NICM Health Research Institute, Western Sydney University, Locked Bag 1797, Penrith, NSW, 2751, Australia.
Graduate Research School, and NICM Health Research Institute, Western Sydney University, Locked Bag 1797, Penrith, NSW, 2751, Australia.
BMC Womens Health. 2020 Oct 2;20(1):221. doi: 10.1186/s12905-020-01090-7.
Polycystic Ovary Syndrome (PCOS) is a common female reproductive disorder with multiple manifestations. There are relatively few qualitative studies exploring the nature of living with PCOS despite its high prevalence. Qualitative research can enhance clinical practice via the provision of patient insights into the experience of living with their condition.
We conducted two focus groups and three semi-structured interviews of Australian overweight/obese women with PCOS aged 18-46 years between March and April 2017 who were recruited through social media advertising. Interviews and focus groups were audio recorded and transcribed verbatim. Thematic analysis was applied to the data, using the method of constant comparison.
Ten women contributed data from two focus groups and two semi-structured interviews. Five themes emerged from the data: complexity of the condition with its multiple manifestations, difficulties with delayed diagnosis and lack of information provided after diagnosis, negative experiences on social media and online forums and the need for support, frustration over lack of a "cure"; and the impact of symptoms and concern about long-term sequelae.
Living with PCOS appears to generate a significant degree of anxiety about the future, dissatisfaction with current treatment models, and loss of feminine identity. Gaps in timely diagnosis, information and support provision need to be addressed. This includes supporting weight management as a fundamental concern for women with PCOS.
多囊卵巢综合征（PCOS）是一种常见的女性生殖系统疾病，具有多种表现。尽管 PCOS 发病率很高，但很少有定性研究探讨其生活本质。定性研究可以通过提供患者对自身病情的体验洞察，从而增强临床实践。
我们于 2017 年 3 月至 4 月期间，通过社交媒体广告招募了 18-46 岁超重/肥胖的澳大利亚 PCOS 女性，进行了两次焦点小组讨论和三次半结构化访谈。访谈和焦点小组均进行了录音，并逐字转录。使用恒定性比较方法对数据进行了主题分析。
10 位女性提供了来自两个焦点小组和两个半结构化访谈的数据。数据中出现了五个主题：病情复杂，表现多样；诊断延迟，诊断后缺乏信息；社交媒体和在线论坛上的负面体验，需要支持；对缺乏“治愈方法”感到沮丧；以及症状的影响和对长期后遗症的担忧。
PCOS 患者的生活似乎产生了对未来的高度焦虑、对当前治疗模式的不满以及女性身份认同的丧失。需要解决及时诊断、信息和支持提供方面的差距。这包括支持体重管理，这是 PCOS 患者的一个基本关注点。
