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Table 4 Symptom and treatment status of youth with SLE/MCTD and a mental health history (N = 9)

From: Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: a qualitative study of youth and parent perspectives

Youth Initial screen Interim history & treatment status at interview (follow-up time) Illustrative quotes
11 y/o Female Anxiety Referred at initial study; did not seek further evaluation or treatment; symptoms resolved (2.0 years) “I really thought that it had to do with her health…so I figured if we got the health straightened out, the rest of it would work itself out, which it did. We didn’t really address it…. She was never referred to, like, a psychiatrist or psychologist.” Parent
17 y/o Female Depression Anxiety Suicidal ideation Referred at initial study; in weekly sessions with school counselor; persistent depression & anxiety (2.2 years) “I have anxiety issues…I went to my counselor and then I went to my mom and they both agreed and so that’s where I went.” Youth
“We found it on our own. They offered it at school and we thought it would be good for her… It was free.” Parent
17 y/o Female Anxiety Referred at initial study; persistent anxiety, new depression; PCP manages psychotropic medication; receives counseling through social worker at school (2.1 years) “First, I was having anxiety and anxiety attacks…and I think I’d been having bouts of depression for a while and just, kind of, didn’t realize it and pushed it under the rug…when I came to terms with it, I got on medicine that’s really helping, and just being more open about it helps a lot… I also have a social worker at school that I talk to.” Youth
“We went in and talked to [the pediatrician] and brought it up to her, and that’s when she put her on medication…definitely something that she needed…she talks to the social worker at school, and I’ve always asked her, do you need to talk to somebody else, and at this point she doesn’t feel like she needs to because we just have such a good relationship.” Parent
16 y/o Male Depression Suicidal ideation Referred at initial study; did not seek further evaluation or treatment; persistent depression (1.6 years) “Sometimes I feel sad, like really sad …sometimes I just don’t feel comfortable talking about that, to anyone…[my rheumatologist] did recommend a psychologist, but I was like, I don’t need it. I’m not that sad.” Youth
19 y/o Female Depression Suicidal ideation Anxiety In treatment at initial study; discontinued psychiatric medications and stopped seeing therapist by time of interview; persistent depression & anxiety (2.3 years) “I pulled myself off of my medication for my 17th birthday…I wanted to [to go back to therapy]…I just never got around to it.” Youth
“Currently, I would say she’s doing better, but she does have her own anxieties …and depression because of the illness…the infertility issues, life span issues, what lupus can and can’t do to you…and we did–I did, have her with a counselor to help with dealing with this whole illness in a teenage life on top of a female teenage life with everything else that goes on” Parent
19 y/o Female Depression Anxiety Suicidal ideation In treatment at initial study; on psychotropic medication managed by PCP; irregular therapist visits; persistent depression & anxiety; history of ODD &ADHD (2.5 years) “Well, I mean, she was seeing a psychiatrist, like I said. She didn’t want to get up and she don’t want to go. So she been seeing a psychiatrist since she was like about four or five…she hasn’t been keeping appointments. So her primary care prescribes the Abilify and the Concerta for her. She was scheduled [for therapy], but she don’t keep the appointments.” Parent
14 y/o Female Negative Concealed depression and anxiety symptoms on initial screen; subsequent suicide attempt & inpatient psychiatric hospitalization; on psychotropic medication and in psychotherapy at time of interview (2.0 years) “At the time, my parents didn’t know what I was feeling, going through, so I may have like said feelings sad, maybe sometimes, not all of the time… it’s been like almost two years, depression, anxiety … I see a therapist. I don’t see how talking helps, but everybody else says it does, so I try to.” Youth
“As she’s getting older, she’s developing different kinds of feelings about having an illness that she needs to always think about, it’s part of her now…trying to interpret her and her emotions and it’s very hard.” Parent
18 y/o Female Negative New anxiety; symptoms minimized by PCP; self-referral to counselor on advice of family friend; undergoing cognitive behavioral therapy (1.9 years) “I have been seeing my psychologist for anxiety for the past, I think six months or so. I started seeing a psychologist for cognitive brain therapy” Youth
“She’s had some anxiety this year… and she expressed that to me…fears of being in a crowd, somebody could do harm, fears of being alone, fears that something could happen to me, if I don’t answer the text. So we did find a psychologist, a cognitive therapist” Parent
18 y/o Female Negative New anxiety; referred to mental professional by rheumatologist; did not seek further evaluation or treatment (2.0 years) “I get anxiety and I get stressed a lot. I’m a worrier. So that’s it, it affects my health.” Youth
“Emotionally, she’s a strong kid…she gets a little depressed… sometimes she can be a worrier. Every now and then, she’ll dip down and feel a little down, but she usually comes back to the top. It hasn’t bothered her to the point …where she’s sleeping all the time, but you can tell when she’s not feeling well” Parent