The relationship of illness, psychosocial, and cognitive factors to perceived uncertainty among women with endometriosis

Abstract

The primary purpose of this study was to explore illness, psychosocial, and cognitive characteristics of women with endometriosis and identify predictors of uncertainty among a convenience sample of 298 women attending an educational program on the disease. A descriptive, cross-sectional design was used. Analysis of an author-developed survey revealed that women experienced multiple symptoms; minimal success from treatment; and relatively infrequent psychological distress and disrupted social support. Participants tended to be undecided about the adequacy of their knowledge about endometriosis and had a high preference for information about the disease as measured by the author-developed instrument and the Krantz Health Opinion Survey. Uncertainty, measured by the Mishel Uncertainty in Illness Scale-Community Form, was relatively high (M=65.03, (SD) = 15.90) when compared to previously studied individuals with chronic illness. (For example, reported mean scores were in the 40s for cancer patients and post myocardial infarction patients.) Principal components factor analysis with varimax rotation was used to determine underlying factors within the illness, psychosocial, and cognitive domains. Uncertainty was negatively correlated with age (r=-.18, p<.01), and perceived knowledge (r=-.53, p<.001), and positively correlated with the factors of psychological distress and perceived nonreproductive symptoms (r=.46, p<.0001), and the treatment factor of medications taken and perceived hormonal/surgical treatment success (r=.30, p<.0001). Two factors (psychological distress and perceived nonreproductive symptom effect) and the variables perceived knowledge and subject age predicted 28% of the variance in perceived uncertainty (F (4, 196) = 19.19, p<.0001), for the stepwise equation). This study represents the first exploration of women's experiences with endometriosis and provides empirical evidence for the complexity of the disease and its treatment. Further research is needed to determine other variables relevant to women's experience of endometriosis-related uncertainty. Findings suggest the need for information, support, and intervention to assist women in making informed treatment choices.