The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study
Abstract Introduction There is considerable variation in the types of symptoms experienced by people living with endometriosis, and it is unclear which symptoms impact people the most. This study aimed to identify the specific symptoms that are “most impactful” to people living with the condition. M...
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Wiley
2024-09-01
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| Series: | Acta Obstetricia et Gynecologica Scandinavica |
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| Online Access: | https://doi.org/10.1111/aogs.14927 |
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| author | Alice M. Mitchell Sarah Lensen Steven J. Kamper Helena Frawley Claudia Cheng Martin Healey K. Jane Chalmers |
| author_facet | Alice M. Mitchell Sarah Lensen Steven J. Kamper Helena Frawley Claudia Cheng Martin Healey K. Jane Chalmers |
| author_sort | Alice M. Mitchell |
| collection | DOAJ |
| description | Abstract Introduction There is considerable variation in the types of symptoms experienced by people living with endometriosis, and it is unclear which symptoms impact people the most. This study aimed to identify the specific symptoms that are “most impactful” to people living with the condition. Material and Methods Two sequential online surveys were conducted. Women aged over 18 years with a diagnosis of endometriosis were eligible to participate. Participants first provided a free‐text list of all the endometriosis symptoms they experienced (Survey 1, Australian only). Responses were condensed into a shorter list by grouping symptom types and selecting the top 20 most common and most impactful. Survey 2 (international) participants reviewed the list and selected all that they had experienced in the last 3 months, nominated one as their single “most impactful symptom”, and rated its impact on one of five randomized scale types. Results Survey 1 and Survey 2 had 195 and 983 responses, respectively. The mean age of respondents was 30.8 ± 7.9 years. There were 275 separate symptom descriptions from Survey 1, which were condensed into 104 groups, of which 25 met criteria for inclusion in Survey 2. The most commonly experienced symptoms were abdominal pain (93% of respondents), bloating (92%), and fatigue (90%), and the symptoms nominated as causing the most impact were pelvic pain (20%), abdominal pain (15%), and cramps (7%). Nearly everyone (99.7%) in Survey 2 reported experiencing at least one pain symptom. The symptoms that generated the highest impact scores were infertility (99.8/100), irregular menstrual cycles (95.3/100), and constipation (92/100). The average impact score was 87.5/100. Conclusions There was substantial variation in the symptom selected as causing the most impact, and the level of impact was high. A focus on measuring the “most impactful symptom” in future research may enable us to better capture and measure the true symptom experience. |
| format | Article |
| id | doaj-art-ff907b0ad64e430bba73fd90a273569a |
| institution | Kabale University |
| issn | 0001-6349 1600-0412 |
| language | English |
| publishDate | 2024-09-01 |
| publisher | Wiley |
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| series | Acta Obstetricia et Gynecologica Scandinavica |
| spelling | doaj-art-ff907b0ad64e430bba73fd90a273569a2025-08-20T03:30:53ZengWileyActa Obstetricia et Gynecologica Scandinavica0001-63491600-04122024-09-0110391736174410.1111/aogs.14927The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey studyAlice M. Mitchell0Sarah Lensen1Steven J. Kamper2Helena Frawley3Claudia Cheng4Martin Healey5K. Jane Chalmers6Department of Obstetrics, Gynaecology and Newborn Health, Royal Women's Hospital University of Melbourne Melbourne Victoria AustraliaDepartment of Obstetrics, Gynaecology and Newborn Health, Royal Women's Hospital University of Melbourne Melbourne Victoria AustraliaSchool of Health Sciences, University of Sydney Sydney New South Wales AustraliaSchool of Health Sciences, The University of Melbourne Melbourne Victoria AustraliaDepartment of Obstetrics, Gynaecology and Newborn Health, Royal Women's Hospital University of Melbourne Melbourne Victoria AustraliaDepartment of Obstetrics, Gynaecology and Newborn Health, Royal Women's Hospital University of Melbourne Melbourne Victoria AustraliaIIMPACT in Health Research University of South Australia Adelaide South Australia AustraliaAbstract Introduction There is considerable variation in the types of symptoms experienced by people living with endometriosis, and it is unclear which symptoms impact people the most. This study aimed to identify the specific symptoms that are “most impactful” to people living with the condition. Material and Methods Two sequential online surveys were conducted. Women aged over 18 years with a diagnosis of endometriosis were eligible to participate. Participants first provided a free‐text list of all the endometriosis symptoms they experienced (Survey 1, Australian only). Responses were condensed into a shorter list by grouping symptom types and selecting the top 20 most common and most impactful. Survey 2 (international) participants reviewed the list and selected all that they had experienced in the last 3 months, nominated one as their single “most impactful symptom”, and rated its impact on one of five randomized scale types. Results Survey 1 and Survey 2 had 195 and 983 responses, respectively. The mean age of respondents was 30.8 ± 7.9 years. There were 275 separate symptom descriptions from Survey 1, which were condensed into 104 groups, of which 25 met criteria for inclusion in Survey 2. The most commonly experienced symptoms were abdominal pain (93% of respondents), bloating (92%), and fatigue (90%), and the symptoms nominated as causing the most impact were pelvic pain (20%), abdominal pain (15%), and cramps (7%). Nearly everyone (99.7%) in Survey 2 reported experiencing at least one pain symptom. The symptoms that generated the highest impact scores were infertility (99.8/100), irregular menstrual cycles (95.3/100), and constipation (92/100). The average impact score was 87.5/100. Conclusions There was substantial variation in the symptom selected as causing the most impact, and the level of impact was high. A focus on measuring the “most impactful symptom” in future research may enable us to better capture and measure the true symptom experience.https://doi.org/10.1111/aogs.14927endometriosisimpactquestionnairesurveysymptoms |
| spellingShingle | Alice M. Mitchell Sarah Lensen Steven J. Kamper Helena Frawley Claudia Cheng Martin Healey K. Jane Chalmers The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study Acta Obstetricia et Gynecologica Scandinavica endometriosis impact questionnaire survey symptoms |
| title | The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study |
| title_full | The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study |
| title_fullStr | The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study |
| title_full_unstemmed | The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study |
| title_short | The most impactful endometriosis symptom: An international, cross‐sectional, two‐round survey study |
| title_sort | most impactful endometriosis symptom an international cross sectional two round survey study |
| topic | endometriosis impact questionnaire survey symptoms |
| url | https://doi.org/10.1111/aogs.14927 |
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