This study aimed to determine the presence of anxiety disorder and severity of anxiety symptoms in an extensive series of consecutive patients with JME and its association with epilepsy-related factors. In addition, we evaluated the impact of anxiety and clinical variables on social adjustment. Methods: We prospectively evaluated 112 (56.2 % females, mean age 27.2 years) patients with an electroclinical diagnosis of JME and 61 (52.4 % females, mean age 29.3 years) healthy controls. Anxiety symptoms were assessed by the State and Trait Anxiety Inventory (STAI). Social functioning was addressed with Self-Report Social Adjustment Scale (SAS). The patient group was also evaluated with a psychiatric interview. Results: Patients with JME presented more severe anxiety symptoms and worse social adjustment compared with controls. The presence of anxiety disorder and the severity of anxiety symptoms was associated with frequent seizures -generalized tonic-clonic seizures (p = 0.008) and drug-resistant epilepsy (p = 0.021). Regarding social adjustment, the severity of anxiety symptoms was associated with lower economic adjustment (p = 0.039), while the presence of anxiety disorder impacted family relationships (p 0.025). The presence of hard-to-control myoclonic seizure was associated with lower scores on work (p = 0.019), leisure activities (p = 0.008), family relationship (p = 0.022) and overall social adjustment (p = 0.038). Conclusion: Patients with JME have severe anxiety symptoms and worse social adjustment. Anxiety disorder and symptoms were associated with frequent seizures and drug-resistant epilepsy. Epilepsy-related factors and anxiety impaired distinct aspects of social functioning.
Objectives: Youth with chronic pain often struggle to function in multiple domains due to pain and associated psychosocial distress. In 2020, schools and businesses shut down and people were encouraged to remain at home due to the COVID-19 pandemic, eliminating or reducing stress due to functional difficulties. This study assessed whether pain and associated psychosocial outcomes improved in youth with chronic pain during the shutdown, compared with before the pandemic.Methods: Patients who completed clinical outcome measures during a multidisciplinary evaluation before the pandemic were readministered the same measures (PROMIS Anxiety, Depression, Sleep Disturbance, PCS, PedsQL) during the shutdown. At follow-up, patients also completed measures of adjustment to COVID-19 and their parents completed a measure of pandemic effects.Results: Participants included 47 patients ages 8–18 and a parent/guardian. The pandemic impacted families in both positive (e.g., more quality time with family) and negative ways (e.g., social isolation, disruption in care). Pain intensity and pain catastrophizing significantly decreased during the shutdown (ps <0.01). Change in pain catastrophizing was correlated positively with change in psychological stress (p = 0.004) and anxiety (p = 0.005) and negatively with change in quality of life (p = 0.024).Discussion: Pain and pain catastrophizing decreased initially during the shutdown related to the COVID-19 pandemic. Change in catastrophizing was associated with change in stress and anxiety. It may be that the reduction in functional demands contributed to this change. Functional difficulties should be addressed in treatment, including pain coping and also environmental modification to support optimal functioning in youth with chronic pain.
BACKGROUND Digital phenotyping is a promising methodology for capturing moment-to-moment data that can inform individually adapted and timely interventions for youth with chronic pain. OBJECTIVE The current study aimed to investigate adolescent and parent endorsement, perceived utility, and concerns related to smartphone sensor data collection for digital phenotyping for clinical and research purposes in youth with chronic pain. METHODS Through multiple-choice and open-response survey questions, we assessed participant perspectives on passive data collection from the following nine embedded smartphone sensors: Accelerometer, Applications, Bluetooth, Text/Call Log, Keyboard, Voice, Light, Screen, and GPS. RESULTS Quantitative and qualitative analyses indicated that adolescents and parent endorsement and perceived utility of digital phenotyping varied by sensor, though participants generally endorsed the use of sensor-collected data, if a certain level of utility could be provided. All participants reported primary concerns related to privacy and accuracy and validity of data collected. CONCLUSIONS Findings support the tailored use of digital phenotyping for this population and can can help refine this methodology toward an acceptable, feasible, and ethical implementation of real-time symptom monitoring for assessment and intervention in youth with chronic pain.
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