S e l f - m a n a g e m e n t skills for c o o p e r a t i v e care in asthma Kathleen
Conboy, MS, RN, PNA
From the Department of Pediatrics, Children's Hospital of Buffalo, Buffalo, New York
The increases in morbidity and mortality rates from asthma over the last d e c a d e may be attributable in part to d e l a y e d and ineffective action on the part of patients and parents. Providing information about this disorder and educating patients, families, and communities in asthma self-management and cooperativecare skills may help reverse these trends. Such programs are designed to complement the traditional health care system and include instruction about the pathophysiology of asthma, ways to recognize and treat symptoms, adverse drug effects, and the need for professional assistance. In this article are outlined seven exemplary asthma self-care programs available to physicians and other health care providers. (J PEDIATR1989;115:863-6)
The concept of self-care is based on the premise that patients can benefit from becoming involved in their own health care. It is defined here as those activities initiated or performed by an individual patient, family, or community in the hope of achieving, maintaining, or promoting maximum potential for good health. N E E D FOR S E L F - C A R E
PROGRAMS
According to Goldstein et al., 1 "In the past decade, there has been a renaissance of scientific interest and research into health education and programs of self-management, especially as they apply to the control of chronic, disabling diseases." Despite major advances in our understanding of the pathophysiology and pharmacotherapy of asthma, morbidity rate has not significantly decreased. In fact, the number of hospitalizations for asthma has actually increased, as has the mortality rate. 2 In a recent report, Crcer 3 cited several possible explanations for the increases in morbidity and mortality rates. He noted that surveys conducted by the National Center for Health Statistics have indicated that the number of youngsters with chronic illnesses, including asthma, doubled between 1969 and 1982--rising from 1.7% to 3.8%. This trend is almost certainly one major contributing factor. In addiReprint requests: Kathleen Conboy, RN, MS, Children's Hospital, 219 Bryant St., Lung Center, Buffalo, NY 14222 9/0/15683
tion, Creer identified the following factors that contribute to death from asthma: (1) lack of prompt and aggressive medical treatment, (2) lack of prompt and effective action by parents and children, and (3) unexplained, sudden death. The fact that both patients and parents lack information about this disorder and may therefore contribute to the number of fatalities should provide an incentive for providing them with training in asthma self-managment skills. According to Creer, 3 three processes are needed for successful self-management: (1) acquisition of skills (teaching programs), (2) performance of skills (diaries, peak flows), and (3) assessment of outcomes (by health care providers and family members). Thus we must not only apply the advances made in the treatment of asthma but also work with patients and their families to find ways to self-manage or cooperatively manage this disorder. DEFINITION
OF TERMS
The term "cooperative care-cooperative management" (as opposed to "self-management") is preferred by some because it encompasses the role of the physician, nurse, and other health care professionals in the program, whereas the term "self-management" might be interpreted to mean that patients are "on their own." Critics of the self-care concept fear that implementing self-care will (1) delay medical diagnoses, (2)promote "fad" treatments, (3) divert resources from medical care and research, and (4) diminish social responsibility for implicated etiologic factors. 4
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Table. C o m p a r i s o n of a s t h m a e d u c a t i o n p r o g r a m s Living With Asthma
Air Wise
Open Airways
Air Power
Superstuff
ACT
CALM
Groups Families Children aged Children 8 to 13 yr and and parents parents
Groups Children aged 7to 12yr and parents
One family Children aged 2to 19 yr, parents and physician
2
None
2
None
5 Hispanic version available Anywhere
Ad lib Literate
Teaching mode G r o u p s Materials for Children aged 7 to 13 yr and parents
One-on-one Children aged 9to 13 yr
No. of leaders 2 needed No. of sessions 8 Suited for Rural, target groups anyone
1
Groups Children aged 4 t o 7 yr and 8 to 14 yr and parents 2 to 3
4 to 6 Hard-to-manage groups
7 4 Low education, Anyone low SES
As desired Literate
Physician's office
Anywhere
Anywhere
Special use
Anywhere
Anywhere
Anywhere
Modified from Krutzsch CB, BellichaTC, Parker SR. Health Educ Q 1987;14:357-73. Used with permissionof John Wiley & Sons, Inc.
SES, Socioeconomicstatus.
However, the purpose of self-care is not to replace the traditional health care system, but rather to expand it to include participation by the patient and family. "Cooperative management" simply means that all those individuals concerned with promoting the health of children with asthma will work together. The goal of self-care is to teach patients and families how to make informed decisions about health care with the assistance of their health care providers. This process can be carried out in the medical office on a one-to-one basis or in group programs conducted after office hours. TYPES
OF P R O G R A M S
At the Children's Hospital of Buffalo, education of the family regarding self-care or cooperative-care skills includes individual (or group) instruction in the pathophysiology of asthma, recognition (by child and parents) of symptoms that trigger the disease and what to do if these symptoms occur, which drugs to use when, adverse drug effects, and when to call the health care provider for assistance. Many organized asthma programs have been designed and are now available (Table). Among them are several programs that can be readily obtained from the National Heart, Blood, and Lung Institute; the American Lung Association; and the Asthma and Allergy Foundation of America. Krutzsch et al.~ recently published a comprehensive review of five of these programs in Health Education Quarterly (i.e., Open Airways, 6 Living With Asthma, 7 All" Power, 8 Air Wise, 9 and Superstuffl~ As the authors aptly noted, all the programs recognize that children can take more responsibility for managing their asthma. In addition,
all the programs educate the parents and use examples of interactive skills to translate medical advice into practice in the family's daily life. In all cases, partnership with the physician and health care providers, or cooperative care, is emphasized. Each program is unique, however, so some brief highlights will be mentioned here. Two other asthma education programs, Asthma Care Training (ACT) and the Childhood Asthma: Learning to Manage (CALM), are also discussed. Open Airways. The Open Airways group program was developed at Columbia University, New York. It is written in simple language and was made for and tested among inner-city families. It also is unique in that it can be used for children 4 to 7 years of age. It is of interest that the six or seven sessions can coincide with clinical visits, which appears to increase compliance. The description of the program is available in English and in Spanish. Open Airways was tested among 310 families for a year, and the results showed that the experimental group took significantly more steps to manage their asthma than they had before the programJ 1 Although there was no decrease in the use of acute care services between the entire experimental group and the control group, health care use was significantly reduced within a subgroup of children who had been hospitalized one or more times for asthma during the preprogram year. One year before the program, the experimental group had 7.8 emergency department visits versus 3.96 the year after the program (a reduction of 3.84 visits), whereas the control group had 8.1 emergency department visits during the year before and 8.04 during the year after the program (p <0.05). The experimental subgroup also achieved an average yearly decrease of 1.0 hospitalization
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versus 0.31 fewer hospitalization in the control group; this difference between the two groups was again significant. Enrollment in the program was also associated with a decrease in emergency department visits] Ia Living With Asthma. The Living With Asthma program was developed at the National Asthma Center in Denver. It is a seven-session group program for children and parents that emphasizes improvement of family and social dynamics. Living With Asthma was evaluated among families in Colorado in a delayed, time-lag design. Long-term results were pooled for 125 families randomly assigned to experimental and control groups. Results included increased peak flow rates and decreased school absenteeism (i.e., before the program, absentee days totaled 17.5, and after the program they totaled 6.4). 12 Further, in a small group of nine families, health care costs were reduced 66% after participation in the program. 13 Air Wise. The Air Wise program, developed at the American Institutes for Research in the Behavioral Sciences, in Palo Alto, California, provides one-to-one teaching and can be carried out in many physician's office or in the hospital. It is designed for children with difficultto-manage asthma and uses a diagnostic-prescriptive approach. After interviewing and questioning the child, the teacher selects a program from among 25 objectives. The teacher then builds on what the child already knows and establishes priorities in terms of what he needs to know. After each session, the children, parents, and physician meet to discuss the results. Again, the program is one of cooperative management. In the pilot evaluation, 17 children, 9 to 13 years of age, participated, and emergency department visits were found to decrease by 3.2 visits in the experimental group versus 0.3 visit in the control group. 14 Both groups had similar rates of emergency department visits before the program. Air Power. The Air Power program is a group program also designed in Palo Alto. Children are taught the basics of asthma self-management in four l-hour sessions. The program was tested among 180 children in a health maintenance organization. 15 The frequency of independent selfmanagement behavior, as reported by the parents, increased after the program. The evaluators thought that this finding demonstrated a successful transfer of responsibility with no loss in the degree of asthma control. 15 Superstuff. Another program that has been widely disseminated is Superstuff, designed by the American Lung Association. Superstuff is a prepackaged kit containing a newsletter for parents and various teaching materials for children.* It can be used by families at home or within a *American Lung Association, Publications Department, 1740 Broadway, New York, NY 10019.
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group setting. When it was evaluated among 321 families, the experimental group missed fewer days of school after participation in the program. 16 Asthma Care Training. The Asthma Care Training (ACT) program is a group program that was developed by Dr. Charles Lewis and colleagues at the University of California at Los Angeles. In this 5-week program, children aged 8 to 12 years and their parents meet in separate groups for 45 minutes and then come together for 15 minutes to discuss their experiences. The message is that children with asthma are "in the driver's seat" (i.e., they can take charge of their disease rather than be controlled by it). ACT is also available in Spanish. In a trial of this curriculum, 76 children were randomly assigned to control or experimental groups and were followed for 1 year after completion of the program. 17 Results were as follows: (1) both groups showed equivalent increases in their knowledge about asthma and changes in their former beliefs, (2) the experimental group alone showed significant changes in self-reported compliance behaviors, and (3) those given the experimental treatment had significantly lower emergency department visits and days of hospitalization, leading to an average saving of $180 per child per year in the experimental group. Materials and information about this program are available from the Asthma and Allergy Foundation of America.* Childhood Asthma: Learning to Manage. The Childhood Asthma: Learning to Manage (CALM) program is designed to educate children with asthma, their families, and physicians about managing asthma in the home. 18 CALM was developed by IOX Assessment Associates, Los Angeles, Calif. Educational booklets are available for prereaders (aged 1 to 7), preadolescents (aged 8 to 12), and teenagers (aged 13 to 19). Specifically, the program explains how to use the peak flow meter and describes medications and their effects, asthma triggers, early warning signs, and prevention strategies. CALM shares the experience of other children with asthma to promote confidence for active living and a cooperative relationship among children, parents, and physicians. Materials include a peak flow meter, peak flow record charts, an instructional guide for children, an information guide for parents, and a special supplement for physicians. CALM is currently being evaluated and is available from the Asthma and Allergy Foundation of America.* SUMMARY The challenge to physicians and nurse practitioners is to select an educational asthma self-management program (or *Asthma andAllergyFoundationofAmerica,1717Massachusetts Ave., N.W., Suite 305, Washington, D.C. 20036.
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programs) best suited to their educational philosophy, or to design their own program and then implement it in the office setting. The ultimate goal of such programs is not only to decrease morbidity a n d mortality rates but also to encourage cooperative care of the child with a s t h m a and to improve the quality of life for families of patients with asthma. REFERENCES
1. Goldstein RA, Green LW, Parker S. Self-management of childhood asthma. J Allergy Clin Immunol 1983;72:522-5. 2. Evans R III, Mullally DI, Wilson RW, et al. National trends in morbidity and mortality of asthma in the US: prevalence, hospitalization and death from over two decades: 1965-1984. Chest 1987:91 (6 suppl):65S-74S. 3. Creer TL. Psychological factors in death from asthma: creation and critique of a myth. J Asthma 1986;23:261-9. 4. Barry PZ, Feldman C, Evans D, Duffy O, Levinson M, Wasilewski Y. Self-care programs: their role and potential. Chapel Hill: University of North Carolina Health Services Research Center, 1980. 5. Krutzsch CB, Bellicha TC, Parker SR. Making childhood asthma management education happen in the community: translating health behavioral research into local programs. Health Educ Q 1987;14:357-73. 6. National Heart, Lung, and Blood Institute. Open Airways/ Respiro Abierto: Asthma self-managment program. Bethesda, Md.: The Institute, 1984. 7. National Heart, Lung, and Blood Institute. Living With Asthma. Part 1. Manual for teaching parents the self-management of childhood asthma. Part 2. Manual for teaching children the self-management of asthma. Bethesda, Md.: The Institute, 1985. 8. National Heart, Lung, and Blood Institute. Air Power: selfmanagement of asthma through group education. Bethesda, Md: The Institute, 1984.
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9. National Heart, Lung, and Blood Institute. Air Wise: selfmanagement of asthma through individual education. Bethesda, Md.: The Institute, 1984. 10. American Lung Association. Superstuff. (Item 0317.) New York: American Lung Association. 11. Clark NM, et al. Managing better: children, parents and asthma. Patient Educ Counseling 1986;8:27-38. 1 la. Clark NM, Feldman CH, Evans D, Wasilewski Y, Levison M J, Mellins R. The impact of health education on frequency and cost of health care utilization by low income children with asthma. J Allergy Clin Immunol 1986;78:108-15. 12. Creer TL, Winder JA. Asthma. In: Holroyd KA, Creer TL, eds. Self-managment of chronic disease: handbook of clinical interventions in research medicine. New York: Academic Press, 1986. 13. Marion R, Creer T, Reynolds R. Direct and indirect costs associated with the management of childhood asthma. Ann Allergy 1985;54:1-4. 14. Wilson-Passano SR, McNabb WL. The role of patient education in the management of childhood asthma. Prey Med 1985;14:670-87. 15. Wilson SR, Bayshaw MH, Scamagas P, Hughes GW, Radabaugh BJ, McNabb WL. Develoment and evaluation of selfmanagement systems for children with asthma: self-manage and co-manage. Final report to the National Heart, Lung, and Blood Institute. Palo Alto, Calif.: American Institutes for Research, 1981. 16. Weiss JH, Hermalin J. The effectiveness of a self-teaching asthma self-management program for school-age children and their families. Prey Human Services (in press). 17. Lewis CE, Rachelefsky G, Lewis MA, et al. A randomized trial of A.C.T. (Asthma Care Training for Kids). Pediatrics 1984;74:478-86. 18. Childhood Asthma: Learning to Manage (CALM). Los Angeles, Calif.: IOX Assessment Associates, 1987.