Acute and chronic disorders that may require home care are listed in Table 1

Complete data on the number of children receiving home care services for chronic respiratory-related conditions are not available, although some data are available for children with cystic fibrosis receiving home medical therapies. In 2003, 19.6% of patients with cystic fibrosis received one or more courses of intravenous antibiotics at home, 6% received home oxygen therapy, and 8.9% used supplemental tube feedings at home (23).

Traditionally, a wide range of medical, nursing, and respiratory therapies has been delivered in the home, including continuous oxygen therapy, inhalation (nebulizer) therapy, tracheostomy care, and others (24). In the past 20 years, the frequency with which other treatments are delivered in the home has increased. These therapies that may involve pulmonary specialists include continuous positive airway pressure therapy for obstructive sleep apnea in adults and children (25), home apnea monitoring, administration of intravenous medications, and mechanical ventilation. The number of ventilator-dependent patients doubled from 1980 to 1990, with about 20% of the estimated 11,419 patients being cared for at home (26).

Medical diagnosis is only one of several factors associated with the need for episodic home health care after hospital discharge for medical or surgical treatment. Factors found in at least one study to be associated with home health referral posthospitalization are complex medical needs (need for skilled nursing care, or dually diagnosed with COPD and chronic heart failure), activity of daily living (ADL) and instrumental activity of daily living (IADL) limitations, lack of availability of a spouse caregiver, low level of social support, educational attainment of less than 12 years, need for chore or personal care services, and prior home care use (27–30).

Garrard and colleagues (31) developed a “Need for Home Health Services Check List” using expert consensus, including nurses, to identify health, psychosocial, and behavioral problems, and education and coordination needs suggesting the need for home health services after hospital discharge. Although adequate interrater reliability has been reported (31, 32), construct validity of the scale remains to be established. The chest physician or pulmonologist can use the scale as a guide to identifying the need for home health care referral, but without evidence for predictive validity, clinical judgment is the deciding factor in whether to order home care referral.

Discharge criteria for mechanically ventilated patients have been developed on the basis of expert consensus, and include medical, respiratory, and psychological stability, and the existence of a comprehensive discharge plan (26). Gilmartin (33) identified criteria specific to home management of chronically ventilated patients (Table 2)

The American Academy of Pediatrics (35) developed guidelines for home care referral for infants and children with chronic disease that include patient, family, home, and community factors that should be in place before the child is discharged. Although not specific to respiratory patients, these factors constitute important criteria for discharge of infants and children with chronic respiratory disorders. The guidelines call for an individualized health care plan to be in place before discharge. Patients, families, a designated case manager, and interdisciplinary team members representing all sites in which care will be provided must be involved in planning for home care. For respiratory patients, the pediatric pulmonologist can play a central role.

The evidence base for appropriate home care referral for respiratory patients is evolving. On the basis of a consensus of clinical experts and existing knowledge about home care outcomes, the ATS recommends that referral be considered for respiratory patients if one or more criteria in Table 3

Adult and pediatric patients with respiratory disorders living at home may have a wide variety of medical, functional, psychosocial, developmental, and advance care planning needs. These needs are best addressed using a patient- or family-centered model, because the provision of home care services occurs in the patient's context and the provider is a visitor in that setting. A multidisciplinary health care team is needed to address the patient's holistic needs.

The developmental needs of children with respiratory problems that improve over time are different than the needs of adults with similar problems. Children must have early services so that they can achieve normal age-dependent function as a respiratory impairment improves (36). Although the assumption that children develop more normally at home than during prolonged hospitalization has not been studied in controlled clinical trials, some reports have documented normal development among ventilator-dependent children who remain at home (37, 38). Ideally, home health professionals, including nurses, chest physicians, and pediatric pulmonologists, work with parents to develop a daily plan of care that maximizes their child's developmental potential.

Home health care providers are expected to assist patients and their caregivers to manage day-to-day living with respiratory disease and disability, identify and respond to complications, and use respiratory equipment and procedures safely. Determination of which disciplines are involved in an individual patient's care is based on the primary problems identified and the reimbursement mechanism supporting home care.

Disciplines covered by Medicare to provide home health services include registered and licensed practical nurses, physical and occupational therapists, speech–language pathologists, social workers, and home health aides. Most patients, and particularly those with active comorbid conditions and a high risk of developing complications beyond the respiratory system, require referral by the physician to a home health registered nurse (39). A patient with primary problems of deconditioning, impaired mobility, or the need for home adaptation is best served by referral for physical or occupational therapy. If the primary need is for assistance with ADLs or IADLs, services offering home health aide assistance should be explored. Medicare reimburses for personal care only if skilled nursing or rehabilitation services are also required as determined by the physician's evaluation of the patient's medical condition. Limited chore services are available within the context of home health aide delivery of personal care services.

Nurses who provide home health care in the United States and Canada are generalists who care for patients with a wide range of medical diagnoses (40). They provide skilled care for patients within the context and challenges of the home environment, integrating interventions into the complex interactions between physiologic, family, and environmental needs (41). Home health nurses must be able to function independently and develop collaborative relationships with family members and interdisciplinary team members (14, 17, 18). Care coordination by nurses is common for patients with multiple comorbid conditions and for patients who receive services in addition to those provided by the home health agency (42). Nurses are the primary link to the chest physician or pulmonologist when patients receive home health care. A taxonomy of required practice elements for home health nurses has been developed (Table 4

Home health specialty programs, including home management of respiratory patients, were developed in the early 1980s in an effort to provide comprehensive care to complex, chronically ill patients (45). Health care cost containment efforts and an inability to demonstrate cost-effectiveness of specialized respiratory home care services (46–48) led to eventual discontinuation of most of these programs.

More recently, earlier discharge of even sicker patients and marketplace competition have again created a call for specialty practice in the home setting (49, 50). One example described by Nemcek and Egan (51) is a pulmonary disease management program among five specialty programs in place in their agency. A quasi-experimental study of a respiratory specialist advanced practice nurse (APN)-directed home health intervention for patients with COPD within parameters determined in consultation with pulmonologists found somewhat better patient outcomes compared with patients receiving usual home care, suggesting that availability of a respiratory clinical nurse specialist for consultation and education may be of benefit (52). Naylor and colleagues (53) suggested that cost reductions in an APN-led home health intervention could be attributed to the fact that the APNs were gerontologic, not disease-focused, specialists. These master's prepared gerontologic specialists were able to address comorbid conditions, combined effects of multiple health problems, and social issues, not only the needs related to the diagnosis causing the index hospitalization, and communicate early with the physician specialist.

Traditional Medicare does not reimburse for the in-home services of respiratory therapists (RTs), but private insurance or Medicare Health Maintenance Organizations (HMO) providers may provide reimbursement for these services. Because Medicare now reimburses home health agencies for a physician-ordered episode of care (usually 60 days) rather than for each home visit, there may be an opportunity for home health agencies to use RTs for home visits. Whether use of RTs is permissible reimbursement remains an unresolved question, because RT services are excluded from Medicare home health care reimbursement by statute.

Hospice agencies provide palliative, as opposed to curative, medical, social, emotional, and spiritual, services to terminally ill patients and their families (54). More than 90% of the hospice agencies in the United States are Medicare certified (55). Medicare-certified hospices are required to provide inclusive physician, nursing, home health aide, homemaker, social work, counseling, bereavement, and volunteer services. Rehabilitation services (physical and occupational therapy, speech–language pathologist) are provided on an as-needed basis. Hospice care is managed by an interdisciplinary group, whose members work collaboratively with patients and families to plan care that meets the identified needs of the terminally ill patient and family. Among the services provided are pain and symptom management, assistance with the psychosocial and spiritual aspects of the dying process, provision of short-term inpatient or respite care, and bereavement counseling for surviving family members and friends (55). Hospice providers must embrace a philosophy of care that is patient-driven and family-centered, and recognize their role as guests in the homes and lives of their patients at a time of dramatic significance (56). Hospice services to patients with chronic respiratory diseases usually provide home visits by generalist physicians for recertification. However, chest physicians and pulmonologists can play a critical role in the initial determination of eligibility, addressing the problem of estimating prognosis with a disease process that is characterized by life-threatening exacerbations but a slow decline in baseline function. COPD is a leading cause of death but without specialist recognition of need, few patients with COPD access the hospice care available.

As seen in Figure 1, home respiratory therapy and home infusion companies provide equipment and supplies needed by respiratory patients at home. Home respiratory therapy companies provide oxygen systems, home ventilators, sleep apnea equipment, apnea monitors, nebulizers, and nebulized respiratory medications (2, 57). These vendors employ respiratory therapists or registered nurses to teach patients and families use and care of the equipment, and to monitor safe operation of the equipment. The therapist or nurse also documents continuing need for the equipment and patient response to the therapy, communicates relevant patient information to the prescribing chest physician or pulmonologist, troubleshoots, and intervenes to address complications related to the respiratory equipment or therapies (58).

Home infusion therapy companies provide intravenous medications and fluids, enteral or parenteral nutrition, and other injectable therapies. These vendors employ pharmacists to prepare prescribed medications and solutions, and registered nurses who have specialized training in infusion therapy. Registered nurses providing infusion therapy must have the skills to teach the patient how to safely administer prescribed medications using the home infusion equipment, monitor expected and untoward responses, communicate with the prescribing physician, and respond to complications (57, 59). Large companies generally provide both respiratory and infusion services and also may provide bathroom and other adaptive equipment.

Chronic home care services, sometimes called hourly care, are the modern day equivalent of early home nursing, in which a registered nurse or other provider gave direct care to a single patient at home. Unskilled chronic care includes housekeeping or chore services and the provision of bathing, dressing, or other personal care. Chronic care services may be reimbursed by private insurance or by Medicaid for disabled children and for adults who meet Medicaid eligibility requirements. Medicare does not reimburse for these services. Medically fragile or technology-dependent (MFTD) children who require several hours of nursing care per day are most likely to be those receiving mechanical ventilation, although children with less critical but nonetheless multiple or complex care needs may also require such care.

Comprehensive discharge planning that emphasizes clear communication among patient, family, and an interdisciplinary care team is required to ensure successful home care for MFTD children (35, 60, 61). Communication between hospital-based staff, chest physicians/pulmonologists, and providers who will take over patient care after the transition to home is also essential (60). In most situations, family members will provide the majority of direct patient care, but referrals to home care agencies providing hourly care are often required to allow family members to sleep, rest, do household activities and errands, care for other family members, maintain relationships, and work outside the home (62, 63).

Parents of MFTD children expect nurses and physicians to work respectfully and collaboratively with the family, and to allow parents to direct the care of their child (64). They expect nurses and physicians to provide safe, competent, skillful care, delivered with the same level of attention and care that parents themselves use (64, 65). Parents view home care nurses as a resource for increasing the ability of family members and respite care providers to provide quality care through education and training (66). Parents also want nurses to educate the family about available resources, and to help secure these resources through advocacy. Communication among nurses, physicians, and family (65), and recognition of professional boundaries and respect for the family unit, are highly valued (65, 67).

The role of the primary care physician in the provision of home care has been categorized into three activities: making home visits, making referrals of patients to home care agencies, and participation in the multidisciplinary team providing care to adults and MFTD children at home (68). Physicians also serve as medical directors of home health and hospice agencies (55, 69). Primary care and internal medicine physicians make regular but infrequent home visits, especially in rural areas (68), but specialists such as chest physicians and pulmonologists may also make home visits to supervise home management of mechanical ventilation or other care (69).

Medicare and other payers require that the physician direct the provision of home health care by the interdisciplinary care team through on-going oversight of the treatment plan. The physician determines the patient's medical needs, approves a treatment plan and orders that meet those needs, and monitors implementation of the plan (35, 70). The physician may assume the role of case coordinator, but is more likely to delegate this role to the home health nurse or other home care agency personnel. Most physicians, including specialists, report that they work with home health agency or hospital staff to determine home health services needed by patients (71).

Regular communication between the physician, the case coordinator, and other home care agency personnel is critical to assure that patients receive appropriate clinical care, and that treatment plans are updated and approved when the patient's condition changes (69). Home care agencies are increasing their use of technology and telemedicine programs to send reports and treatment plan changes to physicians (69, 72). Effective electronic modes of communication, telemedicine, and other home care technologies exist but are beyond the scope of this statement.

Medications for chronic respiratory disease are prescribed for the general goals of symptom reduction, management of complications, and maintenance of lung function. The Global Initiative for Chronic Obstructive Lung Disease (73) recommends short-acting bronchodilators as needed for symptom management, routine administration of long-acting bronchodilators in moderate to severe COPD, use of short-acting β₂-agonist and anticholinergic combinations, and annual or biannual influenza vaccination. Routine inhaled corticosteroids are recommended only for severe or very severe COPD. The Global Initiative for Chronic Obstructive Lung Disease recommends treatment of exacerbations with bronchodilators, oral or intravenous corticosteroids, and antibiotics when sputum is purulent or increased in volume. Appropriate use of guidelines involves adaptation by APNs, chest physicians, or pulmonologists to individualize patient care.

The National Asthma Education and Prevention Program (74) recommends inhaled steroids for mild, persistent asthma in patients of any age; low- to medium-dose inhaled steroids plus a long-acting β₂-agonist for moderate and severe, persistent asthma; and high-dose inhaled steroids plus a long-acting β₂-agonist and oral corticosteroids as needed for severe, persistent asthma. Antibiotics are recommended for treatment of exacerbations only when there is fever and purulent sputum, pneumonia, or bacterial sinusitis.

Nebulized tobramycin and colistin are commonly administered to patients with cystic fibrosis for maintenance therapy (75–77). Nebulized tobramycin has also been effective against Pseudomonas aeruginosa infection in patients with bronchiectasis (78). Acute, serious exacerbations generally require intravenous administration. Primary pulmonary hypertension may be treated by continuous intravenous prostacyclin infusion. Treatment may include oral anticoagulants, diuretics, and calcium channel blockers (79). Administration of oral or parenteral opiates may reduce severe dyspnea that cannot be controlled by nonpharmacologic measures (80, 81).

Successful home administration of medications requires knowledge of the drugs and administration techniques and adherence to the medication regimen. Patient nonadherence with prescribed medications is well documented. In one study, a sample of 342 patients at high risk for rehospitalization was counseled regarding medications to be taken at home (82). At a home visit 1 week later, nearly half the patients had mixed the discharge medications with preexisting supplies or medications prescribed by other practitioners. Approximately half of those patients for whom a pill count could be made were nonadherent with medications prescribed at discharge. Most patients could not identify adverse effects or special instructions for prescribed medications. The only predictor of nonadherence was the number of prescribed medications.

Of concern to nurses, chest physicians and pulmonologists is medication noncongruence between 74% of physician and clinic patient pairs (83). Yang and coworkers (84) studied adherence in 50 elderly patients, without cognitive impairment, who were instructed to bring all their medications to a clinic visit. A subsequent home visit was conducted to determine medications actually taken. When clinic and in-home medication lists were compared, nearly half the clinic lists missed at least one medication being taken at home. Omitted prescription medications included such drugs as oxycodone, warfarin, and insulin. Barat and coworkers (85) found that living alone, dementia (i.e., a Mini-Mental State Examination score below 24), more than one prescriber, and three or more prescribed medications were associated with nonadherence. Gray and coworkers (86) found that 44% of 147 elderly home health agency patients were over- or underadherent with at least one medication. Risk of nonadherence increased with Mini-Mental State Examination scores below 24 and with each added prescribed medication.

Medication knowledge alone did not predict adherence. Ho and colleagues (87) administered knowledge questionnaires to parents of asthmatic children as part of a longitudinal study on treatment adherence. Knowledge scores did not predict medication adherence or asthma outcomes, such as number of emergency room visits. The investigators could not support the assumption that knowledge directly leads to improved self-management and health outcomes and emphasized the complexity of factors associated with adherence.

Poor adherence has been demonstrated with use of metered dose inhalers (MDIs) (88–91), and loss of correct technique over time has been shown as well (92, 93). Incorrect MDI use has been correlated with asthma instability (94). Addition of a spacer reduces technique problems related to coordination of firing and inhalation (95). Although dry powder inhalers (DPIs) are more often used correctly (96–98), technique errors are possible, particularly in elderly patients (99).

Because MDI and DPI administration techniques differ, patients must be able to demonstrate the correct technique for each device. The risk of incorrect use may increase when patients use both MDIs and DPIs (100). Patients must also know how to determine the number of doses remaining. DPI dispensers that include medication counters may be preferable to MDIs (101) because floating an MDI canister in water may cause contamination (102). Patients must clean the device and spacer correctly. To reduce the accumulation of electrostatic charge that decreases respirable dose, spacers should be washed with diluted household detergent, left unrinsed, and allowed to drip dry (103). APNs, chest physicians and pulmonologists must assess multiple factors in making prescribing decisions, including patient cognition, dexterity, and administration skill.

Home nebulizers are used to deliver maintenance antibiotic therapy for patients with cystic fibrosis or bronchiectasis. Nebulizers are preferred for patients with asthma or COPD if they are unable to master MDI or DPI technique despite repeated instruction, have an extremely low inspiratory capacity or flow rate, cannot breath hold, or need high bronchodilator dosages (104, 105).

Home nebulizers are potential reservoirs for respiratory pathogens, among them Staphylococcus aureus and Pseudomonas aeruginosa (106, 107). Although no evidence-based guidelines exist for cleaning of home nebulizers, usual recommendations include rinsing after each use, disinfecting three times per week, and air drying (108). Quaternary ammonium compounds have been shown to be effective against both S. aureus and P. aeruginosa, whereas acetic acid (white distilled household vinegar) has been shown to be effective against P. aeruginosa but ineffective against S. aureus (109). However, washing with household detergent removes S. aureus (110). Thus washing followed by a vinegar soak has been accepted practice.

Chatburn and coworkers (110) compared the effectiveness of two concentrations of acetic acid, quaternary ammonium compound, and household detergent against a mixture of P. aeruginosa, S. aureus, and Pseudomonas cepacia. Washing in detergent followed by a 60-minute soak in a 1.25% acetic acid solution (1 part vinegar to 3 parts distilled water), then air drying, was as effective as detergent washing followed by a 10-minute soak in a quaternary ammonium compound solution, then air drying. However, neither technique removed all organisms. Note that quaternary ammonium solutions can be reused and are less expensive over time than acetic acid solutions.

More stringent home nebulizer cleaning guidelines are recommended for patients with cystic fibrosis and include: detergent prewashing; disinfection by boiling, immersion in bleach, alcohol or hydrogen peroxide; rinsing with sterile or filtered water; and air drying. These guidelines recommend against use of acetic acid (111).

Riethmueller and colleagues (112) found in-home administration of intravenous antibiotics for patients with cystic fibrosis with chronic P. aeruginosa infection to be as effective as in-hospital administration. Community-acquired pneumonia and COPD exacerbations have also been treated by intravenous antibiotic administration in the home. However, patients must be evaluated for factors precluding safe home administration, such as no telephone, active substance misuse, history of anaphylaxis, unsafe home situation for home care staff visits, or language barriers that cannot be overcome by interpreter use (75, 113). Patients or their caregivers must be able to recognize complications, including loss of access, infection, and drug side effects (113). The recommendation of a European Consensus Conference is that the first dose should be administered in the hospital setting under medical supervision (75). However, several studies examining cost-effectiveness of outpatient intravenous therapy in the United States and Canada reported that treatment often started in an outpatient setting (114–116). The role of a team's (as nurse, physician, pulmonologist) communication was critical in providing safe and effective pharmacotherapy.

Exploring barriers to adherence, providing education, and assisting patients to use medications correctly are essential in-home interventions. If patients are to adhere to their prescribed regimens, it is necessary to ensure correct administration technique, assist in the development of a realistic medication schedule, teach how to order medications, and ensure correct maintenance and cleaning of the administration system. Involving family caregivers is indicated for cognitively impaired patients. Fostering communication among multiple prescribers, such that a chest physician or pulmonologist is aware of the number of drugs a patient is taking, may reduce polypharmacy or complexity of medication regimens (117–119).

Two randomized controlled trials demonstrated the survival benefit of long-term oxygen therapy (LTOT) for patients with COPD with chronic hypoxemia (120, 121). Although specific to COPD, the findings have been extrapolated to other chronic respiratory diseases (122).

Current ATS guidelines stipulate LTOT for a Pa_O2 less than or equal to 55 mm Hg (or an Sa_O2 less than or equal to 88%). LTOT is also recommended for patients with cor pulmonale who have a Pa_O2 of 55–59 mm Hg (or an Sa_O2 less than or equal to 89%) and EKG evidence of “P” pulmonale, hematocrit greater than 55%, or congestive heart disease. ATS standards (123) recommend an arterial blood gas analysis rather than pulse oximetry to initially establish long-term oxygen need. Evidence suggests that 30 to 60% of patients who initially qualify for LTOT no longer qualify when retested 1 to 3 months later (124, 125). Current recommendations for patients initially prescribed LTOT at hospital discharge are for physicians to retest after 90 days (126).

Concentrators, liquid oxygen, and compressed oxygen are used to deliver LTOT. Oxygen concentrators are the least expensive but do not deliver 100% oxygen or usually permit portability. Only one portable concentrator is currently Medicare approved. Concentrators deliver at least 95% oxygen when the flow rate is less than or equal to 2 L/min. Liquid systems are costly but deliver 100% oxygen regardless of flow rate and easily transfill portable containers. Compressed oxygen systems deliver 100% oxygen and are supplied in heavy cylinders designed for stationary use, and in light-weight aluminum cylinders designed for portability (127). Cost containment efforts have driven development of oxygen-conserving devices, such as pulsed systems that deliver oxygen only during early inspiration. Some oxygen-conserving devices deliver insufficient oxygen during activity (128, 129). Patients must have the oxygen flow rate individually titrated for the specific device to be used (126, 130, 131).

The Nocturnal Oxygen Therapy Trial empirically recommended increasing the oxygen dose by 1 L/minute during sleep for patients hypoxemic at rest (120). Plywaczewski and colleagues (132) confirmed desaturation during sleep in nearly half of patients with COPD who were receiving a nocturnal oxygen flow rate sufficient to maintain a daytime Pa_O2 greater than 60 mm Hg. Mohsenin and colleagues (133) found that daytime oxygen saturation values did not accurately predict nocturnal oxygen need, but continuous oximetry monitoring during sleep permitted precise dosing (123). Note that oxygen supplementation in nocturnal hypoxemia without daytime hypoxemia at rest has not demonstrated a long-term survival benefit (134, 135). O'Donohue and Bowman (136) recommend sleep studies for patients without daytime hypoxemia who exhibit right heart failure or other clinical evidence of nocturnal desaturation to determine the need for oxygen or other therapy.

Supplemental oxygen reverses exercise-induced hypoxemia and may improve exercise performance (137). However, the long-term benefit of oxygen supplementation for exercise-induced hypoxemia without hypoxemia at rest has not been clearly demonstrated and remains controversial (131, 138). Although the Nocturnal Oxygen Therapy Trial empirically recommended increasing the oxygen dose by 1 L/minute during exercise for patients hypoxemic at rest, current guidelines recommend dose titration to achieve an Sa_O2 exceeding 90% during exertion (123, 126, 131, 139). A walking protocol using pulse oximetry to determine dose requirements produced comparable results in hospital and home (140).

Supplemental oxygen is recommended for chronic lung disease of infancy to promote repair of developing lungs, provide adequate exercise tolerance, and reduce pulmonary arterial hypertension and right ventricular workload. Monitoring oxygenation is essential during activity, feeding, and sleep, when oxygen levels are known to fluctuate. Recommendations for assessment of oxygenation level as well as parameters and techniques for supplemental oxygen administration are described in detail in the ATS Statement on the Care of the Child with Chronic Lung Disease of Infancy and Childhood (141).

Although chest physicians and pulmonologists are using appropriate criteria for prescribing LTOT, the order alone does not assure appropriate use in the home. LTOT patients report using oxygen for less than the prescribed time (142), and overestimate their use when self-reports are compared with metered values (143). Kampelmacher and colleagues (144) found that of 528 patients receiving LTOT only 33% had been given any instruction for oxygen use, and more than 40% did not know their oxygen prescription or guidelines for use. Reported reasons for nonadherence included difficulty in managing equipment, absence of dyspnea, restricted autonomy, fear that the therapy would not work when it was “really needed,” and feelings of shame. The investigators concluded that more education, motivation, and monitoring of patients was needed, and suggested that support at home was more cost-effective than additional outpatient visits.

Depression, anxiety, less independence in IADLs (such as shopping), and poor health-related quality of life were described in LTOT patients (145–147) LTOT patient experiences of impaired mobility, restriction, and social isolation have also been described (148). APNs, chest physicians, pulmonologists, and other clinicians along with home care providers must assist patients in adapting to the many challenges posed by LTOT. Pulse oximetry in the home has the advantage of replicating the patient's usual environment and activities and can be used for flow rate titration during rest and exercise. Many aspects of LTOT use can be initially taught or reinforced in the home. Examples include correct usage guidelines, determining when replacement or refill is needed for compressed or liquid systems, safe filling of liquid portable devices, maintaining a back-up system for concentrators, and avoidance of fire hazards (149). Patients can be helped to incorporate oxygen use into ADLs and IADLs, and can be assisted with activities they cannot manage independently. Psychological support and identification of situations requiring professional intervention can also be provided in the home setting.

All patients with respiratory disease should be advised to stop smoking (73, 123). Nurses, chest physicians, pulmonologists, and home health providers should follow the U.S. Surgeon General's recommendations and ask every patient at every encounter, “Do you smoke?” and “Do you want to quit?” The clinical practice guideline “Treating Tobacco Use and Dependence” provides a framework for treating tobacco dependence, including treatment measures for patients who are willing to quit, motivational interventions for patients unwilling to quit, and relapse prevention for patients who have recently quit (150).

Research supports recommendations for encouraging and assisting patients to quit, but data are insufficient to make definitive recommendations for parents (151). However, clinical practice guidelines encourage smoking cessation interventions in parents to eliminate second-hand smoke exposure in their children (152), and application of knowledge about the risks posed by such exposure suggests these recommendations are warranted. Although guidelines do not distinguish between potential harms to well children and those with acute or chronic lung disease, smoking cessation for parents of ill children is especially important.

The goal of pulmonary rehabilitation is to help patients with lung disease achieve and maintain maximum functioning and independence in the community (153). Programs are most often conducted in the outpatient setting, but successful in-home pulmonary rehabilitation has been reported (154–159). Greater improvement in exercise tolerance and dyspnea with activities of daily living (ADLs) has been demonstrated with supervised outpatient exercise than self-monitored home exercise (160, 161). However, Strijbos and coworkers (162) compared 12 weeks of outpatient rehabilitation with supervised home exercise and found that the gains in exercise tolerance and dyspnea persisted at the 18-month follow-up for the home group, but not for the outpatient group. The investigators theorized that the home exercise group maintained their gains because they had incorporated exercise into the home environment. Others have demonstrated improvement (157), no decline (163), or reduced rate of decline (164) in exercise tolerance in patients with COPD or cystic fibrosis, respectively, when compared with control groups. Oh (157) also found lower exertional dyspnea and better health-related quality of life (HRQL) in a small sample of Korean patients with COPD after a nurse-led home pulmonary rehabilitation intervention than in control subjects who received educational advice only. The ATS statement on pulmonary rehabilitation (165) outlines known benefits and recommended components of pulmonary rehabilitation, and compares potential advantages and disadvantages of home versus outpatient settings for rehabilitation.

Few data support reduced 1-year mortality in patients with COPD receiving specialized respiratory home care services. Two early studies of home care delivered by specialist respiratory nurses in the United Kingdom found reduced risk of death in patients receiving the intervention compared with those not receiving home care (47, 48). However, home health care delivered by respiratory specialist nurses in the United States and Australia produced no survival advantage at 1-year follow-up compared with usual care (46, 216) or with home health care provided by generalist nurses (46). Spanish LTOT users receiving usual care or regular and on-demand telephone and home visit follow-up did not differ in mortality over 1 year (217). Australian general medical–surgical (including COPD) patients randomized to a home-based intervention delivered by a nurse and pharmacist, versus usual care (i.e., no home care), had reduced overall mortality, but in-hospital deaths were similar (218). Two hospital at-home services in lieu of acute hospitalization in the United Kingdom and Spain found no difference in mortality between patients treated for acute COPD exacerbation in hospital and those treated at home (4, 10).

Some improvements in health-related quality of life (HRQL; general health perceptions, functional status, symptoms) have been demonstrated in several trials of specialist- or generalist-provided home care to patients with COPD or cancer. Terminal patients with a variety of diagnoses reported modest improvements in HRQL in a trial of a large home-based primary care intervention conducted in a Department of Veterans Affairs setting (219), and patients with lung cancer receiving home care had later onset of symptom distress and less social dependency than usual care patients (220). Canadian patients with COPD who received self-management education at home had significant improvements after 4 months on the impact and activity scales of the St. Georges Respiratory Questionnaire, but only the impact improvements were maintained at 12-month follow-up (221). Patients receiving respiratory APN-directed home care had fewer depressive symptoms and better ADL functioning than patients receiving usual care, but there were no differences between groups in dyspnea or IADL ability (52). A variety of other respiratory home care interventions in several countries have found no differences in HRQL between treatment and control patients (46–48, 216–218, 222, 223).

Studies examining HRQL outcomes for programs providing home care in lieu of acute hospitalization have produced mixed results. One hospital at home system found no difference in HRQL between patients treated for COPD exacerbation at home and those treated in hospital (4), but another found higher ratings of HRQL in the home treatment group than in the hospitalized group (10). No difference was found in HRQL ratings between patients randomized to home and hospital treatment of COPD exacerbation in a study of outcomes of an acute respiratory assessment service (11). Acuity levels and availability of care could explain the varied outcomes.

Canadian patients who received exercise teaching and an initial training session at home as part of a COPD self-management program showed no improvement in 6-minute walk distance at 4- and 12-month follow-up (221). In contrast, Strijbos and colleagues (162) found improvements in exercise and dyspnea in patients receiving home and outpatient pulmonary rehabilitation, and higher levels of well-being in patients receiving home rehabilitation compared with a control group. The home rehabilitation group maintained improvements in exercise and dyspnea longer than the outpatient group. The difference could relate to one home session (221) versus continued care (162).

There is evidence supporting success in changing health behaviors as a result of respiratory home care interventions, although the extent of change has been modest. Despite only slight improvement in knowledge about disease and medication use in patients with COPD receiving visits by respiratory specialist nurses in the United Kingdom, these patients had a higher rate of smoking cessation than patients not receiving the intervention (47). Hermiz and coworkers (222) tested a brief, but comprehensive, home care intervention for patients with COPD discharged from hospital or emergency room. Although patients in the treatment group had increased knowledge about disease management, there were no differences in the number of patients who smoked, or received influenza or pneumonia immunizations. Hernandez and coworkers (10) found greater disease knowledge, better compliance, better inhaler technique, and home rehabilitation (airway clearance maneuvers, nutrition, and upper extremity strength) in hospital at home patients compared with patients treated for exacerbation in hospital. Bourbeau and colleagues (224) found more frequent use and higher skill level in controlled breathing techniques in patients receiving a COPD self-management program than in usual care patients. Qualitative interviews with self-management patients revealed they had made significant lifestyle changes as a result of the program, including use of energy conservation techniques, an action plan for exacerbations, controlled breathing techniques, and a regular exercise program. All studies that supported positive health behavior change involved protocol development with both physicians and nurses.

Few studies of traditional home care have examined patient and caregiver satisfaction. An early study in the United Kingdom found equal levels of satisfaction with care in the group receiving respiratory home care and those not receiving it (48), but another early clinical trial found that many patients thought they benefited from respiratory nurse visits and wished for them to continue (47). Veterans Administration patients with a variety of nonterminal medical (including COPD) or surgical conditions who received home-based primary care services reported greater satisfaction with care; their caregivers experienced improved HRQL and decreased burden (219). Dutch respiratory patients reported greater satisfaction with knowledge, and information and advice, given by respiratory specialist nurses compared with general community nurses (223).

Several studies of home care in lieu of hospitalization have included patient and caregiver satisfaction as an outcome of care. Patient satisfaction in studies looking only at respiratory patients is consistently rated higher by patients receiving acute care at home than by those treated in hospital (8, 10, 11, 225). However, a small subgroup of patients with COPD included in a study of general medical and surgical patients receiving hospital at home care was the only subgroup that preferred hospital care to home care (7). The small subgroup sample size limited generalizability of the findings. In another study led by nurses, patients enrolled in a community-based chronic home management program were very satisfied (91%) or quite satisfied (9%) with the service (12).

Because the hospital is the most expensive setting for health care, a major goal of traditional and innovative home care programs is reduction of hospital days and emergent care. Evidence that traditional home care models reduce the use of these acute care services is mixed.

Hospital episodes were fewer for treatment patients than control subjects after 1 year in two studies (217, 221), and for patients receiving home health care from respiratory APN-directed nurses throughout a home health episode of care (52), but no differences were found in most other studies (48, 216, 219, 220, 222, 223). Total hospital days were reduced in two quasi-experimental studies (226, 227), and two randomized controlled trials (217, 221). However, total hospital days did not differ for patients with lung cancer receiving specialized home health care, generalist home health care, or usual care (220). Length of stay was reduced in the two quasi-experimental studies (226, 227), and one clinical trial (221), but was unchanged in three additional controlled trials (48, 216, 220). In one early clinical trial in the United Kingdom, patients receiving respiratory home care had the same number of admissions, and spent more time in the hospital for respiratory problems than did patients not receiving home care. Hospitalizations for nonrespiratory problems did not differ between groups (47).

Three studies found reduced emergency room use with home care intervention (217, 221, 226), but two others did not (216, 227). One study (227) found fewer clinic visits made by patients receiving home care, and another saw fewer acute care (presumably unscheduled clinic) visits with respiratory APN-directed home care (52). Two other studies (48, 216) saw no difference in outpatient visits with respiratory home care intervention. Bourbeau and coworkers (221) found a reduction in unscheduled physician visits, but no difference in scheduled visits, between intervention and control patients. Length of stay in home health care was shorter for patients receiving home health services from specialist-led nurses than for those receiving usual care (52).

As expected, home care in lieu of acute hospitalization produced shortened hospital lengths of stay in several studies (6, 9, 10). Hernandez and coworkers (10) also found fewer emergency room visits for the hospital at home group. However, most studies found no difference in number of hospitalizations (4, 6, 7, 10, 228), total hospital days, or use of outpatient services (11) as a result of hospital at home or acute respiratory assessment services. Increased positive outcomes were seen in studies that provided home care as a substitute service for hospitalization, with physician-integrated protocols, rather than home care as an add-on service at home with minimal physician contact after hospitalization (10). Most U.S.-based studies provided an add-on service. Still, one descriptive study of a chronic home management program for patients with COPD with three or more hospitalizations in the year before entering the program revealed that 40% of patients had no hospitalizations and 25% had only one admission in the subsequent year (12).

Two economic analyses of the direct costs of COPD in the United States estimated the proportion attributable to home health care. Wilson and colleagues (229) looked at emphysema and chronic bronchitis separately. Overall, home health care accounted for $263 million of a total COPD expenditure of $14.5 billion per year. Estimated home health care costs for emphysema were 1.6% of total costs, and for chronic bronchitis, 2.8% of total costs. Ward and coworkers (230) estimated total costs at $6.6 billion, of which 5%, or $309 million, was attributable to home health care. Despite the differences in these analyses, it is clear that home health care represents a small proportion of total expenditures currently used to treat COPD.

Two additional analyses of COPD treatment costs found that hospitalization represented the largest portion of total treatment costs (231, 232). Neither analysis included home health care costs in their evaluations. Sullivan and coworkers (232) noted that nearly 50% of Medicare costs are incurred by about 10% of patients with COPD. Hilleman and coworkers (231) stratified their sample by COPD severity, finding significant increases in hospital and emergency room costs with increasing disease severity. These results suggest that reducing frequency or length of hospitalization is the key to reducing total costs of COPD. Chest physicians and pulmonologists need to recognize that earlier hospital discharge, and avoidance of emergency room or hospital care altogether, are important premises on which home health referrals can be based.

Moreover, the value of unpaid informal caregiving by family members is often ignored in economic evaluations of health care costs. Bergner and coworkers (46) imputed the cost of unpaid assistance to patients with COPD receiving home care by respiratory specialist nurses and generalist nurses, and those receiving usual (office-based) care. No differences were found between groups, but the informal caregiving cost for male, married patients (i.e., wives foregoing salary) with COPD was three times the cost of such care for all other patients. An estimate of the extent of family caregiving to patients with chronic lung disease and associated family activity limitations is that these patients received 5.1 more hours per week of assistance than elders without lung disease (233). Extrapolation of these hours to the national population of chronic lung disease patients resulted in an estimated $2 billion annual cost for informal caregiving. These estimates of demands for caregiver time have potentially important ethical implications as family members are asked to take on increasingly complex health care interventions, as well as economic and practical implications in the face of changes in home health reimbursement and other cost containment efforts. Chest physicians and pulmonologists should address the policy implications, such as Medicare home care limitations, of these “hidden” costs of caring for their patients with COPD.

Because hospital care is the most expensive mode of health care delivery, it is expected that the same services provided in the home are less expensive. However, home health services also incur costs, and they may be ordered for the sickest patients, or in addition to hospital care. It is difficult to demonstrate cost savings for postacute home health care under these conditions. Research to date has not demonstrated significant cost savings for traditional postdischarge respiratory home care, although a meta-analysis of studies examining reduction in hospital days for general medical–surgical adult home care recipients did find a small to moderate effect on cost savings with home care (19).

Early studies attempted cost comparisons of specialized respiratory home care with standard home care. The single randomized controlled trial of this type in the United States found that both interventions were expensive, and that home health care delivered by specially trained respiratory nurses was more expensive than standard home health care while producing similar health-related quality of life outcomes (46). Two quasi-experimental studies (226, 234) found some cost savings with specialized respiratory care, in large part due to a reduction in hospital costs in the year subsequent to the intervention. Hughes and colleagues (235) compared severely disabled Veterans Administration patients receiving hospital-based home care with a control group on several outcomes; about 10% of patients in both groups had primary respiratory diagnoses. No significant difference in cost was found, but diffusion of findings due to varied severity is likely.

U.S. data demonstrating cost-effectiveness of home care for respiratory patients are not available. A small sample of patients with COPD was included in a multicenter Department of Veterans Affairs clinical trial that examined outcomes of a home-based primary care program aimed at identifying high-risk patients and providing continuity of care across settings and organizational boundaries (219). Program costs were higher for patients receiving home-based primary care than for those not receiving it, without equivalent clinically significant outcomes. This suggests that physician/APN clinic-based visits for primary care are cost-effective.

Older data suggest that home care is less costly than hospital care for patients with chronic respiratory conditions, especially for home care of patients receiving long-term intravenous therapy or chronic ventilator care (116, 236–238). However, reduced mortality (47), and increased length of hospital stay for patients receiving a home care intervention (48), were identified as potential causes of increased health care costs for British patients with chronic lung disease. Patients receiving home care services were living longer and using more resources over time.

More recently, Canadian patients administered intravenous antibiotic therapy at home for a variety of infections, including pneumonia, experienced significant cost savings compared with the same course of treatment administered in hospital (115). However, a review of studies examining cost-effectiveness of home intravenous antibiotic therapy for cystic fibrosis identified a number of serious deficiencies in study design that make it difficult to conclusively argue that home administration is less costly than inpatient treatment (239). Factors such as avoidance of negative consequences, and patient and family satisfaction, were not reported in the clinical trial studies.

Evidence for cost savings with hospital at home and acute respiratory assessment programs is mixed. Two randomized controlled trials of supported discharge in the United Kingdom (hospital at home) using cost minimization analysis produced estimates of cost savings for patients discharged early from general medicine, general surgery, geriatrics, and orthopedics (240), but cost increases for patients with COPD discharged early (241). Although patients with COPD in the latter study spent fewer days in hospital, home care costs offset savings from early discharge. On the other hand, studies in Spain and the United Kingdom compared costs for patients with COPD evaluated by a nurse/physician acute respiratory assessment service and randomized to treatment of exacerbation at home or hospital. Postdischarge protocols were clearly defined. Significant cost savings were gained when patients were cared for at home instead of the hospital (9–11).

In the United States, the federal government reimburses episodic home health care through the Medicare program. Medicare was legislatively designed to cover acute episodes of illness, and reimburses skilled professional (nursing, medical social services, and physical, occupational, and speech therapy) care ordered by a physician for homebound patients (242). Nonmedical personal care services are reimbursed only when authorized by a physician for a patient who is receiving skilled services. Most other payers follow the Medicare lead in setting policies for coverage of home health care services.

Respiratory care equipment and home oxygen therapy may be reimbursed under Medicare, Medicaid, the Department of Veterans Affairs, or private insurance. As with home care in general, private payers usually follow Medicare's lead in determining coverage. Criteria for Medicare coverage of home oxygen are the same as the prescription criteria described earlier in this statement, and are consistent with the Global Initiative for Chronic Obstructive Lung Disease (73) standards for long-term oxygen prescription. Although home medical equipment companies also make home visits to deliver, maintain, and instruct in the use of medically necessary equipment and supplies such as nebulizers and oxygen, they are not reimbursed for their teaching and monitoring activities.

Escalating Medicare expenditures for home health care and a desire to limit future increases led to implementation of a home health care prospective payment system in 2000 (242). The Balanced Budget Act of 1997 reduced the fee for home oxygen by 25% in 1998 and an additional 5% in 1999 (2). The results of these programmatic changes for patients with chronic respiratory disease have often been a reduced number of skilled visits per episode of care, and cost shifting from insurance to patients for oxygen and supplies. Monitoring of mortality rates, health-related quality of life outcomes, hospital readmissions, and rates of nursing home placement is needed to assess the long-term effect of the prospective payment system on care outcomes.

In summary, reimbursement issues are a driving force in allocation of home health care to respiratory patients in the United States. Although home health care may offer a less costly alternative to hospital or institutional care, inconsistent research findings and suboptimal research designs have been inadequate to demonstrate cost-effectiveness of traditional home care. Innovative models for home respiratory care show some potential for reducing total costs of caring for respiratory patients if they can produce significant reductions in hospital costs. Systems in which home care demonstrates cost savings are those such as in Canadian provinces and Spain, in which home care and hospital care are funded from the same source. Systems in which home care is substituted for hospital care (not added to posthospital care as in the United States) are cost-effective (10). Nurses, chest physicians, and pulmonologists must work daily within U.S. policy limits.