Journal of Pediatric Surgery 51 (2016) 117121

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Journal of Pediatric Surgery

journal homepage: www.elsevier.com/locate/jpedsurg

Patient-centered outcomes research in appendicitis in children:

Bridging the knowledge gap,
Danielle B. Chau a, Sean S. Ciullo b, Debra Watson-Smith b, Thomas H. Chun a,c,
Arlet G. Kurkchubasche a,b, Francois I. Luks a,b,
a
b
c

Alpert Medical School of Brown University, Hasbro Childrens Hospital, Providence, RI

Division of Pediatric Surgery, Hasbro Childrens Hospital, Providence, RI
Division of Pediatric Emergency Medicine, Hasbro Childrens Hospital, Providence, RI

a r t i c l e

i n f o

Article history:
Received 30 September 2015
Accepted 7 October 2015
Key words:
Appendicitis
Antibiotics
Appendectomy
Children
Patient-centered
Survey

a b s t r a c t
Purpose: Patient-centered outcomes research (PCOR) aims to give patients a better understanding of the
treatment options to enable optimal decision-making. As nonoperative alternatives are now being evaluated in
children for acute appendicitis, we surveyed patients and their families regarding their knowledge of appendicitis
and evaluated whether providing basic medical information would affect their perception of the disease and
allow them to more rationally consider the treatment alternatives.
Methods: Families of children aged 518 presenting to the Emergency Department with suspected appendicitis
were recruited for a tablet-based interactive educational survey. One hundred subjects (caregivers and patients
15 years) were questioned before and after an education session about their understanding of appendicitis,
including questions on three hypothetical treatment options: urgent appendectomy, antibiotics alone, or initial
antibiotics followed by elective appendectomy. Subjects were clearly informed that urgent appendectomy is
currently the standard of care.
Results: Only 14% of respondents correctly identied the mortality rate of appendicitis (17 deaths/year according
to the 2010 US census) when compared with other extremely rare causes of death. Fifty-four and 31% thought it
was more common than death from lightning (40/year) and hunting-associated deaths (44/year), respectively.
Eighty-two percent of respondents believed it likely or very likely that the appendix would rupture if operation was at all delayed, and 81% believed that rupture of the appendix would rapidly lead to severe complications
and death. In univariate analysis, this perception was signicantly more prevalent for mothers (odds ratio, (OR)
5.19, condence interval (CI) 1.3321.15), and subjects who knew at least one friend or relative who had a
negative experience with appendicitis (OR 5.53, CI 1.4025.47). Following education, these perceptions changed
signicantly (53% still believed that immediate operation was necessary, and 47% believed perforation led to
great morbidity and potential mortality, P b 0.001). In a survey of potential appendicitis treatment options,
urgent appendectomy was considered a good or very good option by 74% of subjects, compared with
68% for antibiotics only without appendectomy and 49% for initial antibiotic therapy followed by elective
outpatient appendectomy.
Conclusion: There was a striking knowledge gap in the participant perception of appendicitis. Appropriate
education can correct anecdotally supported misconceptions. Adequate education may empower patients to
make better-informed decisions about their medical care and may be important for future studies in alternative
treatments for appendicitis in children.
2016 Elsevier Inc. All rights reserved.

Acute appendicitis is the most common surgical emergency in the

pediatric population. In the United States over 300,000 appendectomies
are performed each year, over 70,000 operations in patients younger
Level of evidence: II.
Roles:Concept of the study: DC, FIL, THC, SSC. Patient enrollment, study performance:
DC, FIL, DWS. Analysis of results: DC, FIL. Manuscript preparation: DC, AGK, FIL. Manuscript
review and approval: FIL, AGK, THC, SSC
Corresponding author at: Hasbro Childrens Hospital, Division of Pediatric Surgery, 2,
Dudley Street, Suite 190, Providence, RI 02905. Tel.: +1 401 228 0556.
E-mail address: Francois_Luks@brown.edu (F.I. Luks).
http://dx.doi.org/10.1016/j.jpedsurg.2015.10.029
0022-3468/ 2016 Elsevier Inc. All rights reserved.

than 18 years [1]. The traditional emergency surgical management of

appendicitis has been challenged. In a 2012 survey of members of the
American Pediatric Surgical Association (APSA) [2], only 4% of 484 physicians polled considered non-perforated appendicitis to be an emergent procedure; most indicated that urgent surgery within a day was
a reasonable approach to treatment. This is a marked shift from the prevailing opinion only a decade ago, when a quarter of polled APSA members still viewed appendectomy as an emergent procedure [3].
Supporting this paradigm shift are several studies that demonstrated
no increase in morbidity and mortality of appendicitis, and no increase

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D.B. Chau et al. / Journal of Pediatric Surgery 51 (2016) 117121

in perforation, when appendectomy was postponed overnight [46].

This shift away from the emergent surgical nature of appendicitis has
enabled the consideration of alternative management strategies for
the treatment of acute appendicitis [79].
There has been extensive experience in the adult and pediatric literature with interval appendectomy for perforated appendicitis for those
patients presenting with localized abscesses and minimal systemic
symptoms [9,10]. A new concept has emerged suggesting that antibiotic
therapy could be offered as primary treatment for acute appendicitis.
Nonoperative treatment has been documented as an effective alternative when access to surgical care was limited as far back as the 1950s
[7,11]. The concept of offering nonoperative therapy as an alternative
to surgery was evaluated in a 2006 study by Styrud et al. [8] who randomized treatment among 252 men with acute appendicitis. The vast
majority (86%) of the men treated with antibiotics only showed rapid
clinical improvement. Patients who had no resolution of symptoms
(14%) underwent appendectomy. Only 14% experienced recurrent
appendicitis at 1 year follow-up.
While several studies have assessed these changing perspectives on
the management of appendicitis within the medical community, very
little is known about patient attitudes and expectations when a diagnosis of appendicitis is made. As alternatives to urgent appendectomy for
appendicitis are now being evaluated in children, we surveyed patients
and their families regarding their knowledge of appendicitis, and evaluated whether up-to-date medical information could affect their perception of the disease and enable them to accept treatment alternatives.
1. Methods
This prospective study was conducted in the emergency department
of Hasbro Childrens Hospital, a tertiary pediatric care center, from
August 2013 to January 2014. We identied children ages 518 years
with clinical suspicion for appendicitis, and approached their families/
caregivers for participation in a computer tablet-based interactive educational survey. The educational presentation provided them with morbidity and mortality information on appendicitis, including statistics
from Hasbro Childrens Hospital [6,12,13] as well as information regarding current and emerging treatment options (see Appendix). Caregivers
and patients older than 14 years were asked about their attitude toward
appendicitis (based on their knowledge, concerns, and impressions)
before and after the information session. They were also queried as to
their willingness to consider each of three treatment options: urgent appendectomy, antibiotic therapy alone, or antibiotics followed by elective
appendectomy. (Subjects were clearly informed that urgent appendectomy is currently the only acceptable treatment for acute appendicitis).
Some questions were repeated at the end of the educational session.
In order to better understand the basis of their attitude towards
appendicitis, all subjects were asked if they had prior personal
experience with appendicitis. Demographic data collected included age
of patient/caregiver, gender, highest level of education, and ethnicity.
Statistical analysis of subgroups was performed using student t test
for continuous variables and chi-square analysis for proportions.
Subgroups assessed include: family role (mother, father, patient), past
experience recollection (none, easy, complicated), ethnicity. Signicance was established at a P value b0.05. Values are expressed as
mean standard deviation (SD).
This study was approved by the institutional review board (IRB) of
Hasbro Childrens/Rhode Island Hospital. The content of the educational
survey was reviewed for readability at the 8th grade level and approved
by the IRB.

Table 1
Demographic characteristics of the subjects.
N
Subject

Ethnicity

Level of education (parents)

Previous experience with appendicitis

Child
Mother
Father
Black/African-American
White/Caucasian
Hispanic/Latino
High school or less
At least some college
Post-graduate education
None
Good
Bad

20
54
26
5
70
25
32
34
14
37
33
30

2.1. Current knowledge of the general public regarding appendicitis

According to the 2010 US census, 17 deaths/year are attributable to
appendicitis [14]. When given a scale of magnitude comparing various
risks of death, only 14% of respondents (5% of patients, 16% of parents)
correctly identied the exceptionally low mortality risk of appendicitis
(lower than death from dog attacks, 26/year, or lightning, 44/year).
Fourteen percent of respondents thought appendicitis mortality was
as common as beach-related or biking deaths, which are 1050
more common (Fig. 1). Respondents who knew at least one friend or
relative who had a relatively easy experience with appendicitis recovery believed the mortality of appendicitis to be signicantly lower than
those with no prior experience with appendicitis and those who knew
at least one friend or relative who had a complicated experience
with appendicitis recovery (P b 0.05).
Eighty-two percent of respondents believed it likely or very likely that the appendix would rupture if not operated on immediately,
and 81% believed that rupture of the appendix would rapidly lead to severe complications and death. In univariate analysis, this perception
was signicantly more prevalent for mothers compared with fathers,
parents who had a high school education or less (compared with college
education) and subjects who knew at least one friend or relative who
had had a bad experience with appendicitis. In multivariate analysis,
the perception that the appendix would rupture if not operated on
immediately continued to be signicantly more prevalent in mothers
compared with fathers, and parents who had a high school education
or less (Table 2). No signicant difference in belief was demonstrated
in subgroups by ethnicity or when comparing patient responses to
parent responses.
2.2. The effect of basic medical information on perceptions of appendicitis
Following a short tablet-based educational session (see Appendix),
these perceptions changed signicantly. Fifty-three percent of respondents ultimately believed that the appendix would rupture if not

2. Results
One hundred subjects (80 parents, 20 patients N 15 years old) were
recruited for the survey. Demographic data are noted in Table 1.

Fig. 1. Patients and families perception of the lethality of appendicitis (see text for details;
according to the 2010 U.S. Census [14], 17 deaths/year are attributable to appendicitis
fewer than dog attacks).

D.B. Chau et al. / Journal of Pediatric Surgery 51 (2016) 117121

119

Table 2
Analysis of risk factors for the perception that, if not operated immediately, early acute appendicitis will lead to rupture.
Univariate Analysis

Previous bad experience with appendicitis (vs. No or good experience)

High school education or less (vs. College or postgraduate education)
Mother (vs. Father)

Multivariate Analysis

OR

CI

OR

CI

5.53
3.32
5.19

1.4025.47
1.0210.84
1.3321.15

0.005
0.02
0.005

1.67
4.91
5.07

0.648.96
1.1917.18
1.2116.15

0.20
0.02
0.02

CI: Condence Interval, OR: Odds Ratio.

operated on immediately, compared with 82% before education

(P b 0.001). Similarly, 47% of those polled believed that rupture of the
appendix would rapidly lead to severe complications and death following education, compared with 81% before education (P b 0.001) (Fig. 2).
These responses were signicant across all subgroups. Regardless of
categorization of their responses (very likely, likely, unlikely,
very likely), 45% of subjects demonstrated a decreased level of concern regarding the risk of rupture if appendectomy wasnt performed
immediately (Fig. 3A). Similarly, 49% decreased their concern that rupture rapidly and substantially increased the risk of mortality (Fig. 3B).
When considering the prior exposure to appendicitis (none, good or
bad experience), there was no signicant difference in how the educational session affected risk perception for acute appendicitis.
2.3. View of the general public towards current and emerging
treatment modalities
At the conclusion of the interactive survey, subjects were asked to
rate various methods of treatment for appendicitis. Seventy-four percent of subjects considered immediate appendectomy a reasonable
choice. Sixty-eight percent would consider antibiotic therapy only a reasonable choice, while 49% considered antibiotic therapy followed by an
elective outpatient appendectomy a reasonable choice (Fig. 4). Of note,
subjects were asked to consider each modality individually, and were
not asked to rank them in order of preference.
When categorized by experience level with appendicitis,
respondents who had previous easy experiences with appendicitis
demonstrated a signicantly higher willingness to undergo alternative
therapies (antibiotics only, and antibiotics now with elective appendectomy scheduled for a later date) than other subgroups.

It is within this framework that the current project sought to illuminate

the patient decision-making process for pediatric acute appendicitis.
The results of this survey demonstrate a striking knowledge gap in
the publics beliefs regarding appendicitis. Observing the effect of several subject characteristics on views of appendicitis severity revealed a
more severe perspective of the morbidity and mortality of appendicitis
with mothers (compared with fathers), and respondents without a college education.
Appropriate education partially succeeded in relieving unfounded
fears regarding the disease with a signicant shift in polled opinion towards a less severe outlook on the mortality and complications of appendicitis. It was further demonstrated that basic medical education
affected all subjects equally, regardless of experience level with appendicitis, emphasizing the need for adequate education across the board.
The use of a tablet-based interface was effective in providing information to participants in an efcient and timely manner and was further effective in establishing a baseline from which subjects could ask
further questions. However, a signicant number of participants did
not demonstrate a change in perception following education and this
persistence in perception may be better addressed with an interface
that identies the key concerns of each participant and provides subsequent basic medical information tailored towards those areas.
Recent literature has found that the use of antibiotics alone might be
a viable option for the treatment of early appendicitis in the pediatric
population. In a 2015 study by Svennson et al. [16], 92% of those treated

3. Discussion
With the creation of initiatives like the Patient Centered Outcomes
Research Institute (PCORI) in 2010, an intentional shift is being made
towards greater patient input in complex medical decisions [15]. The intent is to understand barriers patients may have to medical treatment,
enable patients to have informed expectations of their treatment
outcomes, and optimize outcomes that are most important to patients.

Fig. 2. Patients and families perception of the risks of appendicitis, before and after a
tablet-based educational session (see text and Appendix for details).

Fig. 3. Patients and families perception of the risk of appendicitis to A) rupture if

surgery is not performed emergently, and B) lead to severe complications and death
once it ruptures. Comparison between before and after a tablet-based educational session
(see Appendix for details).

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D.B. Chau et al. / Journal of Pediatric Surgery 51 (2016) 117121

QUESTION:
Do you know anyone who has been treated for appendicitis? (Yes/No).
If yes, who? (Myself/My child/My parent/My friend/Other)
Rate how the symptoms and treatment were experienced (8-point
scale, from Easy to Complicated)
How is appendicitis diagnosed?
Imaging tools like ultrasound help conrm the diagnosis. This can
help avoid removing a normal appendix. Here at Hasbro, ultrasound
and other tests have decreased falsepositives (operating for a normal
appendix) from 16% to less than 3%. They have also decreased the rate
of missed appendicitis from 16% to 4%.

Fig. 4. Patients and families attitudes toward three potential treatment options (currently, only the rst, immediate surgery, is clinically acceptable). Each treatment option was
considered separately. See text for details.

with antibiotics for appendicitis had initial resolution of symptoms with

5% of this group having recurrence of appendicitis at 6 month follow up.
Although the risk of recurrence exists in nonoperative management,
further inquiry into reducing this risk has already begun. A 2014 study
by Koike et al. [17] identied intraluminal appendiceal uid at initial
admission as a strong predictive factor for recurrence. Identifying risk
factors for recurrence will allow physicians to identify ideal candidates
for nonoperative management.
While not yet the standard, antibiotics-only treatment could provide
a feasible and less invasive option for children [18], and lessen the burden on hospital operating room schedules, patient recovery times and
parent absence from work. A 2011 study by Andersson et al. [19] with
over 110,000 adult cases demonstrated higher 30-day mortality in negative appendectomy cases than appendectomies for perforated and
non-perforated appendicitis, demonstrating that there are still risks to
the current gold standard. Nonoperative treatment for appendicitis
could also have positive implications worldwide, in areas with limited
access to surgical care [7].
This study operated out of the only childrens hospital in the state.
There may be a difference in perception between those who initially
presented to the emergency department, those referred by primary
care, and those transferred from another urgent care facility who may
have been primed to expect an appendectomy prior to arrival. Further
inquiry into patient-centered decision making should take into consideration the severity of patient presentation to the hospital and whether
or not the patients level of pain and distress affected parent and patient
preferences towards hypothetical treatment options.
Understanding lay perceptions of treatment options and efcacies
will inform future approaches to the treatment of appendicitis by
assessing the communitys level of preference towards emerging treatment modalities, identifying future directions for patient-centered clinical trials.
Appendix A. Questionnaire and educational pamphlet given
to participants
A.1. What is appendicitis?
The appendix is a hollow tubelike pouch attached to the rst
portion of the large intestine. Because of its narrow size, it can become
plugged by digested food that is passing through the bowel. Pressure
and infection may build inside the appendix. This inammation
is appendicitis.
A.2. What are the symptoms?
Acute appendicitis is the most common surgical emergency in
children. It most often presents as pain below and to the right of the
belly button. Nausea, vomiting, and fever are also common symptoms.

A.3. What is the time course of appendicitis?

As the process worsens, pain becomes more intense. Infection may
cause a hole in the wall of the appendix: the infection then spreads
into the belly. This is called ruptured or perforated or burst appendicitis.
The person may become sicker, unless he or she is treated.
QUESTION:
Please rate this statement: If surgery is not done right away on
someone with appendicitis, the appendix will rupture. (8-point scale,
from Very Unlikely to Very Likely)
QUESTION:
Please rate this statement: As soon as an appendix ruptures, the
patient will become very sick and may even die. (8-point scale,
from Very Unlikely to Very Likely)
QUESTION:
Dying from appendicitis is very, very rare nowadays. How rare do
you think it is, compared to these other death rates? (11-point scale,
from Lowest to Highest through less common than, as common as,
or more common than death from a Dog attack, Lightning, Hunting
accident, Beach accident, Biking accident)
ANSWER: Of all the death rates listed, appendicitis is the lowest. This
number is even lower in kids because most of the deaths are elderly and
have other medical conditions. Number of U.S. deaths/year: Appendicitis =
17, Dog attacks = 26, Lightning = 40, Hunting accidents = 44, Beachrelated accidents = 132, Bike accidents = 750.

A.4. What is the time course of appendicitis?

It is hard to tell exactly when appendicitis starts. The time to rupture
is not known either, but usually takes a few days. A study performed at
Hasbro in 20102 found that the risk of rupture was 0% in the rst 12 h
after the onset of symptoms. The risk of perforation after 24 h of symptoms was 10%. The risk was almost 40% after 3 days.

A.5. Which complications can occur?

Complications of appendicitis include: diarrhea, abscess (collection
of pus) in the belly, wound infection and blocked intestine. However,
these risks are low.
Here at Hasbro, the risks for early appendicitis are: Abscess (collection of pus), 2.1%; Wound infection, 2.1%. For ruptured appendicitis,
the rates are: Abscess (collection of pus), 16.3%; Wound infection,
2.3%; Return to hospital, 2.3%.

A.6. How serious is appendicitis?

With better tests to diagnose and antibiotics to treat, the risk of
complications has dropped signicantly. The risk of death from early
appendicitis is zero. The risk of death in advanced, complicated
appendicitis is now close to zero. Appendicitis is no longer considered
a surgical emergency.

D.B. Chau et al. / Journal of Pediatric Surgery 51 (2016) 117121

A.7. How urgent is the treatment?

In a survey conducted 2 years ago, only 4% of 484 pediatric surgeons
considered early appendicitis a surgical emergency. Instead of emergent
surgery (within hours), most surgeons consider urgent surgery (within
a day) to be safe. This has prompted research into other safe alternatives
for the treatment of appendicitis. Some patients may not even require
surgery at all.

121

QUESTION:
If it were up to you, how would you feel about the following
treatment for early appendicitis? (8-point Likert scale, from Most denitely
to Absolutely not):
Immediate surgery to remove the appendix
Antibiotics (at home) for a week. Surgery only if the pain continues
or comes back
Antibiotics now, and surgery at a later date (when it is more convenient for me)

A.8. What are the treatment options?

References
In adults, three forms of treatment are effective in early appendicitis.
These are: (1) Immediate surgical removal of the appendix, (2) antibiotics only, (3) antibiotics only with surgery 2 months later. Similar studies are now under way in children.
A.9. What should I expect from surgery?
The operation takes about an hour. It is done under general anesthesia. It may be done open with a small cut below and to the right of
the belly button (A); Or by laparoscopy (keyhole surgery), with three
smaller cuts (B). Both have similar results.
A.10. What should I expect after surgery?
Antibiotics are given during, and sometimes after the operation. The
hospital stay at Hasbro is, on average, 1.8 days for early appendicitis;
5.5 days for perforated appendicitis; and 3.2 days for all cases of appendicitis.
A.11. What should I expect after going home?
It may take 12 weeks to return to a normal daily routine. You will be
expected to return to your surgeon's ofce within 34 weeks for followup.
A.12. Can appendicitis be treated with antibiotics only?
In adults, early appendicitis can be treated with antibiotics alone
without urgent surgery. Antibiotics-only approach to treat early appendicitis
is still being studied in children.
QUESTION:
Please rate this statement: If surgery is not done right away on
someone with appendicitis, the appendix will burst. (8-point scale,
from Very Unlikely to Very Likely)
QUESTION:
Please rate this statement: As soon as an appendix ruptures, the
patient will become very sick and may even die. (8-point scale,
from Very Unlikely to Very Likely)

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