compliance and self-help in an office practice

CLIN REV ALLERGY 213 5:213-230, 1987

Compliance and Self-Help In An Office Practice

Warren Richards

With the many recent therapeutic advances in treating childhood asthma, such as more selective beta-agonist drugs, cromolyn sodium, inhaled corti- costeroids, sustained-action theophylline, and, particularly, spacing devices that overcome the problems of poor coordination in the use of metered-dose inhalers,1 the symptoms of asthma should be controllable in most cases. At the Sunair Home for Asthmatic Children, a residential center for intractable asthmatics, several factors were found to contribute to treatment failure: 1) intrinsically severe disease, 2) underdiagnosis and undertreatment, and 3) poor compliance often associated with 4) psychosocial problems. The number of patients who were found to have intrinsically severe asthma constituted no more than 10% of patients. Indeed, in most cases symptoms were controlled within I to 2 months after admission. A significant number of children admitted were found to have received inadequate therapy for various periods of time before admission, and they did not improve even when adequate therapy was instituted as outpatients. Among these patients, poor compliance and psychosocial problems were felt to be principally responsible for treatment failure.

It is unfortunate that asthma continues to be a frequently underdiagnosed and undertreated condition. In a study of 179 children with recurrent wheezing in England, Speight et al 2 found that the diagnosis of asthma was not made in 158 (88%) and that bronchodilator treatment was rarely offered in the absence of such a diagnosis. Among those in whom the diagnosis was not made, there was a high rate of morbidity that was easily rectified with appropriate treatment. As suggested by Speight, it is likely that similar de- ficiencies exist in the United States as well as in other countries. Indeed, increased efforts are needed to ensure that patients with asthma are appropriately diagnosed and treated.

Patient compliance with prescribed medical treatment is a major problem in the practice of medicine; conservative estimates say that 50% of all drug- dependent, chronically ill patients do not follow their physicians' recommen-

From the Division of Allergy and Immunology, Children's Hospital of Los Angeles, and the University of Southern California School of Medicine, Los Angeles, CA.

Send correspondence and requests for reprints to Warren Richards, MD, Division of Allergy and Immunology, Children's Hospital of Los Angeles, P.O. Box 54700, Los Angeles, CA 90054- 0700.

© 1987 Elsevier Science Publishing Co., Inc. 52 Vanderbilt Ave., New York, NY 10017 0731-8235/87/$03.50

214 W. Richards

dations. 3 The same appears to be true in asthma. Radius et al 4 reported 66% compliance in asthmatic patients when compliance was defined as the pres- ence of any detectable theophylline levels in serum. In another study, 11% of patients were found to have therapeutic levels of theophylline, 24% had no detectable theophylline levels, and in 65% the levels were subtherapeutic, s

C a u s e s of P o o r C o m p l i a n c e

There have been several excellent reviews describing the causes of poor compliance and strategies to improve compliance. 6-1° Although assessing compliance is difficult and complex, several factors that contribute to noncom- pliance have been identified:

1. Health providers often either do not recognize the seriousness of the problem or are completely unaware of it.

2. Poor physician-patient/parent relationship. If the physician is perceived as disinterested or unfriendly about the patient's needs, or if the patient has no confidence in the physician, reduced compliance may ensue.

3. Characteristics of regimen: a. High cost (medication not purchased). b. Significant incidence of side effects of medication that were not de-

scribed to patient/parent. If the patient experiences unexpected side effects, confidence in the treatment regimen may be seriously jeop- ardized.

c. Complexity of regimen. The patient may lack the intellectual or physical skills (eg, swallowing pills) to follow instructions.

d. Long-term treatment. The longer the duration of treatment, the more likely the patient will become lax in following instructions.

e. When regimen requires behavioral changes that constitute a depar- ture from the patient 's regular behavior patterns, such as categori- cally telling an only child to avoid all contact with a pet.

f. Unclear instructions. The problem here may be vague, imprecise, ambiguous, and overly complex instructions. Sometimes the provider and patient are not fluent in the same language. Another problem may be clarity and legibility of written instructions.

g. When treatment affects physical appearance, eg, administration of steroid therapy.

h. When regimen results in patient "feeling different," eg, children are often adamant about not self-administering medication in the pres- ence of others.

4. Lack of continuity of care. 5. Issues involving the patient:

a. Denial of diagnosis by patient. This is particularly a problem in the patient with a long history of asthma and who does not want to "be different."

b. Inadequate unders tanding of illness and treatment. If the patient does not unders tand why treatment is necessary or does not believe in its effectiveness, the patient is less likely to be compliant.

Compliance and Self-Help 215

c. Lack of involvement of patient in formulation of medical regimen and subsequent decision-making process.

d. Psychosocial problems. It is not surprising that psychosocial problems in children and their families can arise as a consequence of asthma. Asthmatic attacks can be frightening to any individual, including adults, and produce insecurity. In severe cases, children with asthma may frequently be incapacitated and unable to keep up physically with their peers, miss a great deal of school, sleep poorly, suffer side effects from medication, and begin to feel they are "different" from their nonasthmatic friends. Parents often respond by overprotecting, spoiling, and needlessly restricting the child; in addition, parents themselves may suffer from the stresses and eco- nomic consequences of this chronic disease. Furthermore, nonasthmatic siblings of asthmatic children may feel neglected and constitute new difficulties for the family. These problems, should they occur, will unquestionably affect an asthmatic child's response to the condition and threaten the success of the therapy.

e. Lack of motivation.

I n s t i t u t i n g M e a s u r e s to I m p r o v e C o m p l i a n c e

Several steps can be taken to maximize compliance:

1. Continuity of care. It is not difficult to unders tand why a patient who is seen by a different physician at each office visit and who is given frequently changing or even conflicting instructions concerning treatment is apt to be noncompliant. Providing continuity of care in the context of a large general hospital 's teaching programs is difficult, but the problems are not insurmountable. In the Childrens Hospital of Los Angeles (CHLA) Allergy and Asthma program, all patients have an identifiable physician and care is provided in a group practice setting. Not only is the medical care better when it is continuous, but the educational experience for fellows and residents is improved accordingly. Cleveland Metropolitan General Hospital demonstrated that such a program can be conducted cost effectively, n

2. Develop an interactional style with the patient and parent that is more likely to be perceived as unders tanding and helpful: a. Determine specific concerns and expectations of the parents and

patient and respond to them. b. Adopt a friendly rather than a businesslike attitude. c. Avoid medical jargon. d. Spend some time in conversation about nonmedical topics. e. Be sensitive to a patient 's possible cultural differences.

3. Therapeutic regimen: a. Have the patient and parents actively participate in formulation. b. Minimize the number and frequency of drug administrations. c. Minimize the complexity of treatment, particularly in the initial stage,

eg, if a patient has nasal allergy in addition to asthma, it is wise to

216 W. Richards

defer treatment of this condition if it is mild and if the asthma treatment is already complex.

d. Introduce changes in regimen sequentially, eg, avoid making mul- tiple changes in medication simultaneously.

e. Try to accommodate regimen to patient's daily routine, eg, avoid regular administration of medication at school if at all possible.

f. Try to accommodate regimen to patient's intellectual and physical abilities, eg, use "sprinkle" medications or liquids if a child is unable to swallow a pill.

g. Advise patient and parents of side effects of prescribed medication. h. Take cost into consideration when prescribing. i. Have patient and parents "rehearse" method of administration of

medication, especially when the regimen is complex. j. Provide support and easy access to needed information for patient

and parent; eg, Maiman et al I2 found that telephone reinforcement by a nurse-educator was effective in achieving short-term improve- ments in asthma, particularly when that nurse was also an asthmatic.

k. When possible, try to obtain a prompt and dramatic improvement in symptoms that could be attributed by the patient to the treatment.

4. Communication with patient and parent concerning medical treatment: a. Use short words and sentences. b. Categorize information provided. c. Repeat information when indicated. d. Invite questions. e. Explain the benefits and risks of therapy to the patient and parents,

and involve them in the decision-making process concerning therapy.

f. Advice should be as specific as possible. g. Use written handouts whenever possible; there is evidence that com-

pliance can be improved substantially when instructions are written. 13 At CHLA we have constructed several algorithms that can be used by the patient and parent to administer therapy (Tables 1, 2). These minimize the need for writing instructions and also improve legibility. Algorithms have been found to be useful in reducing visits for upper respiratory infections in a primary practice setting. 14

h. Use a "contract" to obtain commitment from the patient or parents (Table 3).

i. Use a schedule chart. j. Use calendar-packaged or color-coded systems. k. If possible, use the services of an interpreter if language is a barrier. 1. Consider having a nurse reinforce instructions given to the patient.

Often patients feel less intimidated by a nurse, are more receptive to understanding the instructions, and are more willing to ask questions.

5. Education surveys have shown that the general level of knowledge about asthma and its treatment is poor.a~-17 However, reports are conflicting as to whether education about asthma and its treatment produces an increase in compliance. Several studies have suggested that patient education may improve self-management skills and decrease asthma mot-

C o m p l i a n c e a n d Sel f -Help 217

Table 1. C h i l d r e n s Hosp i t a l of Los A n g e l e s A l g o r i t h m for Episod ic A s t h m a

The Following Medicines Have Been Prescribed for Asthma

Use Them As Follows: 1. Take the follwing medicines every day for asthma:

What To Do If this happens . . . . . . . . . . . . . . . . . . . then . . . . . . . . . . . . . . . . . . . do this

2. You catch a cold or there is some other "warning signal" (e.g., change in weather) that your child will cough or wheeze and especially if coughing or wheeze actually begins

OR

a. Take _ _ 2 sprays before can give every 4 hrs until better

b. Give _ _ cc's in normal saline using breathing machine until better

C.

3. The wheezing or cough is pretty bad a. Call or see your doctor b. Continue as described in 2 above c. Stop for 4 days d. Take Prednisone tablets each day

for 5 days then

4. You wheeze and cough a. just at night

OR b. while playing

a. Take before bedtime for awhile

b. Before playing

5. You get a high fever or the doctor prescribed an antibiotic named Erythromycin

Reduce dose of by about 1/3

REMEMBER: 1. If you are wheezing pretty badly, Intal, Beclovent or Vanceril may make the wheezing worse since

they only prevent wheezing. Therefore, stop these medicines and call your doctor. If you are taking Vanceril or Beclovent & need a shot because you are wheezing badly, you MUST start Prednisone---be sure your doctor knows about this.

Side effects: Some of the medicines prescribed above occasionally cause side effects which are not serious, b ~ can be discomforting and consist of nervousness, wakefulness, stomachache, nausea, headache. If these occur, let your doctor know.

PRESCRIPTION REFILLS ARE AUTHORIZED ONLY DURING OFFICE HOURS (8 a.m. to 4:30 p.m.), MONDAY THROUGH FRIDAY.

How Medicines Work

1. a n d

open up narrowed chest tubes. 2. prevents the chest tubes from getting narrowed in

the first place. 3. Prednisone reduces the narrowing if it really is bad so that the medicine in #1 and #2 above can

do their job.

Table 2. A lgo r i t hm for Episodic A s t h m a

NAME DATE

THE FOLLOWING MEDICINES HAVE BEEN PRESCRIBED FOR YOUR CHILD'S ASTHMA. IF YOU HAVE ANY QUESTIONS ABOUT HOW TO USE THEM, BE SURE TO ASK

If this happens . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . then do this

1. If there is any "warning signal" your child is Give every hrs going to start wheezing (e.g., catch a cold change in weather, etc) if possible, before the cough and wheeze start

2. If your child (you) begins to cough or wheeze a. Give

b.

C.

every _ _ hrs in addition to the above until better Give spray, 2 spra~vs, every 4 hrs, if needed, in addition to the above Give cc in 3cc's of normal saline using breathing machine every 4 hrs

3. If your child's (your) cough and/or wheeze gets worse

a. Continue doing what you have been doing b. Call the doctor or go to the emergency room C.

4.

5. If your child (you) coughs and wheezes: a. Only at night b. With exercise

a .

b.

Give spray, 2 sprays:

before bedtime for awhile before exercising as needed and repeat, if needed, every 4 hrs

Side effects: Some of the medicines prescribed above occasionally cause side effects which are not serious, but can be discomforting and consist of nervousness, wakefulness, stomachache, nausea, headache. If these occur, let your doctor know.

PRESCRIPTION REFILLS ARE AUTHORIZED ONLY DURING OFFICE HOURS (8 a.m. to 4:30 p.m.), MONDAY THROUGH FRIDAY.

How Medicines Work

1. and open up narrowed chest tubes.

2. prevents the chest tubes from getting narrowed in the first place.

3. Prednisone reduces the narrowing if it really is bad so that the medicine in #1 and #2 above can do their job.


Table 3. Contract of Commitment

Dear Patient:

CONTRACT

One of the fun parts of growing up is to start to learn how to do things on your own.

We think a good place to start is taking care of your asthma.

I would like to invite you to become a member of a new TEAM----a team very much like the Los Angeles Dodgers. I am the Manager of your TEAM; you are the first baseman and Captain of the TEAM. Your parents and our nurse are very important members of your TEAM. Instead of trying to win a ballgame, the main purpose of our TEAM is to help you take care of your asthma. What happens in a baseball game if the first baseman should always drop the ball? The team losesl Since you are the first baseman of our asthma TEAM, we want to teach you about asthma so that you will learn to "catch the ball" and we will win; that is, by winning I mean you will not get bad asthma.

If you want to join our TEAM that would be just great! I, as the Manager of the TEAM, will make suggestions to you about the treatment of your asthma. If you don't agree--if you are having a problem with what I suggested--I will listen to you and we'll talk about the possibility of making changes. But, as Manager of the TEAM, the final decision will have to be mine. In any event, as a member of the TEAM, I will respect you and if you do well as a TEAM member, your parents and I will respect you morel

If you want us to help you help yourself--if you want to become a member of the TEAM, then please sign below.

(signature)

(date)

bidity. 12"18-23 Hil ton et al, 17 on the o ther hand , found little correlat ion b e t w e e n pa t ien ts ' k n o w l e d g e of their a s t hma and level of morbidi ty . Hi l ton et a124 and Van As pe ren et al 2s eva lua ted the i n d e p e n d e n t effects of an educat ional p r o g r a m a m o n g as thmat ic pat ients and found no i m p r o v e m e n t in s e l f -managemen t ability of a s t hma morbidi ty , a l though Hil ton et a] 24 did find that i m p r o v e d k n o w l e d g e and pat ient satisfaction were a c c o m p a n i e d by a reduct ion in e m e r g e n c y r o o m visits. Beck et a126 similarly r epor ted that in pat ients wi th renal t ransplants , k n o w l e d g e abou t d rugs significantly i m p r o v e d after an educat ional p rogram, but there w a s no correlat ion wi th compliance; mot ivat ional factors s e e m e d of grea ter impor tance .

Pe rhaps some of the conflicting results concerning the effects of heal th educa t ion u p o n a s t h m a morb id i ty in these studies can be expla ined by differences in the quali ty of medical ca re received by pa t ien ts in the var ious studies. If the medical care p rov ided was noncon t i nuous or

220 W. Richards

impersonal and the medical instructions given the patient or parents unclear (as may be the case in some clinic settings), then group health education programs encompassing symptom management could be very beneficial in reducing asthma morbidity. On the other hand, significant changes in asthma morbidity may not be discerned among those patients already receiving continuous care and ample instructions concerning treatment. Nevertheless, this latter group could also benefit materially from a group asthma education program through reinforcement of medical information previously received, discussion of problems with other patients and parents, and improved accommodation to the disease process.

D o r r 27 suggests that educational programs should be formulated to do the following: they should be appealing; they should focus material on specific experiences of a target group; and they should create an educational experience that will influence behavior related to the management of asthma so that the message is understood. Sufficient information should be provided so that the patient can participate in the decision-making process concerning therapy; additional information should not be forced upon patients lest this have a negative effect.

Several approaches can be used to provide educational material to asthmatic patients and parents. Patients can be referred to community programs made available in many cities by the American Lung Association, the Asthma and Allergy Foundation of America, and by organizations such as Parents of Asthmatic Children Association in Southern California, Asthma Care Training (A.C.T.) programs, camps, hospitals, residential care centers, etc. These programs have been proven effective; but to be successful, they should be integrated into the program of care provided in the private office. The patient's physician must know what the patient is being taught and ensure that the patient does not receive conflicting messages. If community programs are used, it is important that physicians familiarize themselves with the information being disseminated and provide input accordingly.

Programs are also available for self-education at home. These include the use of reading material, such as a workbook entitled "Teaching Myself About Asthma, "2s recommended for children 7 to 12 years of age, that is made available by the Asthma and Allergy Foundation of America, Superstuff, and games such as the "Winding Wheeze," available through the American Lung Association. An evaluation of the benefits of Superstuff revealed that participants acquired improved asthma self-control skills, had fewer interruptions of parents, and experienced greater improvement in the progression of asthma as reported by physicians; but there were no gains in general self-control abilities, self-esteem, in the severity of the disease, or intensity of average attacks. 29 These "home methods" are useful, but should be purely ancillary to either a community program or a program conducted in the office setting.

Commercially produced educational audiovisual aids (video and slide tape) also can be used for educating the asthmatic patients and parents in the office. If greater control of medical information delivered to the patients and parents is desirable, the physician can elect to produce an individual educational


Table 4. Objectives of Educational Program for Asthmatic Children

At the end of the Educational Program, patients should be able to describe:

1. Approximate incidence of asthma. 2. Incitants of asthma attacks. 3. What goes on in their airways to cause them to wheeze. 4. The likelihood they will outgrow asthma. 5. The likelihood they will get lung damage later in life. 6. The dangers of smoking. 7. The dangers of asthma. 8. The extent to which they can do things children without asthma can do. 9. Symptoms of asthma.

10. The three treatments of asthma and how the medicines work. 11. The categories of medicines for asthma. 12. The side effects of these medicines and what to do about them. 13. How to avoid things that cause wheezing. 14. What role the asthmatic child should play in treatment. 15. The prognosis of asthma. 16. The optimal therapeutic range (blood level) of theophylline. 17. The importance of assertiveness.

presentation using video or slide tape equipment. Computer-assisted game programs also have been used for health educational purposes. 3° At Childrens Hospital of Los Angeles, we have produced our own program using the Singer Caramate, a sound slide projector with screen, and have found it to be effective and economical. When producing a personalized office program, the author recommends basing the program on a series of educational goals and objectives (Table 4). Whichever method of presentation is used, the program should be reinforced through personal intervention of a health professional. Maiman et a112 found that if the nurse playing this role was asthmatic, the program was even more successful.

In constructing an educational program presentation, several possible approaches to improve patient recall can be used. 3° 1) Information presented in the first third of a presentation is retained best. Therefore, more important information should be presented before less important material. 2) Informa- tion that is perceived by the patient as important is more accurately recalled. As a result, the physician should overtly emphasize key instructions and information. 3) The amount of information recalled by the patient can be significantly increased by using short words and sentences. 4) Organize information for the patient according to categories. 5) Statements that are specific, definite, and concrete are more accurately recalled than general statements; for example, saying, "take the medicine three times a day," may not be as good as saying, "take the medicine at 8 in the morning, 3 in the afternoon, and 8 at night." 6) Presenting medical information in a repetitive fashion can also improve recall. 7) Request that the patient repeat the physician's instructions. 8) Keep in mind that other factors, such as anxiety or depression, may affect retention or comprehension, with more anxious patients being more attentive. 9) Periodically reinforce educational messages to counteract the backsliding effects of educational efforts.

222 W. Richards

6. Self-help. Self-help management has been defined by Levin 32 as "a process whereby a lay person functions on his/her own behalf in health promotion and prevention and in disease detection and treatment at the level of the primary health resource in the health care system." Scanty research has been devoted to the benefits of self-help, but the results have been encouraging. 33 Studies have demonstrated that the "locus of control," that is, the extent to which the individual is willing to accept responsibility for managing treatment, can be influenced by a self-help educational program. 34'3s

There are several compelling reasons to implement a self-help program in office practice. One of the principal purposes of a self-help program is to improve self-esteem and increase autonomy, both of which have been associated with greater compliance with treatment. 36 A conference to share the findings and problems of 11 studies of self-management of childhood asthma was held in Los Angeles in June 1981 and results were favorable in virtually all programs.37 Other benefits of implementing such a program include greater physician satisfaction, removal of the stigma of self-fault for the condition, and integration of the reality of asthma into the life style of the individual's choice. 38 There are also potential shortcomings. Employing a self-help program in the office is time-consuming for the physician who must not only communicate extensively with the patient but, at least in the case of the younger child, with the parent as well. There is also the initial investment of time and effort to formulate such a program and, when used, the cost of educational aids such as printed material, audiovisual devices, or computers and the cost of participating allied health personnel, such as nurses. Never- theless, these programs can be conducted cost-effectively. In addition, some of the behavioral changes that ensue from a self-help program often extend into the patient's interpersonal relationships with family, friends, and school- mates. In most cases, these changes are "positive" and take the form of greater assertiveness. None of the problems described are insurmountable and, cer- tainly, the benefits of a self-help program significantly outweigh any shortcomings. Indeed, several investigators have advocated "self-help" as an important step toward independent living. 38"39

In recent years, numerous successful asthma self-help programs have been developed, but most are self-contained educational packages, many of which can be integrated into an office practice prog ram. 37 The program at the Chil- dren's Hospital of Pittsburgh is a more comprehensive office program and uses the services of a nurse educator to provide individual instruction, group dasses, telephone access for patients, and periodic monitoring of the patient's condition by phone . 23 The results of this program were reportedly beneficial inasmuch as study patients had fewer asthma attacks, less school absenteeism, and fewer emergency room visits and hospitalizations as compared with control patients. Perceived, but not documented, benefits to the family also in- cluded less anxiety about the consequences and complications of asthma, more confidence in their own ability to act and thereby reverse or prevent symptoms. The end result was a positive feehng and attitude by the families towards self-management. The cost of additional medication used in this


program and the time spent by the nurse-educator in patient instruction and telephone counseling was found to be 50% less than the direct costs related to emergency room visits and hospitalizations.

Parcel and Nader al outlined skill areas that defined asthma self-management behavior in children as follows: 1) Observation: being able to observe situations that might lead to an asthma attack; 2) discrimination: being able to notice changes that would indicate an impending or actual asthma attack; 3) decision-making: being able to make decisions to take action themselves or to get help to prevent or stop an asthma attack; 4) communication: being able to tell parents, doctors, or others what is happening to them just before and during an asthma attack; and 5) self-reliance: that is, having a strong, positive attitude about being able to do things that help with asthma self-

Table 5. Self-Help Program Instructions for Patients

Since this is your asthma, it is important that you learn as much as you can about it and learn how to help yourself.

We will help you help yourself as much as possible. Learning to take care of yourself is part of growing up. You will feel better about yourself and you will have less asthma.

WHAT YOU HAVE TO DO

1.

2.

3.

4. 5.

Become familiar with the names of medicines, what they are for and when and how to take them. We will help you by talking to you, and giving you something to read about your asthma and by answering your questions.

To help, your medicines will all be placed in a single plastic box. Taped to the lid will be a label listing the medicines.

Above all, remember to take the medicine! If you need some help in trying to find ways to remember, be sure you talk to your parents or me. We will be happy to help you.

Be certain to keep your "MEDICATION RECORD." Each time we see you in the office be prepared to answer the following questions: a. How many attacks have you had since your last visit? b. How bad were they? c. Did you miss any school because of the asthma since your last visit? d. Did the asthma interfere with your sleep or activities since your last visit? e. Are you able to tun and play without being troubled by the asthma? f. What medicines are you taking and how often? g. Did you need any shots or breathing treatments from a doctor for your asthma since

your last visit? h. Were you hospitalized since your last visit? i. Would you like to make any changes in the medicine you take?

BE CERTAIN TO BRING YOUR MEDICINE BOX AND "MEDICATION RECORD" EACH TIME YOU COME TO SEE ME.

6. Never run out of medicines. If your medicines are running low, obtain a refill from your pharmacy. If you need me to prescribe a refill, call my offices.

WE ENCOURAGE YOU TO SPEAK UP--LET US KNOW HOW YOU'RE THINKING---HOW YOU FEEL. WE WILL ALWAYS BE HAPPY TO TALK TO YOU. IF YOU ARE HAVING PROBLEMS, LET'S DISCUSS THEM.

Your Physidan

224 W. Richards

m a n a g e m e n t . These inves t iga tors also ident i f ied b e h a v i o r b y the pa r en t s tha t w o u l d be c o n s i d e r e d p r o m o f i v e of s e l f - m a n a g e m e n t in their chi ldren, w h i c h i nc luded the fo l lowing: 1) Posi t ive r e i n f o r c e m e n t of their chi ld w h e n he o r she is exhibi t ing s e l f - m a n a g e m e n t ; 2) nega t ive r e in fo rcemen t of their chi ld w h e n he or she is exhibi t ing u n n e c e s s a r y d e p e n d e n t behavior ; a n d 3) c rea t ing o p p o r t u n i t i e s for the chi ld to initiate a n d pract ice self-help m a n a g e m e n t behavior . These pr inciples s h o u l d be i n c o r p o r a t e d into the object ives of the self- he lp p r o g r a m as it is d e v e l o p e d .

The object ives of a self-help p r o g r a m can be me t in 3 ways : b y i n c o r p o r a t i n g i n fo rma t ion c o n c e r n i n g the e l e m e n t s of self-help in to the educa t iona l p r o g r a m for pa t i en t s a n d pa r e n t s (descr ibed above) ; b y p r o v i d i n g pa t i en t a n d p a r e n t specific wr i t t en d i rec t ions c o n c e r n i n g the t ypes of behav io r des i red ; a n d b y e n s u r i n g tha t the phys i c i an m a n a g i n g the pa t i en t is fully a w a r e of his or he r role in the self-help p r o g r a m . Before e m b a r k i n g on the p r o g r a m , the ra t ionale a n d a p p r o a c h to be u s e d s h o u l d be expla ined. At C H L A , w e descr ibe the

Table 6. Self-Help Program Instructions for Parents

1. Purchase a plastic refrigerator box to hold all your child's medicine. 2. Place a label on top of the box containing the following information:

MEDICINE CONDITION HOW MUCH TO TAKE AT WHAT TIME WHEN TO TAKE

IF THE MEDICINES ARE CHANGED, CHANGE THE DIRECTIONS ON THE LABEL

3. Become familiar with how your child uses the Diary form. 4. It should be your child's responsibility to remember to take his own medicines. Rather than

asking him if he took his medicine, check his diary sheet to see if he did. It is understandable if someone occasionally forgets, but if this happens too often, sit down with your child and try to find ways he can remind himself--of course, let me help also. ABOVE ALL, DON'T NAG OR OVERLY CRITICIZE. If your child does remember to take his medicines, PRAISE, PRAISE, PRAISE HIM.

4. We would like your child to feel that he is important. Some ways of doing this are: a. Let him speak up for himself when he comes to my office. In fact, I will be directing

most of my questions to him during your visits. Of course, I will also want to get your input too.

b. Encourage your child to speak up at home (but also to "know his place"). c. Ask his opinion about things; for example, whether he likes some furniture you are

considering buying. d. If you are going to buy him a shirt, select four or five possibilities, but let him choose

which of these he wants. I will always be happy to talk to you and your child about how things are going. Let me know

if I can be of help.


Table 7. Self-Help Program Instructions for Referring Physician

Re:

Dear Doctor:

I appreciate the opportunity of managing the above-named patient with you. I have initiated a self-help care program for your patient and would like to tell you how it functions.

Aim of Program: to encourage the child to accept greater responsibility for his/her care. Improved compliance should ensue.

Responsibilities: I have enclosed a copy of specific instuctions concerning self-help which were given to the patient and his/her parents. I encourage you to become familiar with them so that when you see the patient you will better understand how the program functions.

Your role: may we suggest that you:

1. Give the patient the opportunity to provide you with a progress report including medications he/she is receiving.

2. Solicit input from the patient concerning any desired changes in treatment. 3. Of course, obtain input from the parent. 4. Make any changes in treatment in collaboration with both the patient and the parents.

Sincerely,

program using the analogy of a baseball or similar team. We advise the patient that he is the "pitcher and captain of the team," the physician is the "manager," and the nurse and parents are " teammates ." The "manager" (physician) does not play the game, but works in close conjunction with the "pitcher- captain" (patient) to formulate a game plan. The patient is encouraged to help plan his own treatment, and efforts are made to "do things his way" w h e n possible. Every effort is made to make the patient and parents feel as if they have been heard. For example, if several different t reatment options are available, the patient may be requested to choose one. There must always be the unders tanding that the final decision concerning management must always reside with the physician. After the patient and parents are fully informed about the program, an expression of commitment and willingness to participate in the self-help program is obtained. This may be accomplished by using a contract, a sample of which can be found in Table 3. Parents are also urged to delegate more responsibility to the child to improve the child's self-esteem.

If a self-help program is to be successful, participants must be advised of their specific role and responsibilities, and the use of printed instructions is desirable. Toward this end, we have developed specific directions for patient, parent, and referring physician (Tables 5-7).

One of the major problems in a self-help program is getting patients to remember to take their medication. There are several approaches to helping the patient, eg, suggesting to the parents that reminders to take the medication be taped to the child's toothbrush. If the patient forgets, rather than condemn the patient, we suggest that the parents inquire how they can help the child remember to take the medication.

226 W. R i c h a r d s

The question arises as to how to determine whether a child is being compliant in taking medication. One approach is for the parent to inquire after each supposed self-administration. This could be interpreted as "nagging behavior" to the child and is likely to be resented. Accordingly, we have used a medication schedule form upon which the patient records each administration of medication (Table 8). Similar self-monitoring approaches have been found to be effective. 42 We suggest that parents check the schedule to see if, for example, their child took medication before leaving for school; this way, personal inquiry is unnecessary. The patient can also record peak flow de-

Table 8. Instructions: How to Use Medication Record

I. Write down the names of all the medicines you "take daily" on the chart. 2. Write down the names of all the medicines you should "take as needed." 3. Each time you take your medicines, make a line [] If you made 3 lines, R would mean

that you took your medicine 3 times that day. 4. Record your asthma score at the end of each day. "0" for no wheezing or cough or other

chest problems up to "3" for severe wheezing. 5. If you have a peak flow meter at home, perform a test in the morning and afternoon. If

your test was 300 in the morning and 400 in the afternoon, you would write down these results as follows:

6. Keep the Medication Record and your specific instructions in your medicine box. 7. If you had to be reminded to take your medicine, make a line for each time this

happened: []

D

S D

N A M E

MEDICINES

ASTHMA SCORE"

PEAK FLOW

REMINDED?

M E D I C A T I O N R E C O R D M O N T H ( S )

Mon Tue Wed Th Fri Sat Sun Mon Tue Wed Th Fri Sat Sun

aASTHMA SCORE 0 = None 2 = Moderate 1 = Mild 3 = Severe


terminations and general clinical progress on the same sheet. The patient is requested to bring these sheets to his or her physician at each visit.

Another method for helping the patient determine how the medications should be used is color coding the containers as described in the A.C.T. programY

In addition to the medication schedule form, several other objective methods can be used to check compliance. Serum theophylline levels have been used as a measure of compliance, but they only reflect compliance at that point in time. Other approaches that can be used to monitor compliance are pill counts, adding a riboflavin tracer to the medication and then checking the patient's urine for fluorescence, 44 and using a nebulizer Chronolog, a device that records the number of sprays from a metered-dose inhaler. 45

When a patient participates in a self-help program successfully, a system of rewards can be used to continually motivate the individual. Rather than "bribes," however, at CHLA we suggest that the rewards take the form of greater privileges granted by the parents consistent with the demonstration of more mature behavior. Conversely, the withdrawal of privileges may be considered if a patient is not appropriately motivated.

7. Management of psychosocial problems. Whenever possible, psychosocial problems in the asthmatic and his or her family should be pre- vented. The first important step is to ensure that every effort is made to contr,;! the patient's asthma. Secondly, parents should be urged to raise asthmatic children as normally as possible, improve their self- esteem (which is an important correlate of compliance), permit them to engage in activities up to their capacity, keep them in school whenever possible, and discipline them as they would a nonasthmatic child. Of course, should psychosocial problems be evident, appropriate referrals should be recommended for counseling if the patient's asthma is to be controlled. Burns 46 and Conners 47 have provided excellent reviews of the psychological management of the asthmatic child.

R e s i d e n t i a l T r e a t m e n t C e n t e r s for A s t h m a

As described above, almost all cases of asthma can be controlled. If the asthma is severe, disabling, and cannot be controlled on an outpatient basis, referral to a residential treatment center for asthmatics is warranted. This step is not to be taken lightly since separating a child from his family is a serious intervention. However, it has been shown that a significant number of these children are helped not only while in residence but, more important, after discharge. 4a In most cases that require residential care, the asthma can be medically controlled in a short period of time. However, it was found that most children requiring residential treatment at the Sunair Home for Asth- matic Children had significant psychosocial problems that contributed to the intractability of their symptoms; the management of these problems by a team of counsellors often required a prolonged period of time (average: 6 months) to resolve. Residential programs for asthmatic children also include efforts to get the children "up to grade" in school as well as to provide physical con-

228 W. Richards

ditioning programs to return the children back to the mainstream of physical activities.

In most cases, the management program in residential treatment centers is successful. Unfortunately, with the smaller number of children requiring this type of care and diminishing financial support, many residential treatment centers for asthma have closed, including the Sunair Home for Asthmatic Children. Unquestionably, there is a need for such a program not only for asthmatics, but for some diabetics and children with other chronic, disabling conditions. Although these programs are expensive to provide, it is very likely that the net cost to society is less than the expense related to hospitalizations, intensive care unit admissions, emergency room visits, and physician visits for asthma, not to mention the serious adverse effects on a child with un- controlled asthma and the child's family.

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asthma. J Pediatr 107:662-667, 1985

2. Speight ANP, Lee DA, Hey EN: Underdiagnosis and undertreatment of asthma in childhood. Br Med J 286:1253-1258, 1983

3. Sackett DL, Snow JC: The magnitude of compliance and non-compliance, in Haynes RB, Taylor WD, Sackett DL (eds): Compliance in Health Care. Baltimore, Johns Hopkins Uni- versity Press, 1979, p 14

4. Radius S, Becker M, Rosenstock I, et al: Factors influencing mother's compliance with a medication regimen for asthmatic children. J Asthma Res 15:133-149, 1978

5. Eney RD, Goldstein EO: Compliance of chronic asthmatics with oral administration of theophylline as measured by serum and salivary levels. Pediatrics 57:513-517, 1976

6. Sackett DL, Haynes RB: Compliance with Therapeutic Regimens. Baltimore, Johns Hopkins University Press, 1976

7. Barofsky I (ed): Medication Compliance: A Behavioral Management Approach. Thorofare, New Jersey, Slack, 1977

8. Proceedings of National Heart and Lung Institute: Working Conference on Health Behavior. Bethesda, Maryland, National Institute of Health, 1975

9. Baker SA, Kirscht JP, Becket MH: Understanding and improving compliance. Ann Intem Meal 100:250-268, 1984

10. Rapoff MA, Christopherson ER" Improving compliance in pediatric practice. Pediatr Clinics North Am 29:339-357, 1982

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14. Roberts CR, Imrey PB, Turner JD, et ah Reducing physician visits for colds through consumer education. JAMA 250:1986-1989, 1983

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Compl iance and Self -Help 229

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22. Clark NM, Feldman CH, Evand D, et al: The impact of health education on frequency and cost of health care use by low income children with asthma. J Allergy Clin Immuno178:108-115, 1986

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25. Van Asperen PP, Jandera E, DeNeef J, et al: Education in childhood asthma; a preliminary study of need and efficacy. Aust Paediatr J 22:49-52, 1986

26. Beck DE, Fennell RS, Yost RL, et al: Evaluation of an educational program on compliance with medication regimens in pediatric patients with renal transplants. J Pediatr 96:1094-1097, 1980

27. Dorr A: How children relate to educational materials in self-management educational programs for childhood asthma. National Institute of Allergy and Infectious Disease 2:305-326, 1981

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30. Rubin DH, LeventhalJM, Sadock RJ, etal: Educationalintervention by computerin childhood asthma: A randomized clinical trial testing the use of a new teaching intervention in childhood asthma. Pediatrics 77:1-10, 1986

31. Schraa JC, Dirks JF: Improving recall and compliance of the treatment regimen. J Asthma 19:159-162, 1982

32. Levin LS: The layperson as the primary care practitioner. Public Health Rep 91:206, 1976

33. Bartlett EE: Educational self-help approaches in childhood asthma. J Allergy Clin Immunol 72:545-554, 1983

34. Blazek B, McClellan MS: The effects of self-care interaction on locus of control in children. J Sch Health 53:554-556, 1983

35. Moffatt MEK, Pless IB: Locus of control in juvenile diabetic campers: Changes during camp and relationship to camp staff assessments. J Pediatr 103:146-150, 1983

36. Litt I1 ~, Cuskey WR, Rosenberg A: Role of self-esteem and autonomy in determining medication compliance among adolescents with juvenile rheumatoid arthritis. Pediatrics 69:15-17, 1982

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40. Lacerva SK, Kennard EA: Self-medication: Another step toward self-responsibility. Ment Hosp 11:43, 1960

41. Parcel GS, Nader PR, Tierman K: A health education program for children with asthma. Dev Behav Pediatr 1:128-143, 1980

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230 W. Richards

43. Lewis CE, Rachelefsky G, Lewis MA, et al: A randomized trial of A.C.T. (Asthma Care Training) for kids. Pediatrics 74:418-486, 1984

44. Fireman P, Cluss P, Friday G, et al: Development and validation of a riboflavin tracer for assessment of compliance in asthmatic children. J Allergy Clin Immunol 73:85 (Abstract), 1984

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compliance and self-help in an office practice

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