Anorectal malformations (and not only): the clinical history “travels” with patients, even abroad

Anorectal malformations (and not only): the clinical history “travels” with patients, even abroad


OfMaria Giovanna Faiella

For those suffering from MAR (and in general from little-known rare diseases) it is necessary to have comprehensible clinical data with you, especially if you go to other regions or abroad or in case of emergency. Your data in Italian and English on a USB stick. Differences with the electronic health record

One in every four thousand newborns is born with one anorectal malformation (Tue): theanus and the straight they don’t develop as they should, so many children need a surgery in the first days of life to correct the malformation and, later, also of more operations. In one case out of two they may also have other anomaliesamong the most common: malformations vertebralanomalies cardiac congenital, tracheals or esophageal, limb malformations, neurological diseases. It is, therefore, one complex rare disease which can have different manifestations from patient to patient. And, especially in case of emergencyfor example if you go to Emergency room outside the Region or even abroadit may happen that you find doctors who do not know the Mar. Hence the idea of ​​the Italian Association of Anorectal Malformations (Aimar) to create for patients with MAR (and not only) a USB pendrive “tailor-made”, i.e. which contains your medical history and medical documentation, to always carry with you.

Summary of clinical history also in English

Thanks to the collaboration of doctors specialized in anorectal malformations, one is created on the USB stick form which contains a summary of the clinical history of the patient, in Italian and English, easy to understand and consult even for doctors who are not experts in Mar or who operate in emergency conditions, such as in the emergency room. Specifically, they come interactive texts with images loaded onto the pen drive,epidural anesthesia. No matter where in the world the patient is, for work reasons or on holiday, he will be able to provide the doctor, in real time, with all the information necessary to treat him. In short, one electronic medical record portable, to hold close at hand, in your bag or pocket, which allows you to move independently, even abroad. Currently, around two hundred patients are already using it (but the numbers are expected to triple) not only with Mar but also some who suffer from Hirschsprung’s diseaseanother rare pathology characterized by the absence or alteration of movements of the diseased intestinal tube, resulting in difficulty in evacuation.

Differences with the electronic health record

Every patient has one personalized card, in Italian and English, drawn up by the doctor who assists him, who takes care of entering the data into the flash drive.
What are the benefits? Dalia Aminoff, president of Aimar, explains: «With this tool the patient is able to travel around the world bringing his medical data in case of need, making it more autonomous».
But it’s not enough electronic health record to have a single point of access to your medical history that you can consult wherever you are? “There difference with the ESF – Aminoff points out – is that the electronic file contains all the patient’s medical information but not always the services carried out in private facilities or abroad. Furthermore, the health record or the App shows the medical record as it was uploaded and not, for example, the most recent information, the summary of the patient’s clinical history – in Italian and English – and the last images, which are interactive. Often patients with Mar – continues the president of Aimar – have very voluminous medical records because, in addition to the anorectal malformation, they also have associated malformations, therefore they require many visits and interventions especially during the first years of life. This project aims to make a summary of the clinical history and highlight the problems more important, especially if patients need to be admitted to hospital for an emergency.”

March 12, 2024

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