PolicyLab

Adolescence is a time of peak risk for depression and anxiety in childhood. Adolescent patients with chronic disease such as lupus have additional psychological stress associated with their illness and its treatment, increasing their risk of for depression, anxiety, and suicidal thoughts compared to their healthy counterparts. Optimizing mental health through efforts to improve early recognition and treatment of depression and anxiety in adolescents with lupus and other chronic disease is important for achieving the best clinical and psychosocial outcomes. However, adolescents with chronic disease may face barriers to recognition of mental health problems as well as to mental health treatment access. In lupus, a condition in which minorities comprise much of the affected population, patients may experience suboptimal mental health care due to cultural stigma, as well as racial and socioeconomic disparities in healthcare access.

Recently, national attention and research efforts have largely focused on collaborative care models to improve mental health care access in primary care, but this approach may not be best for certain groups of adolescents with chronic disease. For example, adolescents with lupus and their families often build a strong rapport with their rheumatologist due to a higher frequency visits compared to their primary care provider. Yet, most rheumatologists likely lack training and resources to connect their patients with the mental health services they need.

Take the case of Jessica*, for example, a 14-year-old girl with lupus who has been feeling anxious for several months. She is worried about her lupus, her health and her future. After her anxiety starts affecting her ability to concentrate on schoolwork, she tells her mother, who is not sure what to do. She tries to comfort Jessica and hopes that the feelings will pass. Jessica has developed a strong relationship with her rheumatologist, Dr. Smith, talking about hobbies, family, and school with her at each visit. Dr. Smith asks Jessica how she is feeling at her next visit. She feels awkward to bring it up, but comfortable telling Dr. Smith almost anything, so Jessica tells her about her worry. Dr. Smith assures Jessica that these feelings are normal, telling her to go to the mall with friends or hug her mom when she feels this way, unintentionally minimizing Jessica’s feelings. Two more months pass, and she has missed several days of school because of her anxiety, her grades have slipped and finals are coming up. Jessica’s mother finally seeks help and gets the name of a therapist through a family friend. Two months later Jessica is started on medication and psychotherapy, with improvement in her anxiety, but her school year has suffered.

In another case example, fifteen-year old Katelyn* has Systemic lupus erythematosus, and has been battling feelings of depression. As an introverted teenager, Katelyn doesn’t feel close with her mother or step-father, and doesn’t feel comfortable telling anyone, even hiding it from her rheumatologist at follow-up visits. These feelings persist, getting progressively worse, and finally push Katelyn to overdose on prescription pills in an attempted suicide. Upon finding her unconscious upstairs in her bedroom, her family rushes her to the emergency room, where she recovers and is referred to a psychologist for therapy and antidepressants. Everyone, including her rheumatologist, is shocked, unaware she was even feeling depressed. Her rheumatologist orders neuropsychiatric testing and now closely examines Katelyn and all of her other patients for signs of depression or suicidal ideation. 

Similar challenges likely exist for adolescents with other chronic disease in subspecialty care. We are only at the beginning of understanding the complex promoters and barriers to meeting the mental health needs of adolescents with lupus and other chronic disease; but there is great opportunity to increase awareness in patients, their families and their clinicians, and to inspire action to implement solutions to improve mental health care and patient outcomes.

* These cases are a composite of many and do not present any patient identifiers.