First German Disease Management Program for Breast Cancer
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First German Disease Management Program for
Breast Cancer
Christoph Rupprecht
The first disease management program con- In 2000 the Allgemeine Ortskrankenkasse
tract for breast cancer in Germany was signed (AOK) Rheinland, a large regional German
in 2002 between the Association of Regional of statutory health insurance company, con-
Physicians in North-Rhine and the statutory ducted a sur vey among females with
health insurance companies in Rhineland. At breast cancer to recognize deficiencies of
the heart of this unique breast cancer disease therapy and identify specific patient’s
management program is a patient-centered needs (Düsseldorf, 2000). Only 71 percent
network of health care professionals. The pro- of females felt that they had received suffi-
gram’s main objectives are: (1) to improve the cient medical information, and only 52 per-
quality of treatment and post-operative care cent had been given information concern-
for breast cancer patients, (2) to provide time- ing the availability of psychosocial counsel-
ly information and consultation empowering ing. A year later, in 2001, the Advisory
the patient to participate in decisionmaking, Council for Concerted Action in Health
(3) to improve the interface between inpatient Care2 at the Federal Ministry of Health and
and outpatient care, and (4) to increase the Social Security analyzed health care
number of breast-conserving surgeries. deficits in chronic diseases affecting large
numbers of the population. Data were
BACKGROUND obtained with specific questionnaires for
medical societies, patient support organi-
A breast cancer scandal broke in the zations, health insurance companies, and
1990s in the city of Essen, North-Rhine1, social agencies. A report by the Advisory
Germany (Koch, 2000). Qualifications of a Council for Converted Action in Health
local pathologist came into question after a Care demonstrates a dominance of acute
review of the clinical histories of 76 medical care and a neglect of prevention
patients revealed recurring inconsisten- and rehabilitation, both indicative of a lack
cies. Arson in the pathologist’s laboratory of awareness of the social, psychological,
prevented a retrospective histological environmental, and biographic references
review. Based on the pathology reports in of chronically ill patients.
clinical records at least 300 females had For breast cancer the following prob-
been diagnosed with breast cancer. In the lems were identified:
absence of a second opinion, many of these • Lack of a quality-assured program for
females had undergone mastectomy. early detection of cancer (breast screen-
ing according to the European guide-
1 Part of the Federal State North-Rhine-Westphalia, Germany.
lines of 1994) (DeWolf and Perry, 1996).
The population in North-Rhine (Rhineland) is 9.6 million.
• Inadequate diagnostic procedures (too
The author is with Allgemeine Ortskrankenkasse Rheinland –
Die Gesundheitskasse. The statements expressed in this article
many mammograms for females under
are those of the author and do not necessarily reflect the views
or policies of the Allgemeine Ortskrankenkasse Rheinland – Die 2 The council consists of well-known scientists in the fields of
Gesundheitskasse or the Centers for Medicare & Medicaid medicine, public health, health care economics, sociology, and
Services (CMS). finances.
HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1 69age 50) and inexperienced radiologists between the association of regional physi-
(too many operators of mammography cians in North-Rhine and the statutory
equipment see too few cases). health insurance companies in Rhineland,
• Too many breast amputations (mastecto- the AOK Rheinland being the largest.
my instead of lumpectomy). Selected regional hospitals were included
• Too many cases with high-dose in the contract. For the first time, an entire
chemotherapy with or without stem cell region offered a quality-assured, struc-
support. tured disease management program for
• Too often expensive conventionally females with breast cancer who are
equipped technical post-operative care insured under the statutory health insur-
instead of symptom-oriented care. ance company.
Based on these and the findings for the The goal of the project is with a patient-
chronic diseases, the Advisory Council for- centered network of radiologists, gynecol-
mulated a series of recommendations for ogists, pathologists, oncologists, radiologi-
treatment of chronically ill patients and cal therapists, rehabilitation specialists,
outlined requirements for quality assur- and psycho-oncologists to improve the
ance, patient contributions, coordination, quality of patient care for females with
evidence-based care, prevention, and train- breast cancer in North-Rhine. The patient
ing and education of patients and care is guaranteed treatment according to state-
providers. In response, the Federal health of-the-art standards of evidence-based
authority outlined structured disease man- medicine. The objectives of the disease
agement programs under the responsibili- management program for breast cancer
ty of the statutory health insurance compa- patients can be summarized as follows:
nies and regulated the admission to such • To reduce errors in the diagnostic
programs. The risk-structure compensa- process.
tion scheme was modified to assure statu- • To improve the quality of treatment and
tory health insurance companies promot- post-operative care for breast cancer in
ing disease management programs for accordance with current operative stan-
patients with chronic diseases do not face dards or standards of adjuvant therapy.
disadvantages compared to statutor y • To provide detailed information and con-
health insurance companies that do not sultation to surger y, throughout the
introduce disease management programs. course of treatment, and during post-
Admission criteria were defined for the dis- operative care.
ease management programs of diabetes • To empower the patient to participate in
type 2 and breast cancer; followed by those decisions about treatment.
for chronic obstructive lung disease, dia- • To assure that sufficient time between
betes type 1, and coronary heart disease. diagnosis and surgery is allowed for
Described here are the design and experi- decisionmaking.
ences of the first disease management pro- • To increase the number of breast-con-
gram for breast cancer. serving surgeries.
• To offer psychosocial support through-
PROGRAM OBJECTIVES out the treatment process.
• To facilitate the interfaces between hos-
The first contract for a disease manage- pitals, local physicians, rehabilitation,
ment program for breast cancer in and providers of medical supplies.
Germany was signed in October 2002 In terms of cost analysis, cost-effectiveness
70 HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1or cost-utility analysis, the profile of the dis- PATIENT’S ROLE
ease management program for breast can-
cer is not intended to reduce cost. The females with breast cancer are at
the center of the disease management pro-
PROVIDER’S ROLE gram. They are to be informed in a timely
and structured fashion about their disease
The cooperation of the different health and are involved in the decisionmaking
care providers is essential to disease man- process. Physicians and patients discuss
agement programs. The treating gynecolo- each step of diagnosis and therapy.
gist usually coordinates diagnostics and Detailed consultations before and after
treatment with other providers. Gynecolo- surgery (generally involving relatives) and
gists participating in the program must regular consultations during therapy and
undergo disease management program- post-operative care are essential parts of
related training curricula and participate in the program. Counseling is made available
quality working groups. The coordinating to help the patients deal with psychological
gynecologist informs the patient about the effects (e.g. fear, depression) and social
disease management program, counsels consequences (in family, partnership, etc).
the patient about joining, enrolls the They are not involved in organizational
patient, assures that the patient is treated duties of the program. Patient participation
according to the program principles, and in the program is voluntary and free of
initiates individual treatment steps (e.g., in charge. The physician’s office fee, an addi-
cooperation with a breast cancer center). tional payment of $12 due quarterly for vis-
This physician is also responsible for data its to a general practitioner or coordinating
collection (patient’s history, date of diagno- physician, is waived for program partici-
sis, staging information, treatment strate- pants on enrollment.
gy, outcome, etc.) and submission of that
data to a non-partisan database managed PATIENT’S ELIGIBILITY
as a joint venture between the health insur-
ance companies and the Association of Patients diagnosed with breast cancer
Regional Physicians. within the last 5.5 years are eligible if
Participation of statutory health insur- there is histological evidence of disease.
ance company physicians in a disease man- Generally, patients are newly diagnosed and
agement program is voluntary. Participat- no previous therapy has been provided. The
ing physicians must subscribe to the quali- patient must be willing to actively contribute
ty standards as defined in the disease man- and participate in the breast cancer disease
agement program contract and are moni- management program. The program is open
tored by the Association of Regional to all patients insured with statutory health
Physicians. Selected hospitals with special insurance companies; privately insured
breast cancer centers in North-Rhine are patients are not eligible for the program.
also participating in the disease manage- Participation in the breast cancer dis-
ment program. ease management program generally ends
after 5 years. If the patient fails two times to
HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1 71participate in a recommended training for assistance and information. The team
course or the coordinating gynecologist offers support in regard to breast cancer
does not submit the required documenta- itself or cancer-related issues, such as
tion forms two times within 3 years, the household aid, additional care (breast
patient can be excluded from the program. prosthesis, wigs), travel expenses, alterna-
tive diagnostics, and treatments. In addi-
ADJUVANT THERAPIES AND tion, the AOK Rheinland produces the
FOLLOWUP AOK Breast Book, (Das AOK Brustbuch,
2003) a patient’s guide to treatment and
An integral part of the therapy is timely decisionmaking, and publishes the journal
care with adjuvant therapies and remedies JaVita, a periodical for cancer patients with
as well as the introduction of specific reha- up-to-date information on malignant dis-
bilitation measures as needed (e.g. psy- eases and their treatment.
chotherapy, lymph drainage).
Post-operative care after breast cancer REIMBURSEMENT
must start on termination of the primary
therapy, no later than 6 months after histo- Standard outpatient medical services
logical confirmation of the diagnosis. Post- continue to be reimbursed the traditional
operative care involves more than monitor- way within a global budget. Disease man-
ing the disease; it also contributes to the agement program-related services provid-
patient’s psychological, physical, and social ed by the coordinating gynecologist, such
rehabilitation. Followup examinations are as enrollment of the patient, documenta-
performed two times a year. The coordi- tion, counseling services before and after
nating physician is responsible for follow- hospital stay, accompanying talks, and psy-
up and initiation of any diagnostic or thera- chosocial counseling, are reimbursed out-
peutic procedure the patient may need side of the global budget. Physicians in
(e.g., in the case of post-traumatic stress cooperating hospitals receive no extra
syndrome, fear disturbances, and depres- remuneration for their inpatient medical
sive disturbances). services.
The Association of Regional Physicians’
ADDITIONAL BENEFITS guarantees that the disease management
program contract reimbursement of partic-
In addition to the disease management ipating physicians is listed separately in the
program package, the AOK Rheinland calculation papers.
offers a number of other non-medical ser- Every quarter, the association submits
vices to insured members. These include proof of the calculated services to the
the services of an adviser on cancer reha- health insurance companies. The physi-
bilitation who will contact the patient on cians do not suffer any financial risk due to
request, visit in the hospital or elsewhere, their patients’ morbidity; this is covered by
discuss rehabilitation options, and the the health insurance companies. Within
rehabilitation program, and assist with any the risk structure compensation scheme,
problems or special requests. At the AOK the morbidity risk is indirectly balanced
Clarimedis Service Center, an all female between the health insurance companies
team of physicians, psychologists, nurses, for patients in accredited disease manage-
and social insurance experts are available ment programs. In the future, new legal
72 HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1regulations for developing networks of program (analysis of strengths and weak-
integrated care in Germany may be used to nesses/need for further action), the repre-
bundle several disease management pro- sentatives meet at least once a year with
grams together. the board of the self-support group.
Currently, 976 of 1,382 gynecologists in
PRELIMINARY EXPERIENCE the area of North-Rhine participate in the
disease management program for breast
The non-partisan database maintained cancer. Gynecologists in single practices
as a joint venture between health insurance who typically have few breast cancer
companies and the Association of Regional patients face a number of practical prob-
Physicians will allow scientifically evaluat- lems. They may find the program less
ing the efficacy and quality of therapy attractive and may be less willing to coop-
applied within the disease management erate. Consequently, the AOK Rheinland
program for breast cancer. Currently, it is will explore whether hospitals or existing
too early to provide this type of informa- group practice structures should play a
tion. stronger role in the disease management
A report on the disease management program. It has also become evident that
program for breast cancer published in standardization and quality control in the
December 2004 (Altenhofen et al., 2004) diagnostic process (pathology, radiology)
gives descriptive information on the char- are necessary requirements.
acteristics of patients enrolled. At the time
of analysis, 5,669 patients had been BREAST CANCER CENTERS
enrolled. The average age was 60.6 years
(standard error 11.8). Twenty-one percent With the implementation of the breast
of patients were over age 70, and 24 per- cancer disease management program the
cent of 5,682 patients were diagnosed prior need for contracts between hospitals and
to menopause (Figure 1). There was no insurance companies strengthened the
significant difference in T staging among concept of centralized care. The establish-
the different age groups (data not shown). ment of breast cancer centers (Richards,
The objective to treat 50-60 percent of the Sainsbur y, and Kerr, 1997; Lüngen,
patients with breast-conserving surgery Rupprecht, and Plamper, 2004) was in part
was reached (Figure 2, data not shown). As the result of the initiation of the disease
of January 31, 2005, 9,421 patients are management program. Simultaneously, the
enrolled in the disease management pro- local government (Ministry of Health of
gram for breast cancer in North-Rhine. North-Rhine-Westphalia) had established
With patients in the center of the pro- criteria for breast cancer centers (Fischer,
gram, it is anticipated that they will play an 2003), which are compatible with the stan-
important role in improving the program. dards required for the breast cancer dis-
Valuable information can be gathered by ease management program. A certification
random telephone surveys and by interac- procedure was established for the breast
tion with patients’ self-support groups. cancer centers.
Females from one of these groups (Women Breast cancer centers work according to
after Cancer) participated in the develop- international guidelines in an interdiscipli-
ment of the disease management program nary fashion and cooperate with hospitals
for breast cancer. To exchange experi- in the area as “satellites.” A center has to
ences during the implementation of the perform a minimum of 150 primary breast
HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1 73Figure 1
Age Distribution Percent of Patients’ Enrolled in a Breast Cancer Disease Management Program
in Germany: 2003
Implausible
1
Specification
30-39 Years 3.40
14.90
Age Distribution
40-49 Years
50-59 Years 24.90
60-69 Years 34.90
70-79 Years 16.70
80 Years or Over 4.30
0 5 10 15 20 25 30 35 40
Percent
1 N=5,682.
SOURCE: (Altenhofen, L., et al., 2004.)
cancer surgeries per year. If several hospi- discharge report must reach the disease
tals are affiliated with one center, the mini- management program coordinating gynecol-
mal number of surgeries per surgical ogist no later than 3 days after the patient’s
department, per hospital is 100 per year; discharge to guarantee an optimal interface
with a minimum of 50 surgeries, per sur- between inpatient and outpatient care.
geon. Obviously, the number of surgeries Currently, 39 centers have signed con-
is not a quality criterion by itself, but rather tracts with the disease management pro-
an indicator for the experience of the hos- gram. In January 2005, an additional 35
pital or surgeons. Defined quality parame- centers have been assigned to the regional
ters will have to be added. In addition to hospital plan by the State government.
minimal numbers of procedures, partici- Instead of 250 hospitals performing breast
pating hospitals have to ensure continuing cancer surgery, 74 will be the providers in
medical education of their staff as well as 2006. Each of the certified breast cancer
cooperation with self-support groups. centers will have a catchment area with a
The contract between the disease man- population of 360,000 to 450,000.
agement program for breast cancer and
breast cancer centers specifies a number of EARLY DETECTION
details which are thought to optimize care.
Two examples are: (1) the chief surgeon is Annually, about 48,000 females are diag-
required to see the patient prior to surgery nosed with breast cancer in Germany;
and on the day of surgery, and (2) a detailed 19,300 of these females are under age 60.
74 HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1Figure 2
Percent Distribution of Breast-Conserving Surgeries, by Tumor Dimension in Germany: 2003
80
71.90
70
61.40
60
50.70
50
Percent
40
30
21.60
20 17.50
10
0
Tis T1 T2 T3 T4
Staging
NOTE: Tumor staging according to UICC: 2002 TNM Classification of Malignant Tumours, 6th ed. (Soblin, L.H.,
Wittekind, Ch., eds). John Wiley & Sons, New York City, NY 2002. Tis: carcinoma in situ, Ti: Tumor less than 2 cm in
greatest diameter, T2: Tumor more than 2 cm and less than 5 cm in greatest diameter, T3: Tumor more than 5 cm in
greatest diameter, and T4: Tumor of any size with extension to the chest wall or skin.
SOURCE: (Altenhofen, L., et al., 2004.)
The number of females dying of breast can- Gibis, and Mühlich, 2003). Although
cer is estimated at 18,000 per year, which screening implies the risk of a false posi-
represents approximately 18 percent of tive diagnosis and critical reviews like
overall cancer mortality. The relatively those of the Nordic Cochrane Institute
high mortality is a distinct characteristic of (Olsen and Gotzsche, 2001) have to be
breast cancer. Therefore, improved early taken seriously, early detection represents
detection is seen as a chance to curb the an important step forward.
high mortality rate. In the highly regulated risk-structure
A national breast cancer screening pro- compensation scheme, screening pro-
gram for females age 50 to 70 was intro- grams for breast cancer cannot be a consti-
duced in Germany in 2004. This program tutive element of the disease management
entitles a female to a mammography every program, but maybe attached to it. With
2 years. The new screening program is respect to the administrative level within
expected to reduce breast cancer mortality the AOK, the breast cancer disease man-
by 3,500 cases per year. Physicians offer- agement program and early detection are
ing screening must prove their qualifica- combined. Patients already enrolled in the
tions and perform at least 3,000 examina- program can participate in breast self-
tions per year. By 2005, Germany plans to examination classes, mind-body courses,
have established 80 screening units for and seminars.
early detection of breast cancer (Köhler,
HEALTH CARE FINANCING REVIEW/Fall 2005/Volume 27, Number 1 75OUTLOOK FOR DISEASE The success of disease management pro-
MANAGEMENT PROGRAMS grams in Germany will depend on a number
of critical factors. One prerequisite is a com-
The introduction of a morbidity-adjusted mon action of the Association of Regional
risk structure compensation scheme in Physicians with all statutory health insur-
Germany scheduled for January 1, 2007, ance companies despite a strong competi-
will provide an additional incentive to the tive market. All programs need to be
development of disease management pro- endorsed by legal measures and adjust-
grams. The disease management pro- ments of framework conditions. Insurance
grams of the second generation—replac- companies, health care providers, and
ing earlier quality assurance structures in patients will have to maintain an ongoing
the area—will be more target-group-orient- dialog; and lastly, the patient must be
ed and flexible than their predecessors. In empowered to play an active role in deci-
a complex, fragmented health care deliv- sionmaking. Compared to the health care
ery system the importance of disease man- systems in the U.S.3, with a high number of
agement programs goes beyond patient insurance carriers (Enthoven, 2003) the
navigation. Disease management pro- current circumstances in Germany may be
grams have the opportunity to overcome more favorable for the introduction of quali-
obsolete treatment structures and to sub- ty health care management.
stitute these with efficient, high-quality
centers of care. At the same time, success- REFERENCES
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