special report

Integrated Health System for Chronic

Disease Management*
Lessons Learned From France
Mary Stuart, ScD; and Michael Weinrich, MD

Rated number one in overall health system performance by the World Health Organization, the
French spend less than half the amount on annual health care per capita that the United States
spends. One contributing factor may be the attention given to chronic care. Since the mid-1900s,
the French have developed regional community-based specialty systems for patients with chronic
respiratory insufficiency or failure. COPD is the major cause of respiratory failure, the fourth
leading cause of death in the United States, and its prevalence is increasing. Despite the clinical
success of home mechanical ventilation and the potential for cost savings, providing such services
in the United States remains a challenge. Lessons from France can inform the development of
cost-effective chronic care models in the United States In this article, we review the French
experience in the context of the United States Supreme Court’s Olmstead decision, mandating
that people in “more restrictive settings” such as nursing homes be offered community-based
supports. We suggest that regional demonstration projects for patients with chronic respiratory
failure or insufficiency can provide an important step in the development of effective chronic
care systems in the United States (CHEST 2004; 125:695–703)

Key words: chronic care model; home ventilation; Olmstead decision; respiratory insufficiency or failure

Abbreviations: ALLP ⫽ L’Association de la Region de Lyon pour la Lutte contre la Poliomyélite;

ANTADIR ⫽ Association Nationale pour le Traitement á Domicile de l’Insuffisance Respiratoire Chronique;
CRAM ⫽ Caisse Regionale d’Assurance Maladie; CRI ⫽ chronic respiratory insufficiency; HMV ⫽ home mechanical
ventilation

A (Olmstead)
landmark US Supreme Court legal decision
and its vigorous implementation as
1
part of the President’s “New Freedom Initiative”2– 4
have provided both the judicial mandate and political
support from leadership to create opportunities for
significant change in the organization and delivery of
*From the Department of Sociology and Anthropology (Dr.
Stuart), Director, Health Administration and Policy Program,
University of Maryland Baltimore County; and the National
Center for Medical Rehabilitation Research (Dr. Weinrich),
National Institute of Child Health and Human Development,
National Institutes of Health, Bethesda, MD.
This research was partially supported by the Robert Wood
Johnson Foundation. The views presented are those of the
authors.
Received December 2, 2002; revision accepted August 6, 2003.
Reproduction of this article is prohibited without written permis-
sion from the American College of Chest Physicians (e-mail:
permissions@chestnet.org).
Correspondence to: Mary Stuart, Department of Sociology and
Anthropology, UMBC 1000 Hilltop Circle, Baltimore, MD 21250;
e-mail: stuart@umbc.edu
services for patients with chronic diseases and dis-
abilities. In this context, we believe that the French
experience with regional medical systems for pa-
tients with chronic respiratory insufficiency (CRI)
can be useful. The major purpose of this article is to
For editorial comment see page 365
report what was done in France, why it works, and
why/how it is relevant to the chronic disease crisis in
America as a community health network approach to
long-term care and service delivery. We propose that
the demonstration of a community-driven solution
for CRI, using home mechanical ventilation (HMV),
can establish a model with more universal applica-
tion in the United States
Finding effective strategies for managing chronic
diseases, which account for three quarters of US
health-care costs, has been identified as one of the

www.chestjournal.org CHEST / 125 / 2 / FEBRUARY, 2004 695

major challenges facing health care in the 2lst cen-
tury,5 one that the US health system is not well-
organized to meet.6 Reports detailing the resurgence
of health-care costs underscore the urgency of ad-
dressing this problem7–9 and further highlight the
importance of identifying cost-effective models of
care for patients with chronic and disabling health
conditions.10 A looming crisis in long-term care11 and
the generally poor access to health care for individ-
uals with chronic disabilities12 provide compelling
reasons to seek alternatives to institutionalization.
Our study of the French system began as an
initiative, funded in part by the Robert Wood John-
son Foundation, to identify international best prac-
tices that might serve as models for the development
of integrated health systems for high-cost patients in
the United States. The French system was selected
for review by a team of eight health professionals
from the United States, based on the advice of
European health officials and experts from the
World Health Organization. Beginning in the early
1980s, the French system was studied by Allen
Goldberg, MD, FCCP, under the auspices of the
World Rehabilitation Fund13 and the World Health
Organization.14 –20 In addition, the system had been
widely studied in France.21 To conduct this study, we
used qualitative research methods, including site
visits and interviews, a review of published literature,
reports, and administrative data. Our team included
both specialists and a primary care physician, two
health services researchers, a senior public health
official, a private sector chief executive officer, and
the medical director of a university-affiliated reha-
bilitation hospital. To understand the structure, pro-
cess, and financing of the French system, the team
conducted site visits and semi-structured interviews
with senior public health officials, providers, and
patients in the Lyon region of France in 1995. We
conducted follow-up interviews in year 2000 to
determine the status and impact of changes in
financing that were being considered during our first
visit. Subsequently, a field research team under the
direction of a registered nurse spent a week in Lyon
observing the home nursing care and daily life of
patients living in the community.
In October 2000, the National Center for Medical
Rehabilitation Research convened a workshop at the
National Institutes of Health22 to discuss the issues
around HMV. Panelists uniformly noted that obtaining
affordable personal care services is crucial for the care
of ventilator patients and remains very difficult. Access
to knowledgeable health professionals and appropriate
equipment were also identified as major problems.22 In
this article, we discuss the implications of our findings
regarding the French system for the organization and
delivery of health care in the United States.
696
French System for Patients With CRI
To fully understand the significance of the French
system for US health reform, it must be placed in an
historical perspective. The key to its development
was the evolution of two systems in the regions
surrounding Lyon and Paris, the two largest cities in
France. The regional system serving Lyon and the
surrounding area is known as L’Association de la
Region de Lyon pour la Lutte contre la Poliomyélite
(ALLP) and began in 1960. The system serving Paris,
known as Association d’Entraide des Polios et
Handicapés, began in 1967. These were local/re-
gional approaches that were developed to address
the needs of institutionalized polio patients with CRI
who wanted to leave the hospital. These networks
evolved through the efforts of physicians, working
with other caring and concerned leaders in govern-
ment and the community, who wanted to find cost-
effective alternatives to institutionalization and to
utilize special respiratory units for the development
of intensive care.
La fédération Association Nationale pour le Trait-
ement á Domicile de l’Insuffisance Respiratoire
Chronique (ANTADIR), the national French system
for CRI patients, was proposed in a 1978 study
written by Andre Ludot and established under his
direction in 1980. The national organization was
proposed as a way to observe the results (by estab-
lishing a national observatory), to establish more
uniform services across the nation (through the
development of additional regional associations), and
to provide several cost-saving functions (such as mass
purchasing of capital equipment). Leadership from
the regional associations, including ALLP and Asso-
ciation d’Entraide des Polios et Handicapés, were
instrumental in the founding of ANTADIR, which
was intended to enhance the role of the regional
associations by providing a national observatory.
Today, data collection and reporting on population-
based outcomes remain among the most important
functions of ANTADIR.
The development of regional systems throughout
France to make services more geographically acces-
sible to CRI patients was mandated by national
legislation in 1991. Today, La fédération ANTADIR
features 26 nonprofit regional associations that pro-
vide 24-h service, 7 days a week. Providing both
medical specialty care and home treatment, this
network currently serves 50,000 ventilator-assisted
or oxygen-dependent adults and children, compris-
ing nearly all ventilator-dependent patients and 70%
of those receiving home oxygen therapy in France.23
ANTADIR is considered to be unique for its national
scope and extensive regional organization, as well as
its extensive database.24,25
Special Report
 The prototype for the regional systems of ANTA-
DIR, and the focus of our study, is ALLP, serving
Lyon and the surrounding area. Lyon is the second
largest city in France, and the regional system serves
a population of approximately 6 million. Dominique
Robert, MD, FCCP, who has directed this system
for 30 years, is internationally recognized for his
medical research and practical contribution to the
well-being of patients with respiratory diseases. Hô-
pital de la Croix Rousse in Lyon houses the inpatient
program, including a general ICU (16 to 20 beds), a
respiratory ICU (8 to 10 beds), a respiratory unit for
long-term home equipment (8 beds), a sleep labora-
tory (4 beds), and daily clinics.
The respiratory intensive care program at Hôpital
de la Croix Rousse was initiated in the early 1950s to
treat polio patients and subsequently pioneered the
development of HMV. Centre Medical Bellecombe-
Esperance, located about 90 min by car from Lyon,
was established to provide vital secondary services
for ALLP. Between 1965 and 1980, most polio
survivors were discharged to home. By 1981, ALLP
was already serving 445 patients.13 As the need for
inpatient care for polio patients declined, Hôpital de
la Croix Rousse began to treat patients with respira-
tory failure of all causes. By 2000, ALLP had grown
to oversee the respiratory care of ⬎ 4,000 patients
living in the community with ventilators, continuous
positive airway pressure, and other respiratory assis-
tance (Dr. Dominique Robert; personal communi-
cation; 2000). Of note is the increasing proportion
over the years of ALLP resources devoted to main-
taining patients with CRI in the community (eg,
continuous positive airway pressure for patients with
sleep apnea) [Dr. Dominique Robert; personal com-
munication; 2000].
The relationship between the Hôpital Croix-
Rousse and Bellecombe is extremely important.
Each has its own purpose and function, and there is
close interaction. The Bellecombe model has the
following vital functions: it can serve patients with
acute destabilization; it provides subacute care (not
only weaning); it offers long-term care (an institu-
tional alternative); it conducts preparation for suc-
cessful hospital discharge planning; and it offers
respite care (an institutional alternative).
Patients in acute failure typically are admitted to
Croix-Rousse Hôpital. After stabilization, they are
referred to Bellecombe (where the average length of
stay is 30 days) for continuing treatment and hospital
discharge planning. In addition to receiving referrals
from Croix-Rousse and general hospitals, Belle-
combe provides “tune-ups” for patients who are
living in the community and operates a domiciliary
www.chestjournal.org
facility for patients who do not have families or
supported living options that enable them to live in
the community.
ALLP plays a major role in integrating intensive
care, intermediate care, and home respiratory care.
The first organization of this type in France, ALLP
has subsequently served as a model for similar
organizations in other regions. To promote continu-
ity and confidence, nurses from ALLP begin working
with patients and their families in the ICU at Hôpital
de la Croix Rousse and at the secondary centers to
prepare for discharge from the hospital. Once a
patient is discharged to the community, ALLP pro-
vides continuing oversight to see that equipment is
appropriate for the patient’s needs, that it is being
used properly, and that there is respiratory suffi-
ciency. Routine home visits are scheduled every 2
months, however, ALLP staff are always on call and
will make emergency visits for technical problems.
Most of these patients live with their families. Our
team observed HMV patients ranging in age from
early childhood to the late 80s, who lived at home
with family members. However, some patients live
without direct caregiving from family members. For
example, we observed a vivacious 72-year-old woman
who lives alone in her own apartment, requires 16 h
of ventilator support in a 24-h period, does her own
shopping, and attends the opera and symphony
weekly. We also observed another patient living in
the domiciliary facility located on the hospital
grounds at Bellecombe. This patient requires too
much care to live independently and lacks the family
to provide the support for home care.
Other community-based options in the Lyon re-
gion are provided by Foyer ALLP, which offers
group living arrangements for adults who require
24-h ventilator support and assistance with all major
activities of daily living. In addition, ventilator users
have adopted the independent-living model and
manage their own funds, home, and lives. For
example, we observed four individuals who had
organized themselves to achieve maximum indepen-
dence. They had pooled their disability income and
supplements to rent and modify an apartment for
wheelchair accessibility, hire community nursing and
personal care attendants, and purchase a van. ALLP
provides support for their ventilator care. They
successfully engage in entrepreneurial activities, go
shopping, attend cultural events, have friends, take
vacations, and lead lives that appear to be rich and
full.
The major limitation of ALLP is that it does not
provide professional and nonprofessional caregivers
in the home other than support for oxygen therapy
and HMV.26 ALLP will help to locate community
nurses and personal care assistants to provide gen-
CHEST / 125 / 2 / FEBRUARY, 2004 697
eral home care, and it maintains regular communi-
cation with patients’ primary care physicians. Asso-
ciations of health professionals who make home visits
provide the personnel required to support and/or
supplement the informal family caregivers. Since
patients with chronic respiratory failure or CRI often
experience other comorbidities and require assis-
tance with activities of daily living other than oxygen
therapy, access to a variety of medical and personal
care personnel is essential for home care patients,
and is required to support informal family caregivers
as well individuals in group homes. For further
discussion of the regional systems, readers are re-
ferred to Goldberg’s earlier publications.13–20
Clinical Outcomes
ANTADIR, ALLP, and other components of the
French health-care system were not established as
randomized prospective experiments in patient care
or health-care organization and delivery, so it is
difficult to isolate and attribute changes in patient
outcomes over time to the effects of these organiza-
tions. Nonetheless, from its inception ANTADIR has
used the large scale of its population base to system-
atically study and optimize the parameters for home
oxygen therapy.27,28 The 10-year survival rate for
patients receiving home oxygen therapy or mechan-
ical ventilation has been evaluated and is roughly
comparable to those of previous studies in other
European countries,29 although previous studies
have utilized narrower inclusion criteria, and differ-
ences between smoking habits in different countries
make rigorous comparisons difficult. More recently,
ANTADIR conducted a controlled trial30 of contin-
uous positive airway pressure for obstructive sleep
apnea and demonstrated a 40% decline in the num-
ber of accidents involving these patients.
French Financing
France has a universal health insurance system.
This system is employer-based, offers consumers the
freedom to choose their providers and hospitals, and
includes both for-profit and nonprofit providers.
Health insurance is compulsory, and the unem-
ployed are subsidized through a centralized indigent
fund administered by the Ministry of Health.31 Pub-
lic health policy is determined by “les caisses,” which
are quasi-public agencies. Overall national policy is
determined by the major caisse, Caisse Nationale
d’Assurance Maladie, which is equivalent in function
and significance to the Center for Medicare and
Medicaid Services in the United States. The Caisse
698
Nationale works with the governmental agencies,
notably the Ministry of Health and Ministry of Social
Security. It is important to note that France, like
most nations of the world (the one exception being
the United States), has a separately designated Min-
istry of Health. Regional health policy is determined
by the regional caisse (Caisse Regionale d’Assurance
Maladie [CRAM]), which negotiates contracts with
the regional associations. Local health funding ad-
ministration is the responsibility of the local caisse
(Caisse Primaire d’Assurance Maladie).
The health policy organization (ie, the CRAM) for
the Rhone-Alps Region played a key role in the
development of the ALLP. The CRAM was respon-
sible for negotiating budgets for hospitals in the
region and worked with Dr. Robert in financing the
development of home care. By the 1980s, the expan-
sion of this system was encouraged as a response to
limited capacity and pressures to contain the growth
of health-care cost expenditures in France. The
success of the regional organization at that time was
due to the fact that there was funding available with
clear cost accounting and contracts with a defined
payment system based on the therapeutic require-
ments of patients. Payments for long-term oxygen
therapy included the cost of running the machines
and maintenance, as well as administrative overhead
for the regional association and the purchase of
materials. A special payment system, which was used
by the regional associations for equipment and so-
cial/technical supportive services, was put into place
for major purchases. Thirteen cost centers were
established for the ALLP, each corresponding to a
specific duty. The flexibility of the budgetary author-
ity of the CRAM for the region is considered to be a
key factor in the evolution of ALLP (Christine
Idnounaz, Agent Change des Questions Hospitalie-
ies, and Alain Deblasi, regional medical advisor for
the CRAM of the Rhône-Alps Region; interviews
and notes; June 12, 1995, and January 20, 2000).
The growth of for-profit systems began in the early
1990s, leading to increasing concerns regarding qual-
ity as well as to payment inequities. In 1995, the time
of our first visit, payments for respiratory care to
for-profit providers were 40 to 50% higher when
compared to nonprofit providers. Yet for-profit pro-
viders tended to refer the sickest and most complex
patients to the nonprofit systems (which are required
to take all referrals). Nonprofit providers were strug-
gling with increasing patient acuity and capped
budgets. Responding to these inequities, the Na-
tional Health Insurance undertook an extensive eval-
uation of long-term oxygen therapy from both a
medical and economic perspective. By 1999, the
Special Report
payment systems had been revised, and both types of
providers were being paid the same using an updated
and expanded formulary.
The new formulary, which details a wide array of
services and procedures that might be provided to a
CRI patient, has reduced the discrepancy in pay-
ments between nonprofit and for-profit providers.
Through the new formulary, the National Health
Insurance seeks to promote the development of
appropriate levels of care by adjusting payments to
the patient’s disability level, the amount of care
required, and the location (home or institution)
where the care is provided (Christine Idnounaz,
Agent Change des Questions Hospitalieies; inter-
views and notes; January 20, 2000; and Alain Deblasi,
regional medical advisor for CRAM, the National
Health Insurance of the Rhône-Alps region; inter-
views and notes; June 12, 1995 and January 20,
2000).
Prevalence and Costs of Chronic
Respiratory Patients in the United States
Chronic respiratory failure is caused by intrinsic
pulmonary diseases (including restrictive diseases,
developmental disorders, infectious diseases, and,
most commonly, COPD) and diseases affecting the
chest wall, component muscles, and their neurologic
control (most commonly poliomyelitis, cervical spine
injury, amyotrophic lateral sclerosis, muscular dys-
trophies, and kyphoscoliosis). The American Associ-
ation for Respiratory Care defines a chronic ventila-
tor-dependent patient as “. . . a patient who must
receive mechanical ventilatory support for at least six
hours of each 24 h period and has been receiving
mechanical ventilation for 30 days or more.”32 The
American Association for Respiratory Care surveyed
acute care hospitals in the United States in 1990,
arriving at an estimate of 11,000 chronic ventilator-
dependent patients in acute care hospitals. Thirty-
nine percent of patients were over the age of 65
years. An equal percentage of the patients were
either awaiting placement in other facilities or re-
mained in the hospital because of difficulty arranging
financing for their care in alternative facilities.
The annual costs in acute care hospitals for pa-
tients requiring chronic mechanical ventilation were
estimated at $3.2 billion. Make33 reviewed the epi-
demiology of long-term ventilation outside acute
care hospitals. Extrapolations from individual state-
wide data yielded an approximate US prevalence of
4.9 chronic ventilator-dependent patients per
100,000. Seneff et al34 studied the 6-month costs of
chronic ventilator-dependent patients in hospitals
and long-term care facilities. The average annualized
www.chestjournal.org
Table 1—Deaths Due to COPD in the United States
and France in 1998*
Variables United States France
COPD deaths 212,353 30,743
All deaths 2,337,256 534,003
COPD, % of deaths 4.8 3.3
Population 270,298,500 58,852,600
COPD cases estimated 15,300,000 2,633,000
COPD prevalence, per 1,000 population 57 45
*Sources: Deaths and Population from World Health Organization
database62; COPD prevalence estimates from Stang et al.63
total hospital cost was $156,948, while the cost in
long-term care was $113,650. Using these figures
and the population estimates above, the total annual
cost of caring for ventilator-dependent patients in
long-term care is approximately $1.6 billion, with
total annual costs in all settings approaching $3.4
billion.
Patients with less advanced disease (ie, those with
symptomatic respiratory insufficiency) represent a
far greater population with vastly greater current
health-care costs, leading to potentially even greater
costs. Of the US population, 6.8% have significantly
diminished lung function and 8.5% (16 million indi-
viduals) have obstructive lung disease.35 Annual
health-care resource utilization by this population in
1993 was estimated at $15 billion.36 Additionally,
“2% of women and 4% of men in the middle-aged
work-force meet the minimal diagnostic criteria for
the sleep apnea syndrome.”37
As noted in Table 1, COPD (International Classi-
fication of Diseases, 9th revision, codes 323 to 325)
was responsible for ⬎ 200,000 deaths in the United
States in 1998. It is the fourth leading cause of death
in the United States, comprising 4.8% of all deaths in
the United States. The proportion of all deaths due
to COPD in France is slightly lower at 3.2%. The
prevalence of COPD is 57 cases per 1,000 in the
United States compared to 45 per 1,000 in France.
However, there is considerable uncertainty as to the
exact prevalence rates for COPD due to underdiag-
nosis38 and different definitions.39 Thus, we cannot
conclude from these data that COPD patients in the
United States have inferior outcomes to those in
France, but certainly overall mortality figures do not
suggest that the care in the United States is superior.
What is all too abundantly clear is that the preva-
lence of COPD is continuing to rise39 and that the
current systems of care in the United States for
patients with complex medical problems are showing
signs of increasing strain. Many states face significant
budget deficits for 2003 and are moving to cut
expenditures for health care, especially Medicaid
benefits.40 The costs for health insurance have re-
CHEST / 125 / 2 / FEBRUARY, 2004 699
sumed their double-digit annual increases, and con-
cern over the organization and financing of Medicare
is again on the Congressional agenda.41
Experience With HMV in the United States
HMV for patients with respiratory failure also
began in the United States as a result of the polio
epidemics. With the decline of polio after the intro-
duction of polio vaccines, the specialized centers and
expertise to manage these patients atrophied.42
HMV became a relative rarity until the development
of the “Katie Beckett” waivers, developed in the
1980s under the leadership of Surgeon General
Koop, allowed Medicaid funding for children requir-
ing HMV.43 Thus, the data describing the recent US
experience with HMV have been confined largely to
small demonstration projects financed through Med-
icaid waivers.44 – 46 Despite the limited experience,
consensus on technology and guidelines for the use
of HMV are well-developed,47 and the safety is
well-established.48 Bach et al46 found a net annual
savings of $176,137 per patient with 30 patients
maintained with HMV personal care attendants and
home care, compared with the costs of their care in
institutions prior to discharge home. Sevick and
Bradham49 reviewed the studies on the direct med-
ical costs for HMV and performed a survey of formal
and informal caregiver services provided to patients
in 37 states. For at least two thirds of patients, they
found that long-term ventilation at home was less
costly than institutional care, even when the lost
wages of the caregivers were factored into the
home-care costs.
Despite the potential cost savings, few programs
for HMV have been conducted outside of the
Medicaid population. Most notably, the Kaiser
Foundation Health Plan conducted a demonstra-
tion project including 158 patients for ⬎ 7 years.
The cost of durable medical equipment and 16 h
of daily attendant care in this program was $78,000
annually. The demonstration ended in 1993 and
was incorporated into regular plan benefits. With
funding from the Pennsylvania Department of
Health, the Children’s Hospital of Philadelphia
has developed and maintained a statewide pro-
gram for children with chronic respiratory failure
since 1979.22 A particularly vexing problem for
families with ventilator-dependent children is that,
in some states, Medicaid benefits for these chil-
dren terminate when they reach the age of major-
ity, and there are few institutional options avail-
able for ventilator-assisted children.45
700
Recent Trends Affecting Chronic Care
As a result of the Olmstead decision, “thousands of
people currently living in ‘more restrictive settings’
such as public institutions and nursing homes must
be offered housing and community-based sup-
ports.”50 The lead agency for Olmstead planning
efforts in most states is the state Medicaid agency.
The Olmstead decision potentially requires that
Medicaid beneficiaries receiving long-term mechan-
ical ventilation who currently reside in institutional
settings be offered the opportunity for ventilation
therapy at home. The revised interpretation of a key
Medicare eligibility criterion (“homebound”)51 now
loosens the previous restriction of home care services
to only those Medicare beneficiaries who were com-
pletely homebound. This could allow for Medicare
coverage of home-care services to HMV patients
who can function outside the home, although the
range of permissible activities is still limited. In
addition, the Department of Health and Human
Services plans initiatives to alleviate the shortage of
direct-service workers for community care.52
Lessons Learned From France
What are the lessons from France and the Lyon-
naise regional system for CRI that might be useful as
states seek to comply with Olmstead?
1. The importance of physician leadership. Our
study of the Lyonnaise regional system, as well
as other international best practices,53 high-
lights the importance of physician leadership
coupled with support from key public officials.
Throughout our interviews, public officials and
others cited Dr. Robert’s dedication to quality
patient care, commitment to research, and
work ethic as factors in Lyon’s international
reputation and in the development of the
French system. Dr. Robert, on the other hand,
was clear that a good working relationship with
public officials, particularly at CRAM, which
had the financing authority, was essential to the
early development and continued success of
community-based services.
2. Appropriate financial bench-marking. Regional
oversight with the flexibility to develop a new
service was cited as a key factor in the initial
start-up of ALLP. However, by the time of our
first visit, ALLP faced serious financial prob-
lems. The National Health Insurance under-
took a comprehensive review of respiratory
services that resulted in stability for ALLP and,
at the same time, established ALLP as the
benchmark for quality of care and costs in caring
for patients with CRI.
Special Report
 3. Critical number of patients. A repeated theme
in Lyon is that systems must serve enough
patients to promote clinical competency and to
offer economies of scale. This is consistent with
a growing body of literature regarding the
importance of volume54,55 and specialty
care56,57 in outcomes for patients with medi-
cally complex conditions.
4. Continuity of care. Because ALLP is part of a
national network, patients who want to travel or
move to another region can receive the same
type of care. The service is organized around
the common need for a certain type of technol-
ogy for home care, rather than a specific diag-
nosis. To facilitate continuity, senior clinicians
in ALLP provide oversight for both inpatient
and home care.
5. Personal care services. The availability of such
services, either from family or purchased from
community providers, is essential to maintain-
ing patients requiring ventilation in the com-
munity.
6. Quality of life. As mentioned in our previous
examples, it is possible for even profoundly
disabled patients to lead meaningful lives in the
community.
7. Assistive technology. Specialty systems such as
ALLP provide an environment conducive to
the development and efficient use of assistive
technology. Patients are able to try face masks,
respirators, and other equipment, where indi-
vidual comfort and success may vary based on
product specifications, before-purchasing. The
volume of patients facilitates recycling assistive
equipment. Researchers at the regional spe-
cialty hospital are at the forefront of developing
new technology in response to their patient’s
needs.
8. Regional/local organization. The evolution of
ANTADIR, beginning in Lyon followed by
Paris, and ultimately forming a national net-
work of services, provides a model for innova-
tion, and for the diffusion of new technology
and service integration models. There is con-
siderable variation among the regional systems.
France is not homogenous despite the harmo-
nizing presence of ANTADIR. Each regional
association evolved differently due to local par-
ticipants (ie, physicians, patients, and commu-
nity leaders) and resources.
Conclusion
France is rated by the World Health Organization
as No. 1 in overall health system performance among
www.chestjournal.org
all 191 member states58 (by comparison, the United
States ranked No. 37). The French health system is
considerably less costly than the US system. France
spends $2,115 per capita per year on health care, or
9.3% of the gross domestic product, as opposed to
the United States, which spends $4,358, or 12.9% of
gross domestic product. Between 1990 and 1999,
health spending increased 2.1% in France, com-
pared with 3.0% in the United States. The differ-
ences in cost can be explained partially, but not
totally, by lower physician salaries and lower admin-
istrative costs for health care in France.59 Another
factor may be the chronic care provided by the
regional population-based prevention and disease
management systems such as ALLP that combine
specialized medical care, assistive technology, and
home support.
Perhaps the most fundamental lesson from France
is the emphasis on community through the regional
associations. Innovative approaches to chronic, high-
cost medical conditions utilizing appropriate tech-
nology, specialty care, and delivery systems can
improve delivery of care, reduce costs, and prevent
institutionalization. The system for the care of pa-
tients with severe lung disease in France links critical
care centers with step-down pulmonary rehabilita-
tion programs in low-cost regional hospitals and
home ventilator maintenance programs. Patients
who would be permanent nursing home residents in
the United States can be maintained at lower cost in
their homes and with better quality of life.
We suggest that by focusing on the regional level,
as France has done, and as has been demonstrated to
be effective for trauma and neonatal intensive care in
the United States, a national system for HMV pa-
tients can be developed. Furthermore, we think that
Olmstead provides not only the means but the
imperative to do so. Patients requiring HMV are a
relatively small group of high-cost patients who are
dispersed throughout the country. Few providers or
health plans have substantial experience with such
patients in their management. A system of regional
centers for the management of chronic ventilation
could serve the needs of patients from all payers.
Such a system would return patients to live in the
least restrictive settings, and to utilize home care,
secondary centers, and acute care centers of excel-
lence.18,20 The experience in France and limited
experience in the United States suggest that this
approach would be at least budget-neutral.
The development of a national system for HMV
could provide a model for the management of severe
chronic diseases. The French experience suggests
that the way to begin is with one or more “bench-
mark” state or regional systems. This idea is consis-
tent with Denmark’s successful experience in trans-
CHEST / 125 / 2 / FEBRUARY, 2004 701
forming institution-based long-term care into an
efficient national system of home and community-
based services.60 It is also consistent with recent
recommendations from the National Academy of
Sciences Institute of Medicine regarding ways to
improve care for patients with chronic illnesses.61
References
1 Olmstead v. L. C., 527 US 581 (1999)
2 Office of the Press Secretary, White House. Executive Order
13217: Community-based alternatives for individuals with
disabilities; press release, June 19, 2001. Available at: http://
www.whitehouse.gov/news/releases/2001/06/20010619.html.
Accessed January 16, 2004
3 US Department of Health and Human Services. Secretary
Thompson announces creation of the Office on Disability:
press release, July 31, 2002. Available at: http://www.hhs.gov/
news/press/2002pres/20020731d.html. Accessed January 16,
2004
4 US Department of Health and Human Services. HHS urges
states to continue to expand home and community based care
for disabled residents: press release, August 12, 2002. Avail-
able at: http://www.hhs.gov/news/pres/2002pres/20020812.html.
Accessed January 16, 2004
5 Glasgow RE, Orleans CT, Wagner EH, et al. Does the
chronic care model also serve as a template for improving
prevention? Milbank Q 2001; 79:579 – 612
6 Anderson G, Knickman JR. Changing the chronic care system
to meet people’s needs. Health Aff (Millwood) 2001; 20:146 –
160
7 Blumenthal D. Controlling health care expenditures. N Engl
J Med 2001; 344:766 –769
8 Moon M. Medicare. N Engl J Med 2001; 344:928 –931
9 Dudley RA, Luft HS. Managed care in transition. N Engl
J Med 2001; 344:1087–1092
10 Rosenbaum S. Medicaid. N Engl J Med 2002; 346:635– 640
11 Stone RI. Long-term care for the elderly with disabilities:
current policy, emerging trends, and implications for the
twenty-first century. New York, NY: Milbank, 2001
12 DeJong G, Palsbo SE, Beatty PW, et al. The organization and
financing of health services for persons with disabilities.
Milbank Q 2002; 80:261–301
13 Goldberg AI. Home care services for severely physically
disabled people in England and France: case-example; the
ventilator-dependent person—international exchange of ex-
perts and information in rehabilitation: fellowship report.
New York, NY: World Rehabilitation Fund, 1983
14 Goldberg AI. Home care and alternatives to hospitalization in
France for medical technology dependent children and adults
with severe chronic respiratory insufficiency: the associative
system; fellowship report. Geneva, Switzerland: World
Health Organization, 1986
15 Goldberg AI, Faure EAM. Home Care for life-supported
persons in France: the regional association. Rehabil Lit 1986;
47:60 – 64
16 Goldberg AI. Home care for life-supported persons: is a
national approach the answer? Chest 1986; 90:744 –748
17 Goldberg AI. Home care for life-supported persons: the
French system of quality control, technology assessment and
cost containment. Public Health Rep 1989; 104:329 –335
18 Goldberg AI. Mechanical ventilation and respiratory care in
the home for the 1990s: some personal observations. Respir
Care 1990; 35:247–259
19 Goldberg AI. Home health for the chronically ill in the
702
United States: the market-oriented system. In: Hollingsworth
JR, Hollingsworth EJ, eds. Care of the chronically and
severely ill: comparative social policies. New York, NY: Aldine
de Gruyter, 1994
20 Goldberg AI. Health care networks for long-term mechanical
ventilation. In: Hill NS, ed. Long-term mechanical ventila-
tion. New York, NY: Marcel Dekker, 2001
21 Kurz C. National survey by ANTADIR of patients treated at
home for chronic respiratory insufficiency in corresponding
sector. Soins 1984; 423:33–36
22 Stuart M, Weinrich M. Protecting the most vulnerable: home
mechanical ventilation as a case study in disability and
medical care; report from an NIH conference. Neurorehabil
Neural Repair 2001; 15:159 –166
23 La fédération ANTADIR. La fédération ANTADIR en chif-
fres. Available at: http://www.antadir.com/internet/federation/
frame_federation.html. Accessed January 16, 2004
24 Goldberg A. Outcomes of home care for life-supported
persons: long-term oxygen and prolonged mechanical venti-
lation. Chest 1996; 109:595–596
25 Chailleux E, Fauroux B, Binet F, et al. Predictors of survival
in patients receiving domiciliary oxygen therapy of mechani-
cal ventilation: a ten-year analysis of ANTADIR observatory.
Chest 1996; 109:741–749
26 Launois R. Pooling public and private funds in the patient’s
interest: the case for long-term care insurance. Soc Sci Med
1996; 43:739 –744
27 ANTADIR. Home controls of a sample of 2,414 oxygen
concentrators: Sous Commission Technique ANTADIR. Eur
Repir J 1991; 4:227–231
28 Pepin JL, Barjhoux CE, Deschaux C, et al. Long-term oxygen
therapy at home: compliance with medical prescription and
effective use of therapy; ANTADIR Working Group on
Oxygen Therapy Association Nationale de Traitment á Do-
micile des Insuffisants Respirations. Chest 1996; 109:1144 –
1150
29 Chailleux E, Fauroux B, Binet F, et al. Predictors of survival
in patients receiving domiciliary oxygen therapy of mechani-
cal ventilation: a 10-year analysis of an ANTADIR Observa-
tory. Chest 1996; 109:741–749
30 Krieger J, Meslier N, Lebrun T, et al. Accidents in obstructive
sleep apnea patients treated with nasal continuous positive
airway pressure: a prospective study. Chest 1997; 112:1561–
1566
31 Redmon DP, Yabloski PJ. The nominal and real effects of
hospital global budgets in France. Inquiry 1995; 32:174 –183
32 American Association of Respiratory Care. A study of chronic
ventilator patients in the hospital. Dallas, TX: American
Association of Respiratory Care, 1991
33 Make B. Epidemiology of long-term ventilation. In: Hill NS,
ed. Long-term mechanical ventilation. New York, NY: Marcel
Dekker, 2001
34 Seneff MG, Wagner D, Thompson D, et al. The impact of
long-term acute-care facilities on the outcome and cost of
care for patients undergoing prolonged mechanical ventila-
tion. Crit Care Med 2000; 28:342–350
35 Manino DM, Gagnon RC, Petty TL, et al. Obstructive lung
disease and low lung function in the United States: data from
the National Health and Nutrition Examination Survey 1988 –
1994. Arch Intern Med 2000; 160:1683–1689
36 National Lung Health Education Program. Strategies in
preserving lung function and preventing COPD and associ-
ated diseases: the National Lung Health Education Program
(NLHEP). Chest 1998; 113(suppl):123S–163S
37 Young T, Palta M, Dempsey J, et al. The occurrence of
sleep-disordered breathing among middle-aged adults.
N Engl J Med 1993; 328:1230 –1235
Special Report
38 Petty TL. Scope of the COPD problem in North America.
Chest 2000; 117(suppl):326S–331S
39 Mannino DM. COPD: epidemiology, prevalence, morbidity
and mortality, and disease heterogeneity. Chest 2002;
121(suppl):121S–126S.
40 Medicaid chopped out. Economist 2003; 366:30 –31
41 Rosenbaum S. Law and the public’s health: Medicare reform.
Public Health Rep 2003; 118:162–164
42 Fisher DA. Long term management of the ventilator patient
in the home. Cleve Clin Q 1985; 52:303–306
43 Koop CE. Families caring for disabled need long-term sup-
port. Health Prog 1986; 67:52–54
44 Fields AI, Rosenblatt A, Pollack MM, et al. Home care
cost-effectiveness for respiratory technology-dependent chil-
dren. Am J Dis Child 1991; 145:729 –733
45 Downes JJ, Para MM. Costs and reimbursement issues in
long term mechanical ventilation of patients at home. In: Hill
NS, ed. Long-term mechanical ventilation. New York, NY:
Marcel Dekker, 2001
46 Bach JR, Intintola P, Alba AS, et al. The ventilator-assisted
individual: cost analysis of institutionalization vs. rehabilita-
tion and in-home management. Chest 1992; 101:26 –30
47 Make BJ, Hill NS, Goldberg AI, et al. Mechanical ventilation
beyond the intensive care unit: report of a consensus confer-
ence by the American College of Chest Physicians. Chest
1998; 113:289S–344S
48 Srinivasan S, Doty SM, White TR, et al. Frequency, causes,
and outcome of home ventilator failure. Chest 1998; 114:
1363–1367
49 Sevick MA, Bradham DD. Economic value of caregiver effort
in maintaining long-term ventilator-assisted individuals at
home. Heart Lung 1997; 26:148 –157
50 O’Hara A, Day S. Olmstead and supportive housing: a vision
for the future. Lawrenceville, NJ: Center for Health Care
Strategies, 2001
51 Health Care Financing Administration. Clarification of the
homebound definition under the medicare home health
benefit: program memorandum intermediaries transmittal
A-01–21; February 6, 2001, Baltimore, MD: Health Care
Financing Administration, 2001
www.chestjournal.org
52 US Department of Health and Human Services. Delivering
on the promise: compilation of individual federal agency
reports of actions to eliminate barriers and promote commu-
nity integration. Available at: http://www.hhs.gov/newfreedom/
final. Accessed January 16, 2004
53 Weinrich M, Stuart M. Provision of methadone treatment in
primary care medical practices: review of the Scottish experience
and implications for US policy. JAMA 2000; 283:1343–1348
54 Birkmeyer JD, Siewers AE, Finlayson EV, et al. Hospital
volume and surgical mortality in the United States. N Engl
J Med 2002; 346:1128 –1137
55 Bardach NS, Zhao S, Gress DR, et al. Association between
subarachnoid hemorrhage outcomes and number of cases
treated at California hospitals. Stroke 2002; 33:1851–1856
56 Wu AW, Young Y, Skinner EA, et al. Quality of care and
outcomes of adults with asthma treated by specialists and
generalists in managed care. Arch Intern Med 2001; 161:
2554 –2560
57 Tu JV, Austin PC, Johnston KW. The influence of surgical
specialty training on the outcomes of elective abdominal
aortic aneurysm surgery. Vasc Surg 2001; 33:447– 452
58 World Health Organization. The World Health Report 2000
Health Systems: improving performance. Geneva, Switzer-
land: World Health Organization, 2000
59 Reinhardt UE, Hussey PS, Anderson GF. Cross-national
comparisons of health systems using OECD data, 1999.
Health Aff (Millwood) 2002; 21:169 –181
60 Stuart M, Weinrich M. Home- and community-based long-
term care: lessons from Denmark. Gerontologist 2001; 41:
474 – 480
61 Corrigan JM, Greiner A, Erickson SM, eds. Fostering rapid
advances in health care: learning from system demonstra-
tions: Institute of Medicine. Available at: http://www.nap.edu/
catalog/10565.html. Accessed January 16, 2004
62 World Health Organization. Mortality database. Available at:
http://www3.who.int/whosis/menu. Accessed January 16,
2004
63 Stang P, Lydick E, Silberman C, et al. The prevalence of
COPD: using smoking rates to estimate disease frequency in
the general population. Chest 2000; 117(suppl):354S–359S
CHEST / 125 / 2 / FEBRUARY, 2004 703