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

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.