Table 1

Paediatric systemic lupus erythematosus patient-generated and caregiver-generated solutions to specific challenges using a mobile health application (app) to manage lupus medications

ChallengesSuggested solutions
Lupus medication regimens are often complex. Entering several medications into an app can be time-intensive and frustrating.
  • Provide a drop-down list of common lupus medications and dosages.

  • Allow ‘custom’ or ‘other’ option for all fields when manually entering a medication.

  • Sync medication list to healthcare or pharmacy records.

  • Use image-to-text to prepopulate information from a pill bottle.

  • Add an option for a picture alongside each medication.

Lupus medications are often changed, removed or added back. It can be difficult to remember why these changes were made.
  • Create a medication archive where prior medications can be saved and easily reactivated in the future.

  • Provide an option to save notes whenever a medication is archived (eg, adverse reaction, ineffective, too expensive).

  • Generate an easily printable or exportable list to share with healthcare providers and caregivers.

Many people with lupus take medications multiple times per day. Receiving individual notifications for each medication is overwhelming.
  • Present multiple options for notifications, in addition to off/on. Users may want or need different frequencies of notifications at different times over the course of illness.

Lupus is often managed by a patient and parent/caregiver, but apps are typically created with one user in mind.
  • Create linked accounts for the app, with one account for the patient and another account for the parent/caregiver. Who can view and edit the app should be flexible. Sometimes the patient will enter information, but sometimes the parent/caregiver will need to enter additional or override information. It would be helpful for the parent/caregiver to view data so they know when to intervene.

  • Provide an area for private notes for each account.