Journal of Pediatric Surgery xxx (2016) xxx–xxx

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Journal of Pediatric Surgery

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

Cost of ambulatory care for the pediatric intestinal failure patient:

One-year follow-up after primary discharge☆
Christina Kosar a, Karen Steinberg a, Nicole de Silva a, Yaron Avitzur a,b, Paul W. Wales a,c,⁎
a
Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, University of Toronto, Canada
b
Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, University of Toronto, Canada
c
Division of General and Thoracic Surgery, The Hospital for Sick Children, University of Toronto, Canada

a r t i c l e i n f o a b s t r a c t

Article history: Background: Survival of children with intestinal failure has improved over the last decade, resulting in increased
Received 26 January 2016 health care expenditures. Our objective was to determine outpatient costs for the first year after primary discharge.
Accepted 7 February 2016 Methods: A retrospective analysis was performed in pediatric intestinal failure (PIF) patients between 2010 and
Available online xxxx 2012. Patients were stratified into 3 groups (1 = enteral support with no devices [7 patients], 2 = enteral support
with devices (gastrostomy and/or ostomy) [19 patients], 3 = home parenteral nutrition (HPN) [22 patients]). Data
Key words:
abstraction included clinical characteristics and costs related to medication, enteral/parenteral nutrition, and
Pediatric
Intestinal failure
supplies were calculated. Data were analyzed using one way ANOVA.
Costs Results: Forty-eight patients (mean age 7.6 months; 31 males [65%]) were studied. See attached table for results.
Ambulatory HPN patients had significantly more ambulatory visits (p b 0.0001), number of admitted days (p = 0.01),
and productive days lost (p b 0.0001). Total cost of care was significantly higher for HPN patients (mean =
$320,368.50, p b 0.0001) when compared to other groups. Costs covered by the health care system were signif-
icantly higher for patients on HPN (mean = $316,101.56, p b 0.0001).
Conclusion: The outpatient expenditures to care for PIF patients in the first year post primary discharge are
significant. Our single payer health care system supports the majority of costs, but families are also incurring
expenses related to travel and lost productivity. Children on HPN have more visits to hospital, but have access
to more funding options. Children solely on gastrostomy or stoma therapy, however, have a significantly greater
personal financial burden.
© 2016 Elsevier Inc. All rights reserved.

Long-term parenteral nutrition support is a common therapeutic
strategy for the management of children with intestinal failure (IF) in
both the inpatient and home setting. IF is defined as the inability of
the intestine to digest and absorb adequate nutrients and fluid to
support survival and growth [1–3]. Pediatric intestinal failure (PIF) is
caused from short bowel syndrome (SBS), intestinal motility disorders
and mucosal enteropathies [1]. The most common cause of PIF is SBS
with an estimated incidence of 22.1 per 1000 neonatal intensive care
admissions and 24.5 per 100,000 live births [4]. Mortality rates vary
greatly depending on age, underlying diagnosis and length of small
bowel remaining, but are traditionally estimated at 30% [5–7]. Survival
Abbreviations: IF, intestinal failure; PIF, pediatric intestinal failure; SBS, short bowel
syndrome; IRP, intestinal rehabilitation programs; PN, parenteral nutrition; HPN, home
parenteral nutrition; GIFT, Group for Improvement of Intestinal Function and Treatment;
CAD, Canadian dollars; ODB, Ontario Drug Benefit; REB, research ethics board; km, kilome-
ters; SB, small bowel; LB, large bowel.
☆ Level of Evidence: 3.
⁎ Corresponding author at: The Hospital for Sick Children, Rm 1526, 555 University
Avenue, Toronto, Ontario M5G 1X8, Canada. Tel.: +1 416 813 7654x201490; fax: + 1
416 813 7477.
E-mail address: paul.wales@sickkids.ca (P.W. Wales).
rates continue to improve with the introduction of intestinal rehabilita-
tion programs (IRP) and novel medical therapies [8–13]. Children with
IF remain at risk for a variety of morbidities including liver dysfunction,
electrolyte derangement, metabolic bone disease, central line and infec-
tious complications [8–9,14–16].
With improved survival rates more patients are requiring intensive
management within the home setting for parenteral nutrition (PN),
and management of enteral therapy and medications/supplements.
Many studies have evaluated the cost of care, but have mainly looked
at the adult population or the isolated cost of PN including both inpa-
tient and outpatient costs [17–26]. Few studies have discussed patient
or family's out of pocket expenses. Intestinal failure patients require a
number of interventions that are independent of home parenteral nutri-
tion (HPN) including enteral device therapy (gastrostomy and stoma
care), specialized nutrition products, intravenous fluid and electrolyte
replacements, medications and vitamin and mineral supplements.
Costs also vary significantly between countries depending on the partic-
ular model of health care delivery. To date there is no information avail-
able on the outpatient costs of care for various types of IF intervention.
The objective of our study was to determine the ambulatory cost of
care in the first year after primary discharge in pediatric IF patients

http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
0022-3468/© 2016 Elsevier Inc. All rights reserved.

Please cite this article as: Kosar C, et al, Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary
discharge, J Pediatr Surg (2016), http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
2 C. Kosar et al. / Journal of Pediatric Surgery xxx (2016) xxx–xxx
stratified by degree of medical intervention. We were interested in de-
termining total cost of care to the health care system, as well as, the
cost incurred by individual families.
1. Methods
The Hospital for Sick Children is a tertiary care facility in Toronto,
Canada. The Group for Improvement of Intestinal Function and Treat-
ment (GIFT) was Canada's first multidisciplinary team established for
the management of children with IF. GIFT was established in 2002 and
has representation from general surgery, gastroenterology, transplanta-
tion, nursing, nutrition, occupational and physiotherapy, social work,
neonatology, and psychology. Early intervention has been the corner-
stone of the rehabilitation program and our mandate has been to
improve the clinical care of patients with IF and to create new knowl-
edge through clinical and basic science research. The team is responsible
for the assessment and management of pediatric IF patients in the inpa-
tient and outpatient setting, providing patients with consistency of care.
1.1. Study design and study population
A retrospective cohort study of pediatric IF patients was completed
to evaluate patients managed by our multidisciplinary intestinal reha-
bilitation team. Patients included in the study were discharged from
hospital after their primary admission between January 1, 2010 and De-
cember 31, 2012 with one full year of follow-up. Patients were stratified
into three groups: No medical device (reached full oral enteral autonomy
prior to discharge, but may have required various medications, supple-
ments or formulas), Enteral device (reached full enteral autonomy prior
to discharge, but was discharged with a feeding enterostomy tube
[gastrostomy or gastrojejunostomy] and/or the presence of an ostomy),
Home Parenteral Nutrition (patients discharged on parenteral nutrition,
but may have also possessed a medical device such as a feeding enteros-
tomy or ostomy). Patients were followed for one year following their
primary discharge from hospital. Patients were excluded if they did
not have one full year of follow-up, were not Ontario residents or
underwent organ transplantation.
1.2. Determination of cost of care
Data were collected using the electronic patient chart, as well as
health records. Demographic data collected included gestational age
(weeks), gender, etiology of IF, category of IF (SBS, dysmotility, mucosal
enteropathy), duration of primary admission and distance from hospital
to home (in kilometers [km]). Additional data collected included
readmissions to hospital within one year post discharge (including
number of admissions and number of admitted days). Ambulatory
data collected included costs associated with clinic visits, bloodwork
appointments and diagnostic imaging.
Table 1
Patient demographics.
No medical device (n = 7)
Age at discharge (mo) 4.4 (2.1)
Gender, male (%) 5 (71.4)
Birth weight (g) 2786.4 (878.6)
GA (wk) 34.9 (3.7)
IF category (%)
Short bowel syndrome 6 (86)
Dysmotility 1 (14)
Mucosal enteropathy 0 0
Percent SB remaining 67.9 (22.4)
Percent LB remaining 79.3 (36.1)
Values are expressed as means with standard deviation.
% represents frequencies with percentages.
⁎ Hypothesis testing performed using one-way ANOVA or chi square where appropriate.
Please cite this article as: Kosar C, et al, Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary
discharge, J Pediatr Surg (2016), http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
Ambulatory visit expenses represented out of pocket expenses
incurred by families related to return visits to hospital. After accounting
for the distance the patient traveled for appointments, transportation
costs were determined, including mileage [27] and parking rate of $12
per visit. Overnight accommodation at our affiliated hotel with parent
rate for patients traveling greater than 200 km was included at a rate
of $100 per night. For parental meals while readmitted to hospital we
included one food voucher valued at $8 Canadian dollars (CAD) daily.
We estimated productive days lost for one parent. Many parents
may be initially on maternity/paternity leave when the patient is first
discharged home, but often have to return to work during that first
year. Often both parents are present at clinic appointments or take shifts
during readmissions. While this likely impacts ability to work and
personal income, we did not include a monetary value to our findings
owing to the lack of precision in making these estimates.
Medication expenses included both prescription and “over the coun-
ter” therapies that patients were receiving. The cost/dollar value of the
medications, supplements and enteral nutrition products were obtained
from the Ontario Drug Benefit (ODB) fee schedule and outpatient phar-
macy price list, along with standard dispensing fees.
Device expenses related to enteral therapy (feeding enterostomy
supplies, enteral feeding pump and ostomy appliances) were deter-
mined. Expenses were based on outpatient provider information and
catalogues provided to families.
Nutritional expenses were calculated for both enteral and parenteral
nutrition. Enteral nutrition costs included type of formula, daily volume
and method of administration. Parenteral nutrition expenses included
parenteral solutions, vitamin injections, hydration solutions, adminis-
tration supplies, pump rental and miscellaneous costs associated with
PN administration. Parenteral nutrition costs were obtained from an
outpatient pharmacy based on their average charges under the Ontario
Drug Benefit program and supply charges covered by Community Care
Access Centre. Solid or table food lists were not collected owing to
extreme variability and is an expected family maintenance cost.
1.3. Data analysis
Analysis was based on patient level data and expenses were adjusted
to 2014 Canadian dollars (CAD). The calculated costs included the over-
all total cost of all outpatient expenses, cost to the government and out
of pocket cost to the family. Canada has a single payer health care
system with universal access and health care is provincially funded.
The costs to the family were calculated based on what was not covered
under provincially funded drug benefit programs and subsidy programs
if they qualified and general “out of pocket” expenses. Some families
may have additional extended coverage depending on private insur-
ance, but this was not included in our analysis.
Baseline and patient outcome data were compared using appropri-
ate summary statistics and continuous variables were presented using
means and standard deviations and groups were compared using one-
Enteral device (n = 19) HPN (n = 22) P-value⁎
6.7 (2.5) 9.3 (11.6) 0.329
13 (68.4) 13 (59.1) 0.757
1607.7 (738.9) 2154.8 (932.5) 0.008
31.3 (4.2) 34.1 (3.8) 0.042
0.284
17 (89) 20 (91)
2 (11) 0
2 (9)
74.2 (22.3) 35.5 (29.8) b0.001
87.6 (30.3) 70 (32.9) 0.23
 C. Kosar et al. / Journal of Pediatric Surgery xxx (2016) xxx–xxx
Table 2
Hospital readmissions and ambulatory visits in first year post primary admission.
No medical device (n = 7)
Length of primary hospitalization (d) 98 (36.5)
Distance from home to hospital (km) 62.6 (65.9)
No. of ambulatory visits 6.7 (1.3)
No. of readmissions 0.29 (0.5)
No. of readmitted days 4.7 (8.3)
Caregiver productive days lost 11.4 (9.1)
Values are expressed as means with standard deviation.
⁎ Hypothesis testing performed using one-way ANOVA.
way ANOVA with a p-value of b0.05 being significant. IBM SPSS Statis-
tics 22 (2013) was used for statistical analysis.
The study was approved by The Hospital for Sick Children research
ethics board (REB# 1000042603).
2. Results
2.1. Patient demographics
During the study period, forty-eight patients met inclusion criteria
with a mean age of 7.6 months and 31 patients were male (65%). Of
the participants 7 patients required no medical device (15%), 19 patients
required an enteral device (40%) and 22 patients were on HPN (46%). The
majority of patients had SBS as the cause of their intestinal failure and
this was not significantly different between the 3 groups. Age at primary
discharge (months) and gender were also similar between the 3 groups.
Patients in the enteral device group had lower birth weight (p b 0.01)
and gestational age (p = 0.042), respectively. The HPN group possessed
a shorter percentage of residual small bowel (p b 0.01). Patient charac-
teristics are displayed in Table 1.
2.2. Hospital visits and ambulatory visit expenses
Results for hospital visits and admission information are included in
Table 2. Primary length of stay and distance from home to hospital were
not significantly different between groups. As expected children on HPN
had significantly more ambulatory visits to hospital with approximately
20 visits in the first year after discharge compared to 12 for the enteral
device group and 7 for the no medical device group (p b 0.01). HPN pa-
tients also had a mean of 3 admissions in the first year for approximately
28 admitted days compared to 1 admission for the enteral therapy
group and b 1 for the no medical device group (p b 0.01). We also
found that families with children on HPN have significantly more pro-
ductive days lost when compared to the other groups (49.6 vs 11.4
and 22.4 days; p b 0.01).
Fig. 1. Ambulatory visit expenses. The costs associated with ambulatory visits to hospital are essentially out-of-pocket expenses for families (transportation costs, meals, parking, accom-
modation). Ambulatory costs were significantly higher for patients on HPN given their increased frequency of hospital visits for clinics, laboratory tests and diagnostic imaging ($1184.98
vs $594.32 and $313.14; p b 0.01).
Please cite this article as: Kosar C, et al, Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary
discharge, J Pediatr Surg (2016), http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
3
Enteral device (n = 19) HPN (n = 22) P-value⁎
157 (63.7) 140 (78.0) 0.162
121.0 (174.2) 109.3 (151.1) 0.688
11.9 (6.4) 20.4 (8.7) b0.001
1.2 (1.4) 3.2 (2.4) 0.001
10.1 (17.0) 27.7 (26.1) 0.010
22.4 (21.4) 49.6 (30.2) b0.001
The costs associated with ambulatory visits to hospital (transporta-
tion costs, meals, parking, accommodation) were significantly higher
for patients on HPN given their increased frequency of hospital visits
for clinics, laboratory tests and diagnostic imaging ($1184.98 vs
$594.32 and $313.14; p b 0.01). Ambulatory travel expenses are
shown in Fig. 1.
2.3. Medical device, medication and enteral nutrition expenses
Global device cost for both enterostomy feeding and ostomy was
similar between the enteral device and HPN groups, but significantly
higher when compared to patients with no medical devices as expected
(shown in Fig. 2). Global expenses for enterostomy feeding were
between CAD $2100 and $2500 per annum and CAD $3516 per
annum for ostomy care. Family expenses for both devices were also sim-
ilar for the enteral device group and HPN group as families have access
to the same subsidy programs for these devices. Government subsidy
programs cover approximately 50% of recommended number/quota of
enterostomy feeding supplies and 20% of recommended number of
ostomy appliances leaving families responsible for CAD $1130/year for
enterostomy feeding and CAD $2916/year for ostomy care, respectively.
The HPN group had significantly more global expenses for medica-
tions (including prescription and over the counter supplements)
accounting for CAD $4673.79 per annum compared to CAD $872.61
for the enteral device group and CAD $397.53 for the no medical device
group (p b 0.01). However after accounting for drug benefit program
subsidies the HPN group was comparable to the other groups with out
of pocket expenses of CAD $478.79 (compared to CAD $799.50 for
enteral device patients and CAD $397.53 for no medical device group),
which was not statistically significant. Results are displayed in Fig. 3.
The expenses for enteral nutrition per annum (Fig. 4) were compa-
rable between all groups for global cost (ranging from CAD $2575.59
to CAD $4802.66 per year). The HPN group; however, had significantly
reduced out of pocket expenses from CAD $2895.98 to CAD $187.65
after accounting for drug benefit program subsidies (p b 0.01).
4 C. Kosar et al. / Journal of Pediatric Surgery xxx (2016) xxx–xxx

Fig. 2. Medical device expenses. Global and family expenses for devices (enterostomy feeding and stomas) were similar for the enteral device group and HPN group as families have access
to the same subsidy programs for these devices. Government subsidy programs cover approximately 50% of recommended use of gastrostomy supplies and 20% of recommended supply
use for ostomy appliances.

2.4. Calculation of total costs
Overall costs of care were calculated after obtaining all costs from
other categories (Fig. 5). The cost of home parenteral nutrition per
year is approximately CAD $300,000, but families do not incur any of
this expense as it is covered under government drug benefit programs
and home care services. The total cost of care per annum is significantly
higher for patients on HPN (CAD $320,369 vs $8969 and $3742;
p b 0.01) with the majority of the difference related to parenteral nutri-
tion. This also translates to a significant cost to the health care system at
a mean of CAD $316,102 per year as the expense of HPN is covered
under subsidy and drug programs. The cost to the system is negligible
for the other groups at CAD $1855 for the enteral device group and
$0CAD for the no medical device group (p b 0.01).
When we evaluated the total costs to the family, the enteral device
group had a larger out of pocket expense at CAD $7115 per year com-
pared to CAD $4267 for the HPN group and CAD $3438 for the no medical
device group (p b 0.01).
3. Discussion
The benefits of multidisciplinary intestinal rehabilitation teams in
the management of children with IF has been published by individual
centers [28–31] and has also been the subject of a recent systematic
review that demonstrated reduced septic complications and an increase
in overall patient survival of 22% after institution of an intestinal rehabil-
itation program [11]. With improved survival has come a significant
increase in our ambulatory patient activity along with an increasingly
complex patient population. In our program we have seen our ambula-
tory visit volumes increase 100% in the past 5 years.
Presently, the literature regarding cost of care in intestinal failure
is limited, highly variable and difficult to interpret. The majority of
publications focus on adult patients [17–21] who are very different
from infants and children. Some studies report the cost comparing
home versus hospital parenteral nutrition [17,18] or specifically discuss
Medicare charges in the United States [22,23]. The cost effectiveness of
HPN versus inhospital therapy has also been demonstrated by several
authors [14,17,18,24]. Piamjariyakul et al. evaluated the out of pocket
expenses for patients on HPN, but the study was not exclusively pediat-
ric and did not account for other intestinal failure patients receiving
enteral therapy in the absence of HPN [20]. In addition, the significant
variation in health care delivery between countries can make compari-
sons difficult.
Two Canadian studies examined the economic impact of HPN in the
adult population and showed a significant reduction between inhospital
and home. Marshall et al. [17] found a savings of $5000 per month for
patients on HPN based on 2002 CAD, but no other Canadian data have
been published to show the pediatric population or impact on the
family for out of pocket expenses. In the pediatric study by Spencer
et al. [25] they evaluated both in hospital, home care and outpatient
costs of pediatric short-bowel syndrome. They demonstrated an
increasing cost for home care services over the first five years after
diagnoses. Their cost estimate in the fifth year after discharge was
$184,520 ± $111,075 based on 2005 USD. They attributed the increas-
ing costs over time to increasing complications related to long-term
parenteral nutrition. They did not include IF patients not receiving

Fig. 3. Medication expenses. The HPN group had significantly more global medical expenses at just over CAD $4500 per annum, but after subsidies and drug benefit programs their out of
pocket expense was just under $500 and was not statistically different from the other groups.

Please cite this article as: Kosar C, et al, Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary
discharge, J Pediatr Surg (2016), http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
 C. Kosar et al. / Journal of Pediatric Surgery xxx (2016) xxx–xxx 5

Fig. 4. Enteral nutrition expenses. There was not a significant difference in global costs between the 3 groups for enteral nutrition expenses, but the family cost was significantly higher for
children with no medical device or enteral device compared to the HPN group as the HPN patients received more nutritional subsidies.

parenteral therapy. Olieman et al. [26] followed 10 patients prospective-
ly and found that costs of care comprised mainly of inhospital care and
early HPN can contribute to decreased costs to the system. Neither
paper evaluated direct costs to the family.
Our study attempted to quantify the cost of PIF based on different
patient categories. The mean total cost of care for patients receiving
home PN is CAD $320,369 for the first year post discharge. The total
mean cost is approximately CAD $9000 and CAD $3700 for patients
discharged home with an enteral device and for patients discharged
without an enteral device, respectively. The vast majority of expense
is related to the cost of home PN which is approximately $300,000.
Because of the nature of health care delivery in Canada, families do
not incur any of those expenses as home PN is covered under the
government drug programs. Relatively speaking, for patients not on
home PN, families incur the majority of the costs ranging between
CAD $3400 and CAD $7115 (Fig. 5), as these patients are not eligible
for the same government subsidies. This study has illustrated the
tremendous cost of care for pediatric patients who suffer from intestinal
failure and require home PN. The study also highlights the burden of
care to families and caregivers as shown by the frequency of ambulatory
visits, readmission rates and productive days lost by caregivers.
Certain limitations of our study require acknowledgment. The retro-
spective design makes the data prone to observation bias and recall bias.
This is off-set by the exceptionally close follow up our program main-
tains with essentially no patients being lost to follow up. The study
only examined ambulatory cost for the first year post primary discharge.
We assume the expenses are not linear and change over time as intesti-
nal adaptation occurs and home PN is weaned. For patients who fail to
wean from PN, the annual costs would continue to be significant.
Sudan [31] demonstrated that in patients who received bowel trans-
plantation and survived, there is a point (usually at 1–3 years) where
bowel transplantation becomes more cost effective to home PN. Unfor-
tunately, 5 year survival after intestinal transplantation is still approxi-
mately 60% compared to 85–90% for home PN [7–9,29,32,33]. To date,
there is no cost effectiveness data comparing home PN to intestinal
transplantation in children that includes quality of life and health utility
scores in the analysis.
In calculating costs to the family for the different categories of care,
we made the assumption that all expenses not covered by our single
payer health care system would be assigned as a family cost. It is true
some families may have access to additional private insurance. Also,
many government benefits available to families are based on employ-
ment benefits and socioeconomic status. Hence, it is possible the actual
expenses for families will be mitigated by other funding sources they
may have access to. The cost estimates represent the cost of items/
supplies irrespective of funding or insurance.
The challenge we faced in calculating expenses related to enteral
devices was related to recommended estimates/quotas versus actual
use of supplies, specifically related to stoma appliances. For example,
expenses were based on the expected number of stoma appliance
changes per month based on supplier recommendations. Currently
families receive an annual subsidy of $600 accounting for 20% of recom-
mended supplier quotas thus the family have to pay for the other 80% of
costs. Anecdotal reports from our families indicate they use significantly
more supplies than allotted for owing to a variety of reasons: abdominal
anatomy and size, surgical scars, location of stoma, consistency/acidity
of effluent and caregiver proficiency. The average income for a Canadian
family is $76,550 based on Canadian census data [34]. Based on our
estimates families with an enteral device are spending approximately
10% of their annual income on out of pocket expenses (compared to
5% for HPN families and 4% for no medical device patients). This doesn't
include increased cost associated with diapers, stoma appliances and
food for hyperphagic children.
Another important challenge for caregivers that could not be trans-
lated to an expense is the time that they spend caring for children
with IF on a daily basis. Caregivers devote a significant amount of time
every day preparing formula, parenteral nutrition bags, administration
of feeds, gastrostomy and stoma care, ordering and procuring supplies,

Fig. 5. Total cost of care. The cost of home PN per year is approximately $300,000, but families do not incur any of those expenses as home PN is covered under the government drug pro-
grams. The cost to the system is significant for children on home PN and minimal for the other groups. The cost to the family is significantly higher for families with enteral devices (ap-
proximately CAD $7000 per year).

Please cite this article as: Kosar C, et al, Cost of ambulatory care for the pediatric intestinal failure patient: One-year follow-up after primary
discharge, J Pediatr Surg (2016), http://dx.doi.org/10.1016/j.jpedsurg.2016.02.026
6 C. Kosar et al. / Journal of Pediatric Surgery xxx (2016) xxx–xxx
care and maintenance of the CVL, medication administration and
numerous other activities. While this is a significant burden of time
for the family it cannot be translated into a tangible expense. It is impor-
tant to consider the emotional impact on family life and stress related to
caregivers who care for PIF patients. While data could not be collected
on compliance related to the expenditures that families encounter fu-
ture evaluation of a relationship between cost and adherence/outcome
would be valuable.
The data collected in this study will better prepare health care pro-
viders and families about the financial challenges and time commit-
ments required to manage a child with IF at home for the first year.
This information will enable us to be more proactive about securing
funding sources for families with limited access to financial resources.
Improved outcomes and longer survival for pediatric IF patients
translate into significant ongoing costs for children after discharge
home for both the family and the health care system. Understanding
these expenses will allow us to better prepare and advocate for this in-
creasing patient population.
Acknowledgments
All authors were involved in the final version of the manuscript. The
authors state that this study did not receive any funding. They thank
Doug MacLeod, Sahar Whalen and Aniket Sananse for their expertise
in obtaining expenses related to medications and parenteral nutrition.
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