The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain

Guan, Yanfen; Nguyen, Allison Martin; Wratten, Samantha; Randhawa, Sharan; Weaver, Jessica; Arbelaez, Felipe; Panter, Charlotte

doi:10.1186/s41687-021-00409-8

Cited by 5 publications

(4 citation statements)

References 35 publications

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“…Prior qualitative research studies using concept-elicitation interviews in the US and Europe reported the most prevalent endometriosis symptoms as pelvic pain (or cramps), vaginal bleeding, dyspareunia, dysmenorrhea, and NMPP. 9,15,16 Other endometriosis symptoms identified in the present study, such as bloating, back pain, nausea, abdominal pain, fatigue, headaches, gastrointestinal distress, and lengthy/irregular cycles, are concordant with endometriosis symptoms reported in the literature. 9,[15][16][17][18] Endometriosis burden arises not only from symptoms of the disease (eg pain) but also accumulatively from the consequences of these symptoms.…”

Section: Discussionsupporting

confidence: 89%

“…9,15,16 Other endometriosis symptoms identified in the present study, such as bloating, back pain, nausea, abdominal pain, fatigue, headaches, gastrointestinal distress, and lengthy/irregular cycles, are concordant with endometriosis symptoms reported in the literature. 9,[15][16][17][18] Endometriosis burden arises not only from symptoms of the disease (eg pain) but also accumulatively from the consequences of these symptoms. The impact of endometriosis symptoms on women's lives as reported in the present study were generally consistent with impacts reported in other qualitative research studies, and included impacts on daily activities, appearance, emotional functioning, financial impact, physical activity, sex-related impacts, sleep, social activities, and work/school-related impacts.…”

Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 88%

“…The impact of endometriosis symptoms on women’s lives as reported in the present study were generally consistent with impacts reported in other qualitative research studies, and included impacts on daily activities, appearance, emotional functioning, financial impact, physical activity, sex-related impacts, sleep, social activities, and work/school-related impacts. 8 , 9 , 15 , 19 , 20 A prior study focusing on endometriosis-related pain identified that pain symptoms were the main cause of impairments in physical activity, work and study, social and leisure activities, household activities, sleep, and sexual activity. 16 In the present study, fertility was also identified as an impact; however, fertility reporting was subject to potential selection bias from the inclusion criteria of the SPIRIT trials, which specified that women were not to get pregnant over the study period.…”

Section: Discussionmentioning

confidence: 99%

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Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Hunsche¹,

Gauthier²,

Witherspoon³

et al. 2023

IJWH

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Objective This interview study sought to capture patients’ experiences and perceptions of endometriosis symptoms and their impacts on daily life, as described by women in their own words. Using open-ended questions and a concept-elicitation approach, this study assessed the signs and symptoms of endometriosis and their impacts on different aspects of quality of life, including daily activities, functioning, and well-being. Materials and Methods This interview study included US women with moderate-to-severe endometriosis-associated pain who completed one of two Phase 3, randomized, double-blind, placebo-controlled trials (SPIRIT 1 or SPIRIT 2; ClinicalTrials.gov identifiers: NCT03204318, NCT03204331). Interviews were conducted via a web/Internet-based video platform or telephone by trained interviewers, using open-ended questions in a concept-elicitation approach, and probes as needed to obtain additional feedback on the burden of endometriosis. Qualitative data from the interviews were analyzed, and emerging concepts were coded by independent coders. Concept saturation was evaluated to determine if all endometriosis-related symptoms and impacts had been described by the sample of women interviewed. Results Forty women participated in this study. In total, 18 unique symptoms of endometriosis emerged from the interviews; pelvic pain (92.5%), dyspareunia (80.0%), and heavy bleeding (75.0%) were the most commonly reported endometriosis symptoms. A total of 33 unique impacts of endometriosis symptoms were identified across 11 concepts: physical impacts, impacts on activities of daily living, social impacts, sleep impacts, emotional impacts, appearance impacts, financial impacts, sex-related impacts, work/school-related impacts, fertility impacts, and cognitive impacts. Concept saturation was achieved for both symptoms and impacts of endometriosis. Conclusion This interview study provides substantive qualitative data on the burden of endometriosis, from the perspective of affected women in the US. The findings demonstrate the debilitating effect of endometriosis symptoms, which limit and adversely impact women’s daily lives.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Hunsche¹,

Gauthier²,

Witherspoon³

et al. 2023

IJWH

View full text Add to dashboard Cite

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Measurement of changes to the menstrual cycle: A transdisciplinary systematic review evaluating measure quality and utility for clinical trials

Mackenzie,

Chung,

Hoppes

et al. 2024

Preprint

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Despite the importance of menstruation and the menstrual cycle to health, human rights, and sociocultural and economic wellbeing, the study of menstrual health suffers from a lack of funding, and research remains fractured across many disciplines. We sought to systematically review approaches to measure four aspects of changes to the menstrual cycle—bleeding, blood, pain, and perceptions— caused by any source and used in any field. We searched MEDLINE, Embase, and four instrument databases and included peer-reviewed articles published between 2006 and 2023 that reported on the development or validation of instruments assessing menstrual changes using quantitative or mixed-methods methodology. We evaluated instruments on measure quality and utility for clinical trials. From a total of 8,490 articles, 8,316 were excluded (i.e., 376 duplicates, 7,704 during title/abstract screening, and 236 during full text review), yielding 94 instruments from 174 included articles. Almost half of articles were from the United States or United Kingdom and over half of instruments were only in English, Spanish, French, or Portuguese. Most instruments measured bleeding, pain, or perceptions, but few assessed blood. Nearly 60% of instruments were developed for populations with menstrual or gynecologic disorders or symptoms. Most instruments had fair or good measure quality and/or clinical trial utility; however, most instruments lacked evidence on responsiveness, question sensitivity and/or transferability, and only three instruments had good scores of both quality and utility. Although we took a novel, broad, and transdisciplinary approach, our systematic review found important gaps in the literature and instrument landscape and a need to examine the menstrual cycle in a more comprehensive, inclusive, and standardized way. Our findings can inform the development of new or modified instruments, which—if used across the many fields that study menstrual health—can contribute to a more systemic and holistic understanding of menstruation and the menstrual cycle.

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A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis

de C Williams,

McGrigor

2024

BMC Women's Health

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Background Endometriosis is a widespread problem in women of reproductive age, causing cyclical and non-cyclical pain in the pelvis and elsewhere, and associated with fatigue, fertility problems, and other symptoms. As a chronic pain problem, psychological variables are important in adjustment and quality of life, but have not been systematically studied. Methods A systematic search of multiple databases was conducted to obtain surveys and qualitative studies of women’s experience of pain from endometriosis. Surveys were combined narratively; qualitative studies were combined by thematic synthesis, and the latter rated for methodological quality. Results Over 2000 records were screened on title and abstract, and provided 22 surveys and 33 qualitative studies from which accounts could be extracted of the psychological components of pain in endometriosis. Surveys mostly addressed quality of life in endometriosis, with poorer quality of life associated with higher levels of pain and of distress, but few referred to coherent psychological models. Qualitative studies focused rather on women’s experience of living with endometriosis, including trajectories of diagnosis and treatment, with a few addressing meaning and identity. Thematic synthesis provided 10 themes, under the groupings of internal experience of endometriosis (impact on body, emotions, and life); interface with the external world (through self-regulation and social regulation); effects on interpersonal and social life, and encounters with medical care. Conclusions The psychological components of pain from endometriosis only partly corresponded with standard psychological models of pain, derived from musculoskeletal pain studies, with fewer fears about physical integrity and more about difficulties of managing pain and other symptoms in social settings, including work. Better understanding of the particular psychological threats of endometriosis, and integration of this understanding into medical care with opportunities for psychologically-based pain management, would substantially improve the experience and quality of life of women with painful endometriosis.

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The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain

Cited by 5 publications

References 35 publications

Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Endometriosis Symptoms and Their Impacts on the Daily Lives of US Women: Results from an Interview Study

Measurement of changes to the menstrual cycle: A transdisciplinary systematic review evaluating measure quality and utility for clinical trials

A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis

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