Pain, emotional distress, and fear of recurrence or progression in people with endometriosis: a network approach

Abstract Pain is a common debilitating symptom reported in people with endometriosis. Yet, we do not have a good understanding of factors that may contribute to higher pain and worse psychosocial outcomes in this population. One key construct linked to higher pain and distress in people with endometriosis is Fear of disease Recurrence or Progression (FORP). Accordingly, in the context of endometriosis, we aimed to identify the prevalence of severe FORP; test whether theoretical constructs from models of fear of cancer recurrence (interpretation bias, metacognitive beliefs, existential concerns) relate to FORP; and better understand the nature of relationships between FORP, theoretical and emotional distress, and pain-related constructs. Participants with a confirmed (n = 274) or provisional (n = 43) diagnosis of endometriosis were recruited through Endometriosis Australia. Participants completed a cross-sectional online survey assessing relevant constructs. We conducted bivariate correlations and network analyses to test for relationships between key constructs. Nearly 85% of participants reported severe levels of FORP. We found that people with greater existential concerns and more unhelpful metacognitive beliefs but not stronger interpretation bias reported greater FORP. However, only existential concerns contributed independent variance in FORP. We also found that individuals with heightened FORP reported greater physical pain and poorer overall well-being. These results suggest that FORP is common and important. Furthermore, metacognitive beliefs and existential concerns were identified as important factors. Testing whether these factors are potentially modifiable intervention targets through longitudinal and intervention studies could ultimately lead to reductions in the impact of endometriosis-associated pain.