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

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Abstract

Endometriosis is related to adverse quality of life (QoL) and wellbeing outcomes. The way in which endometriosis is perceived by individuals experiencing the condition has not been directly considered, yet illness perceptions (IPs) are predictors of QoL in several chronic conditions. This research aims to gain an understanding of the IPs held by individuals experiencing endometriosis and their impact on QoL. Semi-structured, one-to-one interviews with 30 UK-based participants sought to gain an understanding of participant experiences and perceptions linked to endometriosis. Three themes were constructed through reflexive thematic analysis: a life disrupted; lost sense of self; and complex emotional responses. Largely negative IPs were held by individuals experiencing endometriosis which, along with endometriosis-specific symptoms, fuelled fears for the future and reduced QoL. IP-based interventions may support the QoL of those experiencing endometriosis whilst effective treatment is sought.

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Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.

Kelechi E. Nnoaham, Lone Hummelshoj, Premila Webster … (2011)

To assess the impact of endometriosis on health-related quality of life (HRQoL) and work productivity. Multicenter cross-sectional study with prospective recruitment. Sixteen clinical centers in ten countries. A total of 1,418 premenopausal women, aged 18-45 years, without a previous surgical diagnosis of endometriosis, having laparoscopy to investigate symptoms or to be sterilized. None. Diagnostic delay, HRQoL, and work productivity. There was a delay of 6.7 years, principally in primary care, between onset of symptoms and a surgical diagnosis of endometriosis, which was longer in centers where women received predominantly state-funded health care (8.3 vs. 5.5 years). Delay was positively associated with the number of pelvic symptoms (chronic pelvic pain, dysmenorrhoea, dyspareunia, and heavy periods) and a higher body mass index. Physical HRQoL was significantly reduced in affected women compared with those with similar symptoms and no endometriosis. Each affected woman lost on average 10.8 hours (SD 12.2) of work weekly, mainly owing to reduced effectiveness while working. Loss of work productivity translated into significant costs per woman/week, from US$4 in Nigeria to US$456 in Italy. Endometriosis impairs HRQoL and work productivity across countries and ethnicities, yet women continue to experience diagnostic delays in primary care. A higher index of suspicion is needed to expedite specialist assessment of symptomatic women. Future research should seek to clarify pain mechanisms in relation to endometriosis severity. Copyright © 2011 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.

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The Revised Illness Perception Questionnaire (IPQ-R)

Rona Moss-Morris, John A Weinman, Keith Petrie … (2002)

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The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management.

Howard Leventhal, L Alison Phillips, Edith Burns (2016)

The Common-Sense Model of Self-Regulation (the "Common-Sense Model", CSM) is a widely used theoretical framework that explicates the processes by which patients become aware of a health threat, navigate affective responses to the threat, formulate perceptions of the threat and potential treatment actions, create action plans for addressing the threat, and integrate continuous feedback on action plan efficacy and threat-progression. A description of key aspects of the CSM's history-over 50 years of research and theoretical development-makes clear the model's dynamic underpinnings, characteristics, and assumptions. The current article provides this historical narrative and uses that narrative to highlight dynamic aspects of the model that are often not evaluated or utilized in contemporary CSM-based research. We provide suggestions for research advances that can more fully utilize these dynamic aspects of the CSM and have the potential to further advance the CSM's contribution to medical practice and patients' self-management of illness.

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Author and article information

Journal

Journal ID (nlm-ta): J Health Psychol

Journal ID (iso-abbrev): J Health Psychol

Journal ID (publisher-id): HPQ

Journal ID (hwp): sphpq

Title: Journal of Health Psychology

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Print): 1359-1053

ISSN (Electronic): 1461-7277

Publication date (Electronic): 26 June 2023

Publication date (Print): October 2023

Volume: 28

Issue: 12

Pages: 1157-1171

Affiliations

[1-13591053231183230]University of Strathclyde, UK

Author notes

[*]Chloe Moore, School of Psychological Sciences and Health, University of Strathclyde, 40 George Street, Glasgow, G1 1QE, Scotland, UK. Email: chloe.moore.100@ 123456strath.ac.uk

Author information

Chloe Moore https://orcid.org/0000-0001-7230-2153

Nicola Cogan https://orcid.org/0000-0003-0861-5133

Article

Publisher ID: 10.1177_13591053231183230

DOI: 10.1177/13591053231183230

PMC ID: 10571435

PubMed ID: 37358039

SO-VID: 37b4fd52-36c0-43a6-89bf-9b7eba044dd5

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This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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Funding

Funded by: Economic and Social Research Council, FundRef https://doi.org/10.13039/501100000269;

Award ID: 2434262

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ScienceOpen disciplines: Clinical Psychology & Psychiatry

Keywords: endometriosis,illness perceptions,qualitative,quality-of-life,wellbeing

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ScienceOpen disciplines: Clinical Psychology & Psychiatry

Keywords: endometriosis, illness perceptions, qualitative, quality-of-life, wellbeing

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

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Asian Journal of Quality of Life (AjQoL)

Most cited references 41

Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.

The Revised Illness Perception Questionnaire (IPQ-R)

The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management.

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