Reduced Levels of Resilience Reported in Patients With Narcolepsy Type 1

Francesca Ingravallo, MD, PhD

In a cross-sectional study published in the Journal of Clinical Sleep Medicine, findings revealed that patients with narcolepsy type 1 (NT1) have lower levels of resilience compared with controls.¹ These results suggest that resilience may have an important role in patients' adjustment to living with the disease and support early interventions that aim to foster resilience in patients with the condition.²

Patients with NT1 had a significantly lower (122.6 vs 135.5) mean Resilience Scale (RS) score and had a 2-fold risk of having low/mild-range resilience (adjusted OR = 1.99; 95% CI, 1.13-3.52) compared with the control group. Notably, patients with high resilience had sociodemographic and narcolepsy characteristics similar to those with low resilience, although they reported less frequently anxiety and depressive symptoms (4.2% vs 55.8% and 58.3%, respectively), and their 36-item Short Form Survey (SF-36) scores were comparable with those of the controls.

Senior author Francesca Ingravallo, MD, PhD, associate professor of legal medicine, University of Bologna, and colleagues wrote, “In our study, both anxious and depressive symptomatology were strongly correlated with resilience, and among patients with high resilience fewer than 5% had psychological problems. Interestingly, the high-resilience group of patients had sociodemographic and NT1 characteristics similar to patients with lower resilience, but their QoL was comparable to that of patients without narcolepsy.”¹

The study recruited 137 patients with NT1 (mean age, 38.0 years; women, 52.6%) and 149 age-and sex-matched controls (39.6 years; women, 55.7%). Semistructured interviews and validated questionnaires collected sociodemographic and clinical data from the participants. These included the use of the SF-36, RS, Epworth Sleepiness Scale (ESS), State-Trait Anxiety Inventory (STAI)-State Anxiety, and Beck Depression Inventory (BDI). Researchers investigated the relationship between resilience and NT1 as well as the associations of sociodemographic and clinical features using different statistical approaches.

Patients with NT1 more frequently reported having a low level of education (patients completed, at most, elementary or middle school, 25.6% versus controls, 13.4%) and less frequently had a partner (50.4% vs 80.5%) or a work/study activity (73.7% vs 84.6%). In terms of body mass index, affected patients were significantly less frequent of normal weight (32.9% vs 66.9%) and more frequently obese than controls (23.4% vs 10.8%). Higher levels of EDS were observed in patients with NT1 compared with controls (mean ESS, 12.3 vs 5.5). Additionally, more patients with NT1 had ESS score at least 11 (60.7% vs 7.3%).

When assessing the mean ESS score, a trend (P = .059) was observed, represented by scores of 13.1 in patients with low resilience, 12.1 in patients with midrange resilience, and 10.0 in those with high resilience. Patients with low resilience reported a significant decrease in the rate of severe anxiety (from 55.8% to 4.2%) and a BDI greater than 13 (from 58.3% to 4.2%); mean STAIState Anxiety and BDI scores reduced from 46.3 to 30.1 and from 18.3 to 4.1, respectively. The RS score was strongly associated with STAI-State Anxiety and BDI (rho = -0.57 and -0.56, respectively) and weakly with ESS (rho = -20) scores in patients with NT1.

“In our study, only a trend for reduced ESS scores in patients with higher resilience and a weak correlation between ESS and RS were observed. These results could suggest a relationship between sleepiness and resilience, especially when considering that patients with high resilience had a mean ESS score in the normal range,” Ingravallo et al wrote.¹

Furthermore, there was an inverse correlation trend observed between age and resilience in patients with NT1, although researchers observed no association between sex and resilience. There were no significant associations shown between levels of resilience and age at onset, age at diagnosis, or diagnostic delay in patients with NT1. Additionally, patients with narcolepsy type 1 reported having lower quality of life scores compared with the controls.

The small number of patients enrolled into the study was considered a limitation by the investigators, as NT1 is a rare sleep disorder. Researchers also noted that the recruitment strategy included the control group which might have had an influence with the high levels of anxiety and depressive symptoms observed in the patients in that group. Additionally, the design of the study may have limited the ability to establish causality or determine changes over the course of time. There may be a response bias with resilience since it was measured with a self-reported questionnaire.

“Future research, preferably with a longitudinal design and including objective measures, is needed to clarify the relationship between resilience, depression, and quality of life in patients with narcolepsy and other chronic disorders,” Ingravallo et al noted.¹ “Furthermore, our study examines a psychological phenomenon that has not yet been explored in narcolepsy, laying the groundwork for future research into modifiable factors associated with disease adaptation.”

REFERENCES
1. D'Alterio A, Menchetti M, Zenesini C, et al. Resilience and its correlates in patients with narcolepsy type 1. J Clin Sleep Med. 2023;19(4):719-726. doi:10.5664/jcsm.10418
2. Ovaska-Stafford N, Maltby J, Dale M. Literature Review: Psychological Resilience Factors in People with Neurodegenerative Diseases. Arch Clin Neuropsychol. 2021;36(2):283-306. doi:10.1093/arclin/acz063