To assess preliminary effects of telehealth-delivered group therapy for people with Stiff Person Syndrome Spectrum Disorders (SPSD) based on Acceptance and Commitment Therapy (ACT).

SPSD are a rare group of autoimmune neurological disorders associated with inhibition of gamma-aminobutyric acid (GABA) synthesis. Common symptoms of SPSD include muscle rigidity, painful spasms, anxiety, and pain. Several case studies have reported benefits of cognitive behavioral interventions for improving SPSD management. However, Acceptance and Commitment Therapy (ACT) has not been tested in a larger sample of SPSD patients.

Five cohorts (5-7 patients/cohort) of community-based SPSD patients (N=30) participated in a 6-week telehealth ACT group. Patient Reported Outcome Measurement Information System (PROMIS) measures were collected at baseline and post-treatment (Anxiety, Depression, Pain Interference, Fatigue, Cognitive Function, Sleep Disturbance, Self-Efficacy for Managing Symptoms, Self-Efficacy for Managing Emotions, and Meaning/Purpose). Descriptive statistics were obtained for sample characteristics and paired samples t tests assessed outcomes.

Participants ranged in age from 25 to 80 years (M=53.9, SD=12.3), and were predominately female (77%), White (80%), and non-Hispanic/Latinx (77%), and had moderate disability (modified Rankin Score: Md=3.0). Twenty-one (70%) had classic SPS, 7 (23%) had SPS+, 1 (3%) had cerebellar ataxia, and 1 (3%) had paraneoplastic SPS. Five (17%) declined to complete baseline measures, 3 (10%) withdrew from the group, and 2 (7%) were lost to follow-up. For the 20 completers, significant improvements and moderate effect sizes were observed for Anxiety (t=2.83, p=.01, g=0.62), Depression (t=3.39, p<.01, g=0.74), Pain Interference (t=2.81, p=.01, g=0.62), Fatigue (t=2.37, p=.03, g=0.52), and Meaning/Purpose (t=2.24, p=.04, g=0.50). A non-significant trend was observed for Cognitive Function (t=2.09, p=.05, g=0.46).