A mixed-methods investigation of coping, adaptation and health-related quality of life in individuals experiencing endometriosis

Moore, Chloe and Cogan, Nicola and Williams, Lynn (2024) A mixed-methods investigation of coping, adaptation and health-related quality of life in individuals experiencing endometriosis. Other. medRxiv, Cold Spring Harbor. (https://doi.org/10.1101/2024.02.19.24303022)

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Abstract

Objectives Endometriosis is associated with reduced health-related quality of life (HRQoL). Coping has been linked to HRQoL in this population but longitudinal research to establish the impact of coping on HRQoL over time is lacking. Additionally, limited research has examined coping and adaptation to endometriosis from an in-depth qualitative or mixed-methods perspective. Therefore, adopting a mixed-methods approach, the current research aimed to investigate how individuals experiencing endometriosis coped and adapted to their condition, and the extent to which coping predicted HRQoL over time.Design A sequential, mixed-methods design incorporating a two-wave longitudinal survey and semi-structured interviews.Methods 408 UK-based participants diagnosed with endometriosis completed the baseline survey, measuring demographics, clinical factors, and coping with 283 completing the follow-up survey assessing HRQoL a year later. Data was analysed through hierarchical regression analysis. Meanwhile, 30 semi-structured interviews were conducted and analysed using reflexive thematic analysis. Findings were integrated by considering points of convergence, divergence, and complementarity between the datasets.Results Analysis of the quantitative data indicated an enduring impact of coping on HRQoL. Avoidant strategies and endometriosis-related information-seeking predicted reduced HRQoL, whilst trust in medical care exerted a protective function. Three themes were constructed from the qualitative data: disconnection from the body; balancing boundaries and self-care; and empowered adaptation. Integration of the datasets emphasised the significant impact of coping on HRQoL and wellbeing, revealing avoidance and positive adaptation as prominently employed coping strategies.Conclusions The results position coping as an important therapeutic target in endometriosis care, particularly through fostering empowerment and adaptation to support HRQoL.Competing Interest StatementThe authors have declared no competing interest.Funding StatementThis study was funded by a Scottish Graduate School for Social Science Economic and Social Research Council Studentship award (Project Reference: ES/P000681/1).Author DeclarationsI confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.YesThe details of the IRB/oversight body that provided approval or exemption for the research described are given below:The ethics committee of the University of Strathclyde gave ethical approval for this work (ethics code: UEC21/40)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.YesI 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).YesI have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.YesThe data that support the findings of this study are not available due to privacy and ethical restrictions.

ORCID iDs

Moore, Chloe, Cogan, Nicola ORCID logoORCID: https://orcid.org/0000-0003-0861-5133 and Williams, Lynn ORCID logoORCID: https://orcid.org/0000-0003-2735-9219;
CORE (COnnecting REpositories)