Experience of the diagnostic journey for ADHD in adulthood: A quantitative and qualitative study

Attention deficit disorder with or without hyperactivity (ADHD) affects between 2% and 3% of the world's adult population. In France, there is a noticeable lack of understanding of adult ADHD, which is still too often considered a childhood disorder and is sometimes the cause of a delayed diagnosis for these patients.

To assess the diagnostic experience of people diagnosed with ADHD during adulthood, we carried out a quantitative study with a self-questionnaire proposed to 201 patients aged 17 or over, as well as a qualitative study with 8 patient interviews.

In our sample of respondents, 47% felt that they had had a difficult to very difficult diagnostic journey. Throughout the diagnostic process, patients diagnosed with ADHD in adulthood were confronted with various factors influencing their experience, some of which cannot be modified (age, gender, personal experiences, characteristics of the disorder, etc.), and some of which may have had an impact on the direction this process took. For the rest, the patient's surroundings and the encountered care providers played a major role in the patient's experience of the people around him/her and their beliefs, the patient him/herself, or the physicians met, and their responses and attitudes towards the patient. These factors were all evaluated in this study. Interview analysis of these patients' experiences reflected the serious consequences of misdiagnosis. Even though ADHD has been recognized and defined for many years, the persistence of controversy, beliefs and even misinformation, with disagreements sometimes even within the medical profession, have impacted the patient's journey. However, the diagnosis of ADHD, albeit later in life, is generally well accepted by patients who express relief from the guilt associated with their past experiences. This diagnosis also helps reduce the consumption of medical treatments, because of an adapted care, and represents a key for these patients to understand their own identity.

The diagnostic journey for adult ADHD sufferers is long and difficult. Efforts to raise awareness of adult ADHD, both among medical staff and the general public, as well as the introduction of tools to help facilitate this diagnostic journey still need to be developed.