Pediatric Annals

Asthma Self-Management Programs and Education

Norman J Lewiston, MD

Abstract

"You say your little boy has asthma? Oh, Dear! Isn't that usually psychological?"

- Little Old Lady. Anywhere, USA

"In more than 25 years of caring for the sickest asthmatic patients in the nation, I have yet to see a case that is wholly psychological in origin."

- Dr. Hyman Chai, Senior Staff Physician, National Jewish Hospital, Denver

The 3 million or so children in the US with asthma are not well-served by the ambiguity surrounding the basic pathophysiology of their disease. Society has managed to convince itself (and the patients) that asthma is somehow the fault of the individual. This is due in part to Theodore Roosevelt who overcame childhood asthma and frailty through vigorous physical exercise, and in part by the medical profession who, even today, has failed to agree on a unimodal approach to this condition. Because of this ambiguity, it is important that the child, the family, and the extended family learn as much as possible about factors which precipitate the individual's asthma and the most effective means of bringing the disease under control. Self-management programs are important in this regard. They have three main objectives:

1. to remove the stigma of self-fault for the condition;

2. to integrate the reality of asthma into the lifestyle of the individual's choice;

3. to learn management skills to avoid or minimize conditions which cause asthma attacks.

Most asthma self-management programs have some variation of the following four principles:

1. Asthma is a very common metabolic disease. Having asthma is annoying but not disgraceful. In spite of a large body of literature attempting to make the asthma of childhood a psychological disorder,1 recent information about the nature of bronchial hyperreactivity suggests that asthma is more likely of metabolic origin involving the autonomie nervous system.2'4 Even if emotions and stress serve as a major trigger for attacks, the notion that disease and not the individual per se are responsible for the asthma, makes the entire process more acceptable to the patient and the community. Absolution of the individual from major responsibility for the etiology of wheezing permits energy to be directed at identification of factors which trigger attacks (allergies, infections, stress, exercise, etc. ). This also makes the concept of a treatment plan more sensible than the elusive search for a "cure." Identification of asthma as the cause of a young girl's problem might take the following form:

Your daughter's symptoms are caused by a condition known as asthma. We now believe that asthma is caused by a genetic predisposition to a metabolic condition that somehow prevents the lungs from recovering from a variety of stressful conditions in a normal manner. These stresses may be of several types: allergic, infectious, exercise, stress, etc. Our diagnostic plan will attempt to identify those causes which are important to your child's health and our treatment plan will be to render these as unimportant as possible. Asthma can be very stressful to patient, family, and community. Part of our treatment plan will be to help you and your child deal with these stresses and to permit both of you to participate in the treatment of the asthma to a large extent. We have material appropriate for her age which will help her understand the disease and why she needs to receive treatment and medications.

2. People with asthma can lead hill and active lives. This is especially important for the child who has suffered embarrassment because of ignorance about this disease, especially from physical education teachers who know about Teddy Roosevelt but not exercise-induced bronchospasm and try to treat asthma with outdoor laps on…

"You say your little boy has asthma? Oh, Dear! Isn't that usually psychological?"

- Little Old Lady. Anywhere, USA

"In more than 25 years of caring for the sickest asthmatic patients in the nation, I have yet to see a case that is wholly psychological in origin."

- Dr. Hyman Chai, Senior Staff Physician, National Jewish Hospital, Denver

The 3 million or so children in the US with asthma are not well-served by the ambiguity surrounding the basic pathophysiology of their disease. Society has managed to convince itself (and the patients) that asthma is somehow the fault of the individual. This is due in part to Theodore Roosevelt who overcame childhood asthma and frailty through vigorous physical exercise, and in part by the medical profession who, even today, has failed to agree on a unimodal approach to this condition. Because of this ambiguity, it is important that the child, the family, and the extended family learn as much as possible about factors which precipitate the individual's asthma and the most effective means of bringing the disease under control. Self-management programs are important in this regard. They have three main objectives:

1. to remove the stigma of self-fault for the condition;

2. to integrate the reality of asthma into the lifestyle of the individual's choice;

3. to learn management skills to avoid or minimize conditions which cause asthma attacks.

Most asthma self-management programs have some variation of the following four principles:

1. Asthma is a very common metabolic disease. Having asthma is annoying but not disgraceful. In spite of a large body of literature attempting to make the asthma of childhood a psychological disorder,1 recent information about the nature of bronchial hyperreactivity suggests that asthma is more likely of metabolic origin involving the autonomie nervous system.2'4 Even if emotions and stress serve as a major trigger for attacks, the notion that disease and not the individual per se are responsible for the asthma, makes the entire process more acceptable to the patient and the community. Absolution of the individual from major responsibility for the etiology of wheezing permits energy to be directed at identification of factors which trigger attacks (allergies, infections, stress, exercise, etc. ). This also makes the concept of a treatment plan more sensible than the elusive search for a "cure." Identification of asthma as the cause of a young girl's problem might take the following form:

Your daughter's symptoms are caused by a condition known as asthma. We now believe that asthma is caused by a genetic predisposition to a metabolic condition that somehow prevents the lungs from recovering from a variety of stressful conditions in a normal manner. These stresses may be of several types: allergic, infectious, exercise, stress, etc. Our diagnostic plan will attempt to identify those causes which are important to your child's health and our treatment plan will be to render these as unimportant as possible. Asthma can be very stressful to patient, family, and community. Part of our treatment plan will be to help you and your child deal with these stresses and to permit both of you to participate in the treatment of the asthma to a large extent. We have material appropriate for her age which will help her understand the disease and why she needs to receive treatment and medications.

2. People with asthma can lead hill and active lives. This is especially important for the child who has suffered embarrassment because of ignorance about this disease, especially from physical education teachers who know about Teddy Roosevelt but not exercise-induced bronchospasm and try to treat asthma with outdoor laps on cold mornings, in this regard it is useful for the child to meet others his age who also have asthma, especially those who are successful in school and sports. The goal of therapy for most asthmatic children is to permit them to lead as active and normal lives as they wish. There is a television advertisement for Primatene Mist (epinephrine, Whitehall Laboratories) which is instructive in two ways. It shows a bowler who must stop his game to take an aerosol because of asthma, demonstrating the effect of the aerosolized epinephrine in a schematic crosssection of a bronchus. Although most of us would prescribe a bronchodilator pre-exercise to prevent the bronchospasm, it does demonstrate that asthmatic persons can be active in sports. It also gives a primetime demonstration of the action of a bronchodilator in reducing spasm of bronchial smooth muscle and mucosal edema. Rick Demont, the young man who lost his Olympic gold medal because he had taken asthma medication should be awarded a much larger one by society for serving as an example of what an asthmatic athlete can accomplish.

3. It is much easier to prevent than to treat an asthmatic attack. The Figure is one scheme to demonstrate to patients and their parents that prophylactic medication prior to exercise or a respiratory infection is appropriate. The wheezogenic potential is the summation of all factors in an individual which produce wheezing. Although this biological parameter cannot be measured directly at this time (possibly intracelkilar CAMP concentration?), it does demonstrate the additive effects of several factors and the rationale for trying to achieve a "safety net" to prevent wheezing, The development of sustained-release theophylline preparations has done much to prevent the "Two O'Clock Syndrome" in elementary pupils. Asthmatic children would be given a 4-hour theophylline preparation by their mothers in the morning and would be fine until noon. Being normal kids, they would refuse to take the noon-time dose of medication carefully sent with their lunch. The usual vigorous lunch-time activity would trigger exercise- induced bronchospasm and they would do poorly in afternoon classes. A brief nap at home and the after-school medication would restore them to normal, leaving mother and teacher to wonder why a child who was so bright in the morning would fall asleep right after lunch.

Figure. The Wheezogenic Potential - This diagram is used to convince patients that it is important to take medication even if they are free of wheezing. The scenario is; ". . . this patient is a 14-year-old boy who will wheeze whenever his wheeze potential (WP) is greater than 40. (The wheeze potential is a theoretical biologic value which to date cannot be measured.) On day 1 his baseline WP is 30, below the critical value, and he is wheeze-free. On day 2 he encounters a major allergen and plays soccer, each of which will increase his WP by 10 units. Since his baseline value was 30, an increase of 20 will result in a WP of 50 and he will wheeze. On days 3 and 4 he has taken asthma medication which has reduced his baseline WP to 10 units (seen on day 3). Re-encounter with allergy and another soccer game on day 4, even though these two events add a total of 20 WP units, now results in a total WP of 30, a value which will permit him to remain wheeze free."

Figure. The Wheezogenic Potential - This diagram is used to convince patients that it is important to take medication even if they are free of wheezing. The scenario is; ". . . this patient is a 14-year-old boy who will wheeze whenever his wheeze potential (WP) is greater than 40. (The wheeze potential is a theoretical biologic value which to date cannot be measured.) On day 1 his baseline WP is 30, below the critical value, and he is wheeze-free. On day 2 he encounters a major allergen and plays soccer, each of which will increase his WP by 10 units. Since his baseline value was 30, an increase of 20 will result in a WP of 50 and he will wheeze. On days 3 and 4 he has taken asthma medication which has reduced his baseline WP to 10 units (seen on day 3). Re-encounter with allergy and another soccer game on day 4, even though these two events add a total of 20 WP units, now results in a total WP of 30, a value which will permit him to remain wheeze free."

4. People do not become addicted to asthma medication but do insist on breathing freely whenever possible. Pediatricians by nature are opposed to medication and manage, overtly or not, to convey this to parents. The bane of a specialist's day is to explain carefully the above concept of preventive medication only to hear the wail ". . . but, Doctor, he'll become addicted to those pills . . . those pills will weaken his body . . . he'll get used to taking drugs for all ailments and lose all natural healing ..." The experienced physician will explain early in the course of the illness that asthma, being a metabolic condition, is not one which can be cured but one which must be managed. The cost/benefit of each medication must be explained and attempts made to assess the wheezogenic potential by medication taper from time to time to demonstrate that the management process is dynamic and that patient and parent are active participants.

PROGRAMS FOR INDIVIDUAL PATIENTS

In this day of word processing and graphics programs for the personal computer, the physician may wish to express the principles of self-management in his own words. An example of this is seen in the Figure, a presentation to encourage the use of prophylactic bronchodilators even during wheeze-free periods. The Asthma and Allergy Foundation of America (AAFA) has produced a number of brochures for patient education, available through the national office." The American Lung Association also has available through its local offices a number of brochures about asthma. One in particular, "Superstuff," is a workbook for elementary and junior high children with a number of self- management exercises utilizing posters, games, stickers, etc. The kit also includes materials for parents to guide the younger child through the material. Although material in the format is informational rather than programmatic, it is very popular with the target population. Another individual management product with somewhat more structure is a workbook called "Teaching Myself About Asthma," by Parcel, designed for children ages 7 to 12.* Both of these products have received extensive field testing and have been found effective in imparting information.5

Table

TABLEINSTITUTIONS PROVIDING RESIDENTIAL TREATMENT FOR ASTHMATIC CHILDREN

TABLE

INSTITUTIONS PROVIDING RESIDENTIAL TREATMENT FOR ASTHMATIC CHILDREN

GROUP/CAMP

One of the most effective means of providing instruction in self-management is the group setting. Younger children prefer an action-oriented setting such as a day camp, their parents prefer a small group setting with a trained leader. Teenagers and siblings usually are resistant to any form of involvement unless it promises to be outcome-oriented. Camps for asthmatic children are extremely popular and relatively easy to fund since camperships for such kids are a high priority for fund-raising. There has been a notable shift in emphasis in asthma camps over the past decade. The overnight camp to give the poor unfortunate child a chance to get outdoors is less popular, the day camp to provide education as well as recreation is much more common. These latter camps frequently are funded by organizations such as the American Lung Association with the assistance of local physicians, health institutions, and interested parents. There are at least three packaged se If- management instructional programs appropriate for a camp or group setting which merit consideration.

ACT (Asthma Care Training) is a 5-session program with the theme, "You're in the driver's seat," with many driving and traffic analogies. The 5-session format makes chis particularly suited to the 1-week day camp format. This program is available without charge from Asthma and Allergy Foundation of America. The second program is "Camp Wheeze," an educational program integrated with selected recreational activities for a day camp format. A nominal charge is made for this material. " A problem common to both of these programs is the need for a skilled leader to present the materia! since there is an attempt for behavior modification as well as education. A third program, which is more self-contained, is WOW (Winning Over Wheezing), a cassette-workbook program designed for group instruction. This program has received wide distribution without charge from William H. Rorer Inc. t Several published studies have reported that these programs are effective in achieving their stated objectives. 5"7

Although many parents express the desire to meet other parents with asthmatic children and to learn management skills, they rarely attend meetings unless there is a definite group task. One particularly successful ploy is to arrange for "breathing exercises" for the children with a concurrent session for the parents. The breathing exercises usually turn into an encounter session for the kids, a support session for the parents. It is very important to secure the services of a trained group leader for the parents since the first few sessions probably will result in a great deal of frustration and anger from the parents at the disease, the health care system and the kids. A leader who is used to diffusing anger will be worth the price, even at group therapy rates.

RESIDENTIAL

In spite of the most modem diagnostic and therapeutic procedures, there are some children who just cannot live at home because of their asthma. Referral to a residential treatment center may be an appropriate means of providing instruction in self-management while external stresses are modified or delayed. A discussion of the current philosophy of residential treatment is presented in a 3-part editorial by Chai, Johnstone, and Falliere.8 Major drawbacks to residential treatment include: 1) the escalating cost of prolonged care, now several hundred dollars per day, and 2) a strong tendency for the family and the referring physician to follow an "out-of-sight, out-of-mind" attitude while the child is out of the home. Nearly all severely asthmatic children derive some benefit from a properly staffed, well-conducted residential stay. Most institutions offering this care have an in-house program for self-management of medications and mild attacks, the one at Sunair by Richards and co-workers is of particular note.9 The Table provides a partial listing of institutions which provide residential treatment for asthmatic children.

Although the principles of se If- management are general, obviously each child and family have their own needs. The successful management of asthma requires all of the skills of the "compleat" family physician, including the willingness and skill to become acquainted with all members of the family and their values. This knowledge will help the practitioner, and the staff, to select a self-management program suitable for each child. Few moments in pediatrics are as happy as the mother proudly displaying an infant who did not develop pneumonia with a respiratory infection or the ribbon won by the previously disabled child for a school athletic event. Asthma education and awareness will, in the future, prove to be an important adjuvant to pharmacologie and immunologie intervention in the management of childhood asthma.

REFERENCES

1. McCullough D: A sickness of the direst SOTI, in Mornings on Harxback. (The Childhood Years ofTheodore Roosevelt), O.K. Hall, Boston. i981.

2. Cockcrafr DW. Killian DN. Mellon JJA, et al: Branchial reactivity ro inhaled hutamine, a method and clinical survey, CKn Auerg) 1977; 7:235.

3. Hargreave F (ed): Arnuay Reactivity: Mechanisms and Cimical Relnancc. Hamilton. Ontano, Asna Pharmaceutical* Canada. Ltd. , 1930.

4. Goldslein RA ed): Advances in the diagnosis and treatment of asthma. Chest 1965; 87; I S- ? 3S (supplement).

5. Green L, Goldstein R, PaAei S: WoAshop proceedings on self- management of duldhood asthnu. J Allergy Cita Immunoi I983; 72 (pai t 2):5?9-526.

6. Racheldsky G, Lewis C. de Ia Sota A. Lewis M: ACT fot kids. Chea 1985; 87:985-1008.

7. Blessing-Moore J, Riti G, Lfwinon N: Self-management programs fat childhood sauna. OKU 1985; 87: 1 07S- 11 CS.

8. Chai H, Johnstone D, Fatliers C: Specialized centén for asthma: Use and misuse of institution! for residential care, rehabilitation, and research. iAsihma 1981; 20:t-9.

9. Richards W, Church I. Roberts M ,et al: Asetf-helppcogtaro for childhood asthma in a residential trcaoDem cent«. Cfai Miao I981; 20:453.

10. Pehkin M, Friedman: Rewknttalasth mat Kannent cen sin the United States and problems in relation to them, joumai of Asthma Research 1975; 12:129-176.

11. Peshkin M: Survey of convalescent institut ions for asthmatic children in the United States and Canada, Journal of Asthma Research 1965; 2:181.

TABLE

INSTITUTIONS PROVIDING RESIDENTIAL TREATMENT FOR ASTHMATIC CHILDREN

10.3928/0090-4481-19860201-10

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