WHAT THE JUVENILE DIABETIC KNOWS ABOUT HIS DISEASE

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WHAT THE JUVENILEDIABETICKNOWS ABOUT HIS DISEASE

Donnell D. Etzwiler, M.D.

St. Louis Park Medical Center

D IABETESMELLITUS is a chronic disease

that at the present time cannot be cured but can be controlled. Optimum con trol offers the promise of an increased life

expectancy with a minimum of medical

complications. To achieve this the patient must have a thorough comprehension of the disease and be willing to co-operate closely with the physician. Few other diseases place as much medical responsibility upon the pa tient. The diabetic must test his urine, choose his diet, regulate his physical activi ties, give his own injections and even adjust his daily insulin dosage. Thus he acts as his own technician, dietician, nurse and physi cian. Ideally such responsibility should be delegated to a patient only after he under stands the nature of diabetes and the care that is required. Education of the patient and his family is an essential part of the man agement of a diabetic and is the direct re sponsibility of the physician.

Psychobogic studies16 indicate that most adult diabetics have a normal intelligence and do not suffer from any severe person ality defects. We may assume that given proper instruction and encouragement the average adult diabetic is capable of accept ing the major responsibility for the care of his disease. Medical supervison of the ju venue diabetic is considerably more com plex. Since teaching must be carried out on at beast two levels, the physician must ob tain the interest, concern and co-operation of the parents as well as the patient. Educa tion of the parents is impaired by the fact that they are not experiencing the prick of the needle or the sensation of shock or ad dosis, which serve as such effective stimuli

to the adult diabetic. Instruction of children

is complicated by the individualization that must be achieved, and the educational pro

gram must be adopted according to each

child's age, abilities and experiences. Each year the child must be taught more about his disease and encouraged to assume in creasing responsibility, with the ultimate goal of self-care.

Medical literature unanimously urges self care by juvenile diabetics but is vague about suggesting an age when they are capable of assuming this responsibility. Obviously before self-care can be encouraged these children must understand certain basic prim ciples of their disease. While this is influ enced by many factors, there are no studies in the pediatric literature which evaluate

the age when most young diabetics com

prebend the fundamentals of their disease. It is the purpose of this study to gain some insight into what the juvenile diabetic knowns about diabetes and on this basis make recommendations concerning the age when self-care can be advised.

METHOD OF STUDY

In August, 1959, 74 diabetic children at tending Camp Needlepoint, a camp for dia betic children in Minnesota, were asked to complete a questionnaire on diabetes. These

children were from Minnesota, Iowa and

Illinois. They came from a variety of socio

economic backgrounds, and their ages

ranged from 6 to 17 years. At home they were cared for by 65 different physicians including 33 general practitioners, 24 pedia tricians, 7 internists and 1 other, in this

three-state area. The duration of diabetes

PEDIATRICS,January 1962

SexAge,

in I'earsTotal6—7

8—9 10—11 12—13 1@—15 16-17Male

Female

Total6

14 7 6

@

@ 7 13 11

@ @

4 13 @7 18 8 437

37

74

136 JUVENILE DIABETICS

among these children varied from 5 months to 13 years. Only eight of the campers had

diabetes for less than 1 year.

Ten of the questions asked on the ques tionnaire are listed herein. The answers were multiple choice, and an attempt was made to limit guessing by including the answer “¿Idon't know.―The results are de picted in the accompanying graphs (Figs. 1-10). Table I lists the number and sex of the diabetic children in each age group.

1. Have you ever read or has anyone ever read to

you any books or artic@esabout diabetes?

A. Yes B. No

C. I don't know

2. In uncontrolled diabetes the blood sugar is

A. Increased

B. Decreased

C. Neither (A) nor (B) D. I don't know

3. Insulin causes the blood sugar to

A. Increase B. Decrease

C. Neither (A) nor (B) D. I don't know 4. Regular insulin acts

A. Fast and over a short period of time B. Slowly and over a long period of time C. Neither (A) nor (B)

D. I don't know

5. Lente, PZI and NPH insulins act

A. Fast and over a short period of time B. Slowly and over a long period of time C. Neither (A) nor (B)

D. I don't know

6. When urine is tested with Clinitest tablets a

red-orange color means

A. Lots of sugar in the urine

B. Little or no sugar in the urine

C. Neither (A) nor (B) D. I don't know

7. When urine tests with Clinitest constantly show a red-orange color, do you need

A. More insulin B. Less insulin

C. The same amount of insulin D. I don't know

8. Is acetone in your urine

A. Good B. Bad

C. I don't know

9. If acetone is in your urine, do you need

A. More insulin B. Less insulin

C. The same amount of insulin D. I don't know

10. If you feel shaky and dizzy you should

A. Take more insulin

B. Eat sugar or take fruit juice C. Lie down and go to sleep D. I don't know

COMMENT

It is apparent when one reviews the data in the graphs that the juvenile diabetic's knowledge of diabetes is not a straight line function of age. Undoubtedly this is influ enced by many factors, such as intelligence, maturity, duration of disease, learning ex periences, and parent and physician teach

img. The formal education of the young

diabetic begins at a relatively early age (Fig. 1). Although none of the 6-amd-7-year old children recalled being read to about diabetes, 54 percent of the 8-amd-9-year old children stated that they had read or that someone had read to them articles or books concerning diabetes. Thus by the age of 8 to 9 years the majority of these chil drem were being read to about diabetes, in addition to the repetitive and intensive in formal education they experienced in the routine day-to-day care of the disease. Eighty-one per cent of 10-to-li-year-old

TABLE I

iOO%

80

60

40

20

0

80

60

40

20

0

6—7 8—9 0-lI 12—13 4—15 16—17

YEARS OF AGE

Fic. 3. Percentages of diabetic children, according

to age, who knew that insulin causes the blood

sugar to decrease.

parent in Figure 2 between the 32% of cor rect answers by the l0-and-l1-year-olds and the 72% by the 12-and-13-year-old group.

This discrepancy persists in Figure 3.

Seventy-eight per cent of the

12-and-13-year-olds realized that insulin causes the

blood sugar to decrease, but only 33% of the

diabetics l0-and-ll-year-olds knew this. All of the latter group were receiving insulin

injections daily. Certainly there are no two

more basic concepts of diabetes than the

realization that the blood sugar is elevated

when the disease is not controlled and that the action of insulin is to lower the blood sugar.

9uestions

4 and5 attempt

to evaluate

duration and action of the various types of insulin. Prior to camp all of the campers ex cept one were receiving long-acting insulin and 27% were receiving regular insulin daily. In Figure 4 we see that only 27% of the

children 10 and 11 years old knew that

I00%

80

60

II

F:

40

20

@ 0

20

0

6—7 8—9 10—lI 12—13 14—15 16—17

YEARS OF AGE

Fic. 2. Percentages of diabetic children, according to age, who knew that the blood sugar is elevated

in uncontrolled diabetes.

6—7 8—9 10-Il 12—13 14—15 16—17

YEARS OF AGE

Fic. 4. Percentages of diabetic children, according to age, who knew that regular insulin acts fast and

over a short period of time.

£

6—7 8—9 10—Il 2—13 14—1516—17

YEARS OF AGE

FIG. 1. Percentage of diabetic children in each age group who stated that they had read or had some

one read to them a book or article about diabetes.

children and 89% of the 12-and-13-year-olds had experienced this type of education. It will be of interest to recall the close cor

relation between these two age groupings as we discuss the comprehension of diabetes in the following figures.

The second and third questions and the

corresponding figures are concerned with

the elevated blood sugar in diabetes and the action of insulin upon it. Figure 2 de

picts the number of children who knew that

the blood sugar is increased in uncontrolled diabetes. Considering the number of cliii dren to whom parents had read about dia betes (Fig. 1), and assuming that all of them

had had blood sugar-determinations at

some time, it is surprising that it was not

until 12 and 13 years of age that the ma

jority of a group answered that question cor

rectly. The close correlation in Figure 1 be

tween the 10-and-li-year-old children and the 12-and-13-year olds is no longer apparent in Figure 2. A significant difference is ap

100%

80

60

40

138

00%

80

60

40

20

0

1:

100%

80

60

40

20

6—7 8—9 0-Il YEARS OF AGE

FIG. 7. Percentages of diabetic children, according

to age, who knew that when urine is constantly red

orange on testing, more insulin is needed.

with Clinitest the development of a red orange color in the urine means that there is a large amount of sugar in the urine. Al though 75% of this young age group knew what the color meant, it was not until the children were over 10 years of age that the majority understood the relationship be

tween the urine test and the daily insulin

requirement ( Fig. 7). This comparison demonstrates the difference between the specific knowledge of diabetes that children may possess and their inability to apply it to the practical management of their dis ease.

One of the most interesting but indeed alarming findings of this study was to dis

cover what the juvenile diabetic did not

know about the occurrence and significance of acetone in the urine. Figure 8 shows that 50% of the diabetics 12 to 17 years of age did not know that the presence of acetone in the urine of a diabetic was bad. I have

12—1314—1516—17

100%

80

60

6—7 8—9 10-lI 12-13 14—1516—17

YEARS OF AGE

40

20

0

Fic. 6. Percentages of diabetic children, according to age, who knew that red-orange urine after the

use of Clinitest tablets means a large amount of sugar in the urine.

6—7 8—9 10-il 12—1314—1516—17

YEARS OF AGE

Fic. 8. Percentages of diabetic children, according to age, who knew that acetone in their urine is bad.

@-LJ1.

i@-Lr-i@fl

YEARS OF AGE

FIG. 5. Percentages of diabetic children, according

to age, who knew that Lente, PZI and NPH in sulins act slowly and over a long period of time.

regular insulin acts rapidly for a short

period of time, whereas 78% of the 12-and

13-year-olds knew this fact. A similar find

ing is again seen when comparing the

knowledge of these children about the long acting insulins ( Fig. 5). Obviously before

anyone can make an intelligent judgment

concerning the daily insulin requirement it

is imperative that he knows the nature and

duration of the various insulins. This is par ticularly important if combinations of insu un are being used.

Experience is a most effective teacher,

and the frequent urine testing that must be done by diabetic children is an important part of their training. Questions 6 and 7 are concerned with the meaning and interpreta tion of these urine tests. In Figure 6 it is encouraging to see that the majority of even the 6-and-7-year-old group realized that

100%

80

60

40

20

0

SPECIAL ARTICLE

no reason to doubt these figures as only 45%

of the children stated that they had their urine tested for acetone at home. Only 50%

of the older age groups were capable of correlating the insulin needs of the diabetic

with the occurrence of acetone in the urine

(Fig.9).Thisstartling

voidin theknowi

edge of diabetics should stimulate many physicians to re-evaluate their teaching

methods as well as their appraisal of the juvenile diabetic's knowledge of his disease.

Eighty-nine per cent of the children at

tending Camp Needlepoint stated that they had experienced an insulin reaction some

time during the course of their disease. Fig

ure 10 depicts the percentage of children

who know that they should eat sugar or

drink fruit juice when they experienced the

most common symptoms of an insulin re

action. It was encouraging to learn that the majority of even the youngest diabetic chil dren understood this important rule of dia

betes.

CONCLUSIONS

Self-care by the juvenile diabetic is de

sirable. This permits the child to conduct

a relatively normal life free from continual

parental supervision. Before such independ

ence is encouraged, however, it is impera

tive that the child comprehend certain fun

damental concepts of diabetes and its man

agement. This understanding is achieved only through experience and education.

These begin with the onset of the disease

and are augmented with each day's dia

100%

80

6—7 8—9 0-H 2—@3 14—1516—17

YEARS OF AGE

FIG. 9. Percentages of diabetic children, according to age, who knew that the presence of acetone in

the urine means that more insulin is needed.

6—7 8—9 10-Il 12-13 14-15 16—17

YEARS OF AGE

FIG. 10. Percentages of diabetic children, according to age, who knew that they should eat sugar or

take fruit juice if they felt shaky and dizzy.

betic routine. The fact that 75% of the

6-and-7-year-old children could interpret a urine test properly (Fig. 7) is evidence of

the effectiveness of this daily informal edu cation. In order to properly prepare these

children for self-care, however, a more ex

tensive teaching program must be under

taken. The planning and supervision of

this education is the responsibility of the physician involved and constitutes an es sential part of the care of a child with dia betes.

As part of the educational plan the phy

sician may recommend books and articles to be read by the patient and the parents. Arrangements for teaching by nurses and dieticians may also be made and attend ance at diabetic society meetings and dia betic camps can be urged. Even with effec

tive ancillary personnel and educational op portunities the physician must take an ac tive role in this program. The routine office

visit with its review of urine tests and in

sulin dosage makes an excellent teaching

session. Extensive individual teaching by

the physician is time-consuming for the

practicing doctor and expensive for the pa

tient. I have found that group instruction

minimizes these difficulties. Parents and

children alike readily respond to this type of round-table discussion. In such groups more elaborate teaching aids may be uti lized, such as the filmstrips about diabetes

produced by the American Diabetes As

sociation. These serve as an excellent intro

60

40

20

duction to pertinent topics and appeal to young and old. The children and parents are urged to participate fully in the discus sions and actual experiences emphasize the teaching. The greatest value of this type of group teaching is the exchange of ex periences and concerns among the partici pants.

Experience and exposure to teaching

about diabetes does not insure the child's comprehension of the disease. This is the “¿unknown―quantity that varies with the individual child and must be evaluated by his physician. In this study we have at tempted to assist the physician in this as sessment by determining the approximate age when the majority of a group of dia betic children are capable of understanding some of the basic fundamentals of diabetes. Consequently, this is an age when these children are capable of translating their knowledge of diabetes into effective and re sponsible self-care.

KennedyT has stated that “¿thetaking of insulin usually poses few problems in the

young diabetic, and children of 8 to 10

years or older can be trained to take over its administration completely.― There are no references cited for these recommenda tions, and they differ greatly with the find ings in this study. Although children 8 and 9 years of age were being exposed daily to diabetic care as well as more formal teach ing (Fig 1), the majority of a group of chil dren did not realize until they were 12 and 13 years old that the blood sugar is ele vated in uncontrolled diabetes or that the action of insulin is to bower blood sugar. (Figs. 2 & 3). Again, it was not until the children were over 12 years old that the majority knew the durations of actions of regular and the bong-acting insulins (Figs. 4 & 5). Although 75% of the younger dia

betics knew the meaning of red-orange

urine after a test (Fig. 5), it was not until they were over 10 years old that the ma jority of any age group could relate this to the insulin needs. In view of the findings of this study it is apparent that the ma jority of juvenile diabetics investigated did

not comprehend the nature of their dia

betes until they were 12 or 13 years old. Therefore, it seems advisable in most in stances not to urge self-care upon these children until they reach 12 or 13 years of age.

It is my experience that many physicians urge self-care upon the juvenile diabetic at much too early an age. Many times this is done with the vindication that to live a normal life these children must assume the responsibility for their disease. Many dia betic children 8, 9 and 10 years old are urged by parents and physicians to accept responsibilities far beyond their knowl edge and understanding of the disease. Yet these same children are closely guarded and sheltered by the parents in other areas.

Teen-age diabetics are frequently a dif ficult group of patients to control. There are many reports in medical literature of rebellion and even attempts at self-destruc tion among this age group. This is most frequently manifested by over-eating, de liberate violation of dietary rules, refusal

to test urine, failure to inject insulin and

complete disregard for the diabetic regimen. It is not difficult to compare these behavior

patterns with the disturbances seen among

children who are forced into premature toilet training. The prolonged enuresis and encapresis sometimes seen in these young children closely parallels the rebellion ex hibited by the teen-age diabetic who may have been encouraged to care for his dia betes too soon. Urging self-care upon the juvenile diabetic at too early an age, there fore, may actually result in a disservice to the patient and the development of mab

adoptive symptoms.

SUMMARY

It was the purpose of this study to deter

mine what the juvenile diabetic knows

about his disease. It is evident from the

data presented that this knowledge in

It is advised that self-care not be urged upon diabetics until the time at which they

can comprehend the important funda

mentals of their disease and its manage ment. The possibility of adverse effects of

such early training is briefly discussed.

REFERENCES

1. Kubany, A. J., Danowski, T. S., and Moses, C.: The personality and intelligence of diabetics. Diabetes, 5:462, 1956.

2. Fischer, A. E., and Dolger, H.: Behavior and psychological problems of young diabetic pa tients: a ten to twenty year survey. Arch.

Intern. Med., 78:711, 1946.

3. Brown, C. D., and Thompson, W. H.: The diabetic child: an analytic study of his de

velopment. Amer. J. Dis. Child., 59:228, 1940.

4. McGavin, A. P., et al.: The physical growth,

the degree of intelligence and the personality

adjustment of a group of diabetic children.

New Engl. J. Med., 223:119, 1940. 5. Lisansky, E. S.: Convulsive disorder and per

sonality. J. Abnorm. Soc. Psychol., 43:29,

1948.

6. Brown, G. D.: Study of Some Phases of the Physical, Mental, and Personality Develop ment of the Diabetic Children in Minnesota. Thesis, University of Minnesota Graduate School, 1937.

1962;29;135

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Donnell D. Etzwiler

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