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S.Habibollah
Kavari, PhD
Assistant Professor of School of Management
and Medical Information Sciences,
Shiraz.
University of Medical Sciences, Shiraz,
Iran.
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Introduction.
Home therapy for chronic diseases is suitable
for hemophilics, because it is one clinical
area where home monitoring is recommended.
In our country, home therapy is an advantage
as it utilises less resources. For success
in this procedure, participation and acceptance
of the patient is an essential requirement.
Methods.
Study was done for a 6 month period from
the beginning of 1380 (Note from Editor:
Islamic date - around 600 years ago ) for
investigation into acceptance of self-treatment
by patients suffering from hemophilia. Patients
were above 5 years of age, and their family
lived in Shiraz. In this investigation,
training was used as a means of transferring
the minimum information and also to evaluate
the increasing rate of self-treatment and
its acceptance by the hemophilic patient
and their family. 21 people were selected
randomly. Related information pertaining
to social status of the patient and family,
before and after training, was collected
by questionnaire and analyzed with statistical
tests.
Results
From twenty-one patients, or selected families,
16 cases were found to be successful in
self-treatment. Success in acceptance of
home treatment was 75%, showing a meaningful
connection with level of literacy (P<0.05),
but no connection was found between the
number of patients with family, or of a
particular sex, or duration of the disease.
Discussion
. Findings show the rate of acceptance,
and participation of patients is ideal,
and it is suggested to consider teaching
self-training, initially in centers, for
hemophilic patient's self-treatment.
Keywords:
Hemophilia, Home therapy, Training, Self
treatment.
The
first examples of knowledge of hemophilia
were made in the 5th century A.D. At that
time Jewish clergy issued exemption for
circumcision of boys in families where bloodshed
culminated in death (1).
Hemophilia
is an inherited disease that is dependent
on sex. Its prevalence is one1 in ten thousand
in all societies (2).
In
Iran there are more than 5,000 patients
suffering from hemophilia with 3300 persons
with hemophilia type A. Until the present
time there is no cure and for maintenance
of life, the patient s have been dependent
on factor 8, which is injected. In most
chronic diseases home therapy is recommended,
because of the advantages of administering
of drug treatment in the home (5-3). Home
administration of therapy has been successful
in patients with chronic disease, among
them, hemophilia. (6)
The
injection of factor 8 helps in preventing
adverse events of hemophilia. It is important
therefore that families of affected individual
should have access to the treatment
In
hemophilia, self-treatment is a type of
home therapy whereby in administering the
drug, the patient or his/her family contribute
directly in the management which will help
in providing better services, provided the
patient or his family receive adequate scientific
advice.
In
spite of acceptance of home therapy in most
countries, this method in our country has
been used less frequently, and until now
study has not been done into its efficacy.
The published articles have focused on different
advantages of home therapy; decrease in
costs, decrease in infection rates and promotion
of physical status, and none have discussed
the rate of acceptance of this method, by
patients. (8, 7, 5 - 3). The present study
has taken into consideration this important
point, to find information, which will be
more effective in gaining cooperation of
patients.
The
method of study was by trial. Gathering
of initial data was done at a center of
uncontagious diseases of hygienic assistance,
a transfusion of blood organization, and
at a clinic of special diseases. The place
of training was at a clinic for special
patients in Shiraz city.
The
study population was 42 persons in the age
group 5 years and above, and who suffered
from hemophilia type A. The amount of factor
8 in their blood, according to a card at
the central transfusion of blood organization,
was less than 2 units. Half of the patients
were selected for random study. Studying
began in 1977 and continued for 6 months.
The patients, along with their family, participated
in theoretical and practical training classes.
Before training began questionnaires of
evaluation of personal information of the
disease were distributed. Gathering information
by questionnaires was analysed statistically
before and after the period with t-paired
and x2 test. Training in theory was done
via lecture, and questions and answer sessions
related to that were conducted before training..
Every 2 hour session, 3 days a week, continued
for 2 months.
Practical
training was in the form of groups of several
persons within the clinic and practicing
injections continued until confidence was
attained.
The
book of Self-treatment of Iran hemophilia
society was given to associates, of the
patient as well. This book contains necessary
information for patients; questionnaires
relating to specific drugs and methods of
self-treatment. Criterion of success was
not necessary for personal injections...
Control and supervision was done in clinics
of special diseases with recording of all
actions in patients' files, and with supervision
by responsible personnel.
The
average age of patients for the study was
11.95+ 6.5 year (maximum 26 and minimum
5 years). From twenty-one patients, 19 were
male and 2 female. 8 patients were aged
under 10 years and their family members
(father and brother) trained on their behalf,
and 13 persons participated in training
themselves.
In
the duration of the study fortunately no
cases of death, migration or major accidents
were observed. Level of education of educated
persons (parent + children) consisted of:
diploma - 3 persons, under diploma -10 persons
and illiterate - 8 persons. After the end
of the period, 15 persons succeeded to self-treatment
and 6 persons were unsuccessful.
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Table
1- Rate of success in self-treatment
| Success
in self-treatment |
71.4%
|
15
persons |
| Unsuccessful
in self-treatment |
28.6%
|
6
persons |
| Total |
100% |
21
persons |
Table
2- Comprehension of theory of persons in
beginning of training
| Percent
|
Number
|
Comprehension |
| 9.5 |
2 |
15 |
| 28.6 |
6 |
20 |
| 19 |
4 |
25 |
| 33.3 |
7 |
30 |
| 9.5 |
2 |
35 |
| 100 |
21 |
Total |
Table
3- Comprehension of theory of persons after
training
| Percent |
Number |
Comprehension |
| 4.8 |
1 |
50 |
| 19 |
4 |
70 |
| 23.8 |
5 |
75 |
| 9.5 |
2 |
80 |
| 28.6 |
6 |
85 |
| 14.3 |
3 |
90 |
| 100 |
21 |
Total |
The
average of comprehension of the theory before
training was 25.23 + 6 but after training
increased to 78.33 + 9.5 (P<0.01). The
group of instructed parents had no major
difference in outcome than the group that
had trained themselves.
Improvement
in comprehension showed no difference between
the sexes. Confidence in self-treatment
after training, showed 75% percent improvement.
Success
in self-treatment did not vary between the
sexes but did show a correlation with the
literacy of the person..
During
the study, no obvious accidents were reported,
not even incorrect dosage.
Birmingham
in an article entitled "work order
of selection of patient for venous treatment
in home" declared that medical expense
was an important factor (7). Modern doctors
should evaluate every patient and their
clinical status to find the best method
of home treatment. The article places more
emphasis on key criterions of selection
of venous methods for home therapy than,
type of drug and disease (3).
In
another article the special manner of order
of blood products in home for different
diseases was studied, and has been criticized
from unassimilation of its order and it
has been suggested that a blood bank organization
play a more active role (5).
Catania
emphasises the storage requirements of injectionable
drugs in the home with attention to factors
like: heat, light, , PH type of ????????
liquid and constancy of consumed drug (8).
In
another investigation, on five dogs suffering
from hemophilia B, injection of factor IX
in the form of subcutaneous, muscular and
inperituvan, was compared with venous injection
with subcutaneous injection offering better
results.
Subcutaneous
and venous injections were compared in humans,
as well. Because of similar results, some
problems of hemophilia treatment in home,
among them problems of venous injection,
subcutaneous injection replaced venous injection
(9).
Instruction
to assistants has been included the need
for personal hygiene (2).
The
book of "self-treatment in hemophilia"
that was translated and published by the
hemophilia society of Iran, has explained
the special requirements of self-treatment
perfectly (6).
With
attention to above references, home therapy
or in this case, self-treatment, is a useful
method and has been accepted in treatment
of chronic diseases, among them hemophilia.
But supervision, selection of patient and
special manner of treatment and skills of
doctors are important factors in order to
decrease accidents and increase success
rates.
This
study was undertaken to investigate acceptance
of self-treatment by hemophilia patients.
Self-treatment was considered an advantage
as once undertaken by the patient or family,
it alleviates pressure on prevention and
primary care facilities or centres.
With
attention to the conclusions of our investigation,
patients' knowledge increased in the form
of meaningful (P<0.01) results. Grades
of success did not show a meaningful connection
with sex, or number of sufferers, when the
individual or their family member is the
agent of self-treatment. There is meaningful
connection with level of literacy however.
The most important outcome was that 75%
percent of participants succeeded to self-treatment.
All
hemophiliacs require coagulation factors,
and because these can be stored properly
in the home, the role of the patient in
home treatment is indicated.
The
conclusions of this study show that the
rate of success in self treatment can be
achieved through the education of patients
and due to the success of the patients involved
in the study, we believe that self-treatment
of hemophilia is and desired.
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