Evaluation of the need for the integration of a nurse specialist (EndoNurse) into the interdisciplinary care of patients with endometriosis: Cross-sectional study

IF 3.1 Q1 NURSING

International Journal of Nursing Studies Advances Pub Date : 2025-09-18 DOI:10.1016/j.ijnsa.2025.100425

Stefan Lukac , Viktoria Maria Kässens , Anne Barzel , Tabea Kloss , Ina Mayer , Wolfgang Janni , Katharina Hancke , Davut Dayan

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Abstract

Background

Like other chronic diseases, endometriosis also requires long-term, individualized and multidisciplinary care. The integration of specialized nursing care has already been proven in other chronic diseases, but it is unclear whether and in which areas the integration of an endometriosis nurse specialist (EndoNurse) would be welcomed by patients with endometriosis.

Objective

The aim of this study is to identify the need and acceptance of an integration of a nurse specialist into the care of patients with endometriosis and possible counselling topics.

Design

Cross-sectional study in Germany.

Setting and Participants

844 German-speaking patients with diagnosed endometriosis completed an online survey distributed via official platforms and social media.

Methods

The current satisfaction and needs of patients with endometriosis were evaluated in five dimensions (Physical and psychological symptoms, therapy, lifestyle, sexuality, partnership, fertility, treatment wishes) similar to the Endometriosis Impact Questionnaire. In addition, questions regarding the need for optimalization along with acceptance and preferred areas of care by an EndoNurse were included. The evaluation was based on the 5-point Likert-scale.

Results

844 participants were included in the final analysis. Only 138 (16.4 %) of them described their current care as good or very good. Fewer than one in five patients felt well or very well informed concerning the topics symptoms (200; 23.7 %), therapy (209; 24.8 %), sexuality and family planning (124; 14.7 %) as well as sport and nutrition (111; 13.1 %). 774 (91.7 %) of the participants would accept an integration of an EndoNurse in their treatment, particularly regarding the following topics: pain management (594; 70.4 %), nutrition (570; 67.5 %), sports and physiotherapy (567; 67.2 %), coping with everyday life (558; 65.8 %) and therapy options (547; 64.8 %). 474 (56.2 %) of the patients named physicians as their preferred source of information. Specially trained medical staff (EndoNurse) followed with 159 (18.8 %) votes, ahead of the internet (88; 10.4 %), self-help groups (41; 4.9 %), apps (37; 4.4 %) and others.

Conclusions

Our study demonstrates a significant need for improvement in supportive endometriosis care. The involvement of a specialised nurse, EndoNurse, into care of patients with endometriosis is a concept that is useful and desirable for those affected in all evaluated areas.

Registration

The study was approved by the Ethical Committee of the University of Ulm Nr. 364/23 and registered in the German Register of Clinical Studies under Nr. DRKS00033078.

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评估将专科护士（EndoNurse）纳入子宫内膜异位症患者跨学科护理的需要：横断面研究

与其他慢性疾病一样，子宫内膜异位症也需要长期、个体化和多学科的治疗。专业护理的整合已经在其他慢性疾病中得到证实，但目前尚不清楚子宫内膜异位症护士专家（EndoNurse）的整合是否以及在哪些领域会受到子宫内膜异位症患者的欢迎。目的本研究的目的是确定需要和接受的整合护士专家到照顾患者子宫内膜异位症和可能的咨询主题。设计德国横断面研究。844名诊断为子宫内膜异位症的德语患者完成了一项通过官方平台和社交媒体分发的在线调查。方法采用类似于《子宫内膜异位症影响问卷》的方法，从生理和心理症状、治疗方法、生活方式、性行为、伴侣关系、生育能力、治疗意愿五个维度对子宫内膜异位症患者的现状满意度和需求进行评估。此外，关于需要优化的问题以及EndoNurse的接受度和首选护理领域也包括在内。评估是基于5分李克特量表。结果共纳入844例受试者。只有138人（16.4%）认为他们目前的护理良好或非常好。不到五分之一的患者对症状（200人；23.7%）、治疗（209人；24.8%）、性行为和计划生育（124人；14.7%）以及运动和营养（111人；13.1%）等主题感到良好或非常了解。774名（91.7%）参与者接受EndoNurse的整合治疗，特别是关于以下主题：疼痛管理（594名；70.4%），营养（570名；67.5%），运动和物理治疗（567名；67.2%），应对日常生活（558名；65.8%）和治疗方案（547名；64.8%）。474名（56.2%）患者将医生列为首选信息来源。经过专门培训的医务人员（EndoNurse）以159票（18.8%）紧随其后，其次是互联网（88票，10.4%）、自助团体（41票，4.9%）、应用程序（37票，4.4%）等。结论我们的研究表明，子宫内膜异位症的支持性护理需要显著改善。专业护士（EndoNurse）参与子宫内膜异位症患者的护理是一个有用的概念，对于所有评估领域的患者都是可取的。该研究已获得乌尔姆大学伦理委员会批准，编号为364/23，并在德国临床研究登记处注册，编号为DRKS00033078。

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