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Chapter 3 Economic Costs of Urinary Incontinence in Germany
3.2 From a Medical to an Economic Approach
The medical impact of urinary and fecal incontinence is mainly based on prevalence
and necessary diagnostics and treatment (Fig. 3.1). In terms of economic impact, the
number of treatments and costs per patient are derived. Standardized procedures and
mean treatment costs as defined in DRGs (diagnosis-related groups) can be utilized to
determine the direct costs.Additionally, indirect costs such as lost productivity have to
be considered to derive the economic impact. Of course the intangible costs cannot be
calculated but are reflected in,for example, quality of life (Neubauer 1989).
3.3 Direct Costs
Urinary incontinence has a considerable financial impact on both individuals and the
healthcare system. One United States study has reported costs of US $26.3 billion in
1995 for individuals aged 65 years and over, or US $3,565 per incontinent individual
(Wagner and Hu 1998).
In 1990, Hu estimated the costs of incontinence in the USA to 10 US $billion (US $41
per inhabitant), not including indirect costs (Hu 1990). According to Milsom and coworkers,the major contributors to the economical impact are care for incontinent persons in nursing homes and the use of incontinence aids (Milsom et al.1993). Milsom et
al. (1993) have estimated the costs for managing urinary incontinence in Sweden to almost 2 billion Swedish krone in 1990,2% of the total health expenses (US $38 per inhabitant). Several studies have demonstrated that urinary incontinence is an important factor predicting institutionalization of geriatric or demented patients, and according to Ouslander and Kane urinary incontinence accounts for 3%–8% of the costs
of nursing home care (Ouslander and Kane 1984). Another study on costs in nursing
homes calculated direct costs of incontinence of US $17.21 per resident per day (US
$6,282 per resident per year) (Frenchmann). In Norway the National Insurance spends
27
Fig. 3.1. From a medical to an economic approach. Medical impact of incontinence is mainly
based on prevalence and necessary diagnostics and treatment. Standardized procedures and
mean treatment cost as defined in DRGs (diagnosis related groups) help in deriving the direct
costs.Additionally,the indirect costs such as lost productivity and intangible costs must be considered to derive the economic impact

3
28
Günter Neubauer,Sandra Stiefelmeyer
approximately over 200 million Norwegian krone on incontinence pads (US $7 per inhabitant) (Sandvik et al. 1993). However, the costs of urinary incontinence go beyond
the money spent.
A recent study (Dowell et al.1999) developed the Dowell-Bryant Incontinence Cost
Index (DBICI) to measure the total direct costs of urinary incontinence.This study applied the DBICI to 100 consecutive community-dwelling women attending continence
clinics for treatment of their urinary incontinence. Personal cost estimates included
weekly expenditure on pads, incontinence-related laundry and miscellaneous costs
(clothing, dry cleaning, replacement of urine-soaked carpets), while costs for treatment estimates included visits to healthcare professionals,surgical procedures, medications and costs associated with travel and time off work in the previous year (Dowell et al. 1999).
Similar to this study an Australian study estimated the total annual costs of this urinary incontinence at about Australian $710.44 million, or Australian $387 per incontinent woman,comprising Australian $338.47 million in treatment costs and Australian
$371.97 million in personal costs. An estimated 60% of women with incontinence in
1998 were aged 40 years or over. Assuming the prevalence of incontinence remains
constant and allowing for inflation, they project that the total annual costs in 20 years’
time will be Australian $1,267.85 million, 93% of which will constitute costs associated
with women aged over 40 years (Doran et al.2000).
In Fig. 3.2 the results of all given studies are summarized showing cost differences
per country ranging from US $7–41 per incontinent person and day.
3.4 Indirect Costs
Unfortunately the indirect costs of incontinence (urinary and fecal) have not been
evaluated scientifically but are believed to be larger than direct costs.They include the
payment of disability claims for patients with incontinence who are no longer able to
work and lost wages related to quitting work or retiring prematurely.Also included are
family members or friends who help the patient with incontinence. The total amount
of these costs may exceed several hundreds of millions of US dollars per year.
Fig. 3.2. Direct incontinence costs for different countries. The costs per incontinent person per
day vary from US $7 to 41 per day depending on the country

Chapter 3 Economic Costs of Urinary Incontinence in Germany
3.5 Economic Impact in Germany
Healthcare costs for incontinence in individuals are difficult to estimate because most
affected individuals do not seek help in healthcare. Germany estimated in the year
2002 that there were 3.5 million people with a urinary incontinence disorder that required help or treatment. Over 1 million women between 12 and 65 years and 0.2 million men suffer from incontinence. In the age group above 65 years, there are 1.5 million women and 0.4 million men suffering from incontinence.
With an increasing proportion of older people in a population,the frequency of incontinence is growing. In people over 60 years of age, incontinence is even more frequent than cardiovascular disease and high blood pressure. More than 30% in a population over 40 years have problems with incontinence. The prevalence is remarkably
increasing in older persons,especially in women.
To investigate the costs in the German Healthcare System concerning incontinence,
we used data from the German nursing status,where four nursing care categories are
distinguished, ranging from 0 to 3 depending on the amount of help needed. Each
nursing care category is defined by the necessary time of care per patient and the severity of disability.Reimbursement varies with care status but does not cover all costs.
In German nursing homes, the supply per incontinent person is 7.4 min a week for
nursing status 0 and goes up to 42.6 min per week for nursing status 4.Based on these
nursing data, we calculated the nursing time per day, which range from 1.06 min per
day and incontinent person for nursing status 0 to 6.09 min for nursing status 4. The
costs for personal care per day range from 2.24 euros (nursing status 0) to 15.69 euros
(nursing status 4) per day. The costs for material such as pads average 2.56 euros per
day. According to these data,a total amount of 201.57 million euros per year is calculated for caring for the incontinent patient (Table 3.1).
For the estimated costs of incontinence for the entire health system (public and private health system) in Germany we calculated 3,970 million euros based on the year
2002.Total costs in different countries differ from US $1 million to US $10 billion in the
year 2002. Considering the demographic shift up to 2050, the German health care
29
Table 3.1. German prevalence and costs of incontinent persons in long-term public care insurance
Different costs and times of nursing for incontinent persons
Nursing status 0 1 2 3 4
h = 45,196 4,713 14,387 10,683 549
Time of nursing (min) 1.06 1.69 3.07 4.21 6.09
n Time of intervention (min) 3.2 2.8 3.5 4.5 3.9
Total time of nursing per day
and case (min) 3.39 4.73 10.75 18.95 23.75
Costs for personal
per day/case (euros) 2.24 3.12 7.09 12.51 15.68
Cost of material
per day/case (euros) 2.56 2.56 2.56 2.56 2.56
Total expenditure
per day/case (euros) 4.8 5.68 9.56 15.07 18.24
Total expenditure
(million euros) within 1 year 79.18 9.77 50.2 58.76 3.66

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30
Günter Neubauer,Sandra Stiefelmeyer
Fig. 3.3. Development of incontinence costs in German health care system in the future. Increasing costs of incontinence due to population until 2050. In the total cost the cost of personnel is
included: per minute (gross expenditure of the employer): 0.66 euros (median over all qualifications)
system will have to invest at least 6,266 million euros just for incontinence even with
constant costs assumed (Fig. 3.3). This means a doubling of the costs in 50 years only
based on at the demographic shift.
3.6 From Treating to Healing
The total costs of nearly 7 billion euros for the year 2050 is a conservative estimate of
the costs of resources used in treatment and care with urinary incontinence.If we were
to consider the reduced quality of life, lost earnings and the burden imposed on family, friends and care-takers, the total costs would be considerably higher, presumably
doubling the costs.
From a patient’s perspective, there are substantial personal costs involved in managing urinary and fecal incontinence. Research has found that patients are willing to
pay considerable amounts to reduce the symptoms of urinary incontinence. From a
health system perspective,the high costs of treatment and care of urinary and fecal incontinence clearly demonstrates that this is a serious medical condition that imposes
a considerable drain on scarce healthcare resources.
Philip and Miner (2004) conducted an investigation to improve the medical management algorithms of outpatient care designed to decrease urinary and fecal incontinence. They also request maximizing the utilization of available resources to medical
facilities such as skilled nursing centers and nursing homes, without forgetting that inpatient management algorithms in short-term and long-term care facilities should be
improved to decrease the economic burden of personnel and supplies while improving
physical and psychological outlook.
We need more and better information about the economic impact directly on patients and their families and social issues such as lost wages, disability insurance and
nursing homes on the consequences of urinary and fecal incontinence so that we do
not have to make as many assumptions to estimate economic impact.In particular,we

Chapter 3 Economic Costs of Urinary Incontinence in Germany
need to know the effect on quality of life and the potential benefits from reducing the
prevalence of urinary and fecal incontinence.Given the demographic shift towards an
older population and the escalating costs of healthcare provision and technology, this
has become urgent.
To solve the problem of incontinence and its great financial costs,the World Health
Organization (WHO) has recently focused on it.At the first international WHO consultation on incontinence 1998, a team of 24 committees considered the best way to
eradicate incontinence. The issue of costs, and our poor knowledge of the magnitude
of the problem, was a major concern. The WHO concluded that incontinence should
be considered a disease rather than a condition,in view of its debilitating effects upon
health and wellbeing. This implies greater focus on adequate treatment of this disease.
However, further research regarding the epidemiology and treatment of incontinence
is needed to reduce the costs and personal impairment of affected patients.
Acknowledgement
We thank Juergen Kramer for help with the figures.
References
Doran DM, Chiarelli P, Cockburn J (2000) Economic costs of urinary incontinence in commu-
nity-dwelling Australian women.Med J Aust 174:456–458
Dowell C, Bryant C, Moore K, Simons A (1999) Calculation of the direct costs of urinary inconti-
nence: the DBICI. Br J Urol 83:596–606
Frenchmann IB Cost of urinary incontinence in two skilled nursing facilities: a prospective
study. Available at: http://www.mmhc.com/cg/archiev/o01jan.shtml
Hollywood B, O’Dowd T (1998) Female urinary incontinence: another chronic illness. Br J Gen
Pract 48: 1727–1728
Hu T (1990) Impact of urinary incontinence on health care costs. J Am Geriatr Soc 38 :292–295
Milsom I, Ekelund P, Molanmder U, Arvidson L, Areskoug B (1993) The influence of age, parity,
oral contraception,hysterectomy and menopause on the prevalence of urinary incontinence
in women. J Urol 149 :1459–1462
Neubauer G (1989) Wieviel Inkontinente gibt es heute und wird es morgen geben. Vortrag
anlässlich der Fachpressekonferenz:der inkontiente Patient – ein Thema für den Arzt am 30.
January 1989, Seelfeld, Germany
Ouslander JG, Kane RL (1984) The costs of urinary incontinence in nursing homes. Med Care 22 :
6979
Philip B, Miner JR (2004) Economic and personal impact of fecal and urinary incontinence. Gas-
troenterology 126: 8–13
Sandvik H, Hunskaar S,Seim A, Hermstad R,Vanvik A, Bratt H (1993) Validation of a severity in-
dex in female urinary incontinence and its implementation in an epidemiological survey. J
Epidemiol Community Health 47:497–499
Wagner T, Hu T (1998) Economic costs of urinary incontinence. Int Urogynecol J Pelvic Floor
Dysfunct 9 :127–128
31


Chapter 4
Chapter 4 Perception of Incontinence in and by Society
Perception of Incontinence
in and by Society
Paul Enck,Sibylle Klosterhalfen
33
4
Contents
4.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . 34
4.2 Incontinence Citations in PubMed . . . . . . . . . . . . . 34
4.3 Available Therapeutic Tools . . . . . . . . . . . . . . . . . 35
4.4 Incontinence Knowledge in Traditional Health Care . . . 36
4.6 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
References . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

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Paul Enck, Sibylle Klosterhalfen
4.1 Background
The public appearance of the topic incontinence – either urinary or fecal or both – in
the media (TV, newspapers, journals) has undoubtedly increased over the last decade,
and has led to increased numbers of patients consulting for diagnosis and therapy of
incontinence symptoms in specialized medical centers,usually university hospitals.
However, given the epidemiological estimates of the annual incidence and overall
prevalence of incontinence in the adult population (Nelson 2004), it is also evident
that only a minority of patients seek and receive diagnosis and treatment in institutions of primary or secondary care.
One frequently cited reason for this discrepancy between the needs and the supply
for incontinence management in any society is the taboo incontinence carries, similar
to other common topics in society that are difficult to communicate,for example,sexuality and sexual preferences.
Taboo topics share several characteristics when it comes to estimating the number
of people affected: usually these numbers,for example in epidemiological surveys on
prevalence and incidence,are underestimating rather then overestimating the true occurrence. This is because even with full anonymity guaranteed, only a fraction of those
affected are willing to acknowledge that they suffer – or enjoy in case of sexuality –
from this condition.
Why the lack of continence is a taboo is a secondary question and may relate to the
fact that proper control of evacuation functions is regarded as appropriate and normal
once is has been achieved during childhood hygiene training; any abnormality in this
respect later in life may indicate that loss of control is indicative of loss of other functions as well, and may be associated with the fear of becoming socially dependent.
To answer the question of how incontinence is regarded in and by our society, and
whether this perception has changed over the last decades,it needs direct and indirect
indicators of attention, and public appearance of the topic in the media may be but
one. In the following, we have chosen three such indicators: number of incontinence
papers in the scientific literature, the number of treatment options available, and the
medical knowledge of the health care system agencies on patients with incontinence.
They are based on publicly available knowledge, in contrast to privately owned data
such as the sales numbers of incontinence care products.
4.2 Incontinence Citations in PubMed
Over the last 50 years,between 1954 and 2003,a total of more than 22,000 papers have
been published and listed in PubMed related to incontinence – both fecal and urinary.
This includes all data papers and reviews, but also editorials, letters, and comments.
The distribution of these citations over the 50 years clearly follows an logarithmic
function (Fig. 4.1a, b), with the majority of papers published in the last 10 years.
While at a first glance this may indicate a dramatic increase in interest in this topic
in the scientific community, a second look casts doubts: when the numbers of PubMed
citations for another disease, irritable bowel syndrome, were plotted in the same
graph, the same steep, logarithmic increase is clear, also seen when disease-unspecific
medical research topics (e.g., placebo) were evaluated in PubMed (Klosterhalfen et al.
2004).Consequently, it can be concluded that the scientific increase in incontinence as
a research subject is probably the result of an increased number of publication pos-

Chapter 4 Perception of Incontinence in and by Society
35
Fig. 4.1. a Number of publications according to PubMed for incontinence (dotted line, right Y-ax-
is) and irritable bowel syndrome (solid line, left Y-axis) between 1954 and 2003. b Number of
publications for incontinence (dotted line, right Y-axis) and placebo (solid line, left Y-axis)
sibilities available.However, it may also indicate an increased awareness on the part of
the scientific community for the needs of patients suffering from incontinence, and
thus may reflect an altered perception on the part of the society as well.
4.3 Available Therapeutic Tools
Milestones in the development of therapeutic tools for treatment of fecal and urinary
incontinence are drugs that became available (e.g., trospium chloride for urinary incontinence, loperamide for fecal incontinence), other conservative treatment options
(biofeedback therapy, electrostimulation),or surgical procedures that became routine
(e.g., anal repair, gracilis muscle transplant,sacral nerve stimulation). With the exception of surgical procedures that are often not easy to identify for their origin, that are
often modified from one surgeons to another, and whose outcome depends very much
on the individual skills of an individual surgeon, many of these milestones can be
listed according to the year they became available to the general medical public
(Fig. 4.2).

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Paul Enck, Sibylle Klosterhalfen
Fig. 4.2. Milestones in urinary incontinence therapy (according to Buddrus 2002)
As can bee seen, these milestones are rather equally distributed over the last
50 years and do not indicate – at least not by numbers – an increased attention given
to incontinence therapy in this period.
The picture changes dramatically, however, when drugs in development, which are
not yet available on the market but will be in the near future, are taken into account.
More then 35 drugs are in the pipeline within different drug companies around the
world, at different stages of drug development (Table 4.1), and even if only half of them
make it into the clinics,it will improve the situation of patients seeking treatment for
urinary incontinence.
This increase in the number of potential drugs for treatment of urinary incontinence is probably highly indicative of the (economic) estimate of the drug industry of
potential patients asking for treatment in the future.
4.4 Incontinence Knowledge in Traditional Health Care
In a landmark paper by Leigh and Turnberg (1982), the authors noted that less then
50% of their patients seen for diarrhea suffered from fecal incontinence but did not
disclose this condition to their physician at the initial visit, and only on specific questioning. The authors cite “the apparent reluctance of patients to complain of incontinence may be compounded by the reluctance of medical attendants to embarrass patients by asking about it.. .” (Leigh and Turnberg 1982, p 1351) – both may be hindered
by the taboo.
Some 10 years later, we wondered whether this had changed at all over the years,
and how deep-rooted the reluctance of doctors is. We raised three questions:
쐽 Do family physicians (Hausärzte) know when their patients have incontinence?
쐽 How accurate are medical charts in highly specialized outpatient clinics with re-
gards to incontinence?
쐽 Do the files of health insurance organizations/HMOs (Krankenkassen) contain ad-
equate incontinence information?
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