New research distills insights from patients, caregivers & health professionals to provide a comprehensive picture.

“I go through a lot of depression, and I know other people do, too, but I have an outlet that so many people don’t. If you have that inside of you and can’t get it out, what do you do?” — Billie Eilish

The burden of depression

Depression, diagnostically Major Depressive Disorder and related psychiatric illness, is a common cause of disability and suffering. According to the World Health Organization, depressive illnesses affect nearly 300 million people around the world. As reported by the National Institutes of Mental Health, depression affects at least 17 million people in the U.S yearly, and over 20 percent of people experience clinical depression in their lifetimes (Hasin et al, 2018).

Approximately 64 percent of people with depression are severely affected, leading to chronic disability and loss of satisfaction for them and those close to them. Depression does not only affect the depressed person.

Given the burden of clinical depression, it is troubling that 35 percent of people with depression remain untreated, though a growing number of effective treatments are readily available.

Researching depression

When researchers formally study depression, they use a host of statistically-validated rating scales to quantify depression symptoms and impact, focusing on thoughts, feelings, behavior, functional outcomes and impact on productivity and quality of life. Problematically, current research not only does not have a standardized approach, common measures also miss key areas, or fail to measure them clearly-enough, getting in the way of consistency and applicability, and impeding research, treatment and advocacy.

Considering what is at stake, it would make sense to have a “core outcome set” (COS), derived from the real-world experiences of patients, community caregivers like close family, and healthcare professionals.

As published in Lancet Psychiatry (Chevance et al, 2020), a consortium of experts from elite institutions around the world(1) surveyed a diverse group about depression focusing on both open-ended qualitative questions, which they then analyzed for key recurring themes and specific issues, as well as structured questions on demographics, treatment factors, and severity and duration of illness. There were 3003 participants in the full study group, 64 percent patients, 15 percent informal caregivers, and 21 percent healthcare professionals.


After analyzing the data for broad-brush stroke themes as well as laser-focusing on particular issues, researchers found 80 specific domains, 64 relating to symptom reduction and 16 functional improvement, as depicted here:

Graph of depression symptoms, outcomes and related factors, Source: Chevance et al., 2020

The 80 domains grouped into 10 major categories. Percentage of the total sample is noted here for more common high-impact domains. The original study has detail, including breakdown by group and expectations about how treatments could help, not allowable here due to space:

1. Autoaggression (self-directed aggression) — 4 domains(2)

  • Suicidal ideation (23 percent)
  • Suicide attempt (3 percent)
  • Loss of desire to live (17 percent)
  • Self-harm (1 percent)

2. Mood and Emotional Symptoms — 19 domains

  • Relief of mental pain (17 percent)
  • Anxiety (17 percent)
  • Sadness (17 percent)
  • Hopelessness
  • Helplessness
  • Worthlessness
  • Feeling bad
  • Guilt
  • Fear of failure
  • Restlessness
  • Irritability
  • Frustration
  • Difficulty regulating emotions
  • Self-control problems
  • Mood reactivity
  • Loss of sense of humor
  • Loss of ability to feel pleasure (anhedonia)
  • Emptiness
  • Emotional blunting

3. Cognitive symptoms — 18 domains

  • Low motivation (13 percent)
  • Cognitive distortions (9 percent) (link)
  • Low social interest (8 percent)
  • Interest
  • Incurability
  • Pessimism
  • Impaired decision-making
  • Impaired executive functions
  • Reduced cognitive flexibility
  • Difficulty solving problems
  • Memory loss
  • Low concentration
  • Difficulty with time management
  • Distorted time perception
  • Poor future outlook
  • Rumination on negative thoughts
  • Clouded thinking (“brain fog”)
  • Impaired empathy

4. Reduction of physical symptoms — 14 domains

  • Fatigue (15 percent)
  • Low energy (9 percent)
  • Disturbed sleep (9 percent)
  • Insomnia (8 percent)
  • Crying, for “no reason” (described as an “impairing” symptom, 4 percent)
  • Pain and other somatic symptoms
  • Appetite and weight change
  • Sexual dysfunction
  • Sleeping too much (hypersomnia)
  • Being unable to communicate (mutism)
  • Facial expressions
  • Feeling unable to move at normal speed (psychomotor retardation)
  • Everything is effortful
  • Weakness

5. Biased self-perception — 8 domains

  • Low self-esteem (13 percent)
  • Low self-confidence (4 percent)
  • Loss of self-recognition (4 percent)
  • Persecution
  • Loneliness
  • Feeling like a burden
  • Feeling misunderstood
  • Dissociation (being cut off from thoughts, feelings, sense of self, having identity issues, etc.)

6. Basic functions — 4 domains

  • Getting out of bed (3 percent)
  • Self-care (2 percent)
  • Daily tasks (18 percent)
  • Loss of autonomy (4 percent)

7. Complex functions — 3 domains

  • Dealing with administrative or financial issues (4 percent)
  • Coping with daily events requiring adaptive skills (4 percent)
  • Personal growth (1 percent)

8. Social life improvement — 6 domains

  • Social isolation (18 percent)
  • Low quality of interpersonal relationships (5 percent)
  • Negative impact on family life (5 percent)
  • Self-exclusion
  • Social-exclusion
  • Difficulty communicating feelings

9. Professional life improvement — 3 domains

  • Fulfilling professional responsibilities (11 percent)
  • Avoiding sick leave [when it should be taken] (1 percent)
  • Job loss or educational withdrawal

10. Other — 57 domains

The final category included concerns about medication effectiveness, treatment safety, use of therapy, access to medical care, integrating other therapeutic activities (e.g. meditation, exercise, diet, etc.), difficulty seeking help, and stigma. Participants described important areas, including:

  • Raising societal awareness (19 percent)
  • Reducing stigma (e.g. “depression is not weakness, sign of laziness or lack of courage”, 14 percent)
  • Improving access to psychiatric care (10 percent)
  • Difficulty with insight into illness (reported by patients)
  • Talking with depressed patients — making therapy mandatory, having psychiatrists talk more, and having social support (reported by informal caregivers)
  • Improving recognition by society and family of depression as a serious illness (healthcare professionals)

Future directions for depression research, treatment and advocacy

This study is important because it affords a 360-degree view of clinical depression, integrating qualitative and quantitative data from patients, informal caregivers and healthcare professionals to move toward a needed core outcome set. Such a comprehensive perspective allows for greater consistency in future research while also providing an immediately applicable framework for improving our approach to depression.

Having a comprehensive perspective makes it easier to identify areas for development. The study authors point out important gaps in current methodologies. For example, the 7 scales used most often in research don’t clearly measure mental pain, although mental pain is a key symptom and precipitant of suicidal crisis.

Likewise, commonly used rating instruments do not sufficiently look at basic and complex function, Only 5 percent of studies on depression, they note, really focus on functional outcomes. Identifying functional outcomes is important for research, and critical for effective treatment.

Targeting high-impact functional areas with quantified goals and outcomes greatly improves treatment results when included in treatment plans which includes structured feedback. granular tracking of treatment effectiveness, and responsive treatment adjustment.


1. Centre of Research in Epidemiology and Statistics Sorbonne Paris Cité, Institute for Health and Medical Research, and French National Institute of Research for Agriculture, University of Paris, Paris, France

Department of Epidemiology, Columbia University Mailman School of Public Health, New York, NY, USA

Department of Psychiatry, University of Oxford, Oxford, UK

Department for Evidence-based Medicine and Evaluation, Danube University Krems, Krems, Austria

Department of Clinical Psychology, Leiden University, Leiden, The Netherlands

RTI International, Research Triangle Park, Durham, NC, USA

Oxford Health NHS Foundation Trust, Warneford Hospital, Oxford, UK

2. Participants reported that such feelings led to exhaustion and guilt, a daily struggle against a heavy burden, on patient for example describing “The worst in depression is to feel empty, nothing matters, everything is unbearable, the only wish is that it stops at one point, and then comes the daily struggle against yourself, not to commit suicide.” The experience of inescapable emotional pain is consider a trigger for suicide crisis, as highlighted by celebrity suicide:

“Perceived entrapment and perceived defeat are related factors in precipitating a suicide crisis. In their analysis of multiple studies of suicide in different psychiatric conditions, Siddaway and colleagues define perceived defeat as “a perception of failed struggle and powerlessness resulting from the loss or significant disruption of social status, identity or hierarchical goals.” There are three key common causes: 1) failure or loss of success in gaining material or social assets; 2) humiliation and attack from others; and 3) self-attack in the form of intense self-criticism, shame, loss of social status, or failure to make progress toward one’s goals.”

National Suicide Prevention Lifeline

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Grant H Brenner
Psychiatrist, Psychoanalyst, Entrepreneur, Writer, Speaker, Advocate



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