When a person is diagnosed with a rare adrenal disorder, his or her life undergoes a dramatic change. Each morning, they will need to assess the coming day, decide what – if any – measures need to be taken in terms of medication and determine whether they might need to get in touch with their healthcare practitioner(s) about prescriptions and appointments. An app helps them to manage their illness better. This is what we call ‘co-management in adrenal care’, because an adrenal patient can never manage his illness on his own.
The app on a smartphone makes it possible to explain instantly that the patient has an adrenal disorder and that he is dependent on hydrocortisone. This means: “inject first, talk later”, and that is an essential instruction for the ambulance crew and for the staff in the emergency department. Importantly, they can verify this in the ambulance crew’s Protocol for Adrenal Insufficiency.
To keep a firm grip on their health and the necessary care, it is important that patients themselves have their medical information available. They can collect this information with the aid of the AdrenalAPP. The APP can connect to the Dutch Hospital Information System (ZIS), and that makes it possible to download the latest medical details from the EPR held by the endocrinologist or other treating physician.
An adrenal crisis (or Addison crisis) is not on anyone’s wishlist, so the endocrinologist makes instructions available about how to avoid one. With the AdrenalAPP you will always have these instructions at hand: none other than the approved, uniform instructions that were drawn up under the auspices of BijnierNET (AdrenalNET).
The AdrenalAPP is also aimed at the family members of a patient with an adrenal disorder. For parents, for example, who want to tell a teacher about their child’s adrenal disorder. The AdrenalAPP even gives details of how to administer an emergency injection. Anyone can add the AdrenalAPP to their smartphone, even people who haven’t got an adrenal disorder. Except for the parents of patients aged 12 and under, family members cannot add medical information to the app.
Through the app it is possible to trace the phone numbers of those close to you, such as your partner, your parents and your siblings. A link is created to the phone’s address book where details of your ICE contacts are stored. ICE is the abbreviation of “In Case of Emergency”. But for this to work, those contacts need to be registered as ‘ICE contacts’ in the address book.
Holiday, conference or exhibition, weekend break. Having an adrenal disorder is no reason to stay at home, and so patients sometimes find themselves far away from any hospital. Different language or different terms need not be a problem: the AdrenalAPP offers the essential information about the patient in 6 different languages.