Feeling Good Despite EDS: The Effects of a 5-Week Online Positive Psychology Programme for Ehlers–Danlos-Syndromes Patients

Abstract

Ehlers-Danlos-Syndromes (EDS) is a group of hereditary, chronic and potentially disabling conditions. Few studies have tested the effects of psychological interventions to increase well-being in this population. We hypothesized that Positive Psychology Interventions (PPI), first applied to healthy and mentally ill subjects, can also be useful for people with somatic conditions and conducted a study to evaluate the efficacy of a 5-week online PPI designed to improve well-being in EDS patients. A sample of 132 EDS patients were allocated to three groups: assigned PPI, self-selected PPI, and waitlist control-group (WLC). Measures of positive and negative affect, pain disability, fatigue, and life satisfaction were administered before program start, 6 weeks later, and 1 month later. Satisfaction with the program was also evaluated. The results revealed that participants in the self-selected PPI-group, but not in the assigned PPI group, reported significantly lower levels of fatigue and higher levels of positive affect and life satisfaction compared to WLC after 6 weeks. There were no effects on negative affect and pain disability measures. Finally, 77% of the participants were satisfied or very satisfied with the program. These findings confirm and extend previous research by showing the efficacy of PPI for people with chronic illness under the condition that individuals can choose the program content. From a healthcare perspective, online PPIs could complement treatments aimed at symptom reduction and increase well-being in patients with EDS.