Chevance, A., Ravaud, P., Tomlinson, A., Le Berre, C., Teufer, B., … Tran, V.T. (2020). Identifying outcomes for depression that matter to patients, informal caregivers, and health-care professionals: Qualitative content analysis of a large international online survey. The Lancet Psychiatry, 7, 692-702.
One of the criticisms of mental health treatment research is that the outcomes measured in these studies are those that matter to researchers but may not matter as much to patients. Common outcome measures of depression like the Beck Depression Inventory (BDI), the Patient Health Questionnaire (PHQ-9) or the Hamilton Depression Rating Scale (HDRS) were developed by researchers because of their relative ease of use, and their sensitivity to change following treatment. But these measures provide a narrow view of what it is like to experience depression because they focus only on a limited set of symptoms. But is symptom reduction the only thing that matters to patients and their loved ones? In this large-scale study by Chevance and colleagues, the authors surveyed over 1900 patients with a mood disorder, 464 informal caregivers (family members), and 627 health care providers from a wide range of mental health disciplines. The survey extended across dozens of countries and sampled a range of age groups. The authors asked patients open ended questions about what outcomes are important to them in the treatment of their depression, and then the responses were analyzed using a qualitative method. Chevance and colleagues identified two broad categories important to patients: symptoms and functioning. Regarding symptoms, patients identified several domains in which they wanted to experience improvements. These included: their perception of their self (e.g., self-esteem, self-confidence), physical symptoms (e.g., sleep, energy level), cognitive symptoms (e.g., social interest, cognitive distortions, motivation), emotional symptoms (e.g., mental pain, anxiety, sadness), and symptoms related to burden of suicidal thoughts. Regarding functioning, patients identified four domains in which they wished to see improvements. These included: elementary functioning (e.g., self-care, coping with daily tasks, autonomy), social functioning (e.g., social isolation, interpersonal relationships, family life), professional functioning (e.g., loss of job/studies, professional responsibilities), and complex functioning (e.g., coping with daily life, financial issues, personal growth).
Clearly, patients, their loved ones, and those who provide treatment have a much broader view than researchers of what constitutes important outcomes to their mental health treatment for depression. The two most common symptom outcomes identified by patients were psychic pain and the burden imposed by suicidal ideation, yet these rarely assessed as primary outcomes in psychotherapy studies. And outcomes like social functioning, family relationships, and personal growth are not primary outcomes, and often they are not assessed at all in research studies. Clinicians would do well to take a broader view of what is important to patients, and to keep in mind their patients wishes as they develop collaborative goals for treatment with patients. It may be useful not only to use standardized scales to aid in developing treatment plans, but also to ask patients what they hope to gain from therapy should the treatment be successful.