In partnership with Johnson & Johnson Innovative Medicine and MOAI Consulting, the “TRD Patient Voice” project found that one-third of people living with depression in Portugal waited more than a year to seek professional help after the onset of symptoms, while more than half of patients surveyed received their diagnosis over 10 years ago.

The results show that the path to diagnosis is often slow, non-linear and marked by challenges in accessing care, with a significant impact on the progression of the illness and on the quality of life of those affected.

Only 34 percent of respondents reported that it was easy to identify whom to turn to at the beginning of the process, suggesting that the healthcare system still does not offer sufficiently clear pathways or effective guidance for those seeking help in the early stages of the condition.

The data collected indicates that 36 percent of participants took more than one year between the onset of symptoms and the decision to seek professional support. According to TRD Patient Voice, this delay may be associated with factors such as barriers to accessing healthcare, social stigma, or difficulty recognising depressive symptoms as a health condition, contributing to a worsening of the clinical picture and a less effective therapeutic response.

Among respondents, more than half (56 percent) received their depression diagnosis more than a decade ago, while 27 percent received it less than five years ago. In addition, 60 percent of participants revealed that they have changed their antidepressant medication two or more times. These data emphasise the often prolonged and recurrent nature of depression, which in many patients follows a chronic course with alternating periods of remission and relapse.

The results also point to low levels of mental health literacy, as 42 percent of participants reported at the time of diagnosis having low or very low knowledge about depression, while only 22 percent stated that they had a high or very high level of knowledge about the condition. This lack of literacy may contribute to delays in seeking help and to feelings of confusion and stigma.

Healthcare professionals are the main source of information about depression for 83 percent of respondents. Meanwhile, there is a growing use of digital platforms, with 40 percent of participants describing that they use search engines and health websites, while 10 percent and 6 percent use artificial intelligence tools and social media to seek information, respectively.

A vast majority of participants detailed a moderate to high impact of depression on their daily lives, with 72 percent saying the condition has negatively affected their professional or academic life, and around 60 percent disclosed that it has influenced their financial situation.

The relational dimension also emerges as one of the areas most affected by depression, revealing the dual burden of social isolation and interpersonal stigma.

In the workplace, 29 percent of participants say they have concealed their diagnosis for fear of repercussions. Within the family context, approximately 40 percent feel that their relationships with relatives and friends are affected by the condition, illustrating the weight of stigma and the fear of discrimination.

Data relating to suicidal ideation highlight the severity of depression in this population: 36 percent of participants reported thoughts of death or self-harm in the 14 days preceding the survey, and 29 percent admitted having attempted to harm themselves at some point in their lives. These indicators point to a population experiencing persistent and severe psychological distress, which according to the literature, increases the risk of suicide by up to 20 times, reinforcing the importance of continuous clinical follow-up, risk monitoring and the implementation of appropriate safety plans.

“TDR Patient Voice” is an initiative promoted by Familiarmente in partnership with Johnson & Johnson Innovative Medicine and MOAI Consulting, aimed at giving a voice to people living with depression in Portugal. More than numbers or clinical indicators, this project sought to understand the real experience of people living with the condition as it unfolds in everyday life, highlighting the profound impact that depression has on personal, family, professional and social spheres.

A total of 298 people living with depression took part in this initiative.

TRD (Treatment-Resistant Depression) is a term used to describe cases in which depression does not respond adequately to at least two antidepressant treatment approaches, making the therapeutic process more complex. Although this study was not limited to patients with TRD, the project adopted this name in order to reflect its focus on understanding the experiences of people living with a persistent or difficult-to-treat depression.