A mixed-methods investigation of the role of illness perceptions in endometriosis

Endometriosis is a gynaecological condition whereby endometrial tissue grows outside the uterus. Symptoms include chronic pelvic pain, acute period-related pain and difficulty conceiving (Denny & Mann, 2007). Affected women have higher incidences of depression and anxiety than the general population (Pope et al., 2015), however the cause of this is unknown. This project aims to examine the role of illness perceptions on endometriosis related pain severity and quality of life (QoL). Illness perceptions are the cognitive representations individuals hold about their diagnosis, including beliefs of controllability and consequences of illness. These perceptions influence behavioural, social and health outcomes in several chronic conditions, however have not been researched within an endometriosis context.
No research has examined the role of illness perceptions on endometriosis related pain and QoL. Leventhal's (1992) self-regulation model theorises that cognitive representations, such as beliefs about the cause, controllability and consequences of an illness diagnosis, may shape behavioural responses and coping style. Illness perceptions are well studied in chronic illness research, and are important predictors of psychological wellbeing and functioning in fibromyalgia (van Wilgen et al., 2008), Parkinson's disease (Hurt et al., 2013) and chronic fatigue syndrome (Moss-Morris, Petrie & Weinman, 1996). In qualitative research of endometriosis, controllability and perceived consequences of a diagnosis appear to influence QoL in affected women (Jones, Jenkinson & Kennedy, 2004), indicating that illness perceptions are likely to modify psychological wellbeing. Thus, investigating the role of illness perceptions in the current context has the clear potential to facilitate understanding of the mechanisms underlying endometriosis symptomology.
This project aims to establish an understanding of the role of illness perceptions on QoL, depression, anxiety and pain severity. A longitudinal, mixed methods approach will be adopted to obtain a holistic account of the experience of women with endometriosis and the beliefs they hold about their condition. The PhD project has three key aims:
(i) Examine the trajectory of psychological symptoms in women diagnosed with endometriosis within the last year
(ii) Use a self-regulatory framework to examine the role of illness perceptions in predicting outcomes in patients at 6 and 12-month follow-up
(iii) Undertake an in-depth qualitative examination of patients' lived experiences with endometriosis
The key research question to be addressed is: what is the role of illness perceptions in predicting outcomes in women with endometriosis?