Dear EA patient,
Do you suffer from recurring reflux episodes?
Are you prone to respiratory infections and troublesome eating issues that sometimes interfere with your work- or personal life?
You’re not alone. And we have the data to show you.
EAT – The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula support groups — conducted a comprehensive survey, one that was global in scope and conducted online in August, 2014, to learn more from EA survivors and their primary caregivers about the impact of the medical treatment they had received. We believe this online study to be a first of its kind and we hope it will lead to greater understanding of which surgeries, medical procedures and prescribed pharmacological treatments – in short, the full breadth of treatment for EA patients – is most effective and what ought to be reconsidered.
We collected feedback from over 900 respondents across 24 countries, ranging from parents of EA newborns to middle-aged survivors who are parents (and grandparents) themselves. The survey data revealed a picture of survivors who have endured multiple surgeries, frequent dilations and who still suffer from recurring reflux, plus recurring respiratory infections and eating issues. EA survivors tell us that living with this condition has negatively impacted their quality of life, creating complications at work, at school and at home. Not surprisingly, family and friends feel the burden as well.
“The point of this first-ever EA patient-led study is to shed a light on the impact of treatment and to identify where complications most often occur,” said EAT Chairman, Graham Slater.
“We believe the findings in the study will serve as an important tool for the medical community as well to benchmark its treatment approach against what patients around the world are reporting they experience. We believe the findings of this study are particularly timely. The International Network Of Esophageal Atresia (INOEA) at its most recent congress in Rotterdam pledged to work on reaching a consensus for best-practice treatment for EA patients. We applaud this commitment to cooperation among the top medical minds in the field, and we remain at the ready to provide them with the data and insight from the patients and their caregivers to help them draw conclusions that lead to better treatment solutions for EA patients.”
“I want to commend EAT and its affiliate support groups for carrying out this survey assessing the impact of medical care given to esophageal atresia patients,” said Rene Wijnen, Head of the Pediatric Surgery Group, Sophia Children’s, Erasmus University Medical Center, in Rotterdam.
“The survey response is impressive, and the insights gathered here offer us in the medical community a revealing picture into the long-term effects that EA survivors often endure and the issues that their families must deal with. If we are to achieve our goal of developing best practice for surgical intervention and follow-up treatment for EA patients, it is data like these, coming directly from the patients and their families, that will be an important guide for us in determining what works, what we need to re-think and in helping us provide in the future far better health care standards for all EA patients.”
Key findings:
Who participated?
Questionnaires were prepared (in English, Dutch, German, French and Italian) and distributed (primarily online) via the seven European national support groups that comprise EAT, plus Australia. In all, a total of 928 people responded to the survey.
The respondents break down as the following:
• 24 nationalities
• 12% of respondents were patients; 88% were primary caregivers
• 87% were 20-years-old or younger; 3% (26) were 40 or older
• 57% male, 43% female
The key takeaways show that:
• a large percentage of EA patient respondents endured multiple surgeries and several dilations post-surgery; the number of post-surgery dilations required vary greatly by country
• a majority of cases suffer from multiple respiratory infections annually;
• complications due to reflux and difficulty eating persist,
• for EA patients and their primary caretakers, all of these complications add up to difficulties at school and on the job.
Let’s take each of these key takeaways one by one here:
Conclusion:
The aim of this study was to get a clearer picture of the issues EA patients experience at all stages in their lives, from birth to the time they are having kids of their own. Similarly, the caregivers’ input provides vital insight into how young parents adapt to having an EA infant/child in the home and the impact it has on their social/professional/educational life. Such a longitudinal examination reveals the lifelong impact from surgeries, follow-up dilations, and medication prescribed to keep the condition from overwhelming the lives of EA patients. The findings here, we believe, offer an important picture for the medical community to consult as they consider the best treatment path.
Questions certainly arise from this study that we believe the medical community should also examine more closely.
They include:
Most patients and their caregivers are satisfied with the initial surgery, but they do have their misgivings about the experience. We ask the medical community to also reflect on this as well. Is it possible, for example, to provide parents with more information and options so that together the parents and medical professionals can determine the best course of action? Similarly, are there gaps in the information that support groups could provide new parents facing EA for the first time?
Reflux continues to be a problem for EA patients, this despite reflux-mitigating medication being prescribed. We ask the medical community to take this fact into consideration in prescribing the most flexible and effective medication protocol to improve this condition.
Eating issues are a problem throughout life, but there is encouraging data showing that EA patients learn to adapt to ensure they can eat most anything with few risks. This is where the entire community – survivors, caregivers and medical professionals – should combine to share best-practice tips so that young EA patients can eat anything on the menu with full confidence.
Where do we go from here?
Firstly, EAT is grateful for the participation of the respondents. When we presented the preliminary findings of this report in Rotterdam in October, 2014, the surgeons, doctors and medical experts present were impressed with the volume of data and insights. So, thanks! But we’re not finished.
We are very excited about the possibilities of reaching out to the global EA community in the future to draw more rich data from your experience that can in turn deliver more meaningful intelligence and insight to the medical community, and for you. In the next iteration of this report, for example, we plan to extend our geographic analysis. We can already see from the data that there are possible correlations to explore, and so we also intend to do some analysis to answer questions like: what is the correlation (if any) between particular ongoing health issues and the reported impact on education an/or employment? This type of analysis will take some time but when we’re ready we look forward to sharing the results with you.
Once more, to those of you – both carers and patients – who participated in the survey, we would like to thank you for your continued support. Some of you have already suggested topics which we either didn’t cover or which require follow-up examination. We will try to address these in future surveys. In the meantime, please continue to share with us your feedback on this patient-led study. As that name – patient-led – implies, we plan for this report and future iterations to be driven by the insights, observations and suggestions of the global EA community.
For this, we will need your help.
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The 7th international Conference on EA will be held in Istambul, Turkey, in 2025.