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Department of Pediatric Surgery and Pediatric Intensive Care Unit, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, Netherlands
Department of Pediatric Surgery and Pediatric Intensive Care Unit, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, NetherlandsDepartment of Child and Adolescent Psychiatry/Psychology, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, Netherlands
Department of Pediatric Surgery and Pediatric Intensive Care Unit, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, Netherlands
Department of Pediatric Surgery and Pediatric Intensive Care Unit, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, Netherlands
Department of Pediatric Surgery and Pediatric Intensive Care Unit, Erasmus University Medical Centre - Sophia Children's Hospital, P.O. Box 2040, 3000 CA Rotterdam, Netherlands
Background: Adults with esophageal atresia (EA) require a multidisciplinary follow-up approach, taking into account gastroesophageal problems, respiratory problems and psychosocial wellbeing. Too little is known about the full scope of these individuals’ healthcare needs. We aimed to map all medical and psychosocial needs of adults with EA and their family members, and to formulate healthcare recommendations for daily practice.
Methods: A qualitative study was performed, using data from recorded semi-structured interviews with two focus groups, one consisting of adult patients with EA (n = 15) and one of their family members (n = 13). After verbatim transcription and computerized thematic analysis, results were organized according to the International Classification of Functioning, Disability and Health. Ethical approval had been obtained.
Results: Healthcare needs were described through 74 codes, classified into 20 themes. Most important findings for patients included the impact of gastrointestinal and pulmonary problems on daily life, long-term emotional distress of patients and parents and the need of a standardized multidisciplinary follow-up program during both child- and adulthood.
Conclusion: The focus groups revealed numerous physical and mental health problems, as well as social difficulties, that require attention from different healthcare providers. We have formulated several healthcare recommendations that physicians may use in long-term follow-up.
= COnsolidated criteria for REporting Qualitative studies
EA
= esophageal atresia
GER
= gastroesophgeal reflux
GP
= general practitioner
ICF
= International Classification of Functioning, Disability and Health
ISCED
= International Standard Classification of Education
PTSD
= posttraumatic stress disorder
QoL
= quality of life
Type of Study: Treatment Study
Level of Evidence: Level III
1. Introduction
Advancements in treatment strategies have led to increased survival rates of newborns with esophageal atresia (EA). Subsequently, more children with this rare congenital malformation nowadays reach adulthood. Many adults with EA, however, still experience sequelae: gastrointestinal symptoms such as dysphagia or gastroesophageal reflux (GER) [
]. Therefore, we have extended our hospital's longitudinal multidisciplinary follow-up program for these children with transition to adult healthcare [
An important element of follow-up is psychosocial wellbeing. In the past, the quality of life (QoL) of adults with EA has been assessed with different questionnaires. Overall, a normal health-related QoL was reported on the general SF-36 questionnaire [
Swallowing dysfunction and quality of life in adults with surgically corrected Esophageal Atresia/Tracheoesophageal fistula as infants: forty years of follow-up.
]. However, when focusing on gastrointestinal symptoms with the Gastrointestinal Quality of Life Index, or on pulmonary complaints with the Respiratory Symptoms-Related Quality of Life Index, impaired QoL was reported [
The currently available literature does not sufficiently describe the healthcare needs of adults with EA. Questionnaires are either too broad or too specific, and do not address the specific problems encountered in daily life. Moreover, certain aspects have never been studied adequately such as mental problems or the impact on relationships. Recently started endoscopic surveillance programs for Barrett's esophagus and esophageal cancer [
] have brought new burdens, adult relationships could raise concerns about heredity, and parent-child relationships could be affected by events in the past. The impact of having a child with EA on parents has only been described for school-aged children [
ESPGHAN-NASPGHAN Guidelines for the evaluation and treatment of gastrointestinal and nutritional complications in children with esophageal atresia-tracheoesophageal fistula.
]. Thus far, too little is known about the full scope of healthcare needs of EA adults. Patient experience data are considered meaningful for healthcare improvement in terms of safety and effectiveness [
]. The aim of this study was to map all medical and psychosocial healthcare needs of adult EA patients and their family members, resulting in the formulation of recommendations to be used in daily practice.
2. Patient and methods
This is a qualitative study using in-depth data from semi-structured focus group interviews addressing the worries, needs and preferences of EA adults and their family members. Approval from the institutional ethics review board had been obtained (MEC-2019–0160). The COREQ (COnsolidated criteria for REporting Qualitative studies) checklist was used as a reporting framework [
]; one consisting of adult patients with EA, the other of their family members and/or partners. Patients were randomly selected from all adults with EA currently participating in our follow-up program [
]. Patients were invited to participate through a personal letter, and were asked to invite their partner or a family member of their choice as well. Inclusion criteria were age ≥18 years, born with EA or a partner/family member of a patient with EA and Dutch-speaking. Written informed consent for interview recording was obtained from all participants.
2.2 Data collection
An expert team was formed for this study, consisting of a gastroenterologist (MS) and a pulmonologist (LK), both specialized in treating adults with EA; a pediatrician (SG), who is the coordinator of the standardized longitudinal follow-up program for children with congenital anomalies in our hospital and involved in the transition of children with EA to adult healthcare; a neuropsychologist (AR) with experience in moderating focus group interviews; an adult patient with EA; a representative of the Dutch patient association (JF) and a researcher (CtK). Prior to the focus group interviews, the expert team met to determine the interview topics, based on literature research and clinical experience.
Both focus group interviews were conducted on June 20th 2019, within the framework of a national symposium for adults with EA. The interviews were moderated by a male neuropsychologist (AR). After a brief introduction, the topics were introduced and with open questions participants were stimulated to discuss their worries and needs (see Supplementary File 1). The interviews were recorded audio-visually and transcribed verbatim. Additionally, participants were asked to fill out a questionnaire on baseline characteristics and, if applicable, physical complaints.
2.3 Data analysis
Transcripts were imported into the qualitative software ATLAS.ti 8.3.20 (Scientific Software Development GmbH, Berlin, Germany). Following the steps of thematic analysis [
], the transcripts were reviewed and coded by two members of the research team (CtK and DL) independently and systematically. Initial codes covered the basic element of a text fragment, and were modified or merged during the analysis. Codes from both transcripts were combined into overarching themes. All codes and themes were reviewed by a third investigator (AR) and discussed until consensus was reached. The expert team reviewed the themes and supplemented clinically relevant subjects where necessary.
Next, the themes were structured according to the International Classification of Functioning, Disability and Health (ICF) [
], which describes five health-related domains: body functions and structures, activity, participation, personal factors and environmental factors. Results are described in a qualitative manner and illustrated by quotes extracted from the interviews (see Table 1). Quotes were translated from Dutch to English by forward-backward translation by a native speaker to validate consistency of the translation.
Table 1Extracted quotes from the focus group interviews. ICF = International Classification of Functioning, Disability and Health, GP = general practitioner.
ICF classification
Theme
Quote
Body functions and structures
Physical problems
“My mother was raised very protected. As a child, she was told that it was better not to exercise. Nowadays, she has a worse exercise capacity than her peers.” – daughter, 43 years old
Mental health problems
“My father is what I would call traumatized. Whenever I talk about it, he starts crying.” – patient, 32 years old
Activity & participation
Obstacles in daily life
“Going to a restaurant is different for me than for others. I have to be careful with my choices.” – patient, 54 years old
Social difficulties
“With my first girlfriend, I pretended to have already eaten at home. I did not want to offend her parents by not being able to eat their food.” – patient, 21 years old
Limitations in employment
“One time, there was not enough time to eat, after which I started vomiting. Since then, they give me the time I need.” – patient, 21 years old
Personal factors
Feeling guilty
“I'm an only child because I needed a lot of care. My father would have liked more children. Now that I have two healthy sons of my own, I feel like he has finally gotten the sons he always wished for.” – patient, 37 years old
Environmental factors
Specialized healthcare
“Our GP told us that we should call the hospital if we had questions. He did not want anything to do with it.” – mother, 62 years old
Follow-up and transition to adult healthcare
“The transition to the adult hospital was awful. I could no longer stay with my child all day.” – mother, 64 years old
Impact on family relationships
“You go through a very intensive period together. For us, we grew as a couple. Whatever will come, we can handle it.” – father, 55 years old
]. Descriptive data for the baseline characteristics were generated using SPSS V.24.0 (IBM, Chicago, Illinois, USA).
3. Results
3.1 Participants
In June 2019, our follow-up program contained 195 adults with EA, of whom 55 had been randomly selected. Three patients were excluded because of intellectual disability. Therefore, 52 were invited for this study. Thirteen invitees did not respond, and 24 invitees refused because of lack of time or transportation. Thus, fifteen patients consented to participate. Eleven of them brought a family member; one brought two family members. In total, 28 participants were included: 15 patients and 13 family members (10 parents, 2 children and 1 partner). Based on the distribution of the baseline characteristics and physical complaints, we considered this sample representative for the EA population (see Table 2 and Supplementary Table 1).
Table 2Baseline characteristics of the focus group participants. Data are presented as median (range) or n (%). One patient and two family members have not filled out a questionnaire. EA = esophageal atresia, ISCED = International Standard Classification of Education, VACTERL = vertebral, anorectal, cardiac, tracheoesophageal, renal or limb anomalies. A According to Gross classification (2). B Birth weight <10th centile (3). C According to Solomon criteria (4). * Five patients were 20–30 years old, six patients were 30–40 years old, three patients were 50–60 years old and one patient was 71 years old.
Patients (n = 15)
Family members (n = 13)
Age (years)
32.6 (20.8–71.0) *
63.5 (22.7–67.1)
Male
10 (66.7)
5 (38.5)
Relationship to EA patient Parent of EA patient Child of EA patient Partner of EA patient
The interview with the patient group lasted 62 min; that with the family member group 67 min. Thematic analysis identified 74 codes which could be classified into 20 themes (see Table 3). Eventually, no new codes could be identified, suggesting data saturation.
Table 3Overview of identified themes and corresponding codes. ICF = International Classification of Functioning, Disability and Health, EA = esophageal atresia, GP = general practitioner.
Barrett's esophagus, vomiting, comorbidities, exercise capacity, food getting stuck, no complaints at all, general health, pulmonary problems, pain when eating, frequent hospital visits
Mental problems
Anxiety of parents, anxiety of patients, worries, memories, optimism, home birth
Feeling a patients, wish for medical identification
Guilt
Feeling guilty as a child, feeling guilty as a parent
Environmental factors
Expertise in healthcare
Relationship with treating physician, need for specialized care, frustrations about healthcare, satisfied about healthcare, guidance in regional hospital, lack of expertise in regional hospital, positive experience with GP, negative experience with GP, late diagnosis, home birth, explanation by parents
Support
Somebody to talk to, contact with fellow peers, pedagogical healthcare, support network, trauma processing
Screening, follow-up and transition
Prenatal screening, follow-up childhood, transition to adult healthcare, surveillance program
Family relationships
Parents involved during adulthood, parent-child bonding, parents as caregivers
Interaction with environment
Frustrations about work, telling people about EA, getting attention from environment
Childhood was characterized by frequent hospitalizations due to pulmonary infections or upper endoscopies for esophageal dilatations or stuck food boluses. The main problem in adulthood was dysphagia. All patients could eat solid food but had to drink water with every meal. Other major physical complaints were pain, postprandial bloating, coughing, impaired lung capacity and poor exercise capacity. Anti-reflux surgery at childhood because of GER has led to new forms of discomfort such as an inability to vomit. Coughing caused a poor night's sleep for some patients. Some patients are still afraid to visit the hospital or to undergo medical procedures.
3.2.2 Worries about the future
Pregnancy was stressful for patients due to concerns about heredity and the unborn baby's health. Endoscopic screening of the esophagus raised concerns about Barrett's esophagus. Some patients had not visited the hospital for 40 years. Older patients never had a proper explanation about their condition, and were happy to be finally informed.
3.2.3 Obstacles in daily life
Eating had the greatest impact on patients’ everyday life. They needed more time to finish a meal than their peers, and always had to consider the type of food they ate. This made certain activities challenging, e.g. restaurant visits, a quick meal on the street or buffet meals. Some patients could not eat or drink anything in the evening, because this led to severe heartburn overnight. Some older patients were limited in their daily activities due to a poor exercise capacity. As a child, they were advised not to go outside in the winter or play sports, due to increased susceptibility to respiratory infections.
3.2.4 Social difficulties
Patients received negative comments about EA-related situations, e.g. when a stuck food bolus needed to be pushed through. Patients with coughing complaints were often unfairly criticized for smoking.Some older patients had large scars, whereas most of the younger patients had hardly visible scars. A possible coping strategy at school age was giving a talk about EA to their classmates.
The extent to which patients were open about having EA varied. In partner relationships, some patients had not informed their partner until having children was discussed. In friendships, some patients did not want to bother friends with their story. In general, patients kept their explanation short when informing people.
At work, the main problem was the mealtime. Patients needed more time to finish their lunch than co-workers. Some did not get enough time from their boss; others found it hard to take the time they needed, feeling guilty for letting their work pile up.
3.2.5 Effects on personal life
Overall, patients became more resilient. Some still had trouble letting people get emotionally close due to hurtful comments or experiences from their youth. Others were full of fighting spirit, and would not give up easily. Patients felt guilty towards their siblings and parents as they grew up, for being born with EA and receiving so much attention.
Patients clearly stated that they no longer feel like a patient, or even found it annoying to be called a patient. Some started feeling like a patient again when they received the endoscopic surveillance invitation. Patients wished for medical identification to carry with them in case of emergency, e.g. a choking incident or a stuck food bolus.
3.2.6 Transition to adult healthcare
Patients remembered the pedagogical staff guiding them through unpleasant procedures or preparing them for surgery. Younger patients often had multiple check-ups, but older patients had not received any follow-up after their first year of life. They were surprised being invited for a check-up after several decades. Most patients did not know what EA entailed until this check-up. Patients appreciated the possibility of follow-up. It resulted in a better understanding, for example their pulmonary complaints finally fell into place.
Patients notice that general practitioners (GPs) lack medical expertise on EA. They expressed the desirability of designating one coordinating physician. Usually, the gastroenterologist was in charge, with which patients were satisfied.
3.3 Family perspectives
3.3.1 Psychosocial problems
All parents could vividly describe memories from the first years of their child's life. Parental anxiety was widespread during the perinatal period and remained over the years. Some parents had been told that the child would not survive. Parents were especially worried during pulmonary infections or choking incidents. Most parents still suffered from emotional problems, some parents even were severely traumatized by such experiences.
3.3.2 Social difficulties
Parents received negative comments as well, e.g. when they gave their child medication in public. Finding a babysitter was difficult for parents. People were afraid to look after their child and to administer medicines, for example.
3.3.3 Effects on personal life
Some parents found their child more sensitive or emotional than peers. Parents felt guilty towards their other children because it was difficult to divide attention. They also felt guilty towards themselves for neglecting their own health sometimes when their child was sick.
3.3.4 Specialized healthcare
Most parents had negative experiences with giving birth at regional hospitals due to the lack of medical expertise. At the academic hospital they felt reassured and got a satisfying explanation about the diagnosis, surgery and what to expect. Most common frustrations during hospitalizations were limited visiting hours or postponement of surgery. Another frustration was the lack of knowledge of the GP, who for example did not take the pulmonary problems of their child seriously. Parents could call a direct phone number from the hospital if they had any questions.
Parents emphasized the importance of receiving timely and proper information. When their newborn was transported to an academic hospital, often the mother stayed behind and remained uninformed about the condition or prognosis of her child for several days.
Parents experienced insufficient support from the hospital in the first period. They missed a professional to talk to. Although they turned to other sources of support – such as keeping a journal, or talking to family, friends or other parents on the ward – this was felt not enough compensation. For parents of younger patients, transition to adult healthcare was a major step.
3.3.5 Impact on family relationships
For parents, especially the first years were hard. Early parent-child bonding was difficult. Due to travel distances and lack of transportation, parents sometimes could not visit their child for several weeks. After a long and intensive hospital period, discharge home was an enormous transition. Regular maternity care that new parents usually receive was no longer available. Later, parents struggled between their roles as parent and caregiver because they had to give their child medication, tube feeding, or parenteral feeding.
The sick child represented also a large burden on the relationship between parents; sometimes resulting in divorce, sometimes strengthening the relationship. Parents felt it was difficult to remain strict in the child's upbringing. Parents had a hard time letting go of the child when it left home at adult age.
4. Discussion
This study is the first to provide an overview of the medical and psychosocial health status of adults with EA and their family members. The patient-driven data from focus group interviews with patients and family members of different ages gives insight in the impact of the disease over time, which may help to optimize medical care and psychological guidance.
4.1 Body functions and structures
Various symptoms have been described in adolescents and adults with EA, such as regurgitation, heartburn, aspiration and dysphagia [
]. Surprisingly, GER was not addressed as a problem. A likely explanation is that all patients in this study are followed by a gastroenterologist, and have been given anti-reflux medication if needed. . From our own experience, we know that patients often will not bring up GER complaints themselves as they do not experience these as symptoms [
]. Hence, it is important to actively ask patients about this during follow-up.
In line with the literature, patients reported pulmonary complaints and poor exercise capacity. Previous studies described significantly more respiratory symptoms and infections in EA adults compared to controls (p ≤ 0.002). Pulmonary function tests showed both obstructive, restrictive and combined lung disease [
]. Unfortunately, recent data on large cohorts is lacking. Nevertheless, considering the patients’ experiences revealed in our study, we recommend that every adult with EA should be referred to a pulmonologist specialized in EA to optimize lung condition.
The poor exercise capacity of older patients (>50 years old) was striking. We know from previous studies that children with EA are at risk for decreased exercise tolerance [
], possibly influenced by diminished physical activity as a child, which may be partially due to parental anxiety. A standardized follow-up program – which was not yet available during the childhood of these older patients – will allow intervention at an early stage. Adults with EA suffer from impaired performance capacity as well [
]. This emphasizes the importance of extending the multidisciplinary care approach for EA into adulthood.
Despite increasing pedagogical guidance in the last decades, hospital anxiety remained present even among younger patients. The relationship between preoperative anxiety and postoperative anxiety and sleeping problems in children is well known [
], but the long-term effects of undergoing multiple procedures – like in EA – have not been studied.
Likewise, in adults with EA anxiety associated with the endoscopic surveillance program should be considered. Given the relatively new nature of this program, this has not yet been investigated. In other surveillance programs, endoscopies were reported as burdensome, with elevated anxiety levels beforehand [
]. Participating in a follow-up program might cause problems in getting mortgages or insurance since it emphasizes the chronicity of EA. The attitudes of banks and insurance companies in this respect are still unknown.
Patients worried more around the fertile age and throughout pregnancy. Currently, non-syndromic EA is considered to have a multifactorial cause [
]. However, many pathophysiological mechanisms still remain unclear. In our hospital, a geneticist is involved in the transition to adult healthcare. We strongly suggest personalized genetic counselling when there is an active child wish, preferably before pregnancy.
4.2 Activities and participation
Although all patients functioned autonomously, certain food-related activities remained difficult. Coping strategies (e.g. drinking water) prevent major limitations in daily life. EA could potentially influence one’ working career. Sick leave, longer lunch breaks or taking days off for hospital visits may lead to potential career limitations [
]. Proper explanation and educational material such as brochures can be supportive in explaining EA to other people. Herein lies an imported role for healthcare providers and patient associations.
It is noteworthy that some patients found it offensive to be labelled as patients because they feel healthy. Healthcare providers should keep this in mind when addressing this population. Interestingly, patients expressed a wish for medical identification. A credit card-sized pass (see Fig. 1) that can be adjusted, filled out and printed by each individual patient might fulfill this need.
Fig. 1Example of a medical identification for patients with esophageal atresia. Patients can adjust, fill out and print this card themselves.
Lack of medical expertise is the main frustration for both patients and parents. Parents must be informed as soon as possible about their newborn's condition, even when the baby is not born at an academic hospital. Standardized follow-up programs might better ensure that patients and parents adequately understand all aspects and consequences of EA. This should be verified – and if necessary clarified - at transition to adult healthcare.
The follow-up for different specialties should by coordinated by one designated physician. A recent patient-led survey study found that half of the surveyed EA adults had no current healthcare provider [
]. In our opinion, the gastroenterologist would be best qualified as coordinating physician for adult patients. It is his responsibility to inform the GP about what EA implies and how GPs can anticipate to specific problems that patients can encounter.
Being separated from their child due to travel distances or lack of transportation was traumatizing for parents. Previous research acknowledged that hospitalization of a newborn can disturb the parent-infant relationship and attachment [
]. Today, in our hospital parents can stay with their child around-the-clock, in line with the family-centered care strategy that has been associated with improved outcomes [
]. We suggest all centers to offer this in order to promote parent-child bonding.
Although the results of this study are not sufficient to draw a conclusion on posttraumatic stress disorder (PTSD), parents showed multiple symptoms: re-experiencing traumatic events, avoiding certain situations and getting overly emotional [
]. It is recommended to provide sufficient information about support resources at discharge, including contact details of patient associations and primary care providers [
]. Also, professional psychological support may be offered to parents during initial hospitalization and follow-up, with awareness of the strain parents might experience because of their dual role as parent and caregiver.
4.4 Strengths and limitations
To our knowledge, this is the first qualitative study addressing the needs and worries of both adults with EA and their family members. Nowadays, patient-centered care and patients’ perspectives become more and more important. Patient-driven data provides new insights that quantitative research cannot provide, such as persistent hospital anxiety or how to address these patients. The widespread age of the participants can be considered as both a strength and limitation. It represents the population on one hand, but complicates the interpretation of the results on the other hand. Moreover, using the ICF classification to measure health and disability enabled us to identify the consequences for daily life. Despite the small sample size, data saturation suggests sufficient quality of the data. However, given the nature of this study, a quantitative analysis of the data was not possible.
Some limitations should be addressed. First, since patients were selected from our follow-up program in a tertiary hospital with a response rate of 29% (15 out of 52 patients), results may be influenced by a selection bias of well-informed and assertive participants. Second, although the focus groups were characterized by a safe atmosphere, some patients could have been reluctant to share particular feelings or concerns. Third, topics about childhood relied on memories, which could be less accurate for parents of older patients. Next to this, the Netherlands is a small and high-income country with well-organized healthcare. In contrast to many countries, home birth is common. Last, qualitative research is explorative and does not aim to represent the entire population. These are all facts that should be taken into account when extrapolating our results worldwide.
5. Conclusions
This qualitative study gives a unique insight into the healthcare needs of adults with EA and their families. The focus groups revealed numerous physical and mental health problems and social difficulties, that require attention from different healthcare providers. Our findings therefore emphasize the importance of a structured, long-term, multidisciplinary follow-up program for these patients. We have formulated several healthcare recommendations that physicians may use (see Table 4).
Table 4Healthcare recommendations to be used in daily practice when addressing adults with EA or their parents during childhood. EA = esophageal atresia, GER = gastroesophageal reflux, GP = general practitioner, PTSD = post-traumatic stress disorder.
Problem
Screen for
Provide
Adult patients
Gastrointestinal problems
Dysphagia, coping strategies, pain or discomfort during/after the meal, GER
Inform about EA related problems Explain esophageal motility rather than stenosis Prescribe anti-reflux medication if necessary
Risk for Barrett's esophagus and esophageal cancer
Inform about the risk and surveillance possibilities Refer to gastroenterologist for endoscopic surveillance program
Inform about EA related problems Refer to a specialized pulmonologist (computed tomography scan, lung function tests)
Exercise capacity
Start pulmonary rehabilitation, advise about sports/exercise
Mental health problems
Anxiety for the hospital or medical procedures
Refer to psychologist if necessary Point out possibility of peer support through patients association
Pregnancy-related worries
Refer to a clinical geneticist
Social participation
Problems with telling people about having EA
Help patients find the right explanation Provide information material Provide medical identification (see Fig. 1)
Problem with emotions of connecting to people
Refer to psychologist if necessary Point out possibility of peer support through patients association
Economic participation
Problems longer lunch breaks or taking a personal day, concerns about career
Help patients find the right explanation Provide information material Provide medical identification (see Fig. 1)
Concerns about mortgage or insurance
Provide information material Contact with patients association
Specialized healthcare
Coordination of multidisciplinary follow-up
Appoint one coordinating physician, preferably the gastroenterologist
Lack of knowledge GP
Inform healthcare provides about EA and EA related problems through folders, symposia or scientific journals.
Parents
Mental health problems
PTSD, feeling guilty
Be aware of mental complaints during hospitalization and follow-up Offer professional support during hospitalizations Refer to psychologist if suspicion of PTSD Point out possibility of peer support through patients association
Disturbed parent-child interaction
Possibility of staying with their child around-the-clock
Social participation
Reactions/fears from environment, finding a babysitter, getting comments when giving medication
Offer help of a social worker Point out possibility of peer support through patients association
Specialized healthcare
Understanding diagnosis and prognosis
Explain condition as soon as suspected
Coordination of multidisciplinary follow-up
Appoint one coordinating physician, preferably the pediatric surgeon
Lack of knowledge GP or regional hospital
Inform healthcare provides about EA and EA related problems through folders, symposia or scientific journals.
We thank all participants for their time and effort during the focus group interviews. We thank the Dutch patients association VOKS (Vereniging voor Ouderen en Kinderen met een Slokdarmafsluiting) for supporting this study and their input in the manuscript. We thank Evelien Huizinga for her contribution in the expert team as an adult patient with esophageal atresia. Finally, we thank Ko Hagoort, who provided editorial advice. This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Swallowing dysfunction and quality of life in adults with surgically corrected Esophageal Atresia/Tracheoesophageal fistula as infants: forty years of follow-up.
ESPGHAN-NASPGHAN Guidelines for the evaluation and treatment of gastrointestinal and nutritional complications in children with esophageal atresia-tracheoesophageal fistula.
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