Abstract
Objective
Intestinal failure is a high-cost pathology with a chronic course in which it is crucial to make an early diagnosis and timely referral to specialized centers in order to improve survival and reduce morbidity and mortality. The present study evaluated knowledge, attitudes, and perceptions about this diagnosis in health personnel who may be involved in the initial care of these children.
Methods
This is a descriptive observational, cross-sectional, survey-type study with a non-probabilistic snowball sampling that took pediatrics residents and pediatricians in Colombia as the study population. The information was collected between July 2023 and March 2024.
Results
There are shortcomings regarding the knowledge, diagnosis, management and complications of pediatric intestinal failure with a slightly higher proportion of correct concepts in pediatric residents. In both groups, the attitudes they take when facing a patient with this diagnosis are similar and in addition, both perceive that this pathology has an impact at the institutional, local and regional level.
Conclusions
The present study shows that, despite being nationally recognized by health professionals, intestinal failure requires effective strategies to train pediatricians and pediatric residents. It is essential that they understand this pathology, the challenges involved in its management, and the importance of timely referral to multidisciplinary care centers to improve the prognosis and quality of life of both patients and their families.
Keywords: Pediatrics, Education, Intestinal rehabilitation
What's new
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What is known about the subject
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Intestinal failure has presented changes in the definition in recent years.
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The objective of management in these patients is to achieve enteral autonomy through a process of intestinal adaptation.
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Intestinal rehabilitation centers have decreased mortality and improved survival.
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What are the new findings and the impact on clinical practice:
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Lack of studies that evaluate the knowledge of pediatric medical personnel about intestinal failure.
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There is a need to create strategies to improve knowledge of this pathology and all its implications in order to ensure that children receive treatment aligned with international standards.
Introduction
The term intestinal failure (IF) in pediatrics it is currently defined as "the reduction of functional intestinal mass below the amount necessary to sustain life, resulting in a dependence on parenteral nutrition (TPN) for a minimum of 60 days within an interval of 74 days in a row" [1]. Its most common causes include short bowel syndrome, intestinal motility disorders, and congenital enterocyte defects. [2]
The main management objective in these children is to achieve enteral autonomy and to achieve this, they must go through the process of intestinal adaptation, through which the intestinal remnant presents structural and functional changes, in order to increase its absorption capacity [2]. Due to the complexity of its management, IF requires a multidisciplinary approach that includes nutritional support, surgery, pharmacological therapy, and follow-up in specialized intestinal rehabilitation centers [2]. Since the introduction of these centers, there have been documented decreases in mortality, complications due to liver failure or sepsis, length of stay in the pediatric intensive care unit (PICU) as well as improvement in survival rates and intestinal rehabilitation [3]. In Colombia, there are currently three pediatric Intestinal Rehabilitation Programs (IRPs) located in Bogotá and Medellín. The IRP at Hospital Universitario San Ignacio (Bogotá), formally established in 2016, functions as a national referral center for complex IF cases [4]. The Hospital Pablo Tobón Uribe (Medellín) has reported clinical experience and successful outcomes in IF management since the mid-2000s, although no formal implementation year is available [5]. Additionally, Fundación Cardioinfantil (Bogotá) participates in intestinal rehabilitation processes, providing clinical and academic support, though it does not have a publicly documented date of establishment as a formal program. Compared to other Latin American countries such as Argentina and Brazil, which have 7 and 8 IRPs respectively [6], this limited number may restrict national care capacity and geographic access for affected pediatric patients.
Because intestinal failure is a high-cost pathology with a chronic course, it is important to carry out early identification and timely management to reduce morbidity and mortality in this population, avoid increasing costs for the health sector and emotional costs for children and their families. The aim of this study was to evaluate the knowledge, attitudes, and perceptions about this diagnosis among pediatric residents and pediatricians who may be involved in the initial care of these patients in order to identify areas for improvement and to be able to propose strategies that allow early recognition and timely referral.
Methods
A descriptive observational cross-sectional survey study was carried out with a non-probabilistic snowball sampling, the study population included pediatric residents and pediatricians nationwide. Participation required respondents to self-identify as either a pediatric resident or a clinically active pediatrician; no option was provided to specify subspecialty training or fellowship status. Therefore, it was not possible to determine whether any of the respondents were subspecialty trainees. Although this classification likely limited participation mainly to general pediatric residents and pediatricians, the potential inclusion of subspecialty residents cannot be ruled out and may have influenced knowledge-related responses. Additionally, the questionnaire included questions related to direct patient management, which functioned as an implicit filter for respondents actively involved in clinical care. Data were collected through an anonymous virtual questionnaire, designed by the authors of the study on the RedCap (Research Electronic Data Capture) platform, which consisted of 34 questions divided into 4 sections: sociodemographic factors, knowledge, attitudes, and perceptions regarding intestinal failure. Knowledge was assessed through questions focused on key concepts that are fundamental in the diagnosis, approach, and management of these children. Attitudes, through questions that offered multiple correct answer options to document the preferences of the professionals among the different options listed. And perceptions were assessed with questions about the impact of this disease at the institutional, local and regional levels. The survey was disseminated through peers, social networks, e-mail and scientific societies over a 6 - month period obtaining a total of 120 complete surveys.
Due to the non-probabilistic snowball sampling design, it was not possible to determine the total number of professionals invited to participate; therefore, the response rate and representativeness of the sample could not be calculated.
Subsequently, a descriptive analysis of the information was performed, reporting the findings for qualitative variables using proportions and for quantitative variables using measures of central tendency. This study was approved by the ethics committee of the San Ignacio University Hospital in January 2023.
Results
Sociodemographic characteristics (Table 1)
Table 1.
Sociodemographic characteristics of survey respondents on knowledge, attitudes and perceptions of intestinal failure in pediatrics in Colombia.
| Variables | Total (N = 120) | Residents (N = 61) | Professionals (N = 59) |
|---|---|---|---|
|
Age Median (P25-P75) |
28 (26 a 30) | 44 (35 a 49) | |
|
Sex, n (%) Men Women |
25 (20.8) 95 (79.2) |
9 (14.8) 52 (85.2) |
16 (27.1) 43 (72.9) |
|
Years of care, Median (P25-P75) |
3 (2 a 4) | 14 (7.25 a 23.8) | |
|
Dependencies Outpatient consultation |
48 | 25 (41) | 23 (39) |
| Emergency | 64 | 45 (73.8) | 19 (32.2) |
| Hospitalization | 65 | 50 (82) | 15 (25.4) |
| URN | 34 | 23 (37.7) | 11 (18.6) |
| PICU | 26 | 14 (23) | 12 (20.3) |
| UCIN | 25 | 14 (23) | 11 (18.6) |
| Other | 2 | 1 (1.6) | 1 (1.7) |
| Workplace, n(%) | |||
| Bogota | 62 | 28 (45.9) | 34 (57.6) |
| Antioquia | 17 | 16 (26.2) | 1 (1.7) |
| Valle del Cauca | 10 | 2 (3.3) | 8 (13.6) |
| Bolívar | 7 | 6 (9.8) | 1 (1.7) |
| Atlántico | 5 | 5 (8.2) | 0 |
| Cundinamarca | 5 | 1 (1.6) | 4 (6.8) |
| Nariño | 5 | 1 (1.6) | 4 (6.8) |
| Risaralda | 4 | 0 | 4 (6.8) |
| Quindío | 2 | 0 | 2 (3.4) |
| Boyacá | 1 | 0 | 1 (1.7) |
| Caldas | 1 | 1 (1.6) | 0 |
| Córdoba | 1 | 1 (1.6) | 0 |
Of the 120 surveys, 61 were conducted by pediatric residents (51 %) and 59 by pediatricians (49 %), with a median age of 28 years ± 2.8 years for the former and 44 years ± 10.5 years for professionals. In both groups, more women than men answered (residents: 52 women (85 %) and 9 men (15 %); pediatricians: 43 women (73 %) and 16 men (27 %)) and the department that sent the most surveys was Bogotá D.C (62 surveys, 52 %), followed by Antioquia (16 surveys, 13 %) and Valle del Cauca (10 surveys, 8.3 %). The pediatricians had been caring for children for a median of 14 years and residents for 3 years.
Intestinal failure
Of the 120 respondents, 8 (7 residents (11 %) and 1 pediatrician (1.6 %)) were not familiar with the term "intestinal failure" and were therefore excluded from the analysis of subsequent items. Of the remaining 112, only 35 resident (65 %) vs. 23 pediatricians (40 %) correctly selected the two options corresponding to the current definition. Regarding the etiology of intestinal failure, 44 residents (72 %) and 43 pediatricians (73 %) considered that congenital or post-surgical short bowel, motility disorders and intestinal mucosal disorders were causes to be considered in the pediatric population.
Intestinal adaptation
Of the 112 surveys analyzed, 33 residents (61 %) and 38 pediatricians (65.5 %) knew the term intestinal adaptation, while 18 residents (33 %) and 23 pediatricians (40 %) knew the term enteral autonomy. Based on the subjects who claimed to know the term intestinal adaptation, 64 respondents in both groups (90 %) considered that both anatomical and functional changes were needed to achieve this process.
When asked about favorable prognostic factors for intestinal adaptation, 5 residents (15 %) and 1 pediatrician (2.6 %) selected all listed options (longer length of the residual small intestine, preservation of the ileocecal valve, preservation of the colon, younger age at resection, high levels of citrulline, tolerance to the oral/enteral route, and management by a multidisciplinary group).
Regarding poor prognostic factors, only one resident (3 %) correctly selected all factors (less than 10 % of residual small bowel length, repeated infections, presence of ostomies, motility disorders or mucosal disorders as causes of intestinal failure, presence of associated liver disease, and older age at resection). On the other hand, 3 participants did not know any factor (1 resident (3 %) and 2 pediatricians (5 %)).
When inquiring about the knowledge of the drugs approved for the induction of intestinal adaptation, 18 residents (54.5 %) and 23 pediatricians (60.5 %) stated that they were aware of their existence and the most frequently selected option was Teduglutide (16 residents, 48 % and 14 pediatricians, 37 %), but 12 participants (7 residents (21 %) and 5 pediatricians (13 %)) selected more than one medication.
Nutritional management
Regarding enteral nutrition, 24 residents (44 %) and 29 pediatricians (50 %) of the entire group considered it appropriate to start this nutrition immediately after surgery, while the rest preferred preventive fasting (11 residents, 20 % and 9 pediatricians 15.5 %). Regarding the preference for the method of administration, 32 of the total (28.5 %) preferred infusion vs. 19 (8.9 %) who preferred boluses.
With respect to TPN, knowledge of the term "prolonged parenteral nutrition" was inquired about, obtaining an affirmative response in 46 residents (85 %) vs. 55 pediatricians (95 %). Of these, 27 residents (58.6 %) and 23 pediatricians (41.8 %) selected tunneled catheters when asked about their preference for the type of catheter to use.
Other management
Both residents (40, 74 %) and pediatricians (35, 60 %), knew about intestinal rehabilitation centers/programs and in addition, 67 of those surveyed (59.8 %) knew of the existence of one of these centers in our country. When asked about the ideal time of referral to the centers, the time of diagnosis was the most selected option in both groups (46 residents, 85 % and 53 pediatricians, 91 %) (Table 2).
Table 2.
Knowledge and attitudes regarding intestinal rehabilitation centers/programs.
| Question, n (%) | Total (N = 112) | Residents (N = 54) | Professionals (N = 58) | |
|---|---|---|---|---|
| Have you heard about bowel rehabilitation centers/programs? | Yes | 75 (66.9) | 40 (74.0) | 35 (60.3) |
| No | 37 (33.0) | 14 (25.9) | 23 (39.6) | |
| Do you know if there is an intestinal rehabilitation center/program in Colombia? | Yes | 67 (59.8) | 38 (70.3) | 29 (50) |
| No | 45 (40.1) | 16 (29.6) | 29 (50) | |
| Refer a patient with bowel failure to a bowel rehabilitation center when | From the moment of diagnosis | 99 (88.3) | 46 (85.1) | 53 (91.3) |
| Loses all available venous accesses | 1 (0.8) | 0 | 1 (1.7) | |
| Have any complications from bowel failure | 3 (2.6) | 3 (5.5) | 0 | |
| Requires NPT for more than 2 months | 7 (6.25) | 5 (9.2) | 2 (3.4) | |
| Requires a surgical procedure | 1 (0.8) | 0 | 1 (1.7) | |
| I would not refer it | 1 (0.8) | 0 | 1 (1.7) | |
Complications
When asked about potential complications associated with intestinal failure, such as intestinal failure-associated liver disease (IFALD), small intestinal bacterial overgrowth (SIBO), infections, and catheter-related thrombosis, 30 residents (55 %) and 28 pediatricians (48 %) identified all of these as possible complications. Two residents did not identify any.
Inquiring about the management of IFALD, it was found that while 17 of the total (15.1 %) considered that cyclized TPN, lipid modification with fish emulsions, restriction of lipid intake in TPN, and antibiotic treatment of SIBO were strategies to be considered, 20 (corresponding to the 17.8 %) did not recognize any of the strategies mentioned.
For the management of catheter-related infections, 45 respondents (28 residents (52 %) and 17 pediatricians (29 %)) identified the use of a 70 % ethanol lock as one of the main strategies. A total of 39 respondents (17 residents (31 %) and 22 pediatricians (38 %)) reported not using or being unaware of any strategy.
Prognosis
Respondents showed varied beliefs regarding 5-year survival rates in pediatric intestinal failure. When asked whether these patients are typically underweight and short in stature, the majority in both groups responded affirmatively (34 residents, 63 % and 39 pediatricians, 67 %) (Table 3).
Table 3.
Attitudes regarding survival and associated conditions in patients with intestinal failure.
| Question, n (%) | Options |
Total (N = 112) |
Residents (N = 54) | Professionals (N = 58) |
| Do you consider that patients with intestinal failure have a good survival 5 years after diagnosis? | Yes | 42 (37.5) | 20 (37.0) | 22 (37.9) |
| No | 37 (33.0) | 18 (33.3) | 19 (32.7) | |
| I do not know | 33 (29.4) | 16 (29.6) | 17 (29.3) | |
| Do you consider that children with intestinal failure are naturally underweight and tall because of their condition? | Yes | 73 (65.1) | 34 (62.9) | 39 (67.2) |
| No | 29 (25.8) | 14 (25.9) | 15 (25.8) | |
| I do not know | 10 (8.9) | 6 (11.1) | 4 (6.8) |
Perceptions
Regarding perceptions, 45 pediatric residents (83 %) reported that this pathology is an important global health problem, 36 (66 %) considered it a major problem in our country, and 37 (68.5 %) in their hospital (Table 4).
Table 4.
Perceptions regarding intestinal failure.
| I agree | Neutral | Disagree | ||
|---|---|---|---|---|
| Intestinal failure is a major problem for global health | Residents | 45 (83.3) | 7 (12.9) | 2 (3.7) |
| Pediatricians | 49 (84.4) | 8 (13.7) | 1 (1.7) | |
| Intestinal failure is a major problem in Colombia | Residents | 36 (66.6) | 16 (29.6) | 2 (3.7) |
| Pediatricians | 43 (74.1) | 13 (22.4) | 2 (3.4) | |
| Bowel failure is a major problem for my hospital, clinic or workplace | Residents | 37 (68.5) | 11 (20.3) | 6 (11.1) |
| Pediatricians | 32 (55.1) | 17 (29.3) | 9 (15.5) |
Profile of respondents unfamiliar with the term intestinal failure
Among the eight respondents unfamiliar with the term intestinal failure, 3 (37.5 %) were from Atlántico, 3 (37.5 %) from Bolívar, 1 (12.5 %) from Antioquia, and 1 (12.5 %) from Valle del Cauca; none were from Bogotá. Seven were pediatric residents and one was a pediatrician, the latter being the oldest participant with 10 years of pediatric experience. Residents reported between 2 and 6 years of previous medical practice.
Discussion
This is the first study to evaluate these concepts about pediatric intestinal failure in physicians in our country. The vast majority of respondents (58 pediatricians and 54 residents) claimed to know the term intestinal failure, however, approximately half recognized the current definition, with a higher percentage of certainty in pediatric residents (64.8 % vs. 39.6 %, respectively). Despite the fact that 72.3 % of respondents recognize not only the short bowel, but also motility disorders and mucosal alterations as causes of intestinal failure, a non-negligible number of residents and pediatricians (15 and 16 subjects, respectively) still consider the short intestine as the only cause, which highlights the need to provide updating to health professionals in this aspect taking into account that the definition of intestinal failure has changed over time, which will allow for a better understanding and approach to these patients [1], [7].
As previously mentioned, the ultimate goal of treating children with intestinal failure is to achieve enteral autonomy by strengthening the intestinal adaptation processes and constantly evaluating the patient according to the factors of best prognosis and unfavorable factors. Taking into account the above, it should be noted that a considerable percentage of the two groups surveyed are not clear about these concepts, which could alter the approach that professionals take towards these children. [2]
Colombia participated in the RESTORE registry conducted in 2024, which included pediatric patients with SBS associated with IF and documented the use of enterohormones as part of their management [8]. Recently, the use of GLP-2 analogs, such as teduglutide, was approved in Colombia [9]. This medication promotes small intestinal epithelial proliferation and thus supports intestinal adaptation [2]. It is currently approved by INVIMA for patients older than one year with intestinal failure secondary to SBS. Therefore, it would have been relevant to investigate the respondents' knowledge regarding its use in these patients. In our survey, more than 50 % of respondents in both groups reported awareness of medications approved to promote intestinal adaptation, with teduglutide being the most commonly recognized option among both pediatricians and residents.
Comprehensive nutritional management is essential in the treatment of these patients [2]. By definition, before reaching enteral autonomy, children are dependent on TPN, which entails multiple risks associated with treatment time, the requirement of special devices for their administration and the permanent possibility of infections [2]. In Colombia there is the possibility of using long-term catheters according to the recommendations of the ESPGHAN of 2018 [10]. In this article, it was evidenced that less than half of the total group uses this type of catheters with a higher percentage of correct answers in the group of residents vs. pediatricians (58.6 % vs. 41.8 %, respectively). According to what has been documented in the literature, the prevention of infections associated with these devices is achieved through the use of ethanol seals and/or antibiotics, however, despite scientific evidence, almost 30 % of both groups studied are unaware of this type of therapy. [2], [11.]
Intestinal transplantation was not included in the survey because it is currently not performed in Colombia, as there are no specialized centers in the country that offer this procedure. Therefore, it is not a therapeutic option available in our clinical context, which limits the practical experience and knowledge that pediatricians and residents might have regarding this treatment.
There are different strategies, which were evaluated in the study, to reduce the IFALD finding that only the cycling of parenteral nutrition and the modification of lipids were known by more than half of the respondents, while 17.8 % did not know any strategy and only 39.2 % and 31.2 % of residents and pediatricians, respectively, recognized the restriction of lipid intake and the antibiotic treatment of SIBO. [12]
Treatment of these children in multidisciplinary intestinal rehabilitation groups has shown better survival, fewer complications, better intestinal adaptation rates, and lower intestinal transplant requirements [3]. In the survey published in 2021 by the Latin American Society of Pediatric Gastroenterology, Hepatology and Nutrition (LASPGHAN), the existence in our country of the 3 intestinal failure centers mentioned above was reported, therefore, it was important to evaluate whether the Colombian health professionals who care for children knew of their existence, obtaining an affirmative answer in about 60 % of the entire group, with a slightly higher percentage in the group of residents. [6]
It should be noted that 91 % of the participants have had contact with children with intestinal failure and the vast majority perceive this to be a health problem at a global and national level. Centers worldwide that manage patients with FI have shown that these patients generally grow and develop adequately and achieve survival rates above 90 % after 5 years of diagnosis [11]. Despite this, 65 % of respondents consider it normal for a patient with intestinal failure to be underweight and short and only 37.5 % of respondents consider these survival rates to be a reality.
Taking into account that in 2017 there were 3398 pediatricians in Colombia, with no exact updated data available, and that there are approximately 15 medical schools offering this specialty, one of the limitations of this study was the inability to determine the response rate [13]. To achieve broader outreach, the survey was disseminated through peers, social networks, and scientific societies such as the Colombian Society of Pediatrics, which contributed a significant number of responses. However, due to the dissemination strategy used, it was not possible to establish the exact number of individuals invited to participate. As a result, the response rate could not be calculated, nor could the representativeness of the sample or the potential non-response bias be assessed.
Although responses were obtained from 12 of the 32 departments in Colombia, this is not a nationally representative study, and the findings cannot be extrapolated to all pediatricians and residents nationwide. The majority of surveys originated from major cities where intestinal rehabilitation centers are located, which may have introduced selection bias. Furthermore, given that the snowball sampling strategy was used, selection bias is also likely, as participants may share similar characteristics or belong to interconnected professional networks. The San Ignacio University Hospital—one of the institutions providing care for pediatric intestinal failure and conducting ongoing research on this topic, including the present study—was included in the survey distribution. However, it was not possible to determine how many respondents were from this institution. This represents a potential institutional overrepresentation bias, as the lack of this information may have resulted in a non-representative sample of the target population. Additionally, it may constitute an information bias, as respondents from this center are likely to have greater exposure to and familiarity with the subject, potentially leading to an overestimation of the overall level of knowledge on pediatric intestinal failure. While these limitations may restrict the generalizability of the findings, the use of this strategy was considered appropriate given the limited number of specialists with direct experience in managing this condition in the country. Therefore, the results provide valuable preliminary data that lay the groundwork for future studies employing probabilistic sampling methods and greater national representativeness.
Although the study conducted by Iyer et al. [14] evaluated knowledge of intestinal failure in adult gastroenterologist and therefore cannot be directly extrapolated to pediatrics, its findings are consistent with ours in demonstrating limited understanding of key concepts related to this condition. These results led to the implementation of educational strategies on intestinal failure within medical residency programs. Our findings support the need for this topic to be systematically incorporated into national pediatric training curricula in Colombia, particularly considering the impact that timely recognition of intestinal failure has on patient outcomes.
The present study shows that, although intestinal failure is recognized at the national level by health professionals, there is a need for effective strategies to train pediatricians and pediatric residents. It is essential that they understand this condition, the challenges involved in its management, and the importance of timely referral to multidisciplinary care centers in order to improve the quality of life of both patients and their families
Ethical clearance
This study was approved by the ethics committee of our institution in January 2023.
Patient’s/Guardian consent
Not applicable.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.
Declaration of Competing Interest
One of the autors currently serves as the coordinator of the intestinal failure program at San Ignacio University Hospital, but it is clarified that this role does not influence the results obtained in the present research, the rest of the authors don’t have conflict of interest.
Acknowledgments
To Dr. Erika Johana Cantor who help us with the statistical analysis guidance.
Contributor Information
Sofía Ortegón Ochoa, Email: s.ortegon@javeriana.edu.co.
Clara Eugenia Plata García, Email: plata_clara@javeriana.edu.co.
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