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Am. J. Respir. Crit. Care Med., Volume 158, Number 6, December 1998, 2006-2015

AMERICAN THORACIC SOCIETY
Research Priorities in Respiratory Nursing

THIS OFFICIAL STATEMENT OF THE AMERICAN THORACIC SOCIETY WAS ADOPTED BY THE ATS BOARD OF DIRECTORS, JULY 1998

In 1996 the Nursing Assembly, American Thoracic Society (ATS), created an Ad Hoc Committee to revise the document Research Priorities in Respiratory Nursing (Am. Rev. Respir. Dis. 1990;142:1459-1464), which was written by a prior Ad Hoc Committee of the Section on Nursing, now reorganized as the Nursing Assembly of the ATS. The Committee's goal was to update the earlier document to reflect the current health care environment and prevailing societal needs as they impact respiratory nursing practice. The Ad Hoc Committee was composed of expert nurse investigators and clinicians representing research and practice in pediatric and adult populations from chronic and critical care perspectives.

As a first step, the Committee surveyed ATS Nursing Assembly membership to identify priorities for research in respiratory nursing. In addition, the ATS paper Future Directions for Research on Diseases of the Lung (Am. J. Respir. Crit. Care Med. 1995;152:1713-1735) was used as a framework to guide the identification of areas of interest and targeted diseases. These targeted diseases included: (1) asthma; (2) chronic obstructive lung disease and cystic fibrosis, including transplantation; (3) lung cancer; (4) infections, especially HIV and tuberculosis; (5) obstructive sleep apnea; and (6) bronchopulmonary dysplasia. This ATS paper, membership survey, and a review of the literature served as the resources for development of the following recommendations.

As members of an interdisciplinary society whose aims include the reduction of lung disease and promotion of lung health, the Nursing Assembly is committed to research endeavors that foster the aims of the ATS. The purpose of the following document is to articulate research priorities in respiratory nursing to a variety of audiences. These audiences include the ATS community of clinicans and scientists, constituent American Lung Association organizations, private and public funding agencies, academic institutions responsible for educating clinicians and researchers, legislative bodies, and the public. Listed below are research priorities in respiratory nursing identified by the Committee:

  1. Health Promotion and Disease Prevention
  2. Therapeutic Strategies: Acute Care

Weaning from Mechanical Ventilation

High-technology Home Care

Oxygen Delivery Systems

End-of-life Decision Making

  1. Therapeutic Strategies: Chronic Care

Asthma

COPD

Lung Cancer

Lung Transplantation

Sleep Apnea

Tuberculosis/HIV Infection

Bronchopulmonary Dysplasia

Cystic Fibrosis

  1. Pulmonary Rehabilitation
  2. Cost-related Research/Health Care Delivery

    HEALTH PROMOTION AND DISEASE PREVENTION

Tobacco Use

Tobacco use, a major risk factor for emphysema, chronic bronchitis, and lung cancer, is the single most preventable cause of morbidity and mortality. Although the prevalence of smoking has declined dramatically since 1965, it is estimated that 25% of U.S. adults continue to smoke cigarettes. Prevalence rates are disproportionately higher among socioeconomically disadvantaged groups, blue-collar workers, and minorities. Most alarming are the substantial increases in smoking among American adolescents. As of 1996, 30% of 15-16-yr-old adolescents and 34% of those aged 17-18 reported smoking a cigarette in the last 30 d. Research aimed at the development of effective youth prevention and adolescent cessation programs must be conducted. Clinician, school, and community-based interventions to reduce adolescent smoking prevalence must be designed and tested. The impact of legislative policies at the federal, state, and local level that reduce consumption (e.g., taxation, vending machine restriction, underage purchases, restriction of promotional items, etc.) must be evaluated. Formulation and investigation of cessation interventions for parents are also necessary, especially for mothers who smoke and thereby increase environmental tobacco exposure and place their children at risk for adoption of the behavior. Among adult cessation initiatives, research should be undertaken that examines effective treatment approaches among socioeconomically disadvantaged smokers and other special populations that do not have access to health-promoting care. While nicotine replacement improves treatment efficacy, few studies have examined ways to increase access to this costly therapy, especially among the socioeconomically disadvantaged smoker. Among smokers with lung disease, studies of cessation interventions are limited. The cost-effectiveness of cessation interventions provided by clinicians, i.e., physician, nurse, respiratory therapist, either singularly or in combination, has yet to be tested in hospital or outpatient settings. Finally, the World Health Organization estimates that one-third of the global population aged 15 and over smokes. Efforts to curb the worldwide spread of tobacco use must be developed and tested by groups of researchers representing international perspectives.

Summary and Recommendations

  1. Research aimed at preventing tobacco use among children and adolescents is a major priority. Cessation programs for adolescents must be designed and tested. Policy-related studies that examine mechanisms to decrease youth access to tobacco are needed.
  2. Effective cessation methods have yet to be adequately tested among socioeconomically disadvantaged, underserved, and culturally diverse smokers. Studies of clinician-based interventions, especially in combination with nicotine replacement therapy, among patients with lung disease are needed.
  3. Research to evaluate programs designed to restrict the international spread of tobacco are necessary and especially timely due to the rapid increase in smoking in underdeveloped countries.

    References

2. Fiore, M. C., W. C. Bailey, and S. J. Cohen. 1996. Smoking Cessation. Clinical Practice Guideline No. 18. U.S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, Rockville, MD. AHCPR Publication No. 96-0692.

3. U.S. Department of Health and Human Services. 1995. Healthy People 2000: Midcourse Review and 1995 Revisions. U.S. Department of Health and Human Services, Public Health Service, Rockville, MD.




Prevention of Pulmonary Complications

Pulmonary complications are a major problem associated with increased morbidity and mortality, utilization of resources, and health care costs. Several areas remain unresolved in the diagnosis, treatment, and outcomes of patients who develop a pulmonary complication. The majority of work in pulmonary complications has been done with adult postoperative patients (primarily abdominal surgery), although pulmonary complications occur in association with procedures or disease processes in a wider variety of populations and settings (e.g., children and those with lung cancer or trauma). While previous research has focused on the pathophysiology of pulmonary complications (specifically atelectasis, adult respiratory distress syndrome [ARDS], and nosocomial pneumonia), studies are not needed to guide appropriate choice and implementation of interventions. Well-designed clinical trials are needed to identify the most at-risk patients, effective interventions, intensity of treatment, and benefits and burdens of differing interventions. Nosocomial pneumonia and specifically ventilator-associated pneumonia (VAP) have received widespread attention in the past few years. Additional work is needed to test and validate risk assessment tools and determine outcomes of implementation of various guidelines for prevention and treatment of these complications. Interdisciplinary research efforts among nursing, respiratory care, and medicine would enhance our understanding of pulmonary complications and the utilization of those findings in clinical practice.

Summary and Recommendations

  1. Studies are needed to identify risk factors for atelectasis, ARDS, and pneumonia in high-risk populations (e.g., immunocompromised, neurologic dysfunction, trauma, elderly, pediatric, and neonatal disease). Studies are also needed to identify methods of minimizing the risk of nosocomial pneumonia in patients who receive tube feedings, have cuffed tubes, or are at risk for aspiration during feeding.
  2. Given the trend of outpatient surgery, early discharge, and provision of high technological care in the home, studies are needed to identify optimum ways to assist caregivers to prevent and manage pulmonary complications in outpatient/home settings.
  3. Studies are needed to identify how to prevent and treat postoperative pulmonary complications in acute care settings where time for patient education is limited and early discharge is common. Areas for investigation include ways to prevent complications, ensure appropriate pain management, and convey essential information in a time- and staff-limited environment.
  4. Studies are needed to describe outcomes of current protocols for management of community-acquired pneumonia, with emphasis on consequences for the patient (symptoms, health-related quality of life), caregiver burden, and health care system (resource utilization).

    References

4. American Thoracic Society. 1995. Hospital-acquired pneumonia in adults: diagnosis, assessment of severity, initial antimicrobial therapy, and preventive strategies: a consensus statement. Am. J. Respir. Crit. Care Med. 153: 1711-1725 [Medline].

5. Bassin, A. S., and M. S. Niederman. 1995. Prevention of ventilator-associated pneumonia: an attainable goal? Clin. Chest Med. 16: 195-208 [Medline].

6. Brooks-Brunn, J. A.. 1995. Postoperative atelectasis and pneumonia. Heart Lung 24: 94-115 [Medline].

7. Center for Disease Control and Prevention. 1997. Guidelines for prevention of nosocomial pneumonia. M.M.W.R. 46: 1-79 . [Medline]

8. Craven, D. E., and K. A. Steger. 1996. Nosocomial pneumonia in mechanically ventilated adult patients: epidemiology and prevention in 1996.  Semin. Respir. Infect. 11: 32-53 [Medline].

9. Niederman, M. S., J. B. Bass Jr., and G. D. Campbell. 1993. Guidelines for the initial management of adults with community-acquired pneumonia: diagnosis, assessment of severity and initial antimicrobial therapy. Am. J. Respir. Crit. Care Med. 148: 1418-1426 .

10. Thomas, J. A., and J. M. McIntosh. 1994. Are incentive spirometry, intermittent positive pressure breathing, and deep breathing exercises effective in the prevention of postoperative pulmonary complications after upper abdominal surgery: a systematic overview and meta-analysis. Phys. Ther. 74: 3-16 [Abstract/Free Full Text].




    THERAPEUTIC STRATEGIES: ACUTE CARE

Weaning from Long-term Mechanical Ventilation

While mechanical ventilation can be discontinued without difficulty for the majority of patients, as many as 20% or higher of ventilated patients require long-term (> 7 d) support. Weaning such patients presents a major challenge. Individuals who remain ventilator-dependent for prolonged periods of time typically have multiple problems, including limited cardiopulmonary reserve, advanced age, nutritional depletion, neurologic deficits, or other long-standing chronic health problems that limit the ability to breathe spontaneously.

Because failure to wean is costly from a human and economic perspective, substantial efforts have been directed toward identifying ways to assess ability to wean, speed the weaning process, and provide more cost-effective care. There has been limited testing to identify optimal methods to deal with high anxiety levels during weaning. Further, there is growing recognition that weaning success is heavily dependent on who manages weaning and the environment in which weaning occurs. A growing body of literature suggests that patients who require long-term mechanical ventilation wean best if their care is managed by a dedicated team of physicians, nurses, and respiratory therapists and takes place in a site that specializes in such care, i.e., regional weaning facility, subacute care facility, or a chronic ventilator unit in an acute care hospital. However, no studies have examined the efficacy of this approach in a randomized trial. Finally, it is important to remember that weaning is both an art and a science. Experienced clinicians cite elusive predictors as signals that weaning can begin. While subjective in nature, there is merit in attempting to delineate such predictors and test their use in practice.

Summary and Recommendations

  1. Studies are needed that test ways to facilitate the weaning process, with emphasis on patient factors, ventilator mode, and clinician decision making.
  2. Studies are needed to identify subsets of patients unlikely to wean due to physiologic or psychologic factors (e.g., acute left ventricular dysfunction, nutritional status, or high anxiety level). Specialized techniques may be beneficial in patients with high anxiety levels (e.g., relaxation training, music therapy), and should receive broader testing.
  3. Studies are needed to test cost-effective strategies that can be implemented by health team members to speed weaning, e.g., dedicated assessment teams, protocolized weaning, or transfer to units or facilities that specialize in this care.
  4. Given many references to the "art" of weaning, studies are needed to describe subtle predictors of weaning readiness.

    References

11. Ely, E. W., A. M. Baker, D. P. Dunagan, H. L. Burke, A. C. Smith, P. T. Kelly, M. M. Johnson, R. W. Browder, D. L. Bowton, and E. F. Haponik. 1996. Effect on the duration of mechanical ventilation of identifying patients capable of breathing spontaneously. N. Engl. J. Med. 335: 1864-1869 [Abstract/Free Full Text].

12. Esteban, A., I. Alia, and F. Gordo. 1996. Weaning: what the recent studies have shown us. Clin. Pulm. Med. 3: 91-100 .

13. Knebel, A., M. E. Shekleton, S. Burns, J. M. Clochesy, and S. K. Hanneman. 1998. Weaning from mechanical ventilatory support: refinement of a model. Am. J. Crit. Care 7: 149-152 .

14. Lemaire, F., J. L. Teboul, L. Cinotti, G. Giotto, F. Abrouk, G. Steg, I. Macquin-Mavier, and W. M. Zapol. 1988. Acute left ventricular dysfunction during unsuccessful weaning from mechanical ventilation. Anesthesiology 69: 171-179 [Medline].

15. Scheinhom, D. J., D. C. Chao, M. Stearn-Hassenpflug, L. D. LaBree, and D. J. Heltsley. 1997. Post-ICU mechanical ventilation: treatment of 1,123 patients at a regional weaning center. Chest 111: 1654-1659 [Abstract/Free Full Text].

16. Yang, K. L., and M. J. Tobin. 1991. A prospective study of indexes predicting the outcome of trials of weaning from mechanical ventilation. N. Engl. J. Med. 1445-1450.




High-technology Home Care

Several factors have led to increased use of "high-tech" care in the home. These factors include the increased numbers of children and adults who are dependent on technologically sophisticated devices for survival, the availability of more user-friendly devices, and the development of a home care infrastructure able to provide such care. Additional important factors include the improved quality of life that can result when care is delivered at home. Homes where high-tech care is provided can resemble a "mini intensive care unit," complete with monitors, infusion pumps, nebulizers, mechanical ventilators, and other devices needed to manage complex health problems. Under these circumstances, caregiving can be physically, emotionally, and financially taxing. Little is known about how families cope with the demands of high-tech home care or the economic burden of providing this care. Care provided in the home has repeatedly been shown to be less expensive when direct costs are considered. However, it is likely that substantial "cost-shifting" occurs, resulting in caregivers assuming additional burdens.

Summary and Recommendations

  1. Studies are needed to assess the impact on caregivers of providing high-tech home care.
  2. Studies are needed to test cost-effective strategies for providing caregiver support. Strategies will need to focus on voluntary efforts, given attempts to decrease health care costs. Thus, emphasis should be given to identifying methods to increase networking, community support, and contributions from voluntary agencies.

    References

17. Leonard, B., J. D. Brust, and J. J. Sapienza. 1992. Financial and time costs to parents of severely disabled children. Public Health Rep. 107: 302-312 [Medline].

18. Sevick, M. A., and D. D. Bradham. 1997. Economic value of caregiver effort in maintaining long-term ventilator-assisted individuals at home. Heart Lung 26: 148-157 [Medline].

19. Smith, C. E., L. S. Mayer, C. Parkhurst, S. B. Perkins, and S. K. Pingleton. 1991. Adaptation in families with a member requiring mechanical ventilation at home. Heart Lung 20: 349-356 [Medline].




Oxygen Delivery Systems

Long-term oxygen therapy facilitates the goals of pulmonary rehabilitation by allowing patients with exercise-induced hypoxemia to be mobile without experiencing severe desaturation. When selecting a portable delivery system, oxygen-conserving devices are an increasingly popular choice. A number of systems are currently available, including reservoir cannula, demand delivery devices, and transtracheal oxygen deliver. However, with the exception of transtracheal oxygen delivery, there has been limited testing of oxygen-conserving devices and their effectiveness in providing adequate oxygenation during exercise. A concern is the recent decrease in reimbursement for home oxygen therapy, which may impact availability of portable devices. Oxygen-conserving devices are not widely used in pediatrics. Reliable oxygen delivery is especially challenging for infants and small children due to small nasal passages, refusal to keep a cannula in place, and accidental dislodgment, especially at night.

Summary and Recommendations

  1. Studies are needed to compare the efficacy and effectiveness of the various types of oxygen-conserving devices. Such studies should compare these devices in regard to ability to prevent desaturation during exercise, cost-effectiveness, and ability to promote adherence with long-term oxygen therapy.
  2. Studies are needed to determine the optimum method for determining oxygen flow rate(s) during exercise, e.g., timed walk, self-paced walk, activities of daily living (ADL) simulation, when patients use oxygen-conserving systems, and the standard nasal cannula.
  3. Innovative means of addressing delivery difficulties in pediatric populations require development and testing.

    References

20. Braun, S. R., G. Spratt, G. C. Scott, and M. Ellersieck. 1992. Comparison of six oxygen delivery systems for COPD patients at rest and during exercise. Chest 102: 694-698 [Abstract/Free Full Text].

21. Hagarty, E. M., M. S. Skorodin, W. E. Langbein, C. I. Hultman, J. A. Jessen, and J. A. Maki. 1997. Comparison of three oxygen delivery systems during exercise in hypoxemic patients with chronic obstructive pulmonary disease. Am. J. Respir. Crit. Care Med. 155: 893-898 [Abstract].

22. Hoffman, L. A.. 1994. Novel strategies for delivering oxygen: reservoir cannula, demand flow and transtracheal oxygen administration. Respir. Care 39: 363-376 [Medline].




End-of-life Decision Making

Health care professionals have an obligation to assist patients to make informed decisions about care received at the end of life. Although desirable, there is ample evidence that patients and health care professionals infrequently discuss such issues before acute decompensation occurs. From a survey of 105 patients with chronic obstructive pulmonary disease (COPD) Heffner and colleagues reported that although most (99%) individuals wished discussions about this topic, few (19%) had such discussions. Further, only 15% discussed life support options with their physician and only 14% believed their wishes were understood. Some of the hesitancy to initiate such discussions may relate to lack of clarity regarding at what age, stage of the disease, or point in the patient/provider relationship to initiate such dialogue. There is also concern regarding patient reaction once such discussions are initiated (i.e., will the response be fear and hopelessness or decreased anxiety) and the stability of patient preferences over time.

Once preferences are determined, there is controversy regarding the congruency of patient preferences and the care provided. With increasing incidence of decisions to limit life-sustaining therapy, evidence suggests that behaviors of health care professionals may unknowingly increase burden rather than provide support. Also, there are suggestions that nurses are misinformed about how to effectively provide comfort at the end of life, such as the use of morphine to relieve dyspnea. There is also limited guidance regarding how to manage practice dilemmas that can result from divergent goals.

Summary and Recommendations

  1. Studies are needed to clarify stability of patient preferences over time and patient preferences about timing of these discussions.
  2. Studies are needed to test strategies that assure more open and frequent discussion of patient preferences regarding end-of-life issues and methods to assure consideration of these preferences during acute decompensation.
  3. Studies are needed to identify actions that support families during decision making about withdrawing or withholding treatment and actions that increase burden. Once identified, research is needed to test outcomes of their use.
  4. Studies are needed to test ways of ensuring comfort at the end of life, e.g., specialized care teams and intervention/education to promote appropriate use of narcotics and sedatives to eliminate pain and discomfort.
  5. Studies are needed to describe and evaluate systems and organizations that enhance or create environments that foster quality end-of-life care.

    References

23. Heffner, J. E., B. Fahy, L. Hilling, and C. Barbieri. 1996. Attitudes regarding advance directives among patients in pulmonary rehabilitation. Am. J. Respir. Crit. Care Med. 154: 1735-1740 [Abstract].

24. Prendergast, T. J., and J. M. Luce. 1997. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am. J. Respir. Crit. Care Med. 155: 15-20 [Abstract].

25. Solomon, M. Z., L. O'Donnell, and B. Jennings. 1993. Decisions near the end of life: professional views on life-sustaining treatments. Am. J. Public Health 83: 14-23 [Abstract/Free Full Text].

26. SUPPORT Trial. 1995. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments. J.A.M.A. 274: 1591-1598 [Abstract/Free Full Text].

27. Tilden, V. P., S. W. Tolle, M. J. Garland, and C. A. Nelson. 1995. Decisions about life-sustaining treatment: impact of physicians' behaviors on the family. Arch. Intern. Med. 155: 633-638 [Abstract/Free Full Text].

28. Campbell, M. L., and R. R. Frank. 1997. Experience with an end-of-life practice at a university hospital. Crit. Care Med. 25: 197-202 [Medline].




    THERAPEUTIC STRATEGIES: CHRONIC CARE

Asthma

Current recommendations for the treatment of asthma, which affects 14-15 million people in the United States, include long-term inhaled anti-inflammatory medications to control the disease and inhaled beta -agonist bronchodilator therapy for quick relief of bronchospasm. Long-acting bronchodilators may be added for patients with more severe asthma. Since the disease is complex and may be difficult to manage, active participation of the patient in both the daily self-management of the disease as well as the treatment of acute episodes is critical. Asthma exacerbations result in approximately 5,000 deaths per year and are largely preventable. Death rates are higher among minorities, especially those who live in inner-city housing. Reduction or complete ablation of asthma symptoms is a goal of therapy. Ethnic and cultural differences in the perception of symptoms that correlate with increasing airflow obstruction are unknown. The role of peak flow monitoring in self-management of asthma is unclear but may be most useful to patients with moderate or severe persistent asthma. Recent studies show that routine use of peak flow monitoring may be useful, but it is not the only way to guide patients in self-management of exacerbations. Peak flow monitoring is useful in adults but is not reliable in young children. Morning peak flow measurement is the most useful parameter to follow over time in patients with persistent asthma, but it is not known how frequently to measure peak flow when asthma is stable. Current asthma management recommendations require active involvement of the primary clinician. Yet little is known about how to deliver educational messages effectively and efficiently in this setting. Adherence is increased when treatment and educational approaches are individualized. There may be gender, ethnic, and cultural differences in how patients respond to educational messages and determine their relevance. Once discovered, these differences could be used to design effective motivational strategies.

Summary and Recommendations

  1. Research is needed to determine how to teach patients to react appropriately when symptoms occur and to identify people who are unable to perceive worsening of asthma. Ethnic and cultural differences must be examined.
  2. Potential factors that contribute to asthma, such as poverty, environmental exposure, and access to medical care, need to be explored.
  3. Strategies must be developed to assess respiratory distress in children and to assist parents to respond appropriately.
  4. Critical elements of asthma patient education that are directly linked to positive outcomes need to be identified and tested. Techniques for delivering education in the context of providing ambulatory medical care need to be developed and tested.
  5. Specific interventions for increasing adherence, particularly to inhaled anti-inflammatory medications, need to be developed and tested.
  6. Critical factors that make adherence relevant and possible for patients must be identified and used to create new models of patient education.
  7. The role of peak flow monitoring in improving adherence to therapy and self-management of asthma needs further clarification. Determining the required frequency of peak flow measurements and the interaction of monitoring with treatment adherence would provide direction for asthma self-management recommendations. The role of peak flow monitoring has not been studied in elderly patients.

    References

29. Cote, J., A. Cartier, R. Robichaud, H. Boutin, J. L. Malo, M. Rouleau, A. Fillion, M. Lavallee, M. Krusky, and L. P. Boulet. 1997. Influence on asthma morbidity of asthma education programs based on self-management plans following treatment optimization. Am. J. Respir. Crit. Care Med. 155: 1509-1514 [Abstract].

30. Jones, K. P., M. A. Mullee, M. Middleton, E. Chapman, and S. T. Holgate. 1995. Peak flow based asthma self-management: a randomised controlled study in general practice. British Thoracic Society Research Committee. Thorax 50: 851-857 [Abstract/Free Full Text].

31. National Heart, Lung, and Blood Institute. 1997. National Asthma Education and Prevention Program: Expert Panel Report 2. Guidelines for the Diagnosis and Management of Asthma. National Institutes of Health, Bethesda, MD. Publication No. 97-4051.

32. Reddel, H. K., C. M. Salome, J. K. Peat, and A. J. Woolcock. 1995. Which index of peak expiratory flow is most useful in the management of stable asthma? Am. J. Respir. Crit. Care Med. 151: 1320-1325 [Abstract].

33. Turner, M. O., D. Taylor, R. Bennett, and J. M. Fitzgerald. 1998. A randomized trial comparing peak expiratory flow and symptom self-management plans for patients with asthma attending a primary care clinic. Am. J. Respir. Crit. Care Med. 157: 540-546 [Abstract/Free Full Text].




COPD

COPD ranks as the fifth leading cause of death in the United States. As COPD progresses, there is significant loss of functional ability and quality of life, accompanied by anxiety, fear, depression, and fatigue. Pulmonary rehabilitation programs enable patients with COPD to better manage their symptoms and increase mobility, but these benefits may not be sustained. There is evidence that dyspnea, the most common symptom in persons with COPD, can be decreased and exercise tolerance increased by exercise training, desensitization, and coaching of patients to control symptoms, but the impact of these interventions on ability to carry out ADL is not well defined. Nearly three-fourths of patients with COPD experience weight loss. It is not clear if weight loss is a cause of mortality or a marker of disease severity. Lung volume reduction surgery has been shown to increase functional ability and decrease symptoms in selected patients with COPD but the duration of these benefits and criteria that identify those who benefit most from this surgery have not yet been identified.

Summary and Recommendations

  1. Strategies that promote long-term adherence to exercise regimens in patients with COPD need to be identified. Studies are also needed to identify the most effective application of the various components of pulmonary rehabilitation and those components most responsible for improvement in quality of life.
  2. Several interventions, e.g., exercise training, desensitization, and coaching of patients to control symptoms, have been shown to decrease dyspnea and increase exercise tolerance. Further research is needed to identify how to best use these strategies to increase functional ability, with emphasis on ADLs.
  3. Individualized interventions that increase appetite and intake of nutrients, reduce morbidity, and delay mortality need testing.
  4. There has been limited inclusion of women, minorities, and elders in studies of patients with COPD. Clinical trials should be designed to ensure inclusion of these groups and to identify their unique needs.

    References

34. AACP/AACVPR Pulmonary Rehabilitation Guidelines Panel. 1997. Pulmonary Rehabilitation: joint AACP/AACVPR evidence-based guidelines. Chest 112: 1363-1396 [Free Full Text].

35. Carrieri-Kohlman, V., J. M. Gormley, M. D. Douglas, S. M. Paul, and M. S. Stulbarg. 1996. Exercise training decreases dyspnea and the distress and anxiety associated with it. Chest 110: 1526-1535 [Abstract/Free Full Text].

36. Gray-Donald, K., L. Gibbons, S. H. Shapiro, P. T. Macklem, and J. G. Martin. 1996. Nutritional status and mortality in chronic obstructive pulmonary disease. Am. J. Respir. Crit. Care Med. 153: 961-966 [Abstract].

37. Weaver, T. E., T. S. Richmond, and G. L. Narsavage. 1997. An explanatory model of functional status in chronic obstructive pulmonary disease. Nurs. Res. 46: 26-31 [Medline].




Lung Cancer

In 1998 lung cancer was estimated to account for 15% of new cancer cases in the United States for men and 13% for women, and predicted to be the leading cause of cancer-related deaths for both genders. There are no data to indicate that the prevalence of lung cancer cases and deaths will decrease in the near future. As with other chronic diseases, implications for research from the medical, surgical, and palliative care aspects are numerous. Many of the areas for research are encompassed throughout this document and include health promotion and disease prevention (smoking cessation), management of dyspnea, prevention of complications from surgery, health-related quality of life, functional status, and end-of-life decision making.

Summary and Recommendations

  1. Continued research is needed to identify methods to promote smoking cessation as a preventive measure in lung cancer, as well as cessation of smoking after the diagnosis of lung cancer.
  2. Specific interventions for decreasing dyspnea and other disease and treatment-related symptoms require further refinement. The specific role of pulmonary rehabilitation in symptom management, functional status, and health-related quality of life in this population needs further study.
  3. Specific interventions to assist patients and families in forming a partnership with the health care team to make informed decisions regarding medical, surgical, and palliative therapies should be evaluated.

    References

38. American Cancer Society. 1998. Cancer statistics 1998.  CA Cancer J. Clin. 44: 14 .

39. Dresler, C. M., M. Bailey, C. R. Roper, A. Patterson, and J. Cooper. 1996. Smoking cessation and lung cancer resection. Chest 110: 1199-1202 [Abstract/Free Full Text].

40. Hollen, P. J., and R. J. Gralla. 1996. Comparison of instruments for measuring quality of life in patients with lung cancer. Semin. Oncol. 23(Suppl. 5):31-40.

41. Sarna, L. S., and R. McCorkle. 1996. Burden of care and lung cancer. Ca. Practice 4: 245-251 .

42. Wewers, M. E., L. Jenkins, and T. Mignery. 1997. A nurse-managed smoking cessation intervention during diagnostic testing from lung cancer. Oncol. Nurs. Forum 24: 1419-1422 [Medline].




Lung Transplantation

Lung transplantation for end-stage lung disease has become increasingly available. Both single and bilateral lung transplants are performed for patients with severe end-stage lung disease and limited functional ability who have exhausted medical therapy. While awaiting transplant, it is important to assist patients to maintain functional status and provide emotional support. Each transplant center tends to have its own program for education, rehabilitation, monitoring, and support, and the best approach is not known. After transplant, issues relate to preventing infection, detecting and treating organ rejection, and rehabilitation. Early detection of infection or rejection is improved by daily spirometric monitoring. Despite the importance of this strategy, there has been little investigation of reporting behavior. Newer devices that directly transmit spirometric data by telephone may promote earlier detection of change. Patients must cope with the consequences of long-term drug therapy with steroids and immunosuppressives, which places them at risk for complications. Questions about the best ways of managing, or optimally preventing, such complications and associated symptoms have not been answered. Issues related to adherence to the medical regimen remain.

Summary and Recommendations

  1. Further study is needed to identify strategies that promote early detection of change and appropriate reporting of spirometric data for lung transplant recipients.
  2. Studies are needed to identify optimum ways to provide education, rehabilitation, monitoring, and support prior to and following lung transplantation.
  3. Factors that predict, promote, and maintain optimal quality of life in lung transplant recipients are not known. Ways of managing, or optimally preventing, complications of long-term steroid and immunosuppressive therapy need to be addressed.

    References

43. Finkelstein, S. M., M. Snyder, C. Edin-Stibbe, L. Chlan, B. Prasad, P. Dutta, B. Lindgren, C. Wielinski, and M. I. Hertz. 1996. Monitoring progress after lung transplantation from home-patient adherence. J. Med. Eng. Technol. 20: 203-210 [Medline].

44. Gross, C. R., K. Savik, R. M. Bolman, and M. L. Hertz. 1995. Long-term health status and quality of life outcomes of lung transplant recipients. Chest 108: 1587-1593 [Abstract/Free Full Text].

45. Lynch, J. P., and E. P. Trulock. 1996. Lung transplantation in chronic airflow limitation. Med. Clin. North Am. 80: 657-670 [Medline].

46. Squier, H. C., A. L. Ries, R. M. Kaplan, L. M. Prewitt, C. M. Smith, J. M. Kriett, and S. W. Jamieson. 1995. Quality of well-being predicts survival in lung transplantation candidates. Am. J. Respir. Crit. Care Med. 152: 2032-2036 [Abstract].




Sleep Apnea

Obstructive sleep apnea (OSA) is thought to occur in approximately 2% of women and 4% of men. The typical patient is between 30 and 60 yr of age. Sleep apnea also occurs in children, usually as a consequence of long periods of high inspiratory resistance causing obstructive hypoventilation. Although there is evidence to suggest that cardiovascular morbidity and mortality are increased in patients with OSA, with the exception of motor vehicle operation, there is little empirical evidence of the impact of OSA on functional status or quality of life. The effectiveness of continuous positive airway pressure (CPAP) is well documented, but few studies have examined outcomes in patients treated with surgery or oral appliances. Approximately one-half of patients do not use CPAP as prescribed, and determinants of nonadherence have yet to be delineated.

The majority of research in sleep apnea has been in middle-aged populations. Very little is known about OSA in the elderly or among children. Effective strategies for educating patients and providers about signs and symptoms of sleep disorders in adults and children have yet to be determined. Little is known about ways to assist patients and families in coping with OSA.

Summary and Recommendations

  1. Studies are needed to identify how to promote adherence to treatment with CPAP and oral appliances, including the role of patient preferences in successful treatment. The cost-effectiveness of these therapies should also be evaluated.
  2. Studies are needed to document the impact of pediatric sleep apnea on school, neurobehavioral, and functional outcomes, and to determine the therapy that most effectively manages these problems.
  3. The impact of OSA on functional status and quality of life in patients who do not adhere to treatment should be studied. Effective strategies for coping with this disorder, both from an individual and partner perspective, should be examined.

    References

47. American Thoracic Society/American Sleep Disorders Association. 1998. Statement on health outcomes research in sleep apnea. Am. J. Respir. Crit. Care Med. 157: 335-341 [Free Full Text].

48. Young, T., M. Palta, J. Dempsey, J. Skatrud, S. Weber, and S. Badr. 1993. The occurrence of sleep disordered breathing among middle aged adults. N. Engl. J. Med. 328: 1230-1235 [Abstract/Free Full Text].




Tuberculosis

Tuberculosis (TB) remains a major world health problem and accounts for 26% of preventable adult deaths in the developing world despite effective treatment. After years of steady decline, overall TB rates in the United States increased between 1985 and 1993. Reasons included a reduction in funding for TB control efforts, poverty, homelessness, drug addiction, immigration, and HIV infection. With increased funding, TB rates in the United States have again declined, except among the foreign-born and children. Also, rates in developing countries continue to be alarming, primarily due to lack of funding and political will to effect change. Strains of Mycobacterium tuberculosis that are resistant to currently available drugs are becoming more common.

The Centers of Disease Control and Prevention recommends that treatment be administered by directly observed therapy (DOT) programs for all patients with TB, because it is not possible to accurately predict who will be adherent. Thus far, DOT has generally not been applied in developing countries. TB control programs serving diverse populations with high rates of treatment completion typically employ indigenous health care workers and use culturally appropriate patient education materials. It is not clear, however, if such TB control programs can successfully be incorporated into community-based health care systems.

Summary and Recommendations

  1. Research is needed to understand risk factors associated with drug resistance, such as HIV infection, sociodemographic status, prior treatment history, and the quality of TB control programs.
  2. Research is needed to determine the characteristics of effective TB control programs and whether they can be integrated into community-based health care systems.
  3. Culturally appropriate educational materials should be evaluated to determine their effectiveness.
  4. Research is necessary to determine how to identify patients who will be non-adherent, how to prevent their loss to follow-up, and how to manage their DOT programs. Research is needed to determine the most effective way to apply DOT in developing countries.

    References

49. Burman, W. J., C. B. Dalton, D. L. Cohn, J. R. G. Bulter, and R. R. Reves. 1997. A cost-effectiveness analysis of directly observed therapy vs self-administered therapy for treatment of tuberculosis. Chest 112: 63-70 [Abstract/Free Full Text].

50. Cohn, D. L., R. Bustreo, and R. Raviglione. 1997. Drug-resistant tuberculosis: review of the worldwide situation and the WHO/IUATLD global surveillance project. Clin. Infect. Dis. 24: S121-S130 .

51. Sumartojo, E.. 1993. When tuberculosis treatment fails: a social behavioral account of patient adherence. Am. Rev. Respir. Dis. 147: 1311-1320 [Medline].




HIV

For the first time since the beginning of the AIDS epidemic, the number of persons living with AIDS exceeded the number who died. Rates of AIDS increased among non-Hispanic blacks and Hispanics, women, and persons exposed to HIV from injection drug use and heterosexual contact with an infected partner. Prevalence rates increased among the 13- to 29-yr-old population, particularly in smaller metropolitan and rural areas in the South and Midwest.

While Pneumocystis carinii pneumonia (PCP) continues to be a major problem, the most common serious lower respiratory tract infection is now bacterial pneumonia. Cigarette smoking has been cited as a significant risk factor for the development of acute bronchitis and bacterial infection. Effective ways to assist smokers with HIV infection to quit the behavior deserve further study. PCP prophylaxis is available and has reduced the incidence in those patients who are adherent to therapy. Antiretroviral drug therapy has significantly improved survival in HIV disease; however, these drugs are expensive, the therapeutic regimen is complicated, and non-adherence with protease inhibitor regimens leads to drug resistance.

Tuberculosis is the leading cause of death among persons with HIV infection worldwide. Dual infection with TB and HIV is a particular problem in jail and prison populations, and patients are often lost to follow-up upon release from incarceration. There is evidence that HIV infection has an adverse impact on the outcome of TB in children. The clinical course and response to treatment for TB in children dually infected with HIV requires further study.

Summary and Recommendations

  1. Barriers to adherence in the HIV-infected patient need to be determined and strategies developed to promote adherence. Specifically, research is needed to understand barriers to adherence in HIV-infected children, adolescents, injection drug users, and racial minority groups. Tailored strategies to enhance adherence must be developed and tested.
  2. Effective smoking cessation treatment strategies must be evaluated among HIV-positive smokers.

    References

52. Jeena, P. M., T. Mitha, S. Bamber, A. Wesley, A. Coutsoudis, and H. M. Coovadia. 1996. Effects of the human immunodeficiency virus on tuberculosis in children. Tuber. Lung Dis. 77: 437-443 [Medline].

53. Sowell, R. L., J. B. Molaghan, D. A. Katzenstein, A. Williams, G. S. Wolfe, C. Lyons, and P. Ungvarski. 1997. Adherence issues in HIV therapeutics. J. Assoc. Nurses AIDS Care 8S: 6-58 .

54. Wallace, J. M., N. I. Hansen, L. LaVange, J. Glassroth, and B. L. Browdy. 1997. Respiratory disease trends in the Pulmonary Complications of HIV Infection Study Cohort. Am. J. Respir. Crit. Care Med. 155: 72-80 [Abstract].




Bronchopulmonary Dysplasia

Bronchopulmonary dysplasia (BPD) refers to chronic lung disease of infancy, usually evolving from an acute respiratory disorder experienced in the newborn period. It occurs most commonly in infants with birth weights of 1,500 grams or less, treated for respiratory distress syndrome. By definition, infants with BPD continue to require supplemental oxygen beyond 28 d of postnatal age. The impact of new therapies such as surfactant, steroids, and high-frequency ventilation on the incidence of BPD is unclear. Although improved outcomes have been demonstrated, the overall incidence of BPD has not decreased, primarily due to the survival of smaller infants.

Infants with BPD demonstrate a range of symptoms, including tachypnea, tachycardia, and retractions. Respiratory distress and cyanosis often occur with feeding, activity, or stress. Extrapulmonary complications may include neurodevelopmental delay, feeding difficulties, and poor growth. The natural course of BPD is one of gradual improvement for the majority of patients, within the first 2 yr of life. The goals of treatment are to minimize lung damage, promote growth of new lung tissue, maintain oxygen saturation, and prevent complications. Treatment modalities include oxygen therapy, nutritional supplementation, and medications such as diuretics, anti-inflammatory agents, and bronchodilators. In severe cases, management requires tracheostomy and prolonged mechanical ventilation. Occupational, physical, and speech therapy are essential components of care for many infants. Current therapeutic recommendations are based largely on physiologic considerations and clinical experience. Research is needed to identify the impact of specific interventions on targeted outcomes for these infants.

Technological advances, changes in health care economics, and research suggesting a negative impact of prolonged hospitalization on development of the preterm newborn have influenced discharge practices for infants with BPD. The home environment has increasingly been recognized as the optimal setting for medically stable, technology-assisted infants to receive the complex and demanding care they require. Combining the benefits of home care with optimal medical treatment and support is a challenge requiring collaboration among patients, care providers, payers, hospitals, and communities.

The emotional and financial costs of caring for infants with BPD are significant. Recent studies have suggested that home care for medically fragile children carries a high emotional cost for parents unless adequate social and financial support is provided. Potential negative effects include social isolation, caregiver fatigue, martial conflict, anxiety regarding potential problems, sibling difficulties, and financial demands. Stress may result from issues of uncertainty, privacy, and conflict with professional care providers in the home. Financial burden for both the health care system and parents can be extraordinary. The most recent estimate of the mean cost of initial hospitalization of infants with BPD was $195,000 in 1989-90. In addition, median medical costs for home care after discharge and rehospitalization were $8,100. Costs are certainly much higher in recent years, for which no data are available.

Summary and Recommendations

  1. Since the majority of BPD occurs in premature infants of low birth weight, continued research is essential to decrease these undesirable outcomes of pregnancy. Determinants of preconceptional and prenatal care-seeking behavior in women require better understanding, including the role of social networks and support systems in facilitating the care-seeking process. Such studies are especially needed in adolescent populations.
  2. Family education is a critical component of the discharge process, and its appropriate content, methods, and teaching materials require further study.
  3. Studies are needed about how parental values, beliefs, and understanding of BPD influence their recognition and interpretation of symptoms and consequences in relation to their decision to seek care.
  4. Research is necessary to further define the physiologic, developmental, and psychological outcomes of early discharge for infants with BPD. Studies of interventions designed to optimize infant development and family functioning are essential. Identification of safe and effective strategies for weaning, and home therapies such as supplemental oxygen and mechanical ventilation are also important. Finally, the cost-effectiveness of early discharge deserves continued study in the rapidly changing health care environment.

    References

55. Abman, S., and J. Groothius. 1994. Pathophysiology and treatment of BPD. Pediatr. Clin. North Am. 41: 277-314 [Medline].

56. Lamberry, G., J. Papai, and W. Kessel, editors. 1996. Proceedings of the Fourth National Title V Maternal and Child Health Research Priorities Conference. National Center for Education in Maternal and Child Health, Arlington, VA.

57. McAleese, K., M. Knapp, and T. Rhodes. 1993. Financial and emotional cost of bronchopulmonary dysplasia. Clin. Pediatr. 32: 393-400 .

58. Patterson, J., B. Leonard, and J. Titus. 1992. Home care for medically fragile children: impact on family health and well-being. Dev. Behav. Pediatr. 13: 248-255 .




Cystic Fibrosis

The recent discovery of the gene for cystic fibrosis (CF) has brought new hope for improved treatments and potential cure for this genetic disorder. Concurrently with the introduction of new treatments and wider acceptance of aggressive management, the median survival age has increased from about 18 yr in 1976 to 29 yr in the early 1990s. However, CF continues to be one of the most common genetic killers in the United States, with over 90% of patients succumbing to chronic obstructive pulmonary disease. Traditionally, treatment has aimed at reducing airway obstruction, controlling airway infection, and improving nutritional status. Recently, systemic anti-inflammatory therapy has been introduced, particularly for younger patients with mild disease.

The diagnosis of this chronic and ultimately fatal disease provides considerable challenge to the child and family who must cope with daily treatments, regular medical follow-up, and management of complications. The cost of care may be burdensome. With recent advances and increased survival have come new uncertainties for patients, including reproductive issues, employment, financial concerns, and decisions about transplantation and experimental therapies. Although most patients with CF fare well psychologically with age-appropriate concerns and some added influence of chronic illness, information about contributing factors to psychological health for this growing population of adolescents and adults is needed.

The paradigm for CF care has shifted from supporting patients as they approach certain death to aggressive management, in anticipation of a potential cure. The implications of this paradigm shift for patients, families, and care providers are poorly understood, in light of anticipated and actual scientific breakthroughs in therapeutic interventions.

Summary and Recommendations

  1. Studies are needed to identify effective interventions for assisting children with CF to assume developmentally appropriate responsibility for their own health.
  2. Research must be conducted to identify effective models for promoting adolescent utilization of health services and transition of pediatric patients to adult roles/care.
  3. The role of health promotion activities, such as exercise, education, and anticipatory guidance in reducing disease morbidity, merits further investigation.
  4. Studies are needed to clarify ethical and societal implications of genetic technology and transplantation in patients with CF.
  5. Additional research is needed to identify appropriate interventions for assisting patients and families to cope effectively with CF and the changing breakthroughs in treatment.

[Medline]
    References

59. Davis, P., M. Drumm, and M. Konstan. 1996. Cystic fibrosis. Am. J. Respir. Crit. Care Med. 154: 1229-1256 [Medline].

60. Fitzsimmons, S. C.. 1993. The changing epidemiology of cystic fibrosis. J. Pediatr. 122: 1-19 [Medline].

61. Lamberry, G., J. Papai, and W. Kessel, editors. 1996. Proceedings of the Fourth National Title V Maternal and Child Health Research Priorities Conference. National Center for Education in Maternal and Child Health, Arlington, VA.




    PULMONARY REHABILITATION

People with chronic lung disease experience a gradual deterioration in functional status that ultimately affects quality of life. Deterioration is associated with respiratory symptoms and physical deconditioning secondary to a sedentary lifestyle. It has been described as a downward spiral. Pulmonary rehabilitation is traditionally designed to interrupt the downward spiral, enhance functional status, and improve health-related quality of life (HRQL). There is a substantial body of research that supports the efficacy of pulmonary rehabilitation. However, key questions remain with respect to selected patient populations, specific interventions, functional status, and HRQL outcomes, and long-term maintenance of benefits derived from pulmonary rehabilitation. Much of the pulmonary rehabilitation research has focused on people with COPD, with minimal research addressing the efficacy of pulmonary rehabilitation in people with restrictive lung disease, cystic fibrosis, and alpha-1 antitrypsin deficiency. Most of the pulmonary rehabilitation research has focused on the study of men, with women, minorities, and children underrepresented. Multiple studies have addressed the efficacy of comprehensive pulmonary rehabilitation programs, and less is known about the efficacy of individual components. Most interventions have been designed to improve functional capacity, i.e., strength and endurance of respiratory and peripheral muscles. Relatively little is known about the impact of these interventions on level of activity on a daily basis. The effectiveness of interventions targeted specifically at performance outcomes (e.g., efficiency or dyspnea tolerance), and the subsequent impact of improvements on HRQL are virtually unknown. Finally, most of the research focused on short-term outcomes, and little is known about how to maintain the benefits of pulmonary rehabilitation over time.

Relatively little is known about the impact of pulmonary rehabilitation and treatment of lung disease on HRQL. Data from cross-sectional studies suggest that the relationship between pulmonary function and HRQL is relatively weak for people with COPD and asthma; however, this may not accurately reflect the natural history of disease progression and deterioration in HRQL. Little is known about the trajectory of HRQL in COPD as pulmonary function deteriorates over time, or the impact of acute exacerbations and chronicity on HRQL in patients with asthma. Evaluation of pharmacologic therapies often includes the therapeutic effect and negative consequences of treatment on HRQL. Studies are also needed on the impact of psychosocial, behavioral, and alternative therapies on HRQL outcomes. The differential impact of disease and treatment on HRQL in men and women, and across cultural and socioeconomic groups, is also unknown. Finally, the impact of comorbidity on functional status and HRQL in persons with pulmonary disease is an important and yet understudied area.

Summary and Recommendations

  1. Research is needed to test the efficacy of comprehensive pulmonary rehabilitation and specific interventions for children and adults with restrictive lung disease, cystic fibrosis, and alpha-1 antitrypsin deficiency.
  2. Studies that examine the efficacy of comprehensive pulmonary rehabilitation for women and underrepresented minorities are needed.
  3. Research is needed to determine the efficacy of target interventions designed to enhance both functional capacity and functional performance.
  4. Research is necessary to evaluate the efficacy of interventions designed to enhance the long-term retention of benefits derived from pulmonary rehabilitation.
  5. The relationship between pulmonary function, exacerbations, chronicity, and HRQL over time deserves further study.
  6. The differential impact of disease and treatment on functional status and HRQL in men and women, and across cultural and socioeconomic groups, deserves further investigation.
  7. Studies that determine the impact of psychosocial and behavioral interventions and alternative therapies on HRQL outcomes are needed.
  8. Research is necessary to describe the impact of comorbidity on functional status and HRQL.

    References

62. Casaburi, R., and T. L. Petty. 1993. Principles and Practice of Pulmonary Rehabilitation. W. B. Saunders, Philadelphia, PA.

63. Fishman, A. P., editor. 1996. Lung Biology in Health and Disease: Pulmonary Rehabilitation. Marcel Dekker, New York, NY.

64. Jones, P. W.. 1995. Issues concerning health-related quality of life in COPD. Chest 107: 187S-193S [Free Full Text].

65. Juniper, E. F.. 1995. Quality-of-life considerations in the treatment of asthma. Pharmacoeconomics 8: 123-138 . [Medline]

66. Lacasse, Y., G. H. Guyatt, and R. S. Goldstein. 1997. The components of a respiratory rehabilitation program: a systematic overview. Chest 111: 1077-1088 [Abstract/Free Full Text].

67. Maille, A. R., A. A. Kaptein, J. C. and J. M. de Haes. 1996. Assessing quality of life in chronic non-specific lung disease: a review of empirical studies published between 1980 and 1994. Qual. Life Res. 5:287-310.




    COST-RELATED RESEARCH

Cost-effectiveness Research

The demand for efficient use of health care resources continues to increase along with the requirement to demonstrate the effectiveness of alternative health programs in terms of clinical outcomes and costs. Economic analyses evaluate costs of providing services and the economic and health outcomes of those services. Type of analysis is determined by the manner in which the outcome is assessed: cost minimization analysis compares costs for interventions that have equivalent outcomes; cost-benefit analyses express outcomes in monetary units; cost-effectiveness studies examine costs relative to clinical outcomes; cost-utility studies express outcomes as quality-adjusted life-years (QALY), with consideration given to patient preference for treatment outcomes.

Costs associated with the care of persons with respiratory disease are dominated by emergency room visits and hospitalizations, with intensive care representing a substantial cost burden. Thus, clinically advantageous and economically viable interventions target prevention, early detection, and effective ambulatory care. With the exception of smoking cessation programs, relatively little is known about the cost-effectiveness, cost-benefit, and cost-utility of prevention programs for respiratory disease.

COPD, asthma, and obstructive sleep apnea are examples of chronic conditions characterized by a growing prevalence and expanding cost burden. The goals of therapy are to stabilize disease, optimize functional status, and maintain or improve health-related quality of life. The extent to which many treatment programs, including formal rehabilitation programs, patient education classes, support groups, and visiting nurses, as well as devices such as oxygen delivery, peak flow meters, home air filters, and spacers, are effective in achieving these goals and are economically viable is essentially unknown. To date, only limited recommendations for economic analyses of respiratory interventions have been developed.

Summary and Recommendations

  1. Further research is needed to determine the costs and cost-effectiveness of existing therapeutic programs for the prevention of acute respiratory disease and exacerbations of chronic disease.
  2. Studies that determine the costs and cost-effectiveness of new therapeutic programs for the treatment of acute and chronic respiratory disease are needed.
  3. Research that examines alternative therapies that achieve the same desired therapeutic outcomes at lower costs are necessary.
  4. Studies that address the development of algorithms for identifying high-risk patients or targeted cost-effective interventions are needed.

    References

68. Drummond, M. F., G. L. Stoddart, and G. W. Torrance. 1987. Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press, Oxford.

69. Gold, M. R., J. E. Siegel, L. B. Russell, and M. C. Weinstein. 1996. Cost- Effectiveness in Health and Medicine. Oxford University Press, New York.

70. Rutten-Van Molken, M. P. M. H., E. K. A. Van Doorslaer, and F. F. H. Rutten. 1992. Economic appraisal of asthma and COPD care: a literature review 1980-1991. Soc. Sci. Med. 35: 161-175 .

71. Sullivan, S., A. Elixhauser, A. S. Buist, B. R. Luce, J. Eisenberg, and K. B. Weiss. 1996. National Asthma Education and Prevention Program Working Group report on the cost effectiveness of asthma care. Am. J. Respir. Crit. Care Med. 154: S84-S95 .

72. Weiss, K. B., P. J. Gergen, and T. A. Hodgson. 1992. An economic evaluation of asthma in the U.S. N. Engl. J. Med. 326: 862-866 [Abstract].




Health Care Delivery Models

The American health care system has experienced revolutionary change over the last decade as the quality, cost, and accessibility of care have been scrutinized. Technologic advances, restructuring of payment strategies for health care, reduced lengths of hospital stay, increasing numbers of chronically ill patients, alternative sites for care, and changing patterns of residency education are some of the factors contributing to the dramatic changes within our health care system.

Society has placed increased value on health promotion and disease prevention. Public policy includes a greater emphasis on the importance of promoting independence in maintaining health and facilitating appropriate self-care for individuals and families experiencing illness. However, despite evolutionary changes in health care delivery, many Americans lack access to care. Others are overwhelmed by escalating costs, the complexity of the system, and fragmentation of care. At the same time, many care providers are equally overwhelmed by the sharp rise in acuity and complexity of patient problems.

Within this environment, tremendous opportunities exist for advanced practice nurses (APNs) to demonstrate new models of accessible, high-quality, affordable health care for patients with pulmonary conditions. Creative roles combining aspects of the traditional nurse practitioner and clinical nurse specialist functions have been described as advantageous in today's cost-conscious and quality-driven health care environment. Case management is one strategy that has been proposed to achieve outcome-oriented, cost-effective health care through patient advocacy and coordination of services. Such roles and strategies are applicable across the care continuum and have been implemented in many settings, including home, primary care, subacute, and intensive care where advanced practice nurses are functioning as direct care providers, consultants, and case managers. Although the cost-effectiveness and quality of APN care has been documented in specific studies, the generalizability of findings to broader populations has not been tested. Factors such as socioeconomic status, race, gender, and culture may necessitate modifications in interventions that have proved successful with other patient groups in other settings. In addition, the processes utilized by APNs to achieve desired outcomes has not been adequately described. Even more than previously, effective respiratory nursing will require collaborative team work with other care providers and strong partnerships with patients and families. Essential information is needed to determine how the APN role contributes to and enhances delivery provided by the health care team.

Summary and Recommendations

  1. Well-designed and rigorously conducted studies regarding cost and quality outcomes of APN care, as well as outcomes of disease state/case management programs, are critically needed.
  2. The generalizability of findings that document effective nursing care delivery models must be tested using larger and varied populations.
  3. Research is needed to evaluate self-care interventions that integrate patients and families into their health care and illness management.

MARY ELLEN WEWERS, Ph.D., R.N. (Chair)

JO ANN BROOKS-BRUNN, D.N.Sc.

LESLIE HOFFMAN, Ph.D., R.N.

SUSAN JANSON, D.N.Sc.

NANCY KLINE-LEIDY, Ph.D., R.N.

ANNE KLIJANOWICZ, M.S., R.N.

JANET LARSON, Ph.D., R.N.

JOAN TURNER, M.S., R.N.

Reviewed by:

ANN KNEBEL, D.N. Sc.

KATHLEEN STONE, Ph.D., R.N.

TERRI WEAVER, Ph.D., R.N.

    Footnotes
This Statement was prepared by a Task Force of the Nursing Assembly of the American Thoracic Society. Members of the Task Force were:
    References

73. Ackerman, M., L. Norsen, B. Martin, J. Wiedrich, and H. Kitzman. 1996. Development of a model of advanced practice. Am. J. Crit. Care 5: 68-73 .

74. Brooten, D., and M. Naylor. 1995. Nurses' effect on changing patient outcomes. Image 27: 95-99 .

75. Bower, D. 1992. Case Management for Nurses. American Nurses Publishing Co., Washington DC.

76. Hinshaw, A. 1992. The impact of nursing science on health policy. In Communicating Nursing Research, Vol. 25. Silverthreads: 25 Years of Nursing Excellence. Western Institute of Nursing, Boulder, CO. 15-26.





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