Recently I evaluated Caroline, a 15-year-old patient who presented with symptoms of depression, including insomnia, poor appetite, loss of interest in friends and activities, and inability to focus on her schoolwork. In addition, Caroline described a sad, dark view of herself, the state of the world, and her future. It seemed clear that I needed to address these aspects along with neurovegetative symptoms. When I asked Caroline about her treatment goals, I expected her to say she wanted to be happier, but I was surprised to learn that her priority was to “stop the same thoughts running through my head over and over” and quell her associated compulsions over much of the day to put things in order.
Research often does not describe the patients who come to our clinics. One of the chief reasons for this is that research studies typically have exclusion criteria in order to create more pure populations—usually, subjects with one diagnosis. But multiple comorbid diagnoses is more the rule than the exception in child and adolescent mental health care. In this article we’ll review the nuances of measuring improvement, especially in the context of treating complex mixtures with a common thread of adolescent depression.
Sorting out treatment goals To start with, we need to define what we are looking for as an outcome. Common rating scales such as the clinician-reported Children’s Depression Rating Scale-Revised (CDRS-R) and the adolescent-reported Patient Health Questionnaire (PHQ-A) can track symptom severity.
However, these scales do not necessarily measure outcomes that matter most to children, their families, and society. Functional outcomes and even patient and parent goals of treatment must also be taken into consideration. For example, what about the teenager who is less depressed but still not going to school?
A 2019 JAACAP research study suggests that, in addition to the usual symptoms, it is important to focus on broader ranges of outcomes, or domains (Krause KR et al, J Am Acad Child Adolesc Psychiatry 2019;58(1):61–71). These include:
The usual symptoms include altered mood, appetite, energy, concentration, and sleep, as well as suicidal thoughts.
At home, is the patient getting up, dressed, showering, brushing her teeth? Is she helping with meals and caring for pets? At school, is she attending class and engaged in class discussions and activities? Is she getting her schoolwork done? Is she still going to sports, clubs, or other groups?
How is the patient getting along with family and peers? What is his capacity to mutually connect and participate with close family members and best friends or dating partners? How has this changed?
Goals of treatment. What are the patient’s own treatment goals?
Service utilization. What level of care makes sense for the patient right now given her overall functioning? This includes psychiatric and other mental health services at outpatient and other levels of care, but also medical needs and supports such as school counselors and academic accommodations or modifications.
Parental functioning. There is growing research showing that when parents suffer, kids have more difficulty. Assess parental needs for support and treatment and make those referrals, preferably with warm (facilitated) handoffs to help ensure follow-through.
Physical health. Patients need to have good medical assessment and often have additional medical needs, including management of chronic conditions such as asthma, obesity, sleep disorders, etc.
A mix of perspectives and targets? Another issue is who’s reporting these improvements; is it the clinician, the parents, or the patient? Ideally, we should consider everyone’s perspective, but this doesn’t always happen, especially in research. The bulk of research focuses on clinician-rated improvement, and if youth reports are even considered, they are often not a primary outcome.
Using depression as an example, researchers in the aforementioned Krause study tracked 98 depression trials between 2007 and 2017 to determine how those authors measured improvement and who the respondents were, and if either of these variables changed over the 10 years.
Most studies (94%) measured symptom severity via the CDRS-R. The next most common outcome was functioning (48%), usually assessed via the Clinical Global Impression Scale-Improvement (CGI-I). Some studies also looked at academic functioning and graduation rates. Less frequently, 13% of studies measured cognitive or behavioral patterns, like ruminative thinking, and/or changes in comorbidities such as drug use. Only a smattering of studies measured changes in patient satisfaction, treatment compliance, or personal growth (< 10%). 53% of studies included youth self-report, and 75% of studies primarily relied on a clinician’s report. Researchers relied on youth self-report for domains not easily assessed otherwise, such as patient satisfaction and quality of relationships (Krause, 2019).
Over the course of these studies, there were upward trends in the number of domains measured and the number of studies including youth self-report. By 2015, all studies published included youth self-report. The authors speculate these trends may reflect changes in mental health policies aligned toward these outcomes.
Looking at Caroline’s case, I was able to see that her ruminations were creating a lot of her distress and interfering with her ability to concentrate at school and to connect with family and friends. She did better when she was actively playing lacrosse, so we worked to keep this activity going while using medication and cognitive behavioral therapy to help combat her ruminative thinking. Still, we needed to work with Caroline’s school to offer more flexibility in completing assignments during her treatment, which would help prevent her from falling too far behind. This approach was organizing for not only Caroline, but also her parents; their distress was ameliorated, making the entire process smoother (DeJong H et al, J Behav Ther Exp Psychiatry 2019;63:28–35).
CCPR Verdict: Real-world treatment planning demands that clinicians think beyond tracking symptom reduction in isolated psychiatric conditions. With such a framework, we can optimize care through evidence-based assessment and treatment practices. Yet we don’t typically see this in research due to factors such as deadlines, money, policy priorities, recruitment, and the need for statistical validity and reproducibility in research. Evolving research frameworks such as the NIMH Research Domains Criteria (RDoC) will help. In the meantime, we need to think beyond simple disease reduction when we ask, “How are you feeling today?”