Fallon Lynda, Lau Annie Y S, Ciccia Donna, Duckworth Tanya Jane, Pereira Chantelle, Kopp Emily, Perica Valentina, Sherman Kerry A
School of Psychological Sciences, Macquarie University, Sydney, Australia.
Lifespan Health and Wellbeing Research Centre, Sydney, Australia.
Health Psychol Behav Med. 2024 Aug 1;12(1):2383469. doi: 10.1080/21642850.2024.2383469. eCollection 2024.
Endometriosis, a systemic chronic inflammatory condition which has no cure, has a high symptom burden that can negatively impact every facet of life. Given the absence of a gold-standard treatment, the best symptom management regimen in endometriosis is heavily reliant on a patient's values and preferences, making shared decision-making (SDM) vital. However, a comprehensive patient decision aid (PtDA) intervention that could facilitate patient decision-making and promote SDM is lacking in endometriosis, and there is little research on the decisional support needs of individuals with this condition. This qualitative study aimed to explore healthcare professional (HP) perspectives of their clients' decisional support needs when choosing treatments to manage endometriosis symptoms, with a view to evaluating the need for a PtDA.
Australian HPs identified as specialising in endometriosis care ( = 13) were invited to participate in a short interview over the Internet by phone. Questions focussed on perceived facilitators and challenges of decision-making when choosing treatments for endometriosis. Transcribed qualitative data were thematically analysed and verified by multiple coders, using the template approach.
Four themes were identified: (1) Identifying and setting priorities; (2) HPs' lack of time and perceived lack of knowledge; (3) Patient-centred care and SDM, including patient capacity; and (4) Decision-making blinded by hope. This is the first known study to explore HPs' perspectives on patient decision-making challenges in endometriosis.
Findings draw attention to the difficulties people with endometriosis experience when assessing and choosing treatments, highlighting the need for a comprehensive PtDA intervention to support this decision-making.
子宫内膜异位症是一种无法治愈的全身性慢性炎症性疾病，症状负担较重，会对生活的各个方面产生负面影响。由于缺乏金标准治疗方法，子宫内膜异位症的最佳症状管理方案在很大程度上依赖于患者的价值观和偏好，这使得共同决策（SDM）至关重要。然而，子宫内膜异位症缺乏一种能够促进患者决策并推动共同决策的全面患者决策辅助工具（PtDA）干预措施，并且对于患有这种疾病的个体的决策支持需求的研究也很少。这项定性研究旨在探讨医疗保健专业人员（HP）对于其客户在选择治疗方法以管理子宫内膜异位症症状时的决策支持需求的看法，以期评估对患者决策辅助工具的需求。
邀请了13名被确定为专门从事子宫内膜异位症护理的澳大利亚医疗保健专业人员通过电话在互联网上参加简短访谈。问题集中在为子宫内膜异位症选择治疗方法时决策的感知促进因素和挑战。使用模板方法对转录的定性数据进行主题分析，并由多名编码员进行验证。
确定了四个主题：（1）确定并设定优先级；（2）医疗保健专业人员时间不足且感知知识匮乏；（3）以患者为中心的护理和共同决策，包括患者能力；（4）被希望蒙蔽的决策。这是已知的第一项探索医疗保健专业人员对子宫内膜异位症患者决策挑战看法的研究。
研究结果提请人们注意子宫内膜异位症患者在评估和选择治疗方法时所面临的困难，强调需要一种全面的患者决策辅助工具干预措施来支持这一决策过程。
