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Chapter 26 Incontinence Treatment after Rectal or Perianal Surgery
Weil EHJ, Riuz-Cerda JL,Eerdmans PHA, Janknegt RA, van Kerebroeck PE (1998) Clinical results
of sacral neuromodulation for chronic voiding dysfunction using unilateral sacral foramen
electrodes. World J Urol 16: 313–321
Welsh FK, McFall M, Mitchell G, Miles WF, Woods WG (2003) Pre-operative short-course radio-
therapy is associated with faecal incontinence after anterior resection. Colorectal Dis 5 :
563–568
Williams NS,Johnston D (1984) Survival and recurrence after sphincter-saving resection and ab-
dominoperineal resection for carcinoma of the middle third of the rectum. Br J Surg 71 :
278–282
Williams NS,Patel J, Georg BD, Hallan RI,Watkins ES (1991) Development of an electrically stim-
ulated neoanal sphincter.Lancet 338 : 1166–1170
Wong WD, Congliosi SM, Spencer MP et al (2002) The safety and efficacy of the artificial bowel
sphincter for fecal incontinence.Dis Colon Rectum 45: 1139–1153
367
Part VIII
Quality of Life
and Long-term Results
After Incontinence Treatment
VIII
Chapter 27
Chapter 27 Quality of Life with Urinary and Fecal Inconti-
Quality of Life with Urinary
and Fecal Incontinence
Todd H. Rockwood
371
27
Contents
27.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . 372
27.2 Incontinence and Health-related Quality of Life . . . . . 372
27.3 Instruments . . . . . . . . . . . . . . . . . . . . . . . . . 374
27.3.1 Type 1: Generic Health-related
Quality-of-Life Instruments . . . . . . . . . . . . . . . . 376
27.3.2 Type 2: Specialized Instruments . . . . . . . . . . . . . . 377
27.3.2.1 Depression . . . . . . . . . . . . . . . . . . . . . . . . . . 377
27.3.2.2 Social Interaction/Isolation . . . . . . . . . . . . . . . . 378
27.3.2.3 Life: Well-being, Mastery and Locus of Control . . . . . 378
27.3.3 Type 3: Condition-specific Scales: Urinary . . . . . . . . 379
27.3.4 Type 3: Condition-specific Scales: Fecal . . . . . . . . . . 380
27.3.5 Quality of Life and Children . . . . . . . . . . . . . . . . 381
27.3.6 Translation . . . . . . . . . . . . . . . . . . . . . . . . . 381
27.4 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . 382
References . . . . . . . . . . . . . . . . . . . . . . . . . . 382
27
372
Todd H.Rockwood
27.1 Introduction
The assessment of health-related quality of life (HRQoL) has become a more regarded
aspect of health research and care.We have realized that curing the disease in whatever way possible regardless of impacts on life is not necessarily desirable. The intent of
this material is to present a brief review and critique of what is currently available to
assess HRQoL in urinary and fecal incontinence (UI, FI).
Three basic types of instruments that exist for the assessment of HRQoL and con-
dition-specific quality of life (CSQoL) will be presented:
쐽 Type 1 General instruments (MOS-SF36 [ Ware and Sherbourne 1992]
쐽 Type 2 Specialized scales (CESD [Radloff 1977]
쐽 Type 3 Condition-specific (CSQoL: FIQL [Rockwood et al.2000],
GIQLI [Eypasch et al. 1995], IQOL [Wagner et al. 1996],
KHQ [Kelleher et al. 1997]).
Each of these approaches has relative strengths and weaknesses dependent upon the
reason HRQoL data is being collected. As noted by Naughton et al. (2004), type 1 instruments assess generic health status in persons with incontinence and type 3 items
are intended to assess the effect of UI/FI on HRQoL. Type 2 instruments are readily
available to assess a range of issues and are generally under-utilized in the assessment
of HRQoL.
This chapter will review the impact of FI and UI on HRQoL and the value of measuring it in research and in health care delivery.A brief discussion of some of the instruments that are available or have been used for each of the three types will also be presented. This material will include a description of the instrument and its content validity.
27.2 Incontinence and Health-related Quality of Life
In the consideration of the impact of incontinence on life, it is self-evident that there
will be an impact. Cultures usually do not have strong mores around the personal
elimination of waste, but most have normative expectations and aspects of the issue
border on taboos. In addition to the public health considerations,there are numerous
personal and social conventions that incontinence can impact. When the focus is limited to HRQoL, rather than on the gestalt of life (well-being), the impact of incontinence is generally most significant in the social, psychological (affective) and functional (behavior) areas of life. The impact of incontinence on areas such as cognition
is usually a secondary impact (e.g., a person is not willing to attend university because
of incontinence issues).While the secondary impact is no less real, it is not usually an
area that is focused on in either the treatment or assessment of incontinence.
Both UI and FI share common impacts in terms of psychological issues (depression, anxiety, efficacy), function (travel, mobility, coping mechanisms), social (isolation, integration) as well as basic issues associated with the reality of everyday life
(REL [Berger and Luckmann 1990]). There is a hint of truth in morale building in sayings such as:“Doing a good job around here is like peeing on yourself in a dark suit, it
gives you a nice warm feeling but nobody notices” (www.despair.com). In the life of
someone with incontinence, the fear that someone will always notice presents challenges to even the simplest activities in life.
Chapter 27 Quality of Life with Urinary and Fecal Incontinence
Before moving to a discussion of existing instruments that measure HRQoL related
to incontinence,it is important to place such measures in the proper context.There is
a tendency to equate HRQoL or even CSQoL with overall quality of life. While health
contributes to overall quality of life and well being, it is not necessarily the sole determinant of those things. Figure 27.1 presents a simple model,driven primarily by measurement, of the spectrum of life. Historically, well-being instruments have the broadest content found in measures. Instruments such as the General Well-Being Schedule
(Fazio 1977) assess a much wider range of issues than the health-related quality of instruments such as the Medical Outcomes Study Short Form (SF36 [Ware and Sherbourne 1992]). Although these instruments assess a much wider range of life, they are
not necessarily cast in terms of the relationship between health and life. Generic instruments to assess HRQoL, such as the EuroQoL (Brazier et al. 1993) and the aforementioned SF-36 (Ware and Sherbourne 1992) are instruments that have been developed to assess a much more restricted domain of quality of life primarily within the
context of health.It is essential in the use of such measures that we do not assume too
much about the relationship between what is being measured and life. HRQoL is not
well-being, and though it may contribute significantly to well-being, it is critical that
we not make the inference that it is well-being.
An even more restricted group of measures are CSQoL instruments.As Fig. 27.1 illustrates, they represent a small area within well-being. Most instruments for the assessment of QoL in incontinence focus on measuring three areas: function (behavioral), social (isolation, stigma, etc.) and psychological (depression, anxiety, etc.). These
measures are either explicitly or implicitly framed within the context of CSQoL: “Due
to your incontinence....”. As a result,they assess the psychological, social and function-
al domains that fall within the shaded area of CSQoL Fig. 27.2. In these instances,it becomes even more important to keep in mind what is actually being measured relative
to the larger scope of the domains in question (the psychological, social,and functional areas that are outside of the shaded area).
In summary,it is clear that incontinence has an influence on quality of life and that
consideration of quality of life should enter into the assessment and treatment of incontinence. Regardless of whether or not that assessment is formal (e.g., a question-
373
Fig. 27.1. Conceptual framework of quality of life
374
Todd H.Rockwood
Fig. 27.2. Measurement domain of condition-specific quality of life relative to quality of life
27
naire) or part of the clinical encounter, it is important that we remain within the boundaries of what is being measured (construct validity) and not allow ourselves to draw
inferences that are not founded upon sound measurement (Wainer et al. 1988).
27.3 Instruments
To facilitate the discussion of instruments that exist for the assessment of HRQoL/
CSQoL they will be divided into three types: (1) generic health-related quality of life,
(2) specialized scales, and finally (3) condition-specific. Table 27.1 presents a brief summary of the scales that will be discussed.
Table 27.1. Summary information for instruments reviewed
Instruments Items Scales, Reliability Validity
domains
Type 1: Generic
EuroQOL (Brazier et al.1993) 6 6 ××
MOS (SF36) (Ware and Sherbourne 1992) 36 8 ××
Type 2: specialized
Depressive affect
Self-Rating Depression Scale (ZUNG) 20 1 ××
(Zung 1965)
Center for Epidemiologic Studies 20 1 ××
Depression Scale (CESD) (Radloff 1977)
Geriatric Depression Scale (Brink et al. 1982) 30 1 ××
Automatic Thoughts Questionnaire (Hollon 30 1 ××
and Kendall 1980)
a
Chapter 27 Quality of Life with Urinary and Fecal Incontinence
Table 27.1. Continued
Instruments Items Scales, Reliability Validity
a
domains
Social Interaction/Isolation
Social Avoidance and Distress Scale (SAD) 28 2 ×
(Watson and Friend 1969)
Life: Well-being, Mastery and Locus of Control
General Well-Being Schedule (Fazio 1977) 33 ××
Purpose in Life Test (Crumbaugh 1968) 20 1 ××
Adult Nowicki-Strickland Internal-External 40 1 ××
Control Scale (Nowicki and Duke 1983)
Mastery Scale (Pearlin et al. 1981) 7 1 ××
Multidimensional Health Locus of Control Varies ××
Scales (IHLC) (Wallston et al. 1978; Wallston
and Wallston 1981)
Type 3: Condition-specific: urinary
Quality of Life in Persons with Urinary 22 1 ××
Incontinence (I-QoL) (Wagner et al. 1996)
King’s Health Questionnaire (KHQ) 21 7 ××
(Kelleher et al. 1997)
Incontinence Stress Questionnaire for 20 3 ××
Patients (ISQ-P) (Yu et al. 1989)
375
Incontinence Impact Questionnaire versions
IIQ (Schumaker et al.1994) 30 4 ××
IIQ-7 (Uebersax et al. 1995) 7 ××
Urge IIQ (Lubeck et al. 1999) 32 6 ××
IIQ/II7: Male Adaptation Varies ××
(Fleshner and Herschorn 1996)
Type 3: Condition-specific: Fecal
GIQLI (Eypasch et al. 1995) 36 5 ××
Adapted KHQ (Bug et al.2001) 31 10 ××
Fecal Incontinence Quality of Life (FIQL) 29 4 ××
(Rockwood et al. 2000)
Children
Child Health Questionnaire Varies 10 ××
(Landgraf et al. 1996)
Social Avoidance and Distress Scale for 10 1 ××
Children (SAD) (La Greca et al. 1988)
Nowicki-Strickland Internal-External 40 1 ××
Control Scale for Children (Nowicki and
Strickland 1973)
a
It should be noted that the type of validity that has been established is not consistent across all
of the different instruments.
27
376
Todd H.Rockwood
Instruments found in the type 1 and type 2 sections apply to both UI and FI,and the
discussion of the instruments will differentiate between the type of incontinence. Discussion of the instruments in type 3 will be done for UI and FI separately. The intent of
the following material is to summarize the content of these instruments. There are a
number of excellent reviews of existing instruments regarding QoL and urinary incontinence in the literature (Corcos et al. 2002; Symonds 2003; Naughton et al. 2004)
and fecal incontinence (Rockwood 2004) that provide additional information beyond
the scope of this material.
The psychometric properties have been evaluated for all the instruments that are
discussed in this chapter. The evaluation of reliability is generally uniform (test/retest, internal) for all the instruments. The validity evaluations are not as uniform.
There are multiple methods of establishing validity and each type of validity means
different things (Wainer et al. 1988; Nunnally and Bernstein 1994).Within the instruments presented the validity tests include: construct, criterion,discriminating as well
as other tests. Space prohibits a discussion of the implication of the type of validity
test(s) conducted for each test, but it is important that in the use of the instruments the
type of validity test conducted be evaluated relative to the intended use of the instrument.
There is an important issue that is often overlooked when validity is discussed relative to these instruments.It is usually assumed that when an instrument is valid,nonrandom measurement error is minimized. This is not the case: validity assessments
rarely evaluate how traditional sources of measurement error in survey methods,
question order, response categories, mode of administration, etc. contribute to nonrandom error in measurement (Biemer et al.1991; Schwarz et al. 1992). It is important
when selecting and using ‘validated’ instruments that one does not assume that measurement error is not present (Rockwood et al. 1999).
The last issue in this area is sensitivity.As with validity, sensitivity encompasses a
wide range of meanings: sensitive to clinically relevant change, sensitive to change in
the construct, sensitive to life change. All of the instruments are sensitive. Some are
well adapted for natural history (dynamics of depressive affect in FI over the life
course), others for clinical outcomes (ability to determine if treatment affects life in
addition to physiology, etc). In the selection of instruments for research, it is important that sensitivity take on meaning relative to the intent of the research and needs to
be evaluated within that context. To say that an instrument is sensitive is not particularly meaningful, they are all sensitive,but they are sensitive to different things.
27.3.1 Type 1: Generic Health-related Quality-of-Life Instruments
Generic HRQoL instruments have been developed for use in the general population.
The focus of the measures is directed at assessment of phenomena as it presents in the
typical or average population. As a result, these measures are readily applicable to
many research settings.From this category, there are two primary instruments that are
used to assess HRQoL in incontinence: the EuroQOL (Brazier et al.1993) and the SF36
(Ware and Sherbourne 1992). (The ordering in the presentation instruments should
not be construed to indicate their value for any of the instruments discussed in this
chapter.)
The EuroQOL is a six-item survey designed to assess HRQoL in six areas: mobility,
self-care, usual activity, pain (discomfort), anxiety/depression, and summary general
health rating. A single item assesses each area. The instrument is used much more
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