To analyze the relationship between diagnostic delay and rates of anxiety and depression in patients living with Amyotrophic Lateral Sclerosis (plwALS).

For plwALS, the average delay from symptom onset to diagnosis is 10-16 months. The arduous diagnostic journey and progressive functional impairment likely result in emotional distress, though it's understudied. Our study explores the relationship between the time to diagnosis, anxiety and depression at initial multidisciplinary clinic visits to understand need for early mental health intervention.

PlwALS, seen for their first multidisciplinary clinic visit at the Virginia Commonwealth University Health ALS Clinic in Richmond, Virginia, were administered the Patient Health Questionnaire-9 (PHQ-9) and General Anxiety Disorder-7 (GAD-7) surveys to measure depression and anxiety, respectively. Diagnostic delay was calculated as the length of time between symptom onset and formal diagnosis. Demographic characteristics, such as age, gender, and race, and baseline clinical characteristics including ALS Functional Rating Scale-Revised (ALSFRS-R) and upright forced vital capacity (FVC) were also incorporated into a linear regression model. Spearman’s rank correlation coefficient was computed for diagnostic delay and PHQ-9 and GAD-7.

The analysis included 27 plwALS (11 female, 16 male). 21 White plwALS, 3 Black, and 3 with other races were included. The average diagnostic delay was 17.1 months (SD ±16.4), average ALSFRS-R was 34.7 (SD ± 9.6), and FVC was 73.7% (SD ± 28.2). The average PHQ-9 was 9.0 (SD ±5.0) and GAD-7 was 6.3 (SD ± 5.8). In this study, diagnostic delay had a significant negative correlation with PHQ-9 ( p < 0.05) and in the linear regression model, only diagnostic delay significantly associated with PHQ-9 (p = 0.026). GAD-7 was not statistically significantly associated with diagnostic delay.

Data collection is ongoing for this project, but in this small pilot study, a statistically significant relationship between depression and diagnostic delay was identified, regardless of disease severity.