(Received November 30, 1972; revision accepted for publication February 5, 1973.)
This study was made possible with the aid of a Dominion-Provincial Grant, Province of Quebec. Presented at the Joint Plenary Session of the annual meeting of Ambulatory Pediatric Association,
American Pediatric Society and Society for Pediatric Research, May 1972.
ADDRESS FOR REPRINTS: (H.S.) The Montreal Children’s Hospital, 2300 Tupper Street, Montreal 108, Quebec, Canada.
PEDIATRICS, Vol. 51, No. 6, June 1973
DELIVERY
OF
CARE
TO
HEMOPHILIC
CHILDREN:
HOME
CARE
VERSUS
HOSPITALIZATION
Hanna Strawczynski, M.D., Andrew Stachewitsch, M.D., Gert Morgenstern, M.D.,
and Marjorie E. Shaw, R.N., B.Sc.N.
Front the Departments of Pediatrics and Psychiatry, McGill University and Montreal Children’s Hospital
ABSTRACT. Medical, economic, and social aspects of home care versus hospitalization in treatment of hemophiliacs were assessed in a two-year study. Thirty-six children were divided into two groups. During the first year of study half the patients were hospitalized when bleeding was reported, the other half were treated at home by Home Care, a team of physicians and paramedical personnel. During the second year groups changed assign-ments, thus each served as its own control. Home
Care provided a 24-hour telephone service;
treat-ment was carried out by a nurse at home or school. Results showed that great majority of bleedings did not require hospitalization. No complications were noted. While on Home Care more bleedings were reported and they were reported faster;
school attendance was better. Home Care,
pre-ferred by children and parents, provided an
excel-lent model for teaching and a new role for a
nurse-practitioner. Hospital days were reduced by 85%. Pediatrics, 51:986, 1973, HEMOPHILIA, HOME CARE, NURSE PRACTITIONER, HOSPITALIZATION.
T
HE management of bleeding inhemo-philiacs has been simplified in recent
years by the availability of cryoprecipitated factor VIII and other factor VIII and factor
IX concentrates.13 In spite of this, it is still common practice to hospitalize hemophilic children for treatment of acute bleeding ep-isodes, particularly in Canada, where hospi-talization is government paid. A mail survey
of 60 pediatric hospitals made by the Home Care Department of the Montreal
Chil-dren’s Hospital in 1970 showed that more than half of the Canadian centers and one-third of the United States centers hospital-ized their bleeders. Treatment in the emer-gency department was practiced much more frequently in the United States than in Canada. There were relatively few home-infusion programs or comprehensive hemophilia centers in the two countries.
For the child with frequent bleeding epi-sodes hospitalization spells disrupted family
and social life, poor schooling, and emo-tional problems. The cost is very high and
constantly climbing. Treatment in
emer-gency rooms, while cheaper, is often
medi-cally inadequate. Its episodic character with long hours of waiting and lack of
follow-up is probably responsible for many chronic joint problems in these children. Self-infusion or infusion by parents, a better
approach to treatment of hemophilia, was described by Lazerson,4 ‘5 Rabiner,#{176} and
others and shown to be medically safe and socially advantageous. This type of pro-gram, however, is not possible in the very
young child, the child with difficult veins, and the child from a deprived family be-cause of lack of necessary facilities and low level of public health education. Compre-hensive hemophilia centers offer excellent
care but for the busy housewife it is often impossible to take the child for treatment as
soon as he needs it. Valuable treatment time is lost, and schooling is missed.
The Montreal Children’s Hospital was
one of the Canadian hospitals where hemo-philiacs had been admitted for treatment of
ARTICLES
main reason for this approach. In 1970 a
de-cision was made to look into the feasibility
of treating hemorrhages by Home Care, a new approach aimed at providing a service
superior to that available in emergency rooms, but free from the high cost and so-ciopsychological implications of frequent
hospital admissions. The term Home Care
as used here signifies actual treatment given
in the home of the patient by medical per-sonnel. It varies from what is commonly ac-cepted as Home Care for hemophiliacs, namely the administration of the
intrave-nous material by the family.
The hospital has a Home Care
Depart-ment, established in 1964 for the purpose of
preventing or shortening hospital
admis-sions in many acute and chronic diseases in
childhood. It provides teaching and
experi-ence in ambulatory pediatrics to medical
students and residents. This department
was expanded to include the new service
for hemophiliacs.
A study was conducted from March 1970 to March 1972 to assess medical, economic,
and social aspects of home treatment of bleeding episodes in hemophilic children.
METHODS
Thirty-three hemophilia A and seven
he-mophilia B children living within a 15-mile radius of the hospital were divided into two groups. Their ages ranged from 2 to 15 years but most were below the age of 10
years and most were severe bleeders (Ta-ble I). The patients were assigned to alter-nate groups when they presented with their first bleeding episode. During the first year of study, group A was treated by Home Care, group B hospitalized for treatment of acute bleeding episodes. During the second year, groups changed assignments, thus each group served as its own control.
Bleeding episodes were classified as se-vere or mild to moderate. Severe bleedings
were: hemarthroses requiring aspiration, internal hemorrhages (central nervous sys-tem, gastrointestinal, renal, etc.) and pro-longed mucosal or extensive muscle bleed-ings with a drop in hemoglobin. Mild to
TABLE I
CLINICAL MATERIAL
Factor
.
Deficwncy
(% of normal)
No.of
Cases Age, yr
,
?‘o.of Cases
<1% 7 -5 11
1-5% 10 6-10 3
>5% 3 11-15 6
moderate bleedings were all other bleeding
episodes requiring intravenous treatment with concentrates. Standard treatment was the same for both groups (Table II). The cryoprecipitate for the home and hospital treatment was stored in the hospital’s blood
bank at a temperature of - 20C.
At the beginning of the study each pa-tient had baseline tests consisting of a
med-ical examination, hemoglobin, x-rays of
ankle and knee joints, joint range
assess-TABLE II
STANDARD TREATMENT
All bleeding episodes:
Cryopreeipitate*
-4 units/1 kg body weight “loading dose,” then 1 unit/12 kg every 1 hr or units/1 kg every 24 hr
Konynet
10 units/kg body weight “loading dose,” then 5
units/kg every 4 hr
Heinarlhrosis
In addition to above: Immobilization Ice packs
Analgesics as necessary When aspiration indicated:
aspiration after second dose of concentrate cast application
bivalve cast 4-48 hours postaspiration
Start isometric exercises and active physiotherapy as soon as judged proper
*Factor VIII concentrate used as standard treat-Inent for hemophilia A.
TABLE III
DISTRIBUTION ov BLEEDING EI’ISoDES ACCORDING TO
TIlE SEVERITY ANI) TIlE SITE OF BLEEDING, AND TOTAL NUMBER OF TREATMENT D&ys IN THE TWO PROGRAMS*
Total number of bleedings Numher of sevee bleedings Nuluber of mild to moderate
bleedings
Number of hemarthroses
home Care hfospilal . . 1
Four or tne 40 patients uia not complete
Proqram Program
the study: one died of intracranial
hemor-4’3’2 (57) ‘29’2 rhage, one developed a circulating
antico-15 (13) 38 agulant, two moved from Montreal. The
in-tracranial hemorrhage in a 10-year-old boy
417 (44) ‘254 . .
‘268 (36) resulting in his death and the severe blee
-ing episode in a boy of 5 years who was
found to have inhibitors occurred in the
‘2,030 (‘241) 1,644 summer of 1970 and were both handled by
immediate hospitalization.
There were two groups of children, A and B. During the two-year study each group spent one year in the Home Care Program and one year in the Hospital
Pro-gram. The results showed no significant dif-ferences l)etween the two groups while in the sime program. Experiences from the
two groups are therefore pooled together and presented as total programs. They are presented under three separate headings: medical, social, and economic.
Total Ilunhl)et of treat-nlent (lays
* Figures in parentheses represent blee(ling episodes
or treatment (lays requiring hospitalization in the Home Care Program.
ment, and muscle grading. These tests were
repeated at the end of each study year. Home Care provided a 24-hour service. Families in the Home Care Program called when bleeding occurred. If bleeding was
judged severe, the child was brought to the hospital to be assessed by a physician (hematologist or pediatrician). Treatment was then carried out at home by a specially
trained nurse from the Home Care team. She would inject intravenously the
crvopre-cipitate or factor IX concentrate, immobi-lize the joint, and order analgesic drugs.
In less severe episodes treatment was
car-ried out directly b the nurse at home or
school.
Whenever indicated, children in the
Home Care Program were hospitalized and discharged as early as their clinical condi-tion allowed, with the rest of the treatment given at home.
Children in the Hospital Program were managed in the traditional way: they pre-sented with bleeding in the emergency
room and were hospitalized if intravenous treatment was required.
In no other way were the children in the two programs treated differently. All
as-pects of chronic care, including coordina-tion of consulting services, physiotherapy, immunizations, treatment of infections, and
social counselling were provided by the
Home Care Department to all children and parents, regardless of assignment.
RESULTS
MEDICAL
There were no complications of treat-ment in either group. The occurrence of ur-ticarial reactions was very low in both
groups, it was noticed in only a few in-stances. Medical, laboratory, x-ray, and physiotherapy assessments did not reveal an’ differences that could be ascribed to the group assignment.
Most bleeding episodes occurred in he-mophiliacs with the greatest deficiency in clotting factor and joints were the most common site of bleeding in Home Care and Hospital Program alike.
Significantly more bleeding episodes were reported while in Home Care
Pro-gram, 432 as compared to 292 while in
Hos-pital Program. Of the 432 Home Care bleedings only 57 had to be hospitalized.
A breakdown of the total number of
Care Program (417) than on the Hospital Program (254) . Severe bleeding episodes,
however, were much more numerous when the patients were in the Hospital Program,
38, as compared to 15 while in Home Care Program (Table III ). This difference is
highly significant statistically. Presumably,
many bleedings were not reported because
of the threat of hospitalization and the ten-dencv to wait may have been responsible
for the increased number of severe epi-sodes. This was confirmed by an analysis of the “procrastination time”: the time elapsed between the onset of the hemorrhage and the report for treatment. At the beginning
of the study the two groups, regardless of Hospital or Home Care assignment, waited for the same time-24 hours average-before reporting for treatment. During the second year, children who were hospitalized
waited even longer-29 hours average-while children on Home Care lowered their average to 17 hours. The same trend be-conies much more obvious when only
se-vere bleedings are analyzed. The two groups started with the same average of 21
hours. In the second year, the average in-creased to 34 hours for hospitalized chil-dren and decreased to 8 hours for children treated at home. The impact of Home Care
experience seems to show in an increased resistance to hospitalization but an earlier utilization of home treatment.
SOCIAL
The 36 hemophilic children were mem-bers of 28 families. Six families had two and
one, three hemophiliacs in addition to unaf-fected children. Their social position was
defined according to the Index of Social Po-sition developed in New Haven.7 There were no families in the upper class I, six in
class II, seven in class III, eight in class IV, and seven in the lowest class V. Thus, the
majority belonged to lower classes and many of these, for reasons discussed before, could not be considered for self-infusion at the onset of this study. In manv instances, this was changed by the regular visits of the Home Care nurse. The nurse taught general
public health principles and, when mdi-cated, techniques of intravenous injections. This was supplemented by the physicians with a more detailed explanation of the
dis-ease.
Neutral social workers, not connected with the Program, interviewed the families
at the end of each study year. In these semi-structured sessions parents were encour-aged to express freely their opinion on
delivery of care. One family preferred hospi-talization : the mother of four found it
diffi-cult to care for the rest of her children with her two hemophilic boys treated at home. Twenty-seven preferred Home Care and disliked hospitalization for reasons one usu-ally hears from chronic patients in teaching hospitals. They are tired of the constantly changing staff, the endless repetition of their problems, the inexperienced students
and interns who learn on their veins. Hospi-talization was generally described as
de-pressing; schooling and behavior problems were common.
In the same interview the hematology consultant was identified as the most help-ful person when children were hospitalized,
and the nurse as the most helpful in Home Care. Significantly, these were the people providing continuity in each situation. Emergency and inpatient nurses and house
staff were named as least helpful.
The school attendance in the Home Care Program was significantly better with an
average of 2.5 school days missed per
bleeding episode, as compared to 6.2 days in the Hospital Program.
ECONOM
IC
The yearly cost of the total program for 36 hemophiliacs amounted to $66,100. This covered the expenses of both acute and
990 HEMOPHILIC CHILDREN
o Cutter Laboratories, Inc., Berkley, California 94710.
rent, (2) telephone, (3 ) office equipment
and supplies. There was no need to budget for these as the service was built within an established hospital-based Home Care De-partment.
The nurse was the focal point of the pro-gram and 12 hours of nurse’s time daily
were required. In addition to this 1% time nurse’s salary, a fixed fee was paid for the
on-call coverage during nights, weekends, and holidays and overtime fee for actual
work done during this on-call time.
A physician was involved on a one-fourth time basis. This included the time of all
consultants, a pediatrician, a hematologist, an orthopedic surgeon and a dental
sur-geon.
A physiotherapist and a social worker were employed on a one-fourth time basis
each, and a secretary on one-half time
ba-sis.
The greatest expense in the pharmacy budget was the factor IX concentrate, Ko-nyne#{176} at $47.50 per bottle of 20 cc. As stated before, the pharmacy budget did not include the cost of cryoprecipitate. An
esti-mation of this cost could be obtained from the number of units used in the two pro-grams. The average number of 25 units of
cryoprecipitate per bleeding episode was used in the Home Care Program, 29 units in the Hospital Program.
Supplies included platelet infusion sets, butterfly and plain needles and syringes. Taxi ticket system was used for transporta-tion of personnel and patients.
It was not possible to separate the cost of the treatment of hemorrhages at home from the total cost as the same personnel pro-vided acute and chronic care.
Of the total cost of $66,110, $34,550 was
spent on salaries, the rest, $31,550 covered the operational cost. The cost per child per
year was $1,836.
Out of a total of 2,030 treatment days in the Home Care Program, only 241 had to be spent in hospital. The Hospital Program
group was hospitalized for a total of 1,644
days, thus an 85% reduction of hospital days was achieved (Table III).
DISCUSSION
The utilization of personnel in the Home Care service for hemophiliacs requires some comments. The nurse had the greatest
direct responsibility. By combining the more traditional role of a nurse-coordinator with the newer one of a pediatric
nurse-practitioner, she soon became the central point of the program with physicians in the background in the role of consultants.
The nurse served as the first line of com-munication for the patients and families. All problems were screened by her, and only if
necessary were other members of the per-sonnet involved. She provided the acute
treatment, the coordination, teaching of pa-tients, families and sometimes school per-sonnel, and a great deal of both counselling
and primary care.
The impact of home visits on the families was discussed briefly before. The benefits were mutual. By gaining a more intimate knowledge of the families the nurse was
able to judge better their reliability in car-ing for a bleeding child at home and their potential for increased responsibility, such
as self-infusion.
Medical students and residents often ac-companied the nurse on home visits to learn the logistics of health care delivery. They also learned to appreciate better the tre-mendous impact of a chronic disease on a family.
Medical personnel dealing with hemo-philiacs are familiar with the phenomenon of late reporting for treatment and its se-quelae. Our results add new evidence to the
problem, particularly credible because of the controlled character of the study. The
same children repor.ted less hemorrhages, waited longer before reporting, and had more severe episodes while in Hospital Pro-gram than while on Home Care Program.
hospitaliza-ARTICLES
tion. Detailed comparisons are most
diffi-cult in the economic area, but a few gener-alizations emerge. To compare the cost of home treatment with the cost of hospital-ization called for separation of the cost of
acute care from the cost of the total pro-gram. With the exception of the social
worker and the physiotherapist, who were not involved in the acute treatment, the
same personnel provided acute and chronic care. Any estimates of the amount of time
spent by nurses and physicians on different tasks were artificial. In fact, it is our belief that the acute program succeeded because it was part of a total one. The 85% reduc-tion in hospital days would point to a sig-nificant overall saving if home treatment were to be more widely available.
Finally, it is not possible to quantify pa-tients’ satisfaction. However, it was the overwhelming impression that this was achieved by Home Care.
FOLLOW-UP
Eight months after the termination of the study, 67 hemophiliacs are treated by the program. Of these, 12 children, ranging in
age from 4 years to 16 years, are on home infusion, either by self, or one of the par-ents. Forty children are treated at home by the nurse-practitioner. Fifteen patients live
too far to be visited at home, and come to
the hospital where they receive treatment through the same nurse-practitioner on am-bulatory basis.
The flexibility of the system enables easy accommodation of all types of children and families. The group of self-infusers will
in-crease as more families are trained to be in-dependent. We find, however, that the larg-est group is best served by the Home Care nurse at home, mainly because of the young age of the child, poor facilities, and low ed-ucational level of the families.
The nurse-practitioner, who now has
three years of experience in this field treats approximately 95% of the bleeding epi-sodes either alone or with telephone
consul-tation with the doctor. Severe hemorrhages are very rare as the reporting for treatment is now almost immediate. Approximately
50% of all bleedings require only one load-ing dose of concentrate and the saving of
cryoprecipitate is considerable.
The operational cost increased but there was no need to increase the personnel. With a greater patient load the cost per
pa-tient per year is expected to decrease.
REFERENCES
1. Pool, J. G., and Shannon, A. E.: Production of high-potency concentrates of antihemophilic
globulin in closed-bag system: Assay in vitro
and in vivo. New Eng. J. Med., 273:1443,
1965.
2. Brinkhous, K. M., Shanbrom, E., Roberts, H. R.,
Webster, W. P., Feketer, L., and Wagner,
R. H.: A new high-potency
glycine-precipi-tated antihemophilic factor (AHF) concen-trate; treatment of classical hemophilia and hemophilia with inhibitors. JAMA, 205:613, 1968.
3. Hoag, M. S., Johnson, F. F., Robinson, J. A.,and Aggeler, P. M.: Treatment of hemophilia B
with a new clotting-factor concentrate. New
Eng. J. Med. 280:581, 1969.
7. Hollingshead, A. B., and Redlich, F. C.: So-mophilia A. Hospital Practice Magazine, Feb-mary 1971.
5. Lazerson, J.: Hemophilia home transfusion
pro-gram: Effect on school attendance. J. Pediat.,
81 :330, 1972.
6. Rabiner, S. F., and Telfer, M. C.: Home trans-fusion for patients with hemophilia A. New Eng. J. Med., 283:1011, 1970.
7. Hollingshead, A. de B., and Redlich, F. C.: So-cial Class and Mental Illness. New York: John \Viley and Sons, 1958, pp. 387-397.
Acknowledgment
We are indebted to Dr. Pierre Beaudr and Dr.
