numbers. 
Vast  differences  existed  in the  percentage  of patients  tracking  URR  or KT/V  information 
from  month  to month,  as  reported  by  facilities.  Just  under  one-third  of facilities  reported  ten 
percent  or  fewer  of their  patients  track  this  information,  with  the  median  number  of patients 
who  track  their  number  being  25 percent.  Nevertheless,  the  largest  number  of facilities  (19 
percent)  reported  50 percent  of their  patients  track  adequacy  information. 
Facilities  reporting  higher  percentages  of patients  tracking  URR  or KT/V  numbers  on a 
monthly  basis  also  were  signitlcantly  more  likely  to also  be facilities  who  report  they  give 
patients  this  information  all the  time  (see table  13).  Facilities  giving  this  information  100 
percent  of the  time  averaged  35 percent  of their  patients  tracking  adequacy  information, 
compared  to only  25 and  14 percent  of facilities  giving  this  information  50-75  percent  of the 
time  or less. 
This  correlation  reinforces  the  importance  of facilities  giving  this  information  to their  patients 
every  time  it is calculated,  so that  patients  can  actively  participate  in their  dialysis  care. 
17
 Table  13:  Percent  of patients  in facilities  reported 
tracking  URR  or KT/V  number  from  month  to month 
by frequency  patients are given  URR  or KT/V  number 
Frequency  of patients  given  URR  Mean  of patients 
or KTIV  #  tracking  number 
100%  of time  35% 
(49) 
50-75 % of time  25% 
(35) 
25%  of time  to  14% 
never  given  ( 7) 
Facilities  regulurly  share patients  phosphorus,  potassium,  albumin,  and B. U.N. test results 
with them. 
In addition  to facilities  sharing  information  about  patients  URR  or KT/V  test  results,  98 and 
97 percent  of facilities  reported  they  regularly  share  phosphorus  and  potassium  test  results 
with  patients,  while  95  and  93 percent  share  patients  albumin  and  B. U. N results.  Thirty-
five  percent  of facilities  also  share  patients  HCT/Hematocrit  test  results,  while  29 percent 
give  patients  their  calcium  test  results  regularly.  The  protein  catabolic  rate  is shared  with 
patients  by  25 percent  of facilities  and  iron  test  results  are  shared  by  15 percent  of facilities. 
Additional  test  results  regularly  shared  with  patients  include:  creatinine,  glucose, 
cholesterol,  ferritin,  and  Hgb/Hemoglobin.  The  only  facility  reporting  they  do  not  share  test 
results  with  patients  regularly  also  said  only  10 percent  of their  patients  were  interested  in 
adequate  dialysis.  This  same  facility  said  it calculates  URR  and/or  KT/V  numbers  on a 
monthly  basic  but  never  shares  these  test  results  with  patients. 
Additionally,  the  results  of our  surveys  (OEI-06-95-O0320)  showed  patients  most  frequently 
identified  the  potassium  test  (60 and  61 percent  of patients)  and  the phosphorus  test  (55 and 
58 percent)  as being  used  by their  dialysis  facility  to measure  adequacy,  rather  than  the  URR 
or KT/V  test. 
18
 RECOMMENDATIONS 
Overall,  we found  the  brochure  has the potential  to serve  as an effective  part  of a broader

strategy  of improving  patients  understanding  of adequate  dialysis  and  enlisting  their  support

in monitoring  the adequacy  of their  dialysis.  The  Know  Your  Number  brochure  was  given

a positive  assessment  by  facilities  receiving  it.  However,  the brochure  was  not  received  by

all facilities,  nor  was  it fully  distributed  or explained  to all patients  by  all  receiving  facilities.

Facilities  receiving  the  brochure  were  receptive  to the  brochures  content,  reporting  it was

essential  information  for  patients  to understand.  Nevertheless,  facilities  varied  greatly  in how

they  embraced  the  brochures  concepts  in practice,  with  some  fully  engaging  patients  in

understanding  their  own  adequacy  information  by calculating  their  URR  or KT/V  number  on

a monthly  basis  and  regularly  giving  these  numbers  to patients,  while  others  provide  key

adequacy  information  to patients  far  less  often.  Yet,  when  facilities  do provide  this  adequacy

information,  it appears  to increase  patient  interest  and  involvement  in monitoring  the

adequacy  of their  dialysis.  It seems  clear  that  the  brochures  effectiveness  in educating

patients  and  involving  them  in monitoring  dialysis  adequacy  is heavily  dependent  upon

facility  practices  and  the  quality  of  staff-patient  relationships.

Based  on  our  findings,  we  recommend  that  HCFA  take  the  following  actions  to  improve

kidney  dialysis:

DISSEMINATION.  Assure  all facilities  receive  an ample  supply  of brochures  and  should

encourage  them  to distribute  a brochure  to every  patient.  HCFA  might  also  consider

providing  guidelines  to facilities  on effective  dissemination  approaches.

BROCHURE  CONTENT  & FORMAT.  Simply  the  language  and  concepts  as much  as

possible  in any  subsequent  or  revised  patient  brochures.  Consideration  might  be given  to

developing  alternate  versions  of the  brochure  for  different  reading  levels  and  to add  greater

use  of color  and  graphics  to gain  interest  and  promote  patient  understanding.

CONTINUING  PATIENT  EDUCATION.  Encourage  continuing  efforts  by facilities  to

educate  patients  and  to reinforce  the  importance  of patient  understanding  and  monitoring  of

the adequacy  of their  dialysis.  A training  video  to  introduce  and/or  reinforce  the  brochure

concepts  might  also  prove  effective,  based  on the  suggestions  and  experiences  of  some

facilities.

USE OF ADEQUACY  MEASURES.  Encourage  facilities  to calculate  dialysis  adequacy

measures  on a monthly  basis  and  share  these  numbers  with  patients  on a regular  basis  in

order  for  the  brochure  to achieve  its intended  impact  on patients  and  facilities.

19
 AGENCY  COMMENTS 
The  Health  Care  Financiag  Administration  (HCFA)  concurred  with  all the  reports 
recommendations.  We  appreciate  their  responsiveness  to our  proposals.  However,  we have 
a new  concern  that  has  arisen  since  we issued  our  draft  report. 
We  originally  recommended  that  HCFA  encourage  facilities  to calculate  dialysis  adequacy 
monthly  and  share  these  numbers  with  patients  on a regular  basis.  HCFA  informed  us that 
they  had  no requirement  for  facilities  to measure  the  adequacy  of dialysis  at prescribed 
intervals  but  that  their  revised  ESRD  Conditions  for  Coverage  will  require  facilities  to 
calculate  the  adequacy  of dialysis  quarterly.  This  is in marked  constrast  to the  upcoming 
National  Kidney  Foundations  Dialysis  Outcome  Quality  Initiative  guidelines  which 
recommend  a standard  practice  guideline  of a monthly  URR  or KT/V  calculation,  not 
quarterly  calculations.  We  are  concerned  that  facilities  will  interpret  HCFAs  Conditions  for 
Coverage  as the  acceptable  standard  and  conduct  adequacy  testing  only  quarterly. 
In our  view,  this  could  pose  a severe  health  risk  for  ESRD  patients  whose  dialysis  could  go 
three  months  before  needed  corrections  could  be made  to their  treatment.  We  are  convinced 
that  facilities  should  be required  to calculate  adequacy  numbers  monthly  and  we urge  HCFA 
to reconsider  or  amend  the  Conditions  for  Coverage  accordingly. 
Discussion  of Technical  Comments 
HCFA  suggested  we assess  whether  some  of the  comprehension  issues  might  be attributed  to 
a lack  of cultural  sensitivity  in the  brochure.  We  did  analyses  looking  at both  a patients 
race  and  primary  language.  However,  we found  no statistically  significant  differences  on key 
questions  related  to comprehension  based  on these  two  variables. 
Additionally,  HCFA  called  attention  to the  Spanish  version  of the  brochure.  We  were  happy 
to mention  that  50,000  brochures  would  be printed  for  later  distribution  in the  background 
section  of both  reports.  Of course  this  study  examined  only  the  English  version;  at the  time 
of our  facility  survey  the  Spanish  version  had  not been  distributed. 
See Appendix  C for  a full  text  of HCFAS  comments. 
20
 EN  DNOTES

1.  lltle  42  CFR  4(H.  2 lW,  Conditions  tor  Coverage  otSuppliers  otESRD  Services, 
October  1993;  pg.  127. 
2.  Hemodialysis  therapy  cleans  and  filters  a patients  blood  with  a dialyzer.  This 
procedure  can  be done  at home  or  in-center  by nurses  or trained  technicians. 
Hemodialysis  is usually  performed  about  three  times  a week,  with  treatments 
lasting  2 to 4 hours  each.  Through  this  treatment  and  a proper  diet,  ESRD  patients 
can  greatly  reduce  the  amount  of wastes  building  up  in their  blood. 
3.  Peritoneal  Dialysis  replaces  the  work  of the  kidneys  by removing  extra  water, 
wastes,  and  chemicals  from  the  body.  A cleansing  solution,  called  dialysate,  helps 
facilitate  a patients  peritoneal  membrane  of the  abdomen  to filter  their  blood, 
requiring  a catheter  to be permanent  y placed  into  their  abdomen.  Wastes  are 
filtered  from  a patients  body  once  the  dialysate  is drained.  There  are  three  types 
of peritoneal  dialysis,  with  Continuous  Ambulatory  Peritoneal  Dialysis  (CAPD) 
being  the  most  common. 
4.  The  Urea  Reduction  Ratio  (uRR)  informs  patients  how  well  hemodialysis  is 
working  by telling  them  the  percentage  of urea  (waste  products)  removed  from 
their  body  during  their  treatment. 
5.  Some  dialysis  facilities  calculate  a KT/V  ratio  instead  of URR.  This  urea  kinetic 
model  or  index  is defined  as the  dialyzer  urea  clearance  (K) multiplied  by the 
patients  treatment  time  (T)  divided  by the  volume  of urea  distribution  (V). 
6.  Consensus  Development  Conference  Panel.  Morbidity  and  mortality  of renal 
dialysis:  An  NIH  consensus  conference  statement.  Ann  Intern  Meal,  1994;  121: 
62-70. 
7.  Renal  Physicians  Association.  Clinical  practice  guideline  on  adequacy  of 
hemodialysis:  Clinical  practice  guideline,  number  1.  December,  1993 
8.  Strong  linkages  exist  between  facilities  ownership  type  and  the  way  they  are 
administered.  Over  three-fourths  (79 percent)  of the  non-profit/government-owned 
facilities  are  also  administered  by a hospital,  while  only  one  for-profit  facility  was 
administered  by a hospital. 
21
 APPENDIX  A 
RESPONDENT  FACILITY  PROFILE 
Kev  facilitv  characteristics 
Sixty-seven  percent  of our  facilities  were  free-standing,  while  30 percent  were  attached  to a

hospital,  and  three  percent  were  part  of a clinic  or  medical  complex.  Sixty-five  percent  of

facilities  were  non-hospital  administered  and  35 percent  were  hospital  administered.  The

majority  (56 percent)  of  responding  facilities  were  for-profit,  39 percent  were  not-for-profit,

and  five  percent  were  government  facilities.

Forty-three  percent  of dialysis  facilities  were  located  in urban  areas,  29 percent  in suburban

areas,  and  28 percent  in rural  areas.  Our  responding  dialysis  facilities  had  an average  of  16

dialysis  stations,  ranging  between  two  and  eighty.  The  median  number  of dialysis  stations

was  13.

The  average  length  of participation  in Medicare/Medicaid  for  responding  facilities  was  11

years,  with  four  facilities  participating  for  only  one  year  and  eight  facilities  participating  for

20 years.  The  mode  for  our  facilities  was  19 years  (27 facilities)  and  the  median  was  11

years.

Patient  education  resDonsibifities

Sixty-four  percent  of responding  facilities  had  a primary  person  in charge  of patient

education.  Eighty-nine  percent  of facilities  listed  registered  nurses  as the  position  primarily

responsible  for patient  education,  while  66 and  59 percent  of facilities,  respectively,  listed

the  dietitian  and/or  social  worker  as having  this  role.  Doctors  provided  patient  education  in

43 percent  of facilities,  dialysis  facility  administrators  in 21 percent,  technicians  in 34

percent,  and  LVNS  in 26 percent  of facilities.  Other  staff  members  playing  a primary  role  in

educating  patients  include  the  education  or  inservice  coordinator  and  the  director  of nursing.

Three  facilities  specifically  mentioned  that  everyone  in the  facility  or a specific  staff  team  is

in charge  of patient  education.

FACILITY  PATIENT  DEMOGRAPHICS 
Average  age  of patients 
The  average  estimated  age  of ESRD  patients  from  responding  facilities  was  58  years  old, 
with  a range  of patients  between  the  ages  of nine  and  75.  The  mode  and  the  median  age 
estimated  by  our  facilities  was  60 years  old,  with  24 percent  of facilities  reporting  60 as their 
average  patient  age. 
A-1
 Months  patients  on  dialvsis 
Facilities  reported  their  patients  spent  an average  of 45  months  on dialysis,  with  one  facility 
ranging  from  patients  only  spending  an average  of one  month  on dialysis  compared  to 
126 months  on  dialysis  in another  facility.  The  mode  number  of months  patients  spent  on 
dialysis  was  24  months,  with  a median  of 37 months. 
Patients  disability  level 
Facilities  estimated  that  an average  of 22 percent  of their  patients  have  a disability  that  limits 
their  ability  to  read  or  understand  information.  Two  facilities  reported  none  of their  patients 
had  limiting  disabilities,  while  59  facilities  said  less  than  24 percent  of their  patients  have  a 
disability.  Five  facilities  reported  75 percent  or more  of their  patients  had  disabilities  that 
limit  their  ability  to  read  or understand  information.  However,  21 facilities  reported  between 
25-49 percent  of their  patients  had  reading  or comprehension  disabilities  and  another  15 
facilities  said  50 percent  or  more  of their  patients  had  these  disabilities. 
Educational  level 
Seventy-eight  percent  of facilities  reported  information  about  their  patients  educational  level. 
Facilities  varied  greatly  in the  educational  level  of their  patients  (see table  1).  The  highest 
percent  of patients  (43 percent)  had  high  school  diplomas.  The  average  percent  of patients 
with  less  than  a high  school  education  was  42 percent.  Far  fewer  patients  had  some  college 
(9 percent)  or  college/professional  degrees  (5 percent). 
Table  1:  PATIENT  EDUCATIONAL  LEVELS  IN RESPONDING  FACILITIES 
Average  % of 
Patients  educational  level  patients  Minimum  %  Maximum  %  Median  % 
Less  than  high  school  42%  o%  100%  24% 
(3)  (1) 
High  school  diploma  43%  o%  100%  40% 
(3)  (2)  (6) 
Some  college  9%  60%  5% 
(;:  (1)  (12) 
College  or professional  degree  5%  o%  40%  4% 
(21)  (1)  (2) 
A-2
 Racial  Composition  of Patients 
One  hundred  and  five  facilities  reported  the  racial  composition  of their  patients.  White 
patients  represented  the  largest  racial  group  (45 percent).  Black  patients  represented  40 
percent  of patients  in responding  facilities  (see table  2). 
Table  2:  PATIENT  RACIAL  COMPOSITION  IN RESPONDING  FACILITIES 
Average  % of 
Patients  racial  composition  patients  Minimum  %  Maximum  %  Median  % 
Wl_ite  45%  o%  100%  40% 
(lo)  (4)  (11) 
Black  40%  o%  100%  40% 
(11)  (2)  (6) 
Hispanic  7%  o%  100%  o% 
(57)  (1)  (57) 
Asian  3%  o%  57%  o% 
(72)  (1)  (72) 
Other  3%  o%  69%  o% 
(83)  (1)  (83) 
FACILITY  STAFF  RESPONDENT  PROFILE 
Sixty-seven  percent  of our  facility  surveys  were  completed  by just  a single  respondent,  while 
two  staff  members  completed  16 percent  of our  surveys,  and  three  surveys  were  completed 
by a team  of three.  Our  surveys  were  most  frequently  completed  by  registered  nurses  (47 
percent),  while  facility  administrators  completed  20 percent.  Dietitians  completed  15 percent 
of the  surveys,  with  social  workers  and  director  of nursing  or nurse  managers  completing  13 
percent.  Clinical  coordinators  completed  six percent  of our  surveys. 
Of the  25 facilities  completing  the  survey  in teams  of two  or three  staff  members,  the  most 
common  combination  of staff  was  registered  nurses  and  the  director  of nursing,  or the 
facility  administrator  and  registered  nurses. 
A-3
 APPENDIX  B 
ESTIMATES  AND  CONFIDENCE  INTERVALS 
The  chart  below  summarizes  the  estimated  proportions  and  the  95 confidence  intervals  for 
key  statistics  presented  in this  report  based  on this  simple  random  sample. 
Table  1:  POINT  ESTIMATES  AND  CONFIDENCE  INTERVALS  FOR  KEY  QUESTIONS. 
95% CONFIDENCE 
QUESTION  POINT  ESTIMATE  INTERVAL 
Proportion  of facilities  receiving  the brochure. 
Overall  76%  68.1%  - 83.9% 
Urban  64%  50.3%  - 77.7% 
Suburban  81%  67.2%  - 94.8% 
Rural  93%  83.9%  - 100% 
Proportion  of facilities  handing  brochure  to patients. 
74%  64.7%  - 83.3% 
Proportion  of facilities  distributing  brochure  to every  patient. 
50%  38.5%  -61.5% 
For-profit  facility  ownership  by distribution  of brochure. 
74%  60.1%  - 87.9% 
Hospital  administered  facility  by distribution  of brochure. 
18%  5.8%  - 30.2% 
Proportion  of facilities  providing  an explanation  of brochure  to patients. 
84%  75.6%  - 92.4% 
Proportion  of patients  in facilities  appearing  alert  during  the  staff  explanation. 
59%  46.3%  -71.7% 
Proportion  of facilities  rating  brochure  as excellent  or good. 
72%  61.9%  - 82.1% 
Proportion  of facilities  rating  the brochure  as somewhat  or very  easy  for patients  to understand. 
66%  55.0%  - 77.0% 
B-1
 Table  1:  CONT. 
95% CONFIDENCE 
QUESTION  POINT  ESTIM.4TE  INTERVAL 
Average  percent  of patients  interested  in finding  out about adequate dialysis. 
57%  51.4%  - 62.6% 
Proportion  of facilities  calculating  patients  URR  or KT/V  number(s)  at least monthly. 
77%  59.9%  - 84.8% 
Proportion  of facilities  calculating  URR  or KT/V  number(s)  monthly  by type of distribution  of the	
brochure.	
Type  of distribution:	
All patients  87%  76.3%  - 97.7%	
Some  patients  62%  44.3%  - 79.7%	
No patients  64%  35.6%  - 92.4%	
Proportion  of facilities  giving  adequacy  information  to patients  100 percent  of the time.

53%  43.4%  - 62.0% 
Proportion  of patients  in facilities  tracking  their  adequacy  numbers  monthly. 
29%  24.4%  - 34.4% 
Proportion  of facilities  giving  patients  their  potassium  test  results  regularly. 
97%  93.8%  - 100% 
B-2
 TESTS  FOR  SIGNIFICANCE 
Differences  between  the  way  facilities  responded  to the  survey;  whether  they  thought  the 
brochure  was  excellent  or  not,  whether  they  thought  it was  very  easy  to understand  or  not, 
and  whether  they  calculated  patients  URR  or KT/V  numbers  at least  on a monthly  basis  or 
not,  were  tested  for  significance  for  several  questions.  The  table  below  shows  the  difference 
between  groups  and  the  resulting  value  when  a t-test  was performed. 
Table  2: TESTS  FOR  SIGNIFICANCE  FOR  KEY  QUESTIONS. 
I  I 
RATED  BROCHURE  AS EXCELLENT 
QUESTION 
YEs  NO  T VALUE 
r 
Average  % of patients  in facilities 
interested  in adequate  dialysis  75.1%  52.3%  2.89-
Average  % of patients  in facilties 
tracking  their  URR  or KT/V  40.1%  27.1%  1.42 
numbers  monthly 
Average  months  patients  on 
dialysis  per  facility  55 months  41 months  2.05= 
RATED  BROCHURE  AS VERY  EASY 
QUESTION  TO  UNDERSTAND  T VALUE 
YEs  NO 
Average  months  patients  on 
dialysis  per  facility  55 months  41 months  1.90-
URR  OR  KT/V  # CALCULATED  AT 
QUESTION  LEAST  MONTHLY  T VALUE 
YEs  NO 
Average  months  patients  on 
dialysis  per  facility  48 months  34 months  3.13-
  Indicates  significance  at the 90%  confidence  level. 
- Indicates  significance  at the  95%  confidence  level. 
- Indicates  significance  at the 99%  confidence  level. 
B-3
 APPENDIX  C 
TEXT  OF AGENCY  COMMENTS 
c-1  .. .. -et,.
..  d,4  .p---
..   DEPARTiMENT  OF HEALTH  & HUMAN  SERVICES  Health  Care  Finaw!na  Administra$in 
: 
 5-
-*,,,,mTd  The  Admln!strator 
Washlfigtfw.  O C.  Poml 
DATE: 
To 
FROM 
Administrator 
SUEU-ECTO:f iw  of hpccux  @ncd  (OIG) ~  Rqort%: ~OW  Your  Nutnhr
Brochure - Pempcctiws  of Dia.I@s Paricnts (OEI-06-9S40320)  and 
IGmw  Your  Numb&  Brochure - E~cncu  of Dinlysis Faciiiri~ 
(oEL06-95-tM321) 
We reviewed  the almw-r&rcnced  reports which examine the cfl%tj~m~  of the Hea?th 
Care Fmcing  Administrations  End Sragv H  D&ax  wqzax-n 
. 
. 
Our detiki  cwnmenti  on&  report rt#uuneadations  arc attached fur yOur 
cousid-cration.  Thank you for tix  oppxtuni~  to review andmmmentm thee rupm. 
Anachmcnt  Commenfi  of the Health  cue  FiIIanchz  Adrninistiation  U-ICFA) on

Offlcc  of Inspector  Gened  (OIG) Draft  Reports:

how  Yow  Number  Brochure  - Perspectives  of

Dialysis  Patients,  (OEI-06-95-00320)  and Know  Your Number Brochure  

~xueriences  of Dialysis  Facilities.  (OEI-06-95-0032  1]

fiow  YOW Number  Brochure  - Perspectives  of Dialvsis  Patients.  (OEI-06-95-0032U,) 
OIG Recommendation  1 
HCFA  should  ensure  fiture  patient  brochures  are received  by all Medicare  dialysis 
patients. 
HCFA  Resuonse 
We  concur.  Direct  mailing  of brochures  to patients  was  considered  for our  initial 
brochure  distribution.  However,  the American  Association  of Kidney  Patients 
recommended  that  the brochure  be distributed  through  facilities  where  questions  can be 
asked  and  explanations  provided.  Impossible,  future  distributions  will be a combination 
of direct  mailing  to patients  and bulk mailing  to facilities. 
OIG Recommendation  2 
HCFA  should  build  on the patienth.ff  relationship  in order  to improve  patient 
understanding  of urea reduction  ratios  md  tie  ufea kinetic  modeI and the importanc~  of 
achieving  adequate  dialysis. 
~CFA  Response 
We concur.  The  patientistaff  relahonship  is critical  to t-he improvement  of a patients 
understanding  of end-stage  rend  disease  (ES~).  Most  patients  rely  on their  c~e  givers 
for necessary  information  and encouragement  in order to be active  participants  in the 
health  care  decisions  that involve  them.  Facility  guidelines  that provide  the staff  with 
additional  background  materials  and suggeshons  on successful  ways  to use the brochure 
in patient  education  would  support  paticntistfiff  dialogue  as well as patient  empow-erment. 
However,  it will  not  guarantee  that the brochure  will be distributed  or that  dialogue  tvill 
occur.  Page  2 
< Know  Your  Number  Brochure  - Exucriences  of Dialvsis  Facilities,  (OEI-06-95-0032  1.)
.. 
OIG  Recommendation  1 (Dissemination) 
HCFA  should ensure that all facilities receive an ample supply of brochures  and 
encourage  them to distribute a brochure to every patient.  HCFA might also consider 
providing  guidelines to facdities  on effective dissemination approaches. 
HCFA  Responsq

We  concur,  The initial  distribution  was  intended  to provide  all ESRD  dialysis  facilities

with  enough  brochures  for  100-percent  patient  distribution  plus  extra  brochures  for

anticipated  new patients.  The mailing  labels  and distribution  amounts  were  provided  long

before  the brochures  were  actually  mailed.  Consequently,  some  new  facilities  were  not

on the list,  To the extent  possible,  future  mailings  will be done  from  the most  ~urrent

roster  of facilities.  Additional  brochures  will  be sent to the Networks  with  a request  that

they  send  an ample  supply  to all facilities  added  to their Network  rolls  afier  the mailing

list was  created,

HCFA  worked  closely  with  the renal  community  (Renal  Physicians  Association,

American  Association  of Kidney  Patients,  National  Kidney  Fotmdatio~  American

Nephrology  Nurses  Association  National  Renal  Administrators  Association,  ESi7 ~

Network  Forum  and National  Association  of Nephrology  Technicians)  in the

development  and distribution  of the brochure,  as well m alerting  the renal  communi~- to

the brochure  distribution.  The national  associations  were most  helpfid  in promoting  the

brochure  at theti  national  meetings  and in their  newsletters,  as well  as distributing

brochures  to their  membership.  The initial  bulk mailing  to facilities  was  accompanied  by

a letter  of introduction  that  described  the brochure  development  and encouraged  facilities

to use the brochures  for patient  education.  We realize  that continued  and addition~l

facility  support  are needed  and that  facilities  which  need the most  support  with  the

utilization  of the brochure  do not belong  to or attend the. various  national  meetings

provided  by the renal  commwtity.  We will  consider  developing  facili~  guidelines

describing  brochure  disbibution  to patients  and staff for patient  education  The

guidelines,  if developed,  will  be included  in future  brochure bulk mailings to dialysis

facilities.
  
Page 3 
OIG Recommendation203  roclmre  Content  and Format) 
HCFA should simpli~  the language and concepts as muchas possible  in any subsequent 
or.revised patient brochures.  Consideration  might be given  to developing  alternate 
versions  of the brochure  for different  reading  levels  and to add greater  use of color mi 
graphics to gain interest  and promote patient understanding 
J-iCFAResuonse 
We concur.  We appreciate  the concern expressed regarding the language and concept ~

presented  in the brochure  The National Renal Physicians Association  has a professional

level brochure.  There is also a high school level brochure on the topic.  It is important  for

statipatient  dialogue to occur if a patient has difficulty understanding  this brochure  and

needs the concepts  explained  fi.u-ther. Consideration  can also be given to developing

alternate versions  of the brochure for different reading levels if needed  and resources

permit.  Development  of numerous versions of the brochure does not guarantee  that all

patients  WM get a copy, that the facility will educate their patients,  or that all patients  will

be interested  in learning about ESRD.  Careful distribution plans would need to be

developed  to enable a variety of versions of the brochure to be effectively  distributed  so

that the brochure  supply and the need would coincide.

In considering  reaching rend  patients  Witi  information about adequacy  of dialysis.  the

need for a Spanish version of the brochme  became apparent,  We have, therefore,  had the

bl-ochure translated  into Spanish and distributed to facilities with Spanish-speaking

patients.  Since all facilities  were supposed to receive copies of the English version  of the

brochure  with the introduction  letter, we included information  about the availability  of

the Spanish  translation  in the letter.  As a result,  we have had  a number  of requests  for t}w

Spanish version from facilities  who were not on the original Spanish brochure

distribution  list

We originally  designed  the brochure  to have  Iarger print  and brighter,  more  varied  colors.

However,  the Government  Printing Office ordy allows a two-color process for printing

brochures,  and budgetary  considerations  reduced the size of the brochure.  Future

printings  of the brochure will be more sensitive  to the visually-impaired  and more

visually stimulating  if at all possible.
 Page 4 
91G NQQXIYInKdEation  3 (Continuirw  Pahent Education)
HCFA should encourage  continuing cfforts by facilities to educate  patients  and rcinfbrce 
the importance  of patient  understanding  and monitoring of the adequacy  of their dialysis. 
A training  video to in~oduce  ardor  reinforce the brochure concepts  might also prove 
effective,  based on the suggestions and experiences of some facilities. 
We concur.  If tiding  permits, a training video to educate patients  and reinforce  the 
brochure  concepts  would probably be very helpfid and well received.  Having the 
brochure  information  on video would allow the visually-impaired  to either better  see the 
concepts  or at least hear the concepts.  SupportirIg patientistaff  dialogue wotild still be 
needed, 
In additioz  since facifi~  staff, in conjunction with the patient  are required  to 
periodically  review  and update the patients care p}a~ perhaps  staff can be encouraged  to 
take this opportunity  to explain tic  information to patients and answer questions  or 
address any concerns  about the information in the brochure, 
OIG R ecomm endation  4 (U e of AdequacvMea sures) 
HCFA shouId encourage  facilities to calculate dialysis adequacy  measures  on a monthly 
bask  and share these numbers with patients on a regular basis in order for the brochure  to 
achieve its intended  impact on patients and facilities. 
HC/FA Re S?ons e 
We, concur,  At this time there is no requirement for facilities to measure  the adequacy  of 
dialysis  at prescribed  intemls,  Although the re}ised ESRD  Conditions  for Coverage, 
scheduled  for release  in early 1997, will require dialysis facilities  to calculate  the 
adequacy  of dialysis  quarterly,  we encourage more frequent calculations  as part of the 
facilities  coWi.nuous quality improvement program. 
The Facilities  of Achievement  Miative  will dernonstiate, in volunteer  ESRD  dialysis 
facilities  with existing  computer capacity, the possibility of collecting  medical  indicators 
on 100 percent  patient  sample, then collating and analyzing the data and returning  it to 
the prulicipating  facility  for use in developing quality improvement  interventions.  The 
clinical  indicators  of the care received will be submitted to HCFA on a quarterly basis.  Page  5 
Technical  Comments 
The report should assess whether some of comprehension issues of the beneficiaries 
might be attributed to a lack of cultural sensitivity in the presentation.  Not only is there 
the relatively  large number of Hispanics in the ESRI) progr~  but also American  Indims 
and Mican-Amcricarts  are represented  in the population disproportionately, 
We also note that the report failed to mention that there was a Spanish edition  of this 
publication.  TM  is particukidy  important considering the huge Hispanic  community 
affected by ESRD.