78
TRENDS
B JOHN P. HUBBARD, M.D., Contributing Editor
Statements appearing in this column do not necessarily reflect the opinion of the editor nor are they to be interpreted as the official opinion of the Academy.
COMMUNITY
RHEUMATIC
FEVER
PROGRAMS
T
lIE pediatrician plays an important rolein the care of children with rheumatic
fever or rheumatic heart disease. As a
clinician, his primary concern is with the diagnosis and treatment of the individual case. Adequate care, however, of a child with this bong-term disease is much more than a pediatric problem. Its solution
re-quires the services of many other
profes-sional individuals and agencies.
The integration of these skills and
serv-ices necessitates planning and organization. Ideally, the person to call attention to the
many needs of children who have
rheu-matic fever or rheumatic heart disease is the
pediatrician. He should take leadership in working with others in the community to
plan and develop a program.
SURVEY OF THE COUNCIL ON RHEUMATIC
FEVER AND CONGENITAL HEART DISEASE
A survey of rheumatic fever programs
undertaken by a special committee of the
Council on Rheumatic Fever and
Con-genital Heart Disease in 1950 and 1951 revealed that in those communities visited, pediatricians, internists, and cardiologists had taken the initiative in developing serv-ices for rheumatic children. By and large, these services met the need for a thorough diagnostic study and for institutional care
during the active and convalescent phases. Home nursing, educational, and other social
needs, however, were being used on an organized basis in only a handful of com-munities.
The survey made by tile Council was
essentially a study of medical care. The conclusions and recommendations of the study were based on observations in 13
Some of these communities
were urban; some were rural; others, part of a state-wide program. As a working guide for the study, the following definition of a community rheumatic fever program was used:
“A community rheumatic fever program
covers a community or an administrative area
including several communities. It promotes the development, integration, and periodic evalua-tion of services and facilities in the community, and is designed- (1) to find individuals who have rheumatic fever or heart disease; (2) to
remove the label of falsely diagnosed rheumatic fever from children and adolescents, and (3) to ensure that individuals receive adequate and
colltilluing care.”
A basic questionnaire used in more than 300
personal interviews was arranged in the following six sections : “General facts about the community; Administration of program;
Case finding; Diagnostic services; Institti-tional care; Home care.”
BASIC QUESTION FOR EVALUATING PROGRAM
In evaluating the extent of services pro-vided in his own community for rheumatic fever care, the pediatrician will be inter-ested in one basic question. “Can or does the child or adolescent with rheumatic fever or heart disease get all the care he needs in our town?” To answer this question with
some degree of certainty, the care provided for rheumatic children ought to be subject to evaluation in adequately defined terms, such as benefit to the patient’s health, per-missible physical activity, prevention of recurrent attacks, optimum educational and social development.
* Summary report available through the offices
TRENDS 79
Survey data along these lines, however, have not yet been secured for two reasons:
(1) the lack of a precise and generally
ac-cepted definition of criteria for evaluation,
and (2) the lack, in most programs, of
ad-ministrative measures for periodic evalua-tion of services and of program content.
SUMMARY OF SERVIcES
In all surveyed communities, diagnostic facilities and hospital care for the acutely ill were available. In a majority of these communities, institutional convalescent care as well as medical, nursing, social follow-up services, and some assistance with home care were also provided. These services, however, were uneven and often limited in
coverage. In most communities, preventive
programs, vocational guidance and
rehabili-tation, and occupational therapy were not
as yet part of a rheumatic fever program. In the intervening three years, the im-portance of a continuous program of
pre-vention through penicillin or sulfonamide prophylaxis has been recognized in many communities, and steps are being taken to
coordinate the activities of pediatric cardiac clinics, practicing physicians and school health services in order to provide follow-up supervision and prophylaxis for the
rheumatic fever child.
COMMON SUccESSFUL FEATURES
The most comprehensive programs were those started as pilot projects of the U.S. Children’s Bureau with the cooperation of
state agencies. Their success can be traced
to a combination of the following factors: 1. The services had reached their high
level through the vision and leader-ship of the physicians in charge. Lo-cally, physicians assumed leadership in carrying out or supporting the pro-gram.
2. For each program considerable budg-etary provisions for medical care had
been set aside to assure continuity of
the program for a number of years. 3. The program staff could, if desired,
obtain advice from pediatric and pub-lic health consultants.
4. The authorities in each program
in-sisted on maintaining high standards.
Programs were extended into new regions only if expert personnel and
adequate clinic and follow-up facilities
could be provided.
5. The programs stressed in-service
train-ing through staff conferences, case
discussions, and special courses.
DEFICIENCIES FOUND IN PROGRAMS
In spite of progress made in the last 10
years with regard to the extent of services
and the number of rheumatic children under treatment, there remained, in most community programs wide gaps between the ideal goal and actual accomplishment. The deficiencies may be summarized as
follows:
1. Lack of enthusiastic leadership in the
community to spearhead the program. 2. Lack of clearly defined administrative
authority and responsibility for the community program.
3. Lack of coordination between agen-cies.
4. Insufficient diagnostic and treatment
facilities, and lack of related services
of care for older children, adolescents
‘and young adults; almost no
institu-tional facilities for Negro patients.
5. Failure to maintain an up-to-date case registry showing the number of
chil-dren and adolescents served by the program and the type of care or super-vision given them.
6.
Frequent breaks in continuity of careand in follow-up supervision.
7. Failure to develop preventive meas-ures, particularly systematic
prophy-laxis of streptococcus infections and
improvement of the home environ-ment.
8. Failure to set up procedures for periodic evaluation of the services re-quired to meet the needs of rheumatic fever patients.
The last named deficiency was found
COMMUNITY RHEUMATIC FEVER PROGRAMS
estimate of the total number of children
with rheumatic fever or organic heart
dis-ease. In many communities, only a fraction of the diagnosed cases were systematically followed through school life.
PROFESSIONAL EDUcATION
Among the most important program ac-tivities of a director of a rheumatic fever
program is the interpretation of the
pro-gram to pediatricians, internists, and
gen-eral practitioners. Their support can be
best obtained by making clear to them that where the facilities are under an official agency, the private physician will retain control over his individual patient.
The importance of continuous
profes-sional education was emphasized in all program statements. It seems, however, that
two different though coordinated programs are needed for education in rheumatic
fever.
For practicing and school physicians,
education should shift emphasis from
valvu-lar rheumatic heart disease to the nature
of the rheumatic infection. Furthermore,
the preventive and long-term features of rheumatic fever should be stressed.
Prac-titioners should be aware of the limits of
(liagnostic and therapeutic measures in office and home practice and of the as-sistance which they can obtain from medi-cal consultants, the public health or visiting nurse, the medical social worker and other
special services.
For the pediatricians and other special-ists, education should aim at improvement of their diagnostic ability and of clinical
evaluation of rheumatic fever patients. It is essential to define the responsibility of the
pediatric consultants as one going far be-yond diagnosis. They should have a fa-iniliarity with the specific nursing problems of rheumatic fever care and with the social implications of the disease.
MINIMAL PROGRAM REQUIREMENTS
This brief report OIl rileulnatic fever ir-grams cannot cover the great variety of
program organization, community size and
resources 111 various parts of the country. Oil the basis of long experience in the care of handicapped children, tile U.S. Chil-dren’s Bureau adopted tile policy that the State Crippled Children’s Divisions develop
total community rheumatic fever programs rather than isolated special services. This
policy is based on a recognition of the
corn-plex problems created by a long-term or recurrent disease of insidious Ilature.
It has been a successful policy for pilot
programs. However, programs which do not have the advantages of special funds and
personnel accorded to pilot studies have to
rely on local resources which are often very limited. Useful rheumatic fever services can be organized even in remote rural coun-ties where adverse geographical factors and limited resources and personnel make it extremely difficult to plan for a comprehen-sive program at the start. The survey ex-perience suggests the following minimal requirements for a rheumatic fever
pro-gram:
1. A group composed of representative members from the principal health services of the community which ac-cepts full responsibility for the pro-gram. Its first objectives will be:
Orientation of the group itself through consultation, visits to
estab-lished programs, agreement on
im-mediate objectives and determination
of community resources available for the care of rheumatic fever patients.
Channeling to local physicians and
to public health and school nurses of
111)-to-date information about rheu-matic fever, the many needs of rheumatic fever children, and about a community plan which seems feasi-ble within the resources available.
Education of the public, particularly among parents and teachers, regarding rileumatic fever and the local program PhIl.
pa-TRENDS 81
tients either directly or in cooperation with the family physician for those who can afford private medical care. 3. Case-finding through local physicians,
clinic personnel, public health nurses and teachers. This can be effective only after the first two basic require-ments have been fulfilled.
4. Provisions for institutional care during the acute phase, or in cases where home conditions are inadequate.
Where there are no facilities in the
community area, the program should include definite arrangements with a regional hospital. The hospital should have qualified personnel and adequate
equipment for treating bedridden pa-tients with rheumatic fever.
5. Prophylaxis program through con-tinuous use of penicillin or sulfona-mides. These measures greatly reduce the incidence of rheumatic fever re-currences. Provision of services to en-sure protection to individuals with a history of rheumatic fever has become an obvious responsibility of a com-munity program.
6. Periodic evaluation of services should
be planned right from the start, even where limited services exist. By
keep-ing a detailed record of all patients
under care, evaluation can be carried
on periodically with the program staff available. The importance of periodic evaluation for maintaining high stand-ards of care cannot be
over-empha-sized.
PROvIsIONs FOR Soci ADJUSTMENT
A comprehensive program will not only
enlarge the services just mentioned but make provisions for social adjustment of rheumatic children.
Teachers specially trained for mstructillg chronically ill or handicapped children are
nee(led for the continuity of education in the home or hospital. Vocational guid-atice services should be rendered by quali-fied persoilnel for the early channeling of physically or educationally handicapped
children into occupations of which they arc
capable.
Persons professionally concerned with
rheumatic and cardiac children and adoles-cents must be aware of the many needs of these individuals. They must understand also the importance and potentialities of
medical social services to their patients. It is worth repeating that care of the
mdi-vidual with present or past rheumatic fever is too complex to be solely the responsibility
of physicians. Success depends on
dis-ciplined teamwork between physicians, nurses, medical social workers, teachers,
vocational specialists, and their agencies.
The final test is not only the medical result,
but the optimum development of the mdi-vidual child or adolescent.
REsP0NsLBILrr’i FOR PROGRAM
A means must be found in the community
for all these services to work together. A
means also must be found to establish the need, and to secure financial support, for
the program. It is not conceivable in our
democratic society that any one agency is
going to “control” or “operate” or finance
all these services. Leadership, planning
to-gether, and inter-agency cooperation are essential. A community council or
commit-tee may assume responsibility for this vital
feature of a local rheumatic fever program. Leadership to bring this about may come
from many quarters : local health
depart-ments, heart associations, or medical
so-cieties.
It is true that rheumatic fever mortality
has steadily declined and that antibiotics and sulfonamides have proved their effec-tiveness in preventing recurrences. How-ever, the problems involved in the
recog-nition and management of rheumatic fever are still as urgent now as they were in the past. The “technique” proposed is born of the necessity to provide the rheumatic
pa-tient with access to modern medical care. It
Can be applied to the solution of other medical problems especially those of a similar chronic Ilature.
GEORGE M. WHEATLEY,
