Will postgraduate training of established
medical  and paramedical personnel
reach those physicians, scientists, and
others who have the earliest opportunity
to apply preventive measures against
disability?

of arthritic patients for whom medical
could determine, accurately, the numbers

or paramedical care (or both) is needed
to prevent disability?
Where are such patients in relation to
the availability of the skills they are
thought to need?

Hopefully, such attention might also con-
tribute toward solution of those other
aspects of the prevention of disability that
are being considered in the other Work-
shops in this conference.

Will the experience of postgraduate edu-
cation in related public health endeavors
indicate whether postgraduate education
can hasten the solution of public health
problems that are presented by disa-
bility from arthritis?

Other related questions arise, such as:

When does the arthritic patient need the
attention of the specialist-medical or
paramedical-for the prevention of dis-
ability?

Is the current use of local hospital and
other medical facilities, university medi-
cal or other research centers, and public
health offices the best approach to the
prevention of disability from arthritis?
Can restorative measures or ordinary
domiciliary care be used to better ad-
vantage, or modified readily, for preven.
tion of disability?

26

Would it be pertinent to know whether
comprehensive public health surveys

How might patients be motivated to use
available preventive measures?
What is the significance of the socio-
economic aspect of disability from ar-
thritis on the patient, family, and com-
munity?
Certain of these and related questions
are more particularly the province of other
Workshops in this conference,  namely,
those that are concerned with public edu-
cation and information, diagnostic and
therapeutic facilities, long-term manage-
ment, clinical investigation and the train-
ing for it. voluntary and public agency
activities, and socioeconomic factors. Like-
wise, the questions that are pertinent to
postgraduate education may not all be
separable from their specific approaches.
However, in so far as it is practical to do
so, our attention will be directed, particu-
larly, to solution of the problems of pro-
fessional education,  as it is related to
prevention of disability from arthritis.

Workshop 5

Clinical Investigation and
    Training

John L. Decker, M.D., Chairman

"Clinical investigation" is, in the current
language of the medical scientist, com-
monly interpreted as encompassing a wide
field, from electron microscopy to the in-
dications for synovectomy, from the struc-
ture of peptides to population studies, and


from the problems of membrane potentials
to the psychologic impact of chronic in-
validism. While recognizing and rejoicing
in the breadth of this definition and in the
fundamental role of the more basic ap-
proaches to generating new avenues of
thought and investigation, the clinician,
and with him, our society, is confronted,
now, today, with the unfilled needs of the
rheumatic disease patient. A part of the
title of this conference, "prevention of dis-
ability," makes the point clearly. The way
to prevent disability is to prevent or cure
the disease. Despite some hopeful flicker-
ings on the horizon, flickerings that need
continued nourishment and hard work,
these routes are not now open. Another
way must be sought.

It is this effort-to address ourselves
directly to the individual patient, to under-
stand the framework in which his disease
develops, to diagnose and classify his ill-
ness, to predict its outcome accurately and
to manage it in such a way as to prevent
disability-which constitutes "clinical in-
vestigation" in a more restricted form and
is our subject, here.

There is no clear dividing line between
"basic" and "clinical" investigation; and
it is unwise to seek or to draw one, for

each flourishes best when enlightened by
the other. The emphasis on the patient and
on his problem that is expressed here is not
meant to denigrate more fundamental
studies, nor to imply that there is only one
way to do things.  Obviously, there are
many avenues; but it is our present pur-
pose to explore the possibilities and pitfalls
of one, only.

Within the health professions, "arthri-
tis" means inflammation of the joint. Thus.
this conference has great breadth, in terms
of specific diseases. In selecting a specific
area or disease for work, many considera-
tions, some appropriate and others dis-
tinctly inappropriate, assail this conference
(and the investigator). The choice might
be based upon quantity. Which disease is
most common? Degenerative joint dis-
ease? Which disease causes the greatest
economic loss and misery? Rheumatoid
arthritis? The choice might be based on
scientific considerations-that is, where the
leads look best. Which disease seems more
likely to be due to infection? Reiter's
syndrome? Which disease permits study
of the synovia before, during, and after
induced inflammation? Gouty arthritis?
The choice could be based upon its current
"popularity rating"; no granting commit-

tee can entirely divest itself of medical
fashion. In which disease do genetic fac-
tors seem most pertinent?  Ankylosing
spondylitis? Which disease is the proto-
type of "autoimmunity?" Systemic lupus
erythematosus? Or perhaps the considera-
tions should be more practical. What dis-
ease will be troubling the largest propor-
tion of the next one hundred patients to be
seen? Fibrositis?

In practical fact, all of these considera-
tions, and more besides, enter into the
choice. For our purposes, it is sufficient to
recognize that choice is difficult and that
it is foolish to restrict or to delimit, unduly,
the area of concern. The diseases that
cause crippling overlap in a myriad of
fascinating ways, and the study of the
exotic is no less (nor no more) to be pre-
ferred than the study of the common.

The prototype disease, and the major
public health problem, is rheumatoid ar-
thritis. While most of our thinking will be
concerned with rheumatoid arthritis, les-
sons that are learned in other diseases will
apply to rheumatoid arthritis; and, con.
versely, many of the conclusions that are
reached will have validity beyond rheuma-
toid arthritis, alone.

This essay will cite a few approaches to

27


knowledge that can be applied to prevent-
ing disability from rheumatoid arthritis.
It will discuss the difficulties which tend to
hinder these investigations. And it will
suggest means of eliminating some of these
obstacles. The nature of the professional
training that qualifies individuals for such
work will be considered.

28

1.  Problems for Clinical Investigation
The number of unanswered questions
that are concerned with rheumatoid arthri-
tis is unlimited. Much of the operating
knowledge that is now in general use has
not been "established," in the rigorous
scientific sense of the word. Consequently,
almost all of the thought and action pat.
terns of today's clinician might be consid-
ered to be in need of reevaluation.
In practical fact, the last 20 or 30 years
have provided a reasonable baseline of
knowledge, both in the literature and in
the abilities of physicians and others who
have been privileged to observe the disease
in large numbers of patients. A good ex-
ample of this baseline knowledge exists
in the criteria for the diagnosis of rheuma-
toid arthritis, which was first suggested in
1957 by a committee of the Rheumatism
Section of the Arthritis Foundation. These

criteria continue to serve a most useful

purpose; and they deserve the constant
reappraisal that was suggested by the
original committee and, recently, begun.
Thus, there is need for clinical investiga-
tion of the foregone conclusions of the
past, as well as of the new tools, ideas, and
modalities of today.

Early identification of the disease con-
tinues to be a problem; but it should now
be extended to efforts to identify suscep-
tible individuals before overt onset of dis-
ease. What is the meaning of serum rheu-
matoid factor in healthy individuals?
Studies of rheumatoid arthritis in popula-
tions, both at one point in time or with
continuing reappraisal of a population
sample, have proven to be useful, in terms
of defining the magnitude of the problem
and of permitting the drawing of conclu-
sions as to its nature. For example, the
low order of familial aggregation that is
found in surveys of special populations
raises important questions about the dis-
ease, which appears in certain families at
a rate far beyond that expected.

The natural history of the disease de-
serves constant study, as do its relation-
ships to other illnesses, such as chronic
ulcerative colitis or psoriasis. The recently

changing views of the distinctions between
rheumatoid arthritis and ankylosing spon-
dylitis provide evidence that this type of
nosological effort is still valid today. In-
deed, there are cogent reasons to believe
that  "rheumatoid arthritis" is not one
disease, but several. For example, are the
monarticular, large joint disease of ado-
lescence, the destructive, nodular disease of
the metacarpophalangeal joints in young
adults,  and the chronic  inflammatory
synovitis of shoulder and knee of did age
the same disease of the same cause?

More information is needed about such
freely used terms as "active," "inactive,"
"suppressed, " `Lburned-out," and "in re-
mission." They have received careful at-
tention in recent years, but one cannot
escape the fact that the local destruction
of a wrist, for example, seems, on occasion,
to progress inexorably, while the systemic
disease is regarded as inactive. Can dis-
tinctions be drawn  and quantitation
achieved between "local" and "systemic"
activity? Would it be worthwhile to de-
velop prognostic indices for individual
joints?

The fundamental need to distinguish pat-
terns, classes, and types of disease rests
not in a desire to create more eponymic


syndromes, but, for our purposes, to
achieve a more definitive prognosis. This
is a prerequisite to properly planned thera-
peutic investigation, as well as to an en-
lightened treatment program for any one
individual. This, too, has been done in the
past, both retrospectively and prospec-
tively. But new data handling methods,
coupled with precise, prospective definition
of the variables, should produce new in-
sights.

The events that surround remissions and
exacerbations of the disease deserve study.
Such changes are regarded as spontaneous,
but it seems likely that there are unrecog-
nized contributing events, be they psycho-
social, infectious, traumatic, or environ-
mental.

The entire area of treatment, or man-
agement, lies open to clinical investigation.
Only in recent years have properly con-
trolled studies of corticosteroids, gold, and
antimalarial therapy become available.
Some attention has also been directed to
non-medicinal approaches, such as long-
term hospitalization, or immobilization, in
reducing joint inflammation.

Among physical measures that are often
recommended, few have been validated by
exacting studies. Such matters as bed rest,

range of motion and muscle-building exer-
cises, the role of heat in its various forms,


There has been much recent interest in
and preventive exercises deserve analysis.

local therapeutic measures. Both (intra-
articular)  injections and surgical ap-
proaches have been advised. No controlled
studies are available. Early synovectomy
-that is, before cartilage damage-can-
not readily be advised nor accepted by the
patient, unless it is established that it is
not, in itself, a damaging procedure and
that joint disintegration can be prevented.
Reparative surgery has been in use longer,
and its benefits are more evident, al-
though, even here, it is essential to define
results in terms of useful function, rather
than in terms of pleasing cosmetics. De-
spite the many variables that are involved,
appropriately designed studies, evaluated
over an adequate period, should provide
the needed definitive evidence on which to
construct therapeutic plans.

Il. Inhibitors of Clinical Investigation
The present paucity of studies of the
type that have been described is readily
accounted for: they are difficult to per-
form. In considering or conducting such
studies, the investigator often finds himself

stopped by an insuperable problem or by
a combination of problems. It is appro-

The nature of the disease, itself, is obvi-
ously the key factor. It is chronic, very
priate to examine some of them.


different from patient to patient, given to
abrupt, seemingly inexplicable changes in
activity, and thoroughly intermingled with
the emotional and physical nature of its
human victims. There are no comparable
animal models. These facts force the con-
clusion that appropriate studies require
large numbers of patients and extended
periods of study, measured in years and
decades, rather than in weeks or months.

The investigator, then, must have qual-
ities that are far from universal, such as
infinite patience; the ability to design ap-
propriate studies that are based on an
exhaustive knowledge of the disease; a
foresighted perception of what questions or
problems will be of significance when his
work comes into its final phases; the abil-
ity to inspire and to stimulate his asso-
ciates;  and the sustained and commu-
nicable concern for his patients that is the
mark of the good physician. One of the
inhibitors of clinical investigation in the
rheumatic diseases is immediately clear:
such paragons of virtue are rare, if not

29


30

altogether unknown!

A stable and reliable patient population
of sufficient size is not always available.
In many areas, this factor may hinge upon
adequate transportation facilities.  Many
studies require a degree of patient under-
standing and cooperation that can rarely
be attained in the average clinic popula-
tion.

Patients who are able to pay a fee for
services should be included; presumably,
no charges would be made while they are
"in" a study. There are major ethical
factors that inhibit (perhaps properly)
some work. Is it ever appropriate to per-
form sham surgery or to give a lactose
placebo over years?

Inadequate  cooperation between the
various  medical specialties is  another
potent inhibitor. Occasionally, this is based
on long tradition or petty jealousies; more
often, it is rooted in a failure to take the
time to understand the ideas, methods, and
motives of another discipline.

The expense of prolonged hospitaliza-
tion, crucial to some work, has been an
inhibitory factor where "free beds" are not
available to the investigator.  The high
cost of this type of hospitalization within
the institutions in which clinical research

is being done has made this form of sup-
port difficult to obtain.

An additional important problem is the
pressures that are put on the physician who
does have a few such beds at his corn-
mand. The demands and the need for
chronic hospitalization are so heavy and
so pathetic that it requires a heart of stone
to maintain the integrity of such a unit
for investigational purposes, alone.  The
only reasonable solution is the provision
of a chronic disease facility, with beds at
a lower cost than those in the general hos-
pital, but in close geographic proximity to
the medical center. Such a facility is con-
sonant with the rapidly increasing propor-
tion of chronic to acute problems that is
now being noted in medical practice, with
the increasing mean age of the "average
American," and with the overwhelming
need for better training in chronic disease
for all of the health professions.

   To return to the inhibitors of clinical
investigation, freedom. when it is denied
the clinical investigator, is an inhibitor
that deserves more deliberate mention.
Creative work requires time, imagination,
effort. and an environment that encourages
opportunistic ventures into the unknown.

The investigator cati readily find himself

nailed to the rack of a protocol that was
written years before, unable to exercise his
originality and imagination. Worse than
this, he can be so burdened by the multi-
tude of administrative responsibilities that
are sure to result from the problems that
have already been cited that he lacks the
spirit or mental energy to pursue even his
protocol. much less anything new, His free-
dom must be preserved.

In the last analysis, monumental effort
on the part of the investigator can over-
come most of these problems. Then, the
urgency and the pertinence of the hypothe-
sis that is to be studied become of over-
riding importance. It is obvious that an
hypothesis that involves basic attributes of
the disease process is more compelling than
an hypothesis that will require hundreds of
man hours and scores of patients to deter-
mine whether Pill X or Procedure Y has
an effect that is beyond that to be expected
from chauce. alone.

111. Encouragement of Clinical
investigation

Our discussions will center on possible
means of encouraging clinical investiga-
tion. A major srgtnent of the problem,
which might be entitled "The Care and
Feeding of the Clinical Investigator," is


considered next (IV). Other factors that
apply include :
a. Where should this type of investiga-
  tional activity be done? Within a
  medical school? Within a research
   institute?  Within the practice of
  medicine, either by individuals or in
  groups?  What financial arrange-
  ments are appropriate for hospital-
  ization for clinical investigation?
b. Cooperative studies. Should all or
  any portion of this work be car-
   ried out with central direction to a
  number of operating units? How
  should these ventures be organized
  and by whom?

c. The enthusiastic support of the local
community, both lay and medical,
can make a great difference. How
can this be assured?

d. The services that are required in any
particular study-laboratory, physi-
cal medicine, transportation, follow
up, etc.-will differ; but they must
be available. Almost all will require
consultative  assistance in  experi-
mental design and statistical analy-
sis. How can such facilities be made
  available?

IV. Training for Clinical

In the last analysis, the ideas that will
investigation

build tomorrow must come from the mind
of a man today. The research team, as a
group, contributes to the environment of
each individual on it; but an individual
concerns us here. Any improvement or in-
crease in clinical investigation has a single
sine qua non-the investigator himself. As
suggested above, he must be a man of
many parts.

It is desirable that the creative individ-
ual be identified as early as possible and
be introduced to the field in such a way
that he will wish to enter it. Important
consequences of this view are that training
units for rheumatic disease should be
widely dispersed in our educational sys-
tem; that they should be in a position
to recruit men to the field; and that the
process of early identification is to be ex-
pected to bring many more into training
than will actually perform adequately as
independent clinical investigators.

The training will have to be flexible.
The only requirement should be that the
trainee must attack and master one area,
no matter how limited, in depth. It seems
unwise that all trainees be versed in a pre-

clinical discipline, although this would be
the course for many. It is assumed that
the trainee will be involved in clinical in-
vestigation and that the majority of his
training will come in the one-to-one rela-
tionship with the preceptor, who is jointly
involved in his problem.

All training units cannot (and should
not) have competence in all disciplines.
The trainee should be directed to the best
possible position for the accomplishment
of his purpose, be it a basic science unit,
another rheumatic disease training unit, or
a specialized institute or program.

Starting independent work represents
the point of greatest attrition, perhaps
rightly so. Appropriate support mecha-
nisms should be available to permit the
truly competent man to pursue his problem
in a status beyond that of trainee. During
this period, which might extend to three
or four years, he should be free of heavy
administrative or teaching responsibilities.
He should complete the period ready to
assume a permanent role as a clinical in-
vestigator.

He should be assisted and guided in
finding a post that will permit the full
utilization of his talents. As of today, this
post is usually conceived of as an academic

31


32

appointment within a medical school. As
more emphasis is placed on the investiga-
tional aspects of patient care, however, it
seems likely that suitable posts will open
up in hospitals, private clinics, and founda-
tions; with proper direction and relation-
ships, a suitable environment can readily
be developed in such circumstances.
The mode of support for the clinical in-
vestigator is crucial. The rapidly recurring
need to demonstrate "progress" to the
granting agencies, both private and gov-
ernmental, has tended to direct efforts to-
ward limited and short-term goals. dn
the other hand, the difficulties of a carte
blanche program of, for example, 15 years
duration are obvious. Some intermediate
mode may be necessary for people who
work in the field of treatment of the rheu-
matic diseases.

Some of the unsolved, and perhaps un-
solvable, problems of training investigators
for work in rheumatic diseases include the
following :
a. Is all of medical school necessary to
produce a specialized clinical investi-
gator? There are reasons to believe
that advancing age and the brainwash-
ing of the average medical school cur-
riculum smother originality. Should

there be "short cut" routes to clinical
investigation?  Might some subject
areas be dropped and others fortified?
b. Should training of clinical investigators
be the responsibility of a few (less
than ten) strong and especially organ-
ized training units?

c. How can the trainee be encouraged to
keep his breadth of vision wide while
he is concentrating on a limited prob-
lem and using circumscribed modal-
ities? Should he be exposed to a sur-
vey period during which he would
study a wide range of techniques and
  their limitations?

d. Would a regular pattern of rotation of
trainees among several training units
serve a useful purpose?

e. Is a critical investigator born, or can
the talent be developed? The ability
to design clinical studies, to select prop-
erly matched controls, to analyze the
many variables that are involved, and
to appreciate what has and what has
not been shown to be fact, seems to be
  rare. Are these talents "teachable?"
If the answer is affirmative, should the
teaching be by precept only, or can
formal courses or programmed instruc-
tion be a major benefit?

Workshop 6

Voluntary and Public
Agency Activities and
   Programs

William D. Robinson, M.D., Chairman

In spite of the growing recognition of
the importance of the effect of rheumatic
diseases on the health and economy of the
community, there is little precise informa-
tion available on the prevalence of these
diseases in the general population. Accord-
ing to the United States National Health
Survey of 1961-1963, rheumatic diseases
caused a loss of 12 million man-days each
year, with 13 million people in this coun-
try estimated to be affected. An estimate
of the degree of crippling that was at-
tributed to these diseases was also pro-
vided by this survey: 157,000 individuals
were confined to their homes because of
rheumatic diseases.

Another index of incapacitation is pro-
vided by the roles of applicants for dis-
ability benefits  under Social Security.


During the period of this three-year survey,
30,000 arthritic applicants a year were
unable to work for six months and were
eligible for Social Security disability bene-
fits. The reason for this is clearly related
to the age and sex distribution of indi-
viduals who are eligible under this pro-
gram, since it does not include individuals
where the impact of certain types of crip-
pling arthritis are most heavily felt. Only
18 percent of the individuals in this pro-
gram were under the age of 50 years, and
only 20 percent were women. Of the ap-
plicants for Social Security disability bene-
fits, 56 percent had osteoarthritis and 27
percent had rheumatoid arthritis (1). A
National Health Education Committee, in
Washington, D. C., estimated that each
year 320,000 persons in the United States
are rendered totally unemployable by rbeu-
matic diseases. While more accurate data
is certainly desirable, there is no question
that this Workshop is dealing with a prob-
lem of considerable magnitude.

There are at least forty different forms
of arthritis and related diseases that can
lead to temporary or protracted disability,
or to permanent crippling. Of these, the
one that bulks largest, in terms of human
suffering, that is characterized by a pro-

tracted or recurrent course, and that pos-
sesses the greatest capacity for producing
irreversible crippling is rheumatoid ar-
thritis. While osteoarthritis is, statistically,
a more common disease (indeed, tech-
nically almost every individual who is over
the age of 40 can be regarded as having
some degree of osteoarthritis) this condi-
tion is very gradual in its onset and pro-
gression. It permits adaptation of the pa-
tient's level of activity over a long period
of time and rarely causes a severe degree
of difficulty.  In contrast, rheumatoid ar-
thritis strikes unpredictably. It affects a
younger age group at the time of maximum
responsibility,  in family relationships,
striking the wage earner in his most pro-
ductive years and the housewife at times of
maximum family responsibilities.

Specific infections of the joint and gout
can also cause crippling, but in these situ-
ations effective medical management is well
defined and the primary problems are ac-
curate diagnosis and patient cooperation.
A variety of forms of nonarticular rheu-
matism may cause temporary disability of
considerable magnitude, but these condi-
tions, in a great majority of cases, are
limited to a few weeks or months in dura-
tion; and, with proper management, they

should not result in irreversible crippling.
Therefore, in this Workshop, rheumatoid
arthritis may be regarded as the prototype
of the crippling diseases, not only because
it is the least well understood and the most
difficult to manage, from the medical point
of view, but also because of its important
impact on the individual, on his family,
and on his ability to function in society.

Also pertinent to the purpose of this
Workshop is the fact that any sound pro-
gram that is developed to meet the problem
of disability from rheumatoid arthritis will
automatically include the measures that
can be brought to bear on other forms of
disability from rheumatic diseases. Indeed,
it would be virtually impossible to develop
an adequate program for rheumatoid ar-
thritis that would not accomplish this
purpose.

Basic Consideratione

In the prevention of disability from
rheumatoid arthritis, there is one fact that
has been repeatedly demonstrated and
agreed upon by virtually al1 workers in the
field-the importance of early hospitaliza-
tion and subsequent medical and social
support. A powerful argument can be made
in favor of hospital treatment early in the
course of rheumatoid arthritis and for the

33


provision of adequate medical and social
supervision, on a long-term basis, follow-
ing discharge from the hospital. It is clear
that these measures are important in the
maintenance of the functional ability of
patients with rheumatoid arthritis and,
therefore, in the prevention of disability
and crippling from this disease.
The importance of early hospitalization
was clearly outlined by Short and Bauer
and their associates (2)) and it has been
repeatedly confirmed in additional studies.
All of these studies indicate, clearly, that
the course of the disease is better in those
patients who are admitted to the hospital
within one year of onset of their disease.
Because of the importance of this thesis
to the subject of this Workshop, it is
worthwile to look at, in some detail, at least
one of these studies.

The most recently reported study (3, 4,
5) consisted of an original group of 307
admissions to the Rheumatism Unit of the
Northern General Hospital in Edinburgh,
Scotland, between June 1948 and July
1951. Admission to the hospital had been
decided upon because of active disease, the
presence of deformities, or both. The mean
duration of stay in the hospital was 9.4
weeks. While in the hospital, all the pa-

tients were put under the same basic regi-
men, which was comprised of rest in bed,
the application of plaster splints to affected
joints, aspirin to limits of tolerance, physi-
otherapy, and a graduated return to the
highest attainable functional level. Drugs
other than aspirin were avoided. After
discharge, the patients were seen at regular
intervals and their treatment was modified
as the need arose. Splints were removed
and help was provided in domestic and
employment problems. At this stage, drugs
were given whenever they were indicated.

Careful assessment of disease activity
and functional capacity was made at the
time of admission to the hospital, at the
time of discharge from the hospital, and
at intervals of two, four, six, and nine years
following discharge from the hospital. Of
the 200 survivors who were available for
assessment some nine years after discharge
from hospital, 20.5 percent were without
significant residual disability, 41 percent
were moderately incapacitated, 27 percent
were more severely crippled, and 11.5 per-
cent had become entirely dependent on
others.

Between discharge from the hospital and
the first assessment, some two years later,
the overall pattern reflected maintenance of

nearly all the improvement that had oc-
curred during hospitalization, with an over-
all pattern of some further improvement.
From two years onward, there was a grad-
ual but progressive deterioration in the
functional status of the group, as a whole,
due, in part, at least, to increasing age and
degenerative changes in previously dam-
aged joints. The disease remained moder-
ately active in the majority of patients
throughout the period of observation, but
functional capacity and the capacity for
useful employment was reasonably well
maintained among the survivors.

A study of social and economic factors
indicated a close relationship between
domestic or financial difficulties and the
degree of crippling, as might be expected;
but the relatively small number of unre-
solved problems in the last assessment was
a clear indication of the important part
that is played by medical social workers
in the long-term care of the disabled.
Maintenance or loss of morale was also
intimately related to the degree of dis-
ability.

The group that showed the greatest ini-
tial improvement was comprised of those
whose musculature was likely to be most
efficient-the young, rather than the old,


men, rather than women, and manual,
rather than sedentary workers. This, as
well as other observations, would suggest
that benefit that was derived from treat-
ment was more attributable to the physical
measures that were used in the maintenance
of function than to the effectiveness of
measures that were directed toward reduc-
tion of disease activity.

There are two points that must be kept
in mind in generalizing from studies of
this sort. The conclusions, with respect
to the course and prognosis of rheumatoid
arthritis, are naturally based on cases that
are severe enough to be selected for hos-
pital treatment. They do not necessarily
apply to the milder cases, with little or no
disability, which may never be referred
to a hospital.  Several surveys indicate
that such mild cases, with little or no dis-
ability, make up a considerable portion of
the total number of people with rheuma-
toid arthritis in the whole population.

It must also be borne in mind that the
death rate among such groups of patients
with rheumatoid arthritis is higher than
in the general population, in all ages and
in both sexes, although the causes of death
do not appear to differ from the expected
pattern. Mortality is highest among those

most severely affected by rheumatoid ar-
thritis. The fact must be borne in mind
in reviewing late followup results, since
the removal of the more severely affected
segment of the group may give rise to an
over-optimistic view of the long-range
results.

0 b jectiver

In order to make available to all patients
with rheumatoid arthritis the advantages of
early hospitalization, combined with sub-
sequent careful medical and social super-
vision, effort must be directed toward at
least three objectives:

A. Acceptance by the patient and by the
general medical profession of the fact
that early intensive treatment is both
necessary and of value. This involves
a public education program, as well as
an education program for physicians
and for paramedical workers. It also
underscores the necessity for early and
accurate diagnosis, with the associated
responsibility of insuring that facilities
for early and accurate diagnosis are
  available.

B. Availability and adequacy of facilities
for hospitalization. This clearly in-
volves a significant economic problem.

C.

In addition, it is important that op-
timal facilities be available, in terms
of both trained personnel and physical
resources, to provide the services that
are needed for the arthritic patients.
Required are physicians who are skilled
in the medical, orthopedic, and phys-
ical medicine aspects of rheumatic dis-
eases. Required, also, are the special
skills and experience of physical ther-
apists, social service workers, nursing
personnel, occupational therapists, nu-
tritionists, and dietitians. A soundly
based program must, clearly, be in-
volved with the training of such indi-
viduals, as well as with their appro-
priate utilization.
Availability and adequacy of resources
for the medical and social supervision
that must follow the period of intensive
treatment during hospitalization and,
also, for those patients whose disease
is not severe enough to require hos-
pitalization. This involves the estab-
lishment, distribution, and setting of
proper standards for arthritis clinics,
in order to provide the necessary med-
ical supervision. It also involves the
services of all of the paramedical pro-
fessions who are concerned with the

35


hospitalization facilities that are listed
above. To be successful, this aspect of
the program must also enlist the serv-
ices of many agencies, such as public
health nurses, visiting nurses, voca-
tional and recreational programs, and
rehabilitation efforts, which are not di-
rected primarily at the arthritic pa-
tient. Although the efforts of these
organizations are not restricted to pa-
tients with arthritis, they have much
to offer in terms of both experience
and objectives, which can be beneficial
to the achievement of the ultimate goal
of preventing disability from rheumatic
diseases.

It is the specific assignment of this Work.
shop to review the present activities and
programs of voluntary and public agencies,
with the objective of determining what is
being done at the present time and how
these programs and activities can be made
more effective.

36

Voluntary Agencies that are
Concerned with Arthritis
The Arthritis Foundation. Within the
past year, The Arthritis Foundation has
emerged as the voluntary agency that is
concerned with both the professional and

the lay effort in the field of rheumatic
diseases.  Formerly,  the Arthritis and
Rheumatism Foundation, its national pro-
gram is concerned, primarily, with both
lay and professional education. Through
its regional chapters, it is directly involved
in the support of arthritis. clinics and in
the administration of other facilities that
bear directly on the care of the arthritic
patient. Its organization is closely inter-
twined with that of the American Rheu-
matism Association (now, the Rheumatism
Section of The Arthritis Foundation), as
far as professional guidance and policies
are concerned. Currently, efforts are un-
derway to make the coordination of the
lay and professional medical effort in this
field still more effective. The National
Foundation, which previously had a pro-
gram in arthritis that was directed par-
ticularly toward juvenile rheumatoid ar-
thritis, has concentrated in other areas
since the emergence of The Arthritis Foun.
dation as the strong voluntary organiza-
tion.

The Rheumatism Section 01 The Ar-
thritis Foundation (formerly, American
Rheumatism Association). This is the pro-
fessional organization of physicians who
have a special interest in the field of rheu-

matic diseases. It currently numbers more
than 1,600 members. It provides leader-
ship in professional education and fur-
nishes professional resources and "know-
how" to public education programs of The
Arthritis Foundation.

  Community Hospitals and Medical Cen-
ters. There is an accelerating tendency for
the hospital to become the focal point in
the provision of all aspects of medical care.
This is true with respect to both diagnostic
resources and treatment facilities. In addi-
tion, because the hospital supplies a setting
in which the physician can function most
effectively and efficiently, it is often only
in the hospital that the more refined diag
nostic procedures are available. The hos-
pital is the setting in which the physical
therapist, dietitian, occupational therapist,
and social service worker can function
most effectively; indeed, in all but a few
areas, it is the only place where such indi.
viduals and facilities are available. Through
their internship and residency training
  programs, these hospitals exert an im-

'  portant influence on professional educa-
&on. They are also often the focal point
in the training of the paramedical pro-
fessions, whose services are so important
in the care of the arthritic patient.


Hospitals that are associated or aflili-
ated with medical schools and medical
centers are involved in direct service to
patients to the extent that they function
to meet community needs. They also serve
an important function in the training of
individuals in the medical and paramedical
professions and in the demonstration of
effective organizations and procedures in
meeting the needs of the arthritic patient.
Arthritis clinics have tended to develop
entirely in relationship to hospitals-most
frequently, in relationship to hospitals that
are concerned with teaching and residency
training. The National Foundation pio-
neered in the financial support of arthritis
centers that serve as demonstration units,
and it is projected that continuing efforts
in this area will be supported by The
Arthritis Foundation.

The outpatient department of the hos-
pital plays a particularly important role
in dealing with the problem of arthritis,
since there is need for continuing medical
supervision, as well as for episodes of hos-
pitalization.

Other Voluntary Agencies. Numerous
agencies that are concerned with the prob-
lems of chronic incapacitating disease in-
clude patients with arthritis in their pro-

grams. In many areas, such programs as
visiting nursing programs are coordinated
and, to some extent, supported by the activ-
ities of the chapters of The Arthritis Foun.
dation. In many areas, there is a lack of
effective coordination of these programs
into the effort to improve care of arthritic
patients.

Public Agencies that are
Concerned with Arthritis Programs
The United States Public Health Service
The Bureau of State Services, through
its Division of Chronic Diseases, has a
combined Diabetes and Arthritis Program,
which is responsible for the efforts of the
United States Public Health Service in the
arthritis field at a national level. The activ-
ities of this Program have ranged from
the preparation and dissemination of ma-
terial for public education to the prepara-
tion of recommendations for community
arthritis projects and programs in county
and local health departments. Its public
education activities have been closely CO-
ordinated with those of The Arthritis Foun-
dation. In some areas, it has cooperated
with State health departments and chapters
of The Arthritis Foundation to sponsor
symposia, postgraduate courses, and dem-
onstration programs to provide improved

facilities for the care of the arthritis pa-
tient. The primary charge of this program
is to seek more expeditious application of
the scientific techniques we now know and
of those that are becoming available
through research.

Nationcrl Institutes of Health (National
Instilute oj Arlhrilis ,urul Metaboli4: I&
eases). This research arm of the United
States Public Health Service supports a
large program for research in arthritis and
for the training of research workers in this
field. While programs of this Institute may
not be directed immediately to the care of
the arthritic patient, they indirectly exert
an important influence on professional
education and in the development of facil-
ities for patient care. The centers for re-
search and training in research are located
in the same institutions that are providing
leadership in the development of facilities
for care of the arthritic patient. There is
a fine tradition of cooperation between the
National Institute of Arthritis and Meta-
bolic Diseases and The Arthritis Founda-
tion.

State Health Departments. In most
State health departments, no specific ac-
tivities are directed solely to arthritis.
Most State health departments support a

37


number of projects, throughout the State,
that directly or indirectly influence care for
the arthritic patient. These may include
chronic disease diagnostic clinics, rehabil-
itation centers and services, nursing serv-
ices to the chronically ill, stimulation of
home-care services, with available consul-
tation subsidization, homemaker services,
and nursing home services. Programs that
are concerned with facilities for the care
of crippled children and crippled and af-
flicted adults may include appropriate
patients and arthritis.

38

It is apparent that in several States the
activities of the State health departments
are closely coordinated with those of the
chapters of The Arthritis Foundation. Such
activities may include symposia and dis-
semination of literature for public educa-
tion, the joint sponsoring of symposia for
physician education and, also, for the edu-
cation of nurses, physical therapists, and
social service workers, and the preparation
of a directory of arthritis services that
are available throughout the state. In sev-
eral States, key staff members of the appro-
priate division of the State health depart-
ment are members of the Medical and
Scientific Committee of the State chapter
of The Arthritis Foundation.

Examples of Activities in Which
State Health Departments Have
Provided Leadership or Have
Participated

Pennsylvania: In cooperation with the
Pennsylvania chapters of The Arthritis
Foundation, two State conferences on ar-
thritis have been conducted for medical
and paramedical groups. Seven institutes
on diet and arthritis have been conducted.
Equipment has been made available for
physiotherapy demonstration projects. In-
stitutes on rehabilitation and restorative
services have been conducted. Training
programs in rehabilitation have been con-
ducted for nursing home staffs.

New Jersey: Program activities include
promoting community resources for con-
trol of arthritis, including continuity of
care services, rehabilitation services, and
diagnostic services. The department has
encouraged and facilitated research stud-
ies and provided education in arthritis and
allied disorders. Arthritis symposia have
been sponsored jointly by the State health
department, medical school, and county
hospitals. The State health department has
prepared a directory of arthritis services
that are available in New Jersey, including
agencies,  clinics,  educational materials,

physical medicine, and rehabilitation re-

sources.

Colorado: The State health department
cosponsored a three-day institute on "Man-
agement and Rehabilitation of Patients
with Arthritis" with the Rocky Mountain
Chapter of The Arthritis Foundation, the
University of Colorado Medical School, and
the State department of rehabilitation.
Plans were formulated to provide assistance
to the Rocky Mountain Chapter of the AF
for purchase of equipment for physical
therapy home service programs and craft
rehabilitation projects. Assistance is also
being developed for professional lay edu-
cation through the procurement and util-
ization of educational materials and audio-
visual aids. Other services relate to con-
sultation to nursing home administrators,
including occupational and physical ther-
apy consultants, community homemaker
services in Denver, and extension of pro-
grams for home nursing care of the sick.

Kansas: Courses sponsored in self-help
and rehabilitation for nursing home per-
sonnel include service to arthritics, as
well as to stroke patients. Rehabilitation
courses are conducted for registered nurses.
Also programs for nursing care of the
sick at home are being developed. The


Kansas statewide arthritis education pro-
gram is a cooperative agreement involving
the Kansas Chapter of The Arthritis Foun-
dation, the Kansas State Health Depart-
ment, and the U.S. Public Health Service.
The objectives of this program are to pro-
vide up-to-date information to physicians
and paramedical personnel on techniques,
particularly physical therapy, that are used
for care of arthritics. It also seeks to
organize and mobilize community resources
to improve the care of the arthritic.

Minnesota: A project entitled "Home
Economists in Rehabilitation" has been
sponsored jointly by the State health de-
partment, the Minnesota Heart Association,
the State agricultural extension service,
and the Minnesota Chapter of The Arthritis
Foundation. This is a project to assist
homemakers with physical handicaps to
accept the knowledge that will encourage
them to develop both realistic attitudes to-
ward homemaking and enable them to
accomplish some, or all, of their home-
making tasks. A series of four classes are
held. They cover different aspects of home-
making. This program reached about 160
homemakers in I3 counties in 1963.

County and Community Health Depart-
ments. It is difficult to get significant in-

formation about the activities of county
or community health departments in the
field of arthritis. It is clear that such
health departments are in a position to play
a key role in community arthritis projects.

An example of the way in which rehabil-
itation services to arthritis patients has
been extended by a generalized public
health nursing agency is provided by
Tulsa's arthritis program. The first steps
were to ascertain the number of rheumatic
disease victims in the community who re-
quired home nursing service and to decide
on the type of inservice education that
would best prepare the nursing division of
the City or County health department to
take care of them. On the basis of the in-
formation and prior experience of a spe-
cialized program that had been established
by the local chapter of The Arthritis Foun-
dation, the staff nurses became acquainted
with the patients, familiarized themselves
with the patient's disabilities, and gained
considerable insight into the needs of these
patients, with respect to the medical, nurs-
ing, and physical therapy techniques that
are needed. This was followed by formal
lectures and demonstrations and the par-
ticipation of staff nurses in training pro-
grams that were available elsewhere. It

is of interest that, in one year, about 12
percent of 7,620 visits for nursing care in
the home were made to arthritic patients.
During the same year, 191 new arthritic
patients were admitted to the nursing
service.

There are also a number of both govern.
mentally supported and voluntary organ-
izations that are concerned with the
provision of diagnostic, treatment, and
rehabilitation programs for the chronically
ill patient at the community, regional, and
national levels, with programs and facil-
ities that play an important role in services
that are available to the patient with ar-
thritis. One of the purposes of this con-
ference will he to obtain more information
concerning such programs and to develop
recommendations for more comprehensive
and extended care of the arthritic patient,
through coordinated health activities and
through the integration of health informa-
tion.

Educational Activities of Voluntary
and Public Agencies

Public Education. A sound pattern for
the provision of authoritative information
on arthritis has developed, usually with The
Arthritis Foundation taking leadership in
preparing  appropriate literature, fre-

39


40

quently with the advice or participation
of committees of the Rheumatism Section
of The Arthritis Foundation (formerly,
American Rheumatism Association). Dis-
semination of this information is carried
on, to a considerable extent, through the
chapters of The Arthritis Foundation, the
Division of Chronic Diseases of the United
States Public Health Service, and the State
health departments. Examples are the
booklet entitled, "Strike Back at Arthritis,"
informational booklets about quackery in
the arthritis field, and authoritative in-
formation about fact and fancy and the
relationship of diet to arthritis. The Ar-
thritis Foundation also prepares and dis-
tributes informational pamphlets, directed
toward the education of the patient that
is afflicted with arthritis, that deal with the
various types of rheumatic diseases.
Professional Education. Several organ-
izations are concerned with keeping the
medical profession up-to-date on advances
in the diagnosis and management of ar-
thritic disease. These efforts are usually
well coordinated, and several of them are
undertaken on a cooperative basis. An
example is the "Primer on Rheumatic I%-
eases," which is prepared periodically by
a committee of the Rheumatism Section of

The Arthritis Foundation and published
in the Journal of the American Medical
Association. Through The Arthritis Foun-
dation, copies are distributed to every
medical student in his junior or senior
year in medical schools throughout the
United States and Canada. Information
concerning advances in research are dis.
seminated in the monthly Bulletin of Rheu-
matic Diseases, a joint enterprise of the
National Institute of Arthritis and Meta-
bolic Diseases and The 4rthritis Founda-
tion, which is distributed to approximately
60,000 practicing physicians in the United
States, primarily through the chapters of
the Arthritis Foundation.  A periodic
Rheu,matism Review, prepared by a com-
mittee of the Rheumatism Section of The
Arthritis Foundation, is widely distributed
with the financial support of The Arthritis
Foundation.  Symposia and postgraduate
courses that deal with the diagnosis and
management of the arthritic are frequently
cosponsored or organized by the Rheu-
matism Section of The Arthritis Founda-
tion, or its regional affiliated societies, and
The Arthritis Foundation and its chapters,
sometimes, with the joint sponsorship of
the State health department.

Education of Clinical Specialists in

Arthritis. There has been a substantial
increase, in the last fifteen years, in op-
portunities for advanced training for phy-
sicians who wish to concentrate in the field
of rheumatic diseases. This has tended to
occur, particularly, in centers in which
there is an ongoing research program. It
has been stimulated by the training grants
program of the National Institute of Ar-
thritis and Metabolic Diseases (PHS).
However, since such training grants have
concentrated in the training of younger
physicians for research in the field of
rheumatic diseases, there has been a real
problem, financially, in providing training
for men who are not primarily interested
in research, but who wish to develop their
proficiency in the diagnosis and manage-
ment of the arthritic patient. The Arthritis
Foundation, both at the national level and
through its local chapters, has tried to
meet this need to a limited extent. There
is a very real need for financial support
for men who are seeking advanced train-
ing in this field in order that they may be
better prepared to provide care for the
arthritic patient.

We are not aware of comparable train-
ing opportunities for the other professions
that are concerned with providing health


care. Chapters of The Arthritis Foundation
and governmental health agencies have or-
ganized one and two-day symposia to pro-
vide public health nurses, visiting nurses,
nutritionists, .physical  therapists, social
service workers, vocational, recreational,
and social rehabilitation workers with some
information  concerning  the particular
problems of the arthritic. Most of the real
experts in these paramedical professions,
as far as the arthritic patient is concerned,
have developed through "on the job train-
ing" by participating in the activities of
an arthritis center, rather than through an
organized program of training.

Hospitalization Problems

Organizational a& Financial Considera-
tions. Both hospital organization and plan-
ning and the patterns of defraying the
costs of hospitalization in this country have
tended to center on care for the patient
with acute illness. There is a limitation to
the extent to which such patterns can be
adapted to the needs of the patient with
chronic disabling disease. Physical facilities
and administrative organizations, which are
quite suitable for the care of patients who
are hospitalized for a week or two, are often
not appropriate for providing optimum

care for patients whose hospitalization is
a matter of months. Similarly, hospitaliza-
tion insurance plans, which are adequate
in meeting the cost of acute illness, are in-
adequate when applied to patients who
require long-term hospitalization.

Hospitalization programs for the ar-
thritic patient have tended to develop in
training centers, usually in connection with
medical schools. The problems that were
cited above become more pertinent if rec-
ommendations  are considered for the
extension of the development of such re-
sources in the community and voluntary
hospitals. An easy solution might appear
to be the development of hospital facilities
that are designed, organized, and financed
to meet the specific needs of the arthritic
patient. But there are obvious disadvan-
tages in the development of such facilities:
They tend to become isolated from the
mainstream of medical progress and care,
and they are difficult to integrate with fol-
lowup services that are much more likely
to be part of an overall community or
regional program.

It is apparent that those who set out to
make realistic recommendations for pro-
viding adequate hospitalization facilities
for patients with arthritis must weigh the

above considerations carefully.

Standards of Ezcelknce in Hospitahza-
tion Resources. The most important aspect
of the quality of care that is provided dur-
ing the hospitalization of patients with
arthritis is clearly dependent on the pro-
fessional qualifications of the staff. In
addition to the general diagnostic and con-
sultation services that are usually found in
a general hospital, the special skills of men
who are trained in rheumatology, ortho-
pedic surgery, and physical medicine are
required. Special training is also needed
in the paramedical health professions that
are concerned with the care of such pa-
tients. These include nursing, social serv-
ice,  vocational rehabilitation, and psy-
chological testing workers. The public and
voluntary agencies can be most effective in
providing support for the training of such
individuals, and also in insuring adequate
budgetary provision for the variety of skills
that must be brought to bear in the care
of the arthritic patient.
Continuing Medical and
Social Supervision

Continuing medical and social super-
vision is usually provided by outpatient
clinics that are closely affiliated with the
institution that is providing the resources


42

for hospitalization of the arthritic patient.
It is clear that the organizational and finan-
cial problems, as well as the maintenance
of quality in such continuing activities,
are dependent on much the same factors as
those that were outlined above, under the
heading of hospitalization. However, it is
in this area of continuing supervision that
the role of the physician becomes less pre-
dominant and dependence on adequate
programs in the home nursing, physical
medicine, and social aspects become in-
creasingly important. It is also in this area
that integration with other community pro-
grams that deal with the chronically ill
patient can be most effectively utilized.
Currently, most of the activities that are
directed toward this aspect of the care of
the arthritic patient have developed through
the local and regional chapters of The
Arthritis Foundation. Such activities have
included aid in the establishment and con-
tinuing support of arthritis clinics; the pro-
vision of physical therapists to work with
the visiting nurses' and public health nurses'
programs; financial aid in the provision of
corrective supports, splints, and wheel
chairs to severely handicapped individuals;
the maintenance of mobile physical therapy
units for the homebound arthritic; and

participation in community homemaker,
recreational,  rehabilitation,  and home
nursing efforts. The Arthritis Foundation
has developed a set of recommendations
for standards for the organization and op
eration of such arthritis clinics.

Summary

Today, we, in this country, can bring
excellent resources to bear on the problems
of prevention of disability from rheumatic
diseases. A significant segment of the
medical profession is interested in rheu-
matology; nearly 2,000 members of that
profession are organized into an effective,
professional organization.  We have a
strong and outstanding voluntary health
agency that is concerned with the problem.
Our research activities are the envy of the
rest of the world, and we have a preponder-
ance of eminent investigators and clinicians
in the field of rheumatic diseases. There is
a focus of special interest in rheumatic
diseases in nearly two-thirds of our medi-
cal schools,  and there are over three
hundred special clinics for patients who
suffer from these diseases. The U. S. Public
Health Service is committed to helping the
American people find the answer to chronic
disease, and State and local health author-
ities are dedicated to serving the health

interests of those for whom they are re-
sponsible. And regional and community
organizations are concerned with the med-
ical and social aspects of chronic incapac-
itating disease. With stronger interaction
and liaison between these groups, advances
can be made "which will convert the prob-
lem of rheumatic disorders from a public
liability to an area of competence in disease
control, rehabilitation and prevention of
disability." (6)

Bibliography

1. Roemmich, W.: Disability and rheumatic dia-
eases: social security data. Arch. Environ-
mental Health (Chicago) 4:490, 1%2.

2. Short, CL and Batter, W.: The course of
rheumatoid arthritis in patients  receiving
simple medical and orthopedic measures. New
England J. Med. 238:142, Jan. 1948. Also
Short, CL, Bauer, W.. and Ropes, M.W.:
Rheumatoid Arthritis. Harvard Univ. Press,
Cambridge, Mass., 1957.

3. Duthie, J.J.R., Thompson, M., Weir, M.M.
and Fletcher, W.B.: Medical and social aspects
of the treatment of rheumatoid arthritis, Arm.
Rheumat. Dis. 14:133, June 1955.
4. Duthie, J.J.R., Brown, PK., Knox, J.D.E.
and Thompson, M.: Course and prognosis in
rheumatoid arthritis.  Ann. Rheumat. Dis.
16:411, Dec. 1957.


5. Duthie, J.J.R., Brown, P.E., Truelove, L.H.,
Barager, F.D. and Lawry, A.J.: Course and
prognosis in  rheumatoid arthritis. Ann.
Rheumat. Dis. 23:193-204, May 1964.

6. McDonald, O.H. and Penn, LM.: Tulsa's Ar-
thritis Program.  Nursing Outlook, Vol. 10,
Sept., 1962.

7. Edwards, M.H.: National and International
Review of Arthritis Programs: Conference on
Arthritis as a Public Health Problem, Hous-
ton, Texas, Feb. 4 and 5, 1964. U. S. Public
Health Service,  Division Chronic Diseases,
Washington, D. C 20201.

Workshop 7

Socioeconomic Aspects
(Financial Resources)

Ronuld W. Lamont-Hawers, M.D., Chairman

Arthritis has been a problem with which
the individual patient and his immediate
family have had to cope since antiquity.
Today, however, the impact of arthritis is
so great that it has become, in .addition, a
public health problem of major importance
to the Nation, as well as to individual com-

munities.  This is well illustrated in the
selected statistical data that is available.

These statistics must be interpreted,
however, with an understanding of the
many factors that are involved in their
compilation. Some of these will be explored
during the Workshop session.

Arthritis patients seldom have arthritis
as their only problem. The general age
group is such that other chronic and acute
diseases as well as the infirmities of age,
are frequently concomitant companions.
Invariably, the psychosocial consequences
of the disease are a major burden. These
multiple problems must be taken into con-
sideration. In many respects, therefore, the
study of arthritis can be viewed as the
prototype of studies of chronic disease
problems that normally face the community.

The clinical aspects of arthritis and the
rheumatic diseases generally will not be
discussed. Background information on this
aspect can be obtained from the "Primer on
the Rheumatic Diseases." Of all the various
diseases that are classified under the rheu-
matic diseases, those of greatest socio-
economic importance are rheumatoid ar-
thritis and osteoarthritis.

Other sections of the Workshop will be
discussing many of the problems that con-

front the individual and the community,
from the standpoint of needed facilities
and personnel. This Workshop on socio-
economic aspects will concenfrate, pri-
marily, on the problems that are associated
with the major economic impact of arthri-
tis upon the patient and the community.

It is expected that a number of areas
that are in need of additional study and
information will be identified. Typical of
these areas are the following: The need for
assessing services and facilities for the ar-
thritic in the local community; the difficult
problem of implementing actions so noted;
and the manner in which the unique needs
of the arthritis patient and of those with
chronic disease, generally, can be inte-
grated into the present health care plans.

43


44.

Workshop
Reports and
Discussions

Public Education and
  Information

Chairman: William S. Clark, M.D.

The effect of crippling arthritis on the
Nation's health  and  economy  consti-
tutes an emergency that the public can
no longer ignore. Arthritis is the Nation's
number one crippling disease. It exacts
an enormous toll in human and material

resources.

Arthritis is a growing and spreading
problem. Something can be done about it
now. Intensified and sustained programs
of public education and information are
essential to the achievement of effective
control of the crippling effects of all major
forms of arthritis.

  The extraordinary amount of personal
disability and the burdensome cost of the

individual to his family, to the community,
and to the Nation that result from arthritis
can be attributed, in part, to the general
lack of information and the considerable
abundance of misinformation about the
nature of the arthritic diseases. It can be
attributed, also, to the lack of motivation
to develop and utilize optimal professional
skills, meaningful facilities, and resources
for treatment and care.

Moreover, misconceptions about arthritis
are being perpetuated by counter propa-
ganda for the promotion of legitimate and
fraudulent treatments for arthritis. Public
education cannot be clearly separated from
professional education, either in concept or
in practice. As one panelist put it: Every
physician is a layman in some area of the
medical sciences.

Moreover, the level of information of
the general public is proportionate to the
degree of professional knowledge. The sub-
ject, Public Education and Information,
could well be included on the agenda of
each of the six other panels that are ar-
ranged for this conference.
Responsibility for public education and
information rests with all agencies that are

1  concerned with the problem of arthritis,
as well as with individuals in the medical


and paramedical specialties who are in-
volved in the care of the arthritic patient.
Public education cannot take place in a
vacuum. It must begin with the patient
and relate to meaningful and attractive
services that are available for effective

treatment.

In this discussion, we will consider the
patient to be a part of the public. A high
priority objective in the prevention of crip-
pling arthritis is bringing the patient into
points of contact with skillful professional
personnel and effective medical facilities.

The purposes of public education and
information can be stated as follows: The
goal of the effort against arthritis is to
reduce or prevent disability in its victims
now and, as soon as possible, to develop
techniques for cure or total prevention.

Our Workshop believes that there is sub-
stantial factual information on arthritis
that is not now reaching patients and the
rest of the public. We believe that bring-
ing such information, in a proper way, to
those who need it can motivate them and
influence their behavior, thus contributing
toward a solution of the problem of
arthritis.

The public information program for ar-
thritis should include the following pur-

poses: To motivate those with arthritis to
seek qualified medical care, to seek it
sooner than they might otherwise, and to
stick with it; to improve attitudes toward
arthritis and the arthritic individual, re-
placing despair with justified hope; to
motivate educators at all levels to pay more
attention to arthritis; to create in the public
an awareness of the size and seriousness
of the arthritic problem (it being noted
that the decisions of individuals who are
not physicians, but who serve on hospital
boards, or on legislative bodies, or who
support and participate in voluntary or-
ganizations, will largely determine what
will actually be done about arthritis) ; to
stimulate widespread interest in a major
effort against arthritis and in the challenge
the problem poses.

The Workshop notes that while doctors,
nurses,  and other health workers are
trained by professional educators, it is
usually exposure to public information that
stimulates them to select their careers.

The more that is said about arthritis in
newspapers, in private sayings, in maga-
zines, books, and over radio and television,
the more excitement will be generated
about it and the more young people will
be drawn to careers in it.

What is done in the public sector of
information, if done well, can also have a
massive impact in the area of improving
the amount, quality, and effectiveness of
professional education.

Whom to educate . . . The public, at
large, including the physician, as well as
the layman, is the audience to which public
education and information programs on
arthritis must be addressed.  Programs
should be directed to specific groups, phy-
sicians, paramedical specialists, educators,
pharmacists, community leaders, and others
who, in effect, educate or advise the public
or mold public opinion.

Certain segments of the arthritis prob-
lem have especially pertinent application
to certain groups. There is reason for con-
cern about the patient's understanding of
his own problem.
Content . . . The public information and
education program on the arthritic diseases
should contain the following basic elements
in its approach:

The public must be made aware that
many of the rheumatic diseases are man-
ageable and preventable and that tremen-
dous public health problems have been
conquered by their demand.
The importance of early diagnosis must

45


he continually emphasized. With proper
medical care, severe crippling can be pre-
vented in most cases of arthritis, and most
patients are able to maintain significant
measures of function, or significant meas-
ures of independence, regardless of the
stage of progress of the disease or the
severity. Lost function can be retained or,
to a great extent, restored.
Treatment must he administered by qual-
ified physicians; and it should be the pol-
icy of public education programs to
identify and explain the elements of ade-
quate care. These include regulation of
physical activity and environment, proper
diet guidance when appropriate, proper
selection and administration of drugs, the
use of physical medicine, and specialized
care, such as orthopedic surgery, psychi-
atric treatment, and rehabilitation tech-
niques.

Methods and techniques . . . The devel-
opment and support of a trained adminis-
trative staff and personnel for planning,
implementation, and continuity is essential.
There must be national, State, and com-
munity programs of information and edu-
cation about arthritis.

46

There must be development of sources
of information and cadres of individuals

to convey information through a variety
of conference and group techniques, in-
cluding neighborhood and patient group
discussions.

There must be development and selective
utilization of  audience-specific   terms.
There must be development of interest and
support by mass media for comprehensive
educational programs for arthritis care.
Conclusions and recommendations: It is
the consensus and unanimous agreement
of our group that more money should be
invested in public education and informa-
tion by all agencies. There must be a con-
tinuing and sustained effort. There must
be education of a special group of people
who need information in depth to act in
the capacity of educators and informers.
There must be research in the motiva-
tion of patients to seek and to accept ade-
quate treatment; and there must be
research in the comprehension of the in-
formational materials that are supplied to
patients, their families, and the public.
There must be intensified programs and
expansion of existing programs.  There
must be cooperation among agencies and
the avoidance of duplication; and we must
encourage greater involvement of all media
in the problem.

For the discussion, I have asked the
four people who helped prepare this report
to sit at this table and help me answer
questions, because I don't want to do all
the talking.

Discussion

DR. MCDONALD: I have no questions,
only a comment; and it is complimentary
to the group that you represent. I think
that this was a very good statement, and
that it will help to guide our Program in
the next several years. Thank you very
much for this report.

DR. WILLIAM CLARK: Thank you for
the gracious comments, Glen.
DR. TRAEGER: When you talk of con-
tinuity, just what do you mean?
DR. WILLIAM CLARK: We mean that
this shouldn't be a short burst, a one-shot
affair, that it should be a sustained pro-
gram and that there should be continuity
of knowledge, objectives, and planning.
We are not talking about a project for
1965. And programs in public education
must be adapted to increasing knowledge,
not only to knowledge about the nature of
arthritis diseases, but about the patient
and the public's acceptance of this knowl-
edge and about their motivation to act on
the problem.


DR. STILLMAN: I think that you have
done such a superb job that I have nothing
to add. I congratulate you and your com-
mittee.

DR. DECKER: Did the committee talk
about over-publication to the general pub-
lic of investigative advances that are not,
perhaps, pertinent to the status of any one
individual, but which can give him major
hunks of unfortunate information?

DR. WILLIAM CLARK: I don't know
that I understand the question, hut I am
going to let someone over here answer it.
Dave, do you want to take a crack at it?
Incidentally, my panel is, from my left
to my right, Mr. David Preston, science
writer, Dr. Theodore Bayles, Director of
Research, Robert B. Brigham Hospital
in Boston, Mr. Lee Curren, Director of
Public Information of The Arthritis Foun-
dation, and Dr. Ralph Jacox, Dept. of
Medicine, University of Rochester. Mr.
Preston will answer.

MR. PRESTON: The committee did not
specifically talk about that problem, but I
think it was the consensus of the committee
that we need a lot of specific material for
people with specific arthritic diseases and
conditions.

I think that if those materials were well

enough prepared and if they met the need,
the individual patient would not be likely
to be led astray by an occasional story
of the kind of which you are thinking.

DR. WILLIAM CLARK: Such as
DMSO.

MR. FRALEY: I think that this ties in
with what Dr. Traeger said-that you have
to raise the level of knowledge in the gen-
eral public continuously, on a sustained
basis, so that when there is premature pub-
licity the general public has some kind of
background in which to judge any specific
piece of information.

DR. JACOX: I think our committee
did devote considerable discussion to the
education of the patient as being an im-
portant way to make them less vulnerable
to these ill-advised press releases. And our
committee felt, generally, that if the pa-
tient had a good knowledge of his or her
disease, he would not only cooperate more
readily with treatment suggestion, but he
would be in a much better position to read
things, perhaps, that come out in the news-
papers about arthritis.

DR. JOHNSON: I am concerned about

the prevalent-and I say that guardedly-
idea that prevails among physicians who
are rendering firstline medical care to peo-

ple who have this crippling diseas+noth-
ing can be done for the arthritic.

I see arthritics in my office and in other
areas who were told, one, two or three
years before they came to me, that they
had one of the arthritides and that there
was nothing that could he done for them.
They had gone home and slipped into the
passive and recessive group. They had
accepted it.

How can you tell these people that, re-
gardless of the fact that one person in
medicine told them nothing can be done,
they should seek a physician who is inter-
ested in the process and who wants to get
something done for them? Is not that in
your purvey of services here?

DR. WILLIAM CLARK: Yes, sir. We
would like to respond to that, Dr. John-
son. Dr. Bayles?

DR. BAYLES: Well, I think one thing
that came out of our discussion was that
public education and information had to
be across the board. We even decided that
doctors were people, that nurses were peo.
de, that physical therapists and other
health workers were people, that high
school students and college students were
people, and that junior high school stu-
dents were people.  We had the strong

47


conviction that this kind of approach of
public education and information, while
it may be layered to different levels of

Mr. Fraley and our other science writ-
ers pointed out that we have to adjust the
reception, is an important function.


information to the people who are receiv-
ing it. And I think, in answer to this, we
would feel that the doctor who has told
the patient that there is nothing to do
about arthritis needs as much education
as the arthritic patient, his family, the
public, or those whom Bill Clark calls
opinion molders in the community.

So, I think it can be said that we are
not neglecting any category of individuals;
and we hope that we can reach, with dif.
ferent material, hopefully, every strata, or
every phase of people, as we call them, in
our country.

48

DR. WILLIAM CLARK: We emphasize
that public education begins with the pa-
tient and with those who are responsible
for the patient or on whom the patient
is dependent for any kind of assistance.
DR. ROBINSON: Mr. Chairman, some-
times one finds that when one has informa-
tion one thinks is useful for public
education, the journalist feels that this
doesn't fill the bill because it has no par-

ticular interest to them. Now, I find that
this might be exciting news, and they think



DR. WILLIAM CLARK: Yes, it did.
it is not. We have to get together on these



Dave?
matters. Did the committee consider this?

MR. PRESTON: I think that journal-
ists, important as they are, are a small
part of the total chain of communication
between people who know about arthritis
and the patient and the rest of the public.

I think that the journalist has to deal
in large measure with what he considers
to be new. I think an important message,
such as the fact that something can be
done about arthritis with what is known
now, will have to be delivered to the pa-
tient and other segments of the public by
many, many means.

It is my own personal guess that if we
had complete control of all the science
writers and journalists in this country, we
would still find that 75 percent of the in-
formation on this subject that patients and
the public were getting would be coming
from other sources.

DR. TOONE: I would like to make a
plea for the patient. I think this is the
individual who requires our attention and
our particular effort. I think it came out

in our discussions that, in many ways, he
has been greatly neglected, not only be-
cause of our shortcomings in treatment
measures, but in the fact that he never was
given the proper information about his dis-
ease. I think this all points up to the fact
that the patient is the individual at whom
we need to point most of our attention.

DR. WILLIAM CLARK: 1 did want to
make one other comment and amplify it.
Mr. Fraley made the point that we could
have sliced this differently and that the
public information and education could be
a part of each panel discussion.  Would
you wish to amplify that, Pierre?

MR. FRALEY: No, 1 think you covered
it. 1 would make a plea, too, that when-
ever any aspect of this disease. or of the
treatment and care that can be given it,
is under consideration, that the public in-
formation and public educational aspects
be takcan into consideration.

1 am particularly strong on the point
that research. for instance, is never done
until the results of the research are com-
municated not only to those people who
apply it to patients. but all the way out
ta the general public.

MR. CURRAN: I agree with Dr. Jacox.
It flas been a very rewarding session and


I have learned a lot. I think that some of
the statements and deliberations of our
group will help us at The Arthritis Founda-
tion to broaden our thinking and our pro-
grams that bring the facts about arthritis
to our people.

DR. BAYLES: Perhaps I had just bet-
ter point out to the group that we are all
going to go home with the responsibility
to help in this effort to spread the word,
or the party line, or whatever you want
to call it.

MR. NILES: I would like to make one
comment in amplification of Pete Fraley's
comment  that educational information
must essentially be on a horizontal basis
across all of the activities of the other
Workshops. From the other Workshops,
we will get the tools with which we can
work; and Pete Fraley and other science
writers and educators, and so forth and
so on, can use these tools and apply their
skills to hammer these points home.

Also, I think that we did not identify
one group in our panel. We identified
doctors as people, nurses as people, and
so forth, as people. Health educators were
identified as those who hold the lantern
while their mother chops the wood.
MR. PRESTON: Having been in the

field of science writing for many years,
since the time when there was very nearly
open warfare between the immediate pro-
fession and science writers, it is extremely
gratifying to find lay science writers called
here by the government to work with doc-
tors and other health professionals to try
to solve the problem. I think it is very
encouraging.

DR. WILLIAM CLARK: Thank you.
That completes our report.

Diagnosis and Treatment
     Facilities

Chairman: Ephraim P. Engleman, M.D.

  Ours, as you know, is the Workshop
that was concerned with facilities for diag-
nosis and short-term treatment. The par-
ticipants  were practicing physicians,
fulltime medical academicians, an epi-
demiologist, a hospital administrator, an
expert on automated diagnostic screening,
a consultant on community planning, a
medical social worker, and a nurse. It was
agreed that there is an urgent need for
more facilities to permit more widespread
early diagnosis and treatment of patients

with arthritis. The immediate questions
were: What are the best available meth-
ods of diagnosis and treatment? Where
can they be found?

It was recognized that proper diagnosis
depends on painstaking clinical history and
physical examination and on certain labo-
ratory and X-ray findings; that the most
effective program for patient management
is multidisciplinary and time-consuming;
and that optimal methods of diagnosis and
treatment are found in certain existing
arthritis teaching units. These centers are
university-based units, in which knowledge
of arthritis is pursued and applied and
in which there are personnel and facilities
for exemplary diagnosis and patient care,
for professional education at both under-
graduate and postgraduate levels, and for
research.

Prior to World War II, there was only
a handful of such centers in the United
States;  and all were in a few Eastern
States. Following World War II, three
significant developments  made possible
establishment of additional -arthritis centers
that fulfilled the above description: (1 J
creation of The Arthritis Foundation; (2)
establishment of the Training Program in
Arthritis of the National Institute of Ar-

49


thritis and Metabolic Diseases (PHS) ;
and (3) the entry of the National Founda-
tion into the field of arthritis.

Nevertheless, in 19a, when the National
Foundation withdrew its support, there
were scattered throughout the United States
no more than 38 exemplary arthritis
centers, of which 17 are currently (1965-
1966) supported by The Arthritis Founda-
tion. It is by no means certain that The
Arthritis Foundation will be able to con-
tinue this support after July 1, 1966. To
further compound this problem, there is a
critical shortage of arthritis service clinics
in the United States. There are only 300
such clinics, approximately one to every
23 accredited hospitals; and in many, the
services are inadequate. Recommendations
1 and 2 are designed to preserve existing,
qualified arthritis centers and clinics, to
upgrade the services of others, and to
create new service clinics, as personnel and
funds become available.

50

Recommendation 1. Certain existing ar-
thritis centers should receive continued
support to enable them to sustain their
exemplary functions.  These should be
identified as Regional Arthritis Centers
and should fulfill criteria and provide
services as follows:

a.

b.

C.

d.

e.

They should be university-based, or
affiliated with large medical centers,
and should provide facilities for pro-
fessional training and research.
They should be distributed according
to geographic and population needs.
(See appendix).

They should provide facilities for diag-
nosis and comprehensive care of out-
patients. Comprehensive care includes
prevention of disability and provisions
for optimal physical restoration, per-
sonal and emotional adjustment, and
vocational guidance, training, and/or
placement of all candidates.
Medical personnel should include a full-
time director, who is a physician with
training in rheumatic disease, part-time
consultants in internal medicine, ortho-
pedics, physical medicine, and pediat-
rics, and other qualified consultants.
when necessary.  Trainees,  house of-
ficers, and students should also attend.
Paramedical personnel should include
a physical therapist, a medical social
worker, a nurse, a secretary, and other
qualified personnel, when necessary.
One of these should also serve as the
" coordinator of  patient  services."
While these people will work full-time

f.

in the parent institution, all but the co-
ordinator might also contribute to other
chronic disease facilities within the in-
stitution.  The coordinator of patient
services, a full-time member of the ar-
thritis center, is defined as one who
collaborates with all members of the
team in planning the patient's program.
He will provide the integration of pro-
fessional activities that will ensure the
provision of diagnostic and treatment
services with maximal efficiency and
effectiveness. Any one of the paramed-
ical personnel may serve as coordinator,
but he must have knowledge of the
local health agencies and their services.
Patient services should be readily avail-
able and should be utilized effectively.
Cordial relations should exist between
the center and the sources of patient
referral, such as local physicians, ar-
thritis clinics, public agencies, house
ofhcers, and others.  In addition, the
patient admittance policies should be
flexible and compatible with those of
the parent  institution.   Consultants
should be available within the confines
of the clinic. New and problem patients
should be seen by both the medical and
paramedical staffs, in order to ensure