Wiser Healthcare, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia; Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia.
Wiser Healthcare, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia; Sydney Health Literacy Lab, Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 2006, Australia.
Patient Educ Couns. 2022 Mar;105(3):719-725. doi: 10.1016/j.pec.2021.05.038. Epub 2021 May 29.
To explore clinicians' and women's views and experiences with managing polycystic ovary syndrome (PCOS).
Semi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis.
Findings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women's and clinicians' expectations.
This is the first study to explore both clinicians' and women's experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition.
Clarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.
探讨临床医生和女性在多囊卵巢综合征(PCOS)管理方面的观点和经验。
对 36 名临床医生和 26 名 PCOS 女性进行半结构化访谈。临床医生通过相关专业组织的广告、滚雪球和联系澳大利亚各地的诊所招募。通过社交媒体广告招募 PCOS 女性。使用框架分析对转录的音频记录进行主题分析。
PCOS 女性和临床医生访谈的研究结果分为三个主题。女性和临床医生都经历了 1)管理 PCOS 的挑战,这些挑战通常源于不同的、广泛的表现、当前治疗方案的问题(包括有限的证据)以及管理的长期性。双方都谈到了 2)关于 PCOS 和替代治疗的在线信息,包括缺乏相关信息和广泛的错误信息。3)随访和护理的连续性,我们发现女性和临床医生的期望之间存在显著差异。
这是第一项探讨临床医生和女性在管理 PCOS 方面经验的研究,说明了管理这种异质性疾病的几个挑战。
明确和解决患者的期望,根据 PCOS 表型提供个性化的咨询和信息,并采用多学科方法,可能会减少不确定性并改善以患者为中心的护理。