Our paper on measuring outcomes that matter to depressed patients, caregivers, & healthcare professionals is out, led by the brilliant 🔥@ChevanceAstrid🔥.
Details in 🧵below. If you RT only one of my tweets this year, make it this one.
sciencedirect.com/science/articl…
Details in 🧵below. If you RT only one of my tweets this year, make it this one.
sciencedirect.com/science/articl…
1/ Clinical studies on depression assess symptoms (e.g. sad mood), but there are no proper standards on what symptoms to measure. A recent meta-analysis on psychotherapeutic interventions (200 studies) identified 33 different outcomes used.
2/ Further, symptoms are not a good proxy for how people are doing; e.g. recovery of functioning often lags half a year behind symptom recovery. Finally, it's 2020, yet it is unclear what outcomes we should measure to fully capture people's lived experiences with depression.
3/ The goal of our study was therefore to initiate starting to develop a Core Outcome Set for depression that captures experiences broadly—based on feedback from patients, caregivers, and health-care professionals.
4/ To do so, @ChevanceAstrid set up an online questionnaire. We received 8183 open-ended answers from 1912 patients, 464 informal caregivers, & 627 health-care professionals from 52 countries, who told us what outcomes that matter to them.
5/ Qualitative analyses identified 80 outcomes domains related to benefits of treatment, many of which are not commonly measured. These can broadly be categorized into symptoms (red) vs functioning (blue). Line thickness is proportional to how often outcome were mentioned. 
6/ In addition, we identified 57 outcome domains unrelated to benefits of treatment, incl. medication efficacy, treatment safety, facilitation of psychotherapeutic approaches, medical care organisation, social representation of depression, etc.
Most important ones:
Most important ones:
7/ As Astrid writes in the discussion, this study is, to our knowledge, the very first large-scale study to query patients, informal caregivers, and health-care professionals about depression outcome domains that matter to them. In 2020. That is remarkable in all sorts of ways.
8/ There are many limitations to the study, the most important one being the representativeness of the sample. While we had respondents from 52 countries overall, most participants were white & from a few first-world countries. Lots of follow-up work to do.
9/ I want to conclude with a few quotes in which participants told us what matters to them, & what we should measure in clinical studies. These are well-known to clinicians of course, but (like me) not all of you have experiences with patients. I hope these are insightful.
10/ Some more specific ones:
“My mother told me ‘I did not know that humans could suffer so much’. She lost any interest. I wished she could go back to what she was before. I could not recognize her” (informal caregiver, woman, aged 49 years)
“My mother told me ‘I did not know that humans could suffer so much’. She lost any interest. I wished she could go back to what she was before. I could not recognize her” (informal caregiver, woman, aged 49 years)
11/
“The lack of energy and motivation leads to stopping what you previously enjoyed. Or motivation makes it difficult to maintain your daily routine and avoid self-negligence. Also, you can feel that your neurological abilities are low” (patient, other gender, aged 23 years)
“The lack of energy and motivation leads to stopping what you previously enjoyed. Or motivation makes it difficult to maintain your daily routine and avoid self-negligence. Also, you can feel that your neurological abilities are low” (patient, other gender, aged 23 years)
12/
“The worst is my weakness. I have no energy and an abyssal fatigue. I cannot get out of my bed. I cannot do anything in a day, and I can’t see no exit for this” (patient, woman, aged 44 years).
“The worst is my weakness. I have no energy and an abyssal fatigue. I cannot get out of my bed. I cannot do anything in a day, and I can’t see no exit for this” (patient, woman, aged 44 years).
13/
“I felt I was worthless, useless and I did not deserve to be loved. I always blamed me even when I was doing ok. I hated me always continuously and for no reason” (patient, woman, aged 37 years).
“I felt I was worthless, useless and I did not deserve to be loved. I always blamed me even when I was doing ok. I hated me always continuously and for no reason” (patient, woman, aged 37 years).
14/
“I was not able anymore to assume my daily living and I felt ashamed of my own place, and guilty, so I did not invite anybody home anymore, I was self-isolating” (patient, man, aged 36 years).
“I was not able anymore to assume my daily living and I felt ashamed of my own place, and guilty, so I did not invite anybody home anymore, I was self-isolating” (patient, man, aged 36 years).
15/
“It’s hard to make things up after 12 years. I feel bitter because of all these wasted years, which could have been efficient (find an interesting job, make friends, find a husband, have children, etc.)” (patient, woman, aged 31 years).
“It’s hard to make things up after 12 years. I feel bitter because of all these wasted years, which could have been efficient (find an interesting job, make friends, find a husband, have children, etc.)” (patient, woman, aged 31 years).
16/
“Social isolation and loneliness are the worst. When I finally recovered and went back to the world, I realized how social isolation made me lose a range of competencies. I had to learn again each single little thing of daily life” (patient, woman, aged 38 years).
“Social isolation and loneliness are the worst. When I finally recovered and went back to the world, I realized how social isolation made me lose a range of competencies. I had to learn again each single little thing of daily life” (patient, woman, aged 38 years).
17/
“I had to hide my depression not to make my relatives afraid, or not to be considered as crazy” (patient, woman, aged 42 years).
“I had to hide my depression not to make my relatives afraid, or not to be considered as crazy” (patient, woman, aged 42 years).
18/
“It is difficult to consider the symptoms as the result of a disease and not as a weakness. This is why I felt guilty and ashamed of being sick” (patient, woman, aged 31 years).
“It is difficult to consider the symptoms as the result of a disease and not as a weakness. This is why I felt guilty and ashamed of being sick” (patient, woman, aged 31 years).
19/19
Thanks to all participants who spent so much time on the survey, talking about their personal histories & lived experiences, & telling us about outcomes that matter to them. Pls consider following 1st author @ChevanceAstrid for similarly important work in the future.
🧵.
Thanks to all participants who spent so much time on the survey, talking about their personal histories & lived experiences, & telling us about outcomes that matter to them. Pls consider following 1st author @ChevanceAstrid for similarly important work in the future.
🧵.
PS:
