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Quality ofLife After Colorectal
Surgery
NiamhA.Moynagh, GeorgeMalietzi,
andAilínC.Rogers
12
Highlights (to Be Formatted into Figures in
Chapter)
Outcome measures traditionally considered most
important such as incision length, hospital length
of stay and use of minimally invasive approaches
are not the most valued from the patient perspective. Ultimately, the aspects that matter most to
patients undergoing colorectal surgery are
whether they are cured of disease and if they can
avoid having a stoma.
Modular questionnaires are well developed
for patients with colorectal cancer, the two most
cited and regarded in the literature being the
FACT-C and EORTC QLQ-CR29.
Bowel dysfunction, urogenital dysfunction
and the biopsychosocial impacts of ostomy are
consistently shown in both the literature and clinical practice to have profound effects on our
cohort of patients. Specic questionnaires for
these set of symptoms can be applied to patients
N. A. Moynagh
Department of Colorectal Surgery, St. James’s
University Hospital, Leeds, UK
e-mail: moynaghn@tcd.ie
G. Malietzi (*)
Mediterranean Hospital, Limassol, Cyprus
e-mail: g.malietzis@medihospital.com
A. C. Rogers
Mater Misericordiae University Hospital,
Dublin, Ireland
e-mail: Ailinrogers@mater.ie
selectively to highlight individual needs and
responses to treatment.
Urogenital dysfunction can be an area that can
be more difcult for clinicians to broach with this
cohort of patients and can often go under recognised. Specic questionnaires validated for these
set of symptoms include the International Prostate
Symptom Score which has been broadened for
widespread use including in female patients, the
Rectal Cancer Female Sexuality score and the
International index of erectile function.
Many patients will have complex stomarelated QOL changes. The colostomy impact
score and Stoma-QOL scores are the most frequent specic questionnaires used for ostomy
assessment. The Stoma-QOL score asks specically regarding the psychosocial impact of
ostomy formation while the colostomy impact
score focuses on physical implications of stoma
formation which have been previously shown to
negatively impact patient QOL such as odour and
leakage.
Introduction
As post-operative morbidity and mortality rates
of colorectal surgery improve, there is an increasing recognition of the impact these operations
have on patient quality of life (QOL). QOL scores
can aid us in choosing treatment pathways, counselling patients, consenting for post-operative
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023
T. Athanasiou et al. (eds.), Patient Reported Outcomes and Quality of Life in Surgery,
https://doi.org/10.1007/978-3-031-27597-5_12
181
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N. A. Moynagh et al.
outcomes and inuencing health policy [1].
Outcome measures traditionally considered most
important to surgeons, such as morbidity and
mortality, incision length, hospital length of stay
and use of minimally invasive approaches are not
the most valued from the patient perspective.
Ultimately, the aspects that matter most to
patients undergoing colorectal surgery are
whether they are cured of disease and if they can
avoid having a stoma [2]. It is imperative that
colorectal surgeons focus on these other markers
of health to maintain the upward trajectory of
patient-centred care. Furthermore, as has been
demonstrated in many other arenas, adequate
patient counselling for realistic expectations after
surgery must be employed, with a resultant
improvement in patient perception of postoperative QOL [2]. This chapter aims to improve
understanding of the various QOL tools used in
colorectal surgery.
QOL Tools inColorectal Surgery
QOL questionnaires give invaluable insights into
patient experience and inform clinical practice.
However, questionnaires must be valid, reliable,
sensitive, reproducible and simple to administer
and interpret [3]. Multiple QOL scores exist and
can be broadly broken down into generic, modu-
lar and specic questionnaires, which are shown
in Table 12.1. Generic questionnaires focus on
non-disease specic health-related QOL measures. Responses must be interpreted within
patient goals and expected standards, which vary
among individuals and cohorts. These have been
discussed elsewhere and include the commonly
used EQ-5D and SF-36. Modular questionnaires
combine generic QOL with disease-specic
modules, giving clinicians and policy makers a
broader insight into patient needs [17]. Specic
instruments focus more exclusively on a symptom or particular set of symptoms related to
patient outcome for a particular procedure or disease entity. There is a natural overlap between
QOL instruments and those which measure
patient-reported outcome measures (PROMs).
PROMs essentially measure the individual’s perception of their QOL albeit through the use of a
standardised model of ‘a good QOL’ using predetermined standards. In fact, individual denitions of QOL are naturally variable and
heterogeneous, and PROMs are further discussed
later in this Chapter.
Modular Questionnaires
One such instrument hails from the FACIT group
(Functional Assessment of Chronic Illness
Therapy group), who created FACT-G, a general
health QOL instrument for use in chronic illness
consisting of a Likert scale covering four quality
of life domains (physical, emotional, social and
functional). The FACT-C is a module of this, specic to outcomes post-colorectal cancer surgery.
It consists of the basic 36 items in FACT-G, with
an additional nine-item Colorectal Cancer
Subscale (CSC). The specic colorectal items
include questions regarding gastrointestinal
symptoms, loss of weight, body image assessment and stoma specic questions, which have
been validated for use in assessing functional status and QOL post-colorectal surgery [6, 18].
Another frequently used, cancer-specic
questionnaire is the EORTC QLQ-C30, which
aims to create a snapshot of QOL for cancer
patients across specialties. It contains ve functional scales, three symptom scales, a global
QOL scale and a number of individual scales
assessing complaints often encountered by oncology patients, such as dyspnoea and insomnia
[19]. This is then combined with a module specic to colorectal cancer (EORTC QLQ-CR29).
This contains an additional 29 questions to give a
focused review of QOL for colorectal cancer
patients. Within it, urinary frequency, stool consistency and body image are assessed, along with
single items commonly experienced by this subset of patients such as hair loss and dry mouth.
There are further subsets of questions based on
whether patients have an ostomy or not, and their
resultant gastrointestinal function and emotional
status [7].
12 Quality ofLife After Colorectal Surgery
As per the developers the two
measures are intended to be
interpreted separately (PCS and
MCS) rather than an overall
QOL score. Some researchers
Both a PCS and MCS
produced, as well as assessing
general health perceptions.
Desire of the creators from the
continue to do this and
extrapolate incorrectly from this.
Questions only valid for
outset to generate cross national
comparisons. Trade off between
multidimensionality and
simplicity.
index value. Relevant to all
respondents regardless of
health status. Good add on to
other instruments.
previous 7days.
sex life included.
Questions only valid for
previous 7days, aside from two
questions on the individuals sex
life which encompasses the
previous 4weeks.
regarding patients sex life and
assess urinary function.
Includes questions about body
image. Species bowel function
questions by directing those
183
(continued)
with and without ostomy to a
separate question strain.
Modular in nature.
Specic
patient
reported
Time to
preform Strengths Drawbacks
Yes <10min Widely used and researched.
QOL
questions
36 questions, divided
into physical health
score (PCS), mental
health score (MCS)
and a global health
weighted sums of the questions in
their section. Each scale is 0–100,
the lower the score indicating more
disability.
6 questions Ye s <10min Capable of producing a single
component.
covering key domains with three
levels of severity which can be
indicated. (mobility/self care/pain
or discomfort/anxiety or
depression) and a visual analogue
27 questions Ye s <10min Question on satisfaction with
4 domains (physical well being/
social or family wellbeing/
emotional well being/functional
scale which asks patient to draw a
circle on a line from 0 to 100
indicating their general health
status today.
well being)
Yes <10min Includes two questions
26/27 additional
question depended on
whether the patient
has an ostomy
appliance.
An adjuvant to the cancer specic
EORTC QLQ C-30. 4 point Likert
scale. 26/27 additional question
depended on whether the patient
has an ostomy appliance.
SF-36 [4] There are 8 scaled scores which are
Table 12.1 Generic, modular and specic questionnaires for colorectal disease
Generic Scale type Number of questions
EQ-5D [5] Modied Likert scale. 5 questions
Modular
EORTC
FACT G [6] Likert scale. 5 point scale assessing
QLQ-C29 [7]
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N. A. Moynagh et al.
Specic
patient
reported
Validated for use in assessing
life post colorectal surgery.
Colostomy and body image
specic questions included.
life post colorectal surgery.
Colostomy and body image
specic questions included.
Modular in nature.
Time to
preform Strengths Drawbacks
Yes <10min Validated for use in assessing
QOL
questions
It consists of the basic
27 items in FACT-G,
with an additional
nine-item Colorectal
Cancer Subscale (CSC
Infers that frequency indicated
severity of impact on patients
life, where this may not always
be the case.
used and validated. Sensitive to
change post intervention.
Likely good for screening but
No <10min Can be used to compare
7 questions No <10min Simplicity of completion. Well
5 questions with
Recommended to be used in
not subtle enough to assess this
complex syndrome on its own.
functional outcomes post
interventions
specic numerical
ratings. This gives a
scale from 0 to 42
with cut offs
stratifying patients
into no LARS, minor
LARS or major
combination with the generic
between patients with faecal
29 Ye s <10min Capable of discriminating
LARS.
measures
incontinence and patients with
other gastrointestinal problems.
Demonstrates good correlations
Non response can be an issue
broach an often
underrecognized and
with SF36/includes question on
patients sex life.
underreported issue.
No <10min Highly sensitive. A format to
items with a range of
0–29 points.
Score≥9 indicates
sexual dysfunction.
Likert scale. It focuses on ve main
issues, including incontinence of
atus and of liquid stools,
Quantitative scale giving ranges
from 0 indicating perfect
continence, to 24 indicating
complete incontinence. Linkert
style for four question and simple
yes no style question for the
specic FACT G, with colorectal
cancer specic questions
Specic
St. Marks
incontinence
Fact C [6] An adjuvant to the chronic disease
Table 12.1 (continued)
Generic Scale type Number of questions
score [8]
remainder.
LARs score
clustering, urgency and frequency
[9]
items form four scales: Lifestyle
(10 items), Coping/Behaviour (9
items), Depression/Self-Perception
(7 items), and Embarrassment (3
FIQLs [10] Linkert scale of 29 items; these
Linkert scale The score includes 7
items)
Rectal Cancer
Female
Sexuality [11]
12 Quality ofLife After Colorectal Surgery
Initially created to be used for
this score assesses for lower
urinary tract symptoms in the
context of benign prostatic
hyperplasia. Designing of a
colorectal cancer specic
questionnaire may be of benet.
Specic to male gender. Over
last 4 weeks. Not specic to
urinary symptoms likert scale
included.
under recognized and
colorectal patients. Does not
include ostomy questions.
underreported issue.
Complex patient experience for
just 7 questions, to be used with
other forms of analysis.
Relatively new score.
also reected in the calculation
of the total stoma-QOL score,
and thus the resulting measure,
in our view, will be more
meaningful to the clinician
systemic symptoms, functional
impairment, emotional
functioning and social
185
functioning questions.
Specic
patient
reported
Time to
preform Strengths Drawbacks
QOL
questions
15 item questionnaire No <10min A format to broach an often
orgasmic function, sexual desire,
intercourse satisfaction and overall
7 items, 0–38 points. No <10min Simplicity of use. Simplicity over completeness.
satisfaction assessed on a Likert
scale
Mixture of Likert and Yes/No
questions. A score of ≥10 indicates
major colostomy impact
No <10min The importance of each item is
20
The highest possible
raw score for the
reduced questionnaire
is 80 (best QOL) and
the lowest possible
score is 20 (worst
QOL)
36 Ye s <10 Includes both bowel symptoms,
Likert scale covering four
domains– Sleep, sexual activity,
relations to family and close
friends, and social relations to other
than family and close friends
subjective symptomatology items
encompassing bowel and systemic
function, as well as items regarding
emotional and social function as
well as sexual activity
Generic Scale type Number of questions
IPSS [12] Likert scale 8 Yes <10mins Specic quality of life due to
IIEF [13] Measures erectile function,
Colostomy
impact score
[14]
Stoma-QOL
score [15]
IBDQ-36 [16] This includes a range of more
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N. A. Moynagh et al.
Specic Questionnaires
The utilisation of more specic QOL questionnaires, focusing on known collateral implications
of certain procedures, gives clinicians and policy
makers a better understanding of areas of patient
care which need attention. Bowel dysfunction,
urogenital dysfunction and the biopsychosocial
impacts of ostomy are consistently shown in both
the literature and clinical practice to have profound effects on our cohort of patients [2, 3].
Specic questionnaires have been developed to
give clinicans greater insight into the prevalence,
frequency and impact these have on patients and
to help tailor further management.
Bowel Dysfunction
Bowel function assessments are incorporated
into the colorectal-specic modular scales above.
In addition, there are more specic bowel dysfunction instruments, such as the St. Marks
incontinence Score and the Low Anterior
Resection Score (LARs Score) [8, 9].
The St Marks incontinence score is a modication of the original Wexner score and uses a
linear scale to give a quantitative measure of
severity of common symptoms of incontinence,
such as frequency, urgency and need for pharmacological interventions to control gastrointestinal
symptoms. The scale ranges from 0 indicating
perfect continence, to 24 indicating complete
incontinence. It correlates well with patient perception of incontinence and is dependable across
a range of patient variables such as of age, gender
and degree of incontinence. Importantly, the
score is sensitive to subjective change postintervention [8], rendering it effective as a baseline scoring tool, and capable of ascertaining
efcacy of treatment. Other bowel dysfunction
scores with a specic focus on self-reported quality of life as a result of bowel symptoms have
been validated for use in both clinical and
research settings, such as the Faecal Incontinence
Quality of Life Scale (FIQLS) and the
Gastrointestinal QoL Index (GIQLI) [10, 16].
Gastrointestinal dysfunction is particularly
prevalent with sphincter-preserving procedures
where there are low anastomoses. Low anterior
resection syndrome (LARS) is disordered bowel
function after rectal resection, and often leads to
deterioration in QOL, as measured by the LARS
score. It focuses on ve main issues, including
incontinence of atus and of liquid stools, clustering, urgency and frequency, and gives a scale
from 0 to 42, with cut offs stratifying patient into
no LARS, minor LARS or major LARS [9].
Further to this are disease- or syndromespecic scores. For ulcerative colitis and Crohn’s
disease the Inammatory Bowel Disease
Questionnaire (IBDQ-36) can be used. This
includes a range of more subjective symptomatology items encompassing bowel and systemic
function, as well as items regarding emotional
and social function as well as sexual activity. It is
a quantitative index with lower scores indicative
of lower quality of life [16].
Urogenital Dysfunction
Urogenital dysfunction is a prevalent issue postrectal surgery, due to interference with splanchnic nerve plexuses, and has substantive impacts
on postoperative QOL [3, 20]. Sexual dysfunction in particular is an often unreported and
underrecognized sequelae of colorectal surgery,
which frequently proves difcult to measure and
when included in QOL instruments often has
high nonresponse rates [21, 22]. Of the modular
questionnaires, EORTC QLQ-CR29 has questions assessing urinary dysfunction, while sexual
dysfunction is a component of both the FACT-C
and EORTC QLQ-CR29 questionnaires [6, 19].
The International Prostate Symptom Score
(IPSS) is the most commonly used specic questionnaire for urinary function amongst postoperative colorectal cancer patients [12]. This
score assesses for lower urinary tract symptoms
(LUTS), originally in the context of benign prostatic hyperplasia, but has been broadened for
widespread use including in female patients.
The International index of erectile function
(IIEF) is a fteen-item questionnaire that measures erectile function, orgasmic function, sexual
desire, intercourse satisfaction and overall satisfaction assessed on a Likert scale, and is most
commonly used to assess males [13]. For female
patients, this is often unfortunately an unbroached
12 Quality ofLife After Colorectal Surgery
187
topic, however the Rectal Cancer Female
Sexuality score has been specically designed
for this purpose [11].
Biopsychosocial Impact ofOstomy
Ostomy creation is often unavoidable as a consequence of colorectal surgery, and although stoma
presence does not indicate poorer QOL, many
patients will have complex stoma-related QOL
changes. Multi-disciplinary team involvement
with stoma therapists, dieticians, occupational
therapists and colorectal nurse specialists have
increased patient education and realistic postoperative expectations [3, 7]. The colostomy
impact score and Stoma-QOL scores are the most
frequent specic questionnaires used for ostomy
assessment. The Stoma-QOL score asks specically regarding the psychosocial impact of
ostomy formation while the colostomy impact
score focuses on physical implications of stoma
formation which have been previously shown to
negatively impact patient QOL such as odour and
leakage [15, 23]. Both the FACT-C and EORTC
QLQ-C29 also assess stoma-related issues,
FACT-C briey focusing on psychosocial effects
of ostomy, while EORTC QLQ-C29 examines
stoma impact in more detail, with seven specic
ostomy related questions covering also some
physical side effects of stomas [6, 7].
QOL Considerations
intheManagement ofSpecic
Colorectal Conditions
Colorectal Cancer
The primary outcome in curative colorectal cancer surgery is oncological clearance with a QOL
that is acceptable for the patient. In general, low
rectal cancers have more complications, lower
QOL scores, poorer bowel and urogenital function and higher ostomy rates than other colorectal
cancer sites. They also are a group of patients in
whom the majority require pelvic radiotherapy,
with its consequent effects on QOL [2, 3].
Therefore, low rectal cancer is a subset of patients
we will focus upon with regards to QOL outcomes and implementation of care pathways.
There are a multitude of approaches to the
management of low rectal cancer, with selected
patients benetting from the option of organ
preservation. This can minimize rectal resections
and includes transanal approaches or avoiding
surgery altogether with watch-and-wait for those
who completely respond to neoadjuvant therapy.
Over the last quarter of a century there has been a
general move towards restoration of bowel continuity even for very low cancers, due to improving
neoadjuvant therapy outcomes, surgical techniques, stapling equipment, and an improved
understanding of the required distal resection
margins, with sphincter sparing procedures
where feasible [2]. While this lends to avoidance
of stoma formation, there has been a concomitant
increase in defecatory dysfunction and recognition of LARS. Colonic J-pouch anastomosis,
side-to-end anastomosis and coloplasty have
been reported to reduce gastrointestinal dysfunction and improve functional outcomes in comparison to straight coloanal anastomoses [3].
As rectal cancer T stage increases or the
tumour nears the sphincter, so too does the likelihood of requiring more extensive surgery with
the prospect of permanent end stoma, in the setting of abdominoperineal resection (APR), pelvic
exenteration or sacrectomy. We have already earlier discussed the effects of ostomy for patients
overall, but these extensive pelvic surgeries also
carry higher rates of urogenital dysfunction,
impacted also by need for neoadjuvant therapy
and extensive pelvic dissection, as well as body
image and libido issues affecting sexual function
[2, 3, 21] Interestingly however, emotional and
cognitive function is improved in those undergoing APR rather than anterior resection for cancer,
possibly due to the perceived denitive nature of
the surgery and decreased need for further invasive surveillance [3].
Minimally invasive surgery can offer clearer
demarcation of planes and better views of operative elds, without compromising oncological
outcomes. Since cost-benets of robotic surgery
have not yet been proven for colorectal surgery,
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N. A. Moynagh et al.
many have not embraced its use in rectal resection. However, the costs of robotic surgery are
decreasing, and further options are entering the
market, with emerging evidence of costeffectiveness [24]. Furthermore, of paramount
importance to patients are studies suggest that
QOL is improved post robotic surgery, and urogenital dysfunction is less [25, 26].
Inammatory Bowel Disease (IBD)
It is thankfully now an exceptionally rare event
for IBD to present and require an index bowel
resection at rst presentation. Most often, IBD
patients who require surgery have had a prodromal illness with some chronicity, but with the
opportunity of understanding the surgical management approach to the disease in advance. For
this reason, the optimal strategy is a joint
approach with gastroenterologists and surgeons
clinically involved after rst diagnosis. This
allows a long period of forecasting, adjusting and
counselling these, often young, patients before
major resection surgery, and allowing them to
have realistic QOL aspirations [16].
Certain aspects of IBD management need careful consideration when undertaking surgery, with
respect to QOL outcomes. Many of these patients
may be malnourished, anaemic or immunosuppressed, which affects post-operative as well as
QOL outcomes, and renders them more likely to
need temporary faecal diversion [27]. Infertility
and fecundity are signicant issues with proctectomy in premenopausal females of this cohort and
must be discussed. Permanent end stoma may be a
QOL choice in patients undergoing panproctocolectomy for ulcerative colitis, as the bowel dysfunction associated with pouch reconstruction
may be unacceptable to them. Conversely, patients
with Crohn’s disease often do not even have the
choice to restore bowel continuity after panproctocolectomy, as the surgical risks of low anastomosis
or pouch are unacceptably high, and thus a permanent stoma is mandated. (reference) Where possible, a minimally invasive approach is preferable
with higher QOL outcomes [28, 29].
Inherited Cancer Syndromes
This cohort of patients have genetic conditions
such as familial adenomatous polyposis (FAP)
or Lynch syndrome, predisposing them to
colorectal cancer at a young age. They have similarities with the IBD cohort in that they are
often young, and with similar considerations
with respect to spending time to counsel them
and discuss fertility and aim for minimally invasive surgery. There is a strong emphasis with
these patients on QOL, as surgery is an elective
undertaking to prevent illness in the future, and
thus ileoanal pouch is often their favoured reconstructive option, with those patients who choose
it favouring its effects on bowel dysfunction as a
counterbalance to the QOL impacts of permanent stoma.
Diverticular Disease
Most surgeons have moved away from elective
segmental colectomy for diverticular disease,
with improvement in QOL only seen if preoperative QOL was signicantly lowered by
complicated diverticulitis. Rather, elective
colonic resection in these scenarios is mostly
reserved for those with recurrent sepsis, stulation or stricturing, avoiding a stoma where
patients have a safe area of colon to primarily
anastomose [30].
Perianal Surgery
Perianal surgery is generally well tolerated and
can be undertaken for many indications from
haemorrhoids and stulae, to anal neoplasia,
often with resultant improved QOL due to the
underlying discomfort of many of these conditions. Rates of minor complications are relatively
high, but rarely have a major impact on patient
QOL. The most feared long-term sequelae of
anorectal surgery which impact patient QOL are
thankfully rare– faecal incontinence, anal stenosis and chronic pelvic pain [23].
12 Quality ofLife After Colorectal Surgery
189
Discussion
Patients undergoing colorectal surgery, may see
their QoL affected. For this reason, patients
should be informed of the treatment benets and
risk of postoperative dysfunctions. In the same
way, treatment decisions must be based on both
the patient preferences and clinical judgment.
The management of these patients should be
multidisciplinary to ensure that after treatment
they should have an optimal QoL.
The International Consortium for Health
Outcomes Measurement (ICHOM) published a
working group report in JAMA oncology in 2017
which for standards of outcomes in relation to
colorectal cancer [31]. A list of outcomes were
established and grouped into four categories,
whose being survival and disease control, disutility of care, degree of health and quality of death.
Within degrees of health, patients overall wellbeing, physical and emotional functioning, sexual functioning and bowel functioning was
measure using the previously discussed EORTC
Quality of life CR29. The also highlighted GI
dysfunction and functioning of ostomy as important contributors to QOL. Other aspects highlighted in this report to be important to our cohort
of patients included quality of end of life care
including location of death and presence of recent
admission to hospital prior to same.
In the next years, this eld of study would
benet from: an increase in the number of methodologically studies comparing patients with the
general population at multiple assessment times;
the development of instruments that are able to
seize the specic symptomatology of the colorectal pathology and to assess its impact of patients’
QoL; and widening the collection of reference
data for generic questionnaires as well as starting
to collect normative data for specic questionnaires, reporting details about the sample drawn
from the general population.
Recently, the terms patient-reported outcome
(PRO) and patient-reported outcome measure
(PROM) have become popular. This is partly
because the research authorities are now actively
encouraging the medical research community to
use PROs in clinical trials, but also reective of
increased patient engagement with clinicians on
their care trajectories and goals. PRO (as the
name suggests) refers to the perspective of the
patient themselves, and was discussed earlier in
the chapter. PROMs are therefore used to include
not only questionnaires designed to measure
health-related QOL, but also the full gamut of
self-report instruments developed to measure
constructs such as symptom burden, psychological distress, survivorship needs, unmet needs and
satisfaction with care, many of which are included
in the specic questionnaires above, and so there
is considerable overlap with QOL studies.
Indeed, in their clinical guideline (CG131),
the National Institute for Health and Care
Excellence recommended the development of a
set of PROMs for colorectal cancer. Whilst the
feasibility of incorporating PROM assessments
into routine colorectal practice has been shown,
the optimum content has not yet been fully
established.
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