Department of Obstetrics, Gynaecology and Newborn Health, Royal Women's Hospital, University of Melbourne, Melbourne, Victoria, Australia.
School of Health Sciences, University of Sydney, Sydney, New South Wales, Australia.
Acta Obstet Gynecol Scand. 2024 Sep;103(9):1736-1744. doi: 10.1111/aogs.14927. Epub 2024 Jul 23.
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.
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.
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.
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.
患有子宫内膜异位症的人所经历的症状类型差异很大，目前尚不清楚哪些症状对他们的影响最大。本研究旨在确定对患有这种疾病的人“最具影响力”的特定症状。
进行了两项连续的在线调查。年龄在 18 岁以上且被诊断患有子宫内膜异位症的女性有资格参加。参与者首先提供了他们所经历的所有子宫内膜异位症症状的自由文本列表（澳大利亚仅进行了调查 1）。通过将症状类型分组并选择前 20 种最常见和最具影响力的症状，将这些反应压缩成一个较短的列表。调查 2（国际）参与者查看了该列表，并选择了他们在过去 3 个月中经历过的所有症状，提名一个作为他们的单一“最具影响力的症状”，并根据五个随机量表类型之一对其影响进行评分。
调查 1 和调查 2 分别有 195 名和 983 名参与者。受访者的平均年龄为 30.8±7.9 岁。调查 1 有 275 种单独的症状描述，将其压缩成 104 组，其中 25 组符合纳入调查 2 的标准。最常见的症状是腹痛（93%的受访者）、腹胀（92%）和疲劳（90%），而被提名造成最具影响力的症状是盆腔痛（20%）、腹痛（15%）和痉挛（7%）。调查 2 中的几乎所有人（99.7%）都报告至少经历过一种疼痛症状。生成最高影响评分的症状是不孕（99.8/100）、月经周期不规律（95.3/100）和便秘（92/100）。平均影响得分为 87.5/100。
作为最具影响力的症状的选择存在很大差异，而且影响程度很高。在未来的研究中关注衡量“最具影响力的症状”可能使我们能够更好地捕捉和衡量真实的症状体验。
