Table 6 Suggestions by Patients and Parents

Camp for transition-aged youth I really wish there was some type of transition camp for young adults [with lupus] transitioning into adult care… (parent)

Events for parents I would be the first one in the door [for an event for parents] because I would like to know how to handle certain situations, especially when this transition happens. (parent)

Information for parents …the information that I received [as a parent] was so broad and so frightening [it was] overwhelming…more education for families [would be nice]… just helping them to realize there are children [and] other parents experiencing the same thing…what did you do to cope with this and help your child cope, what did work, what didn’t work… (parent)

Shorter meetings between camps …other camp-type [events] could be sponsored throughout the year … bringing in other doctors from other areas… like guest speakers or specialists not just about adult healthcare [but also] just handling lupus from a different perspective. (patient)

Keeping in contact There should be little texts sent out or even little Zoom meetings for us to keep in contact with each other and the doctors could see us throughout the year. (patient)

On hypothetical meetings occurring between camps …at the beginning of the meetings new people [would] hear from the doctors and the more experienced lupus patients or bring in people [with] lupus and [explore] career [and family] goals and show us we can do things… (patient)

Big brother, big sister …maybe a big brother, big sister program …where the older lupus kids can sponsor a younger one throughout the year… (parent)

Engaging community organizations Maybe [there can be] more involvement [of organizations like the] Lupus Foundation… because I personally am passionate about lupus and helping others who are struggling with it, [who] went through what I went through. (patient)