*2.1.1 Experiences of patients with MG*

Patients with MG have unique disease-specific experiences. They experience anxiety (from the uncertainty of their disease) and social negativity (forced withdrawal from normal social activities). They experience stigma, deconditioning and exhaustion. Many experience stigmatizing side-effects of the medication, such as obesity, skin rashes and poor mood. Many experience disability and are unable to work.

There are 3 possible reasons that patients experience worsening of symptoms: 1) a worsening of the underlying disease process leading to worsening of symptoms, 2) poor compliance to medication and 3) patient is experiencing exacerbating factors, such as stress, lack of sleep, extreme heat or cold, contraindicated medications and viral illness.

Although one benefit of using an app could be that patients receive an escalation in treatment sooner, many patients paradoxically fear dose escalation because of the side effects they experience from using some medications. It is hoped that better tracking of exacerbating factors could help minimize dose escalations by identifying triggers for worsening of symptoms, other than a worsening of disease. All these assertions would, of course, need to be tested.

We combined disease-specific factors and patient motivations to create 4 personas: 1) The In-Charge is a user with intrinsic motivation to use the app because they like to collect data and analyze it for insights that they can act upon themselves. 2) The Worrier is anxious about the disease, the symptoms they experience, how the medication makes them feel, how they will cope if things get worse and the uncertainty of when the next exacerbation will occur. They also worry about how others perceive them and the loss of control they have over their lives because of MG. 3) The Adaptive Manager seeks to control events by gathering as much information as possible and partnering with their doctor to be proactive and manage their disease in the best way possible. And 4) the Passive Monitor who collects information because their doctor has asked them to do so. They trust that if their doctor thinks it is a good thing, then it must be so. There is of course a fifth persona: The Non-User. The Non-User does not believe that an app can be of enough benefit to make it worth their while to use.
