A qualitative exploration into the role of illness perceptions in endometriosis-related quality of life

Objectives Endometriosis is linked to adverse quality of life (QoL) outcomes. In the absence of effective treatment for endometriosis-related symptoms, supporting the QoL of those experiencing endometriosis is crucial. Illness perception (IP) interventions have prompted modest increases in QoL in several chronic conditions, yet IPs have not been comprehensively studied in relation to endometriosis. It is, therefore, necessary to examine the IPs held by individuals experiencing endometriosis to establish whether IP-based interventions might be useful in supporting QoL in this population. This research aims to gain an understanding of the IPs held by people experiencing endometriosis and their impact on QoL. Design Qualitative using one-to-one online semi-structured interviews. Methods Thirty individuals with endometriosis participated. Interviews sought to gain an understanding of participants’ experiences and perceptions in relation to living with endometriosis. Reflexive thematic analysis was used to develop themes. Results Three major themes were developed: (1) a life disrupted; (2) lost and fragmented sense of self; and (3) complex emotional responses. Largely negative IPs were held by individuals living with the condition which, along with endometriosis-specific symptoms and reduced functioning, fuelled fears for the future and reduced QoL. Conclusions Endometriosis-specific symptoms fuelled adverse QoL outcomes directly, and indirectly through moulding IPs. The disruption to the life trajectory associated with experiencing the condition as well as perceptions of control had a major impact on participants’ wellbeing, self-concept, and the varied emotional responses associated with experiencing endometriosis. IP-based interventions may support the wellbeing of those experiencing endometriosis whilst effective treatment is sought. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was funded by the Economic and Social Research Council. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics committee of the University of Strathclyde, Glasgow, gave ethical approval for this work I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Research data are not shared due to privacy and ethical concerns.