# Evaluation and perspectives of the OrphanAnesthesia project – a survey among anesthesiologists in Germany

## TL;DR

This study evaluates the OrphanAnesthesia project, a resource for anesthetists caring for patients with rare diseases, and identifies ways to improve its use and impact.

## Contribution

The study provides insights into the current usage and future needs of anesthetists regarding the OrphanAnesthesia platform in Germany.

## Key findings

- 81% of German anesthetists are familiar with OrphanAnesthesia, and 93% of users find the recommendations useful.
- 72% of respondents believe a mobile app would increase platform use, and 91% think it could improve patient safety.
- Only 22% of respondents were familiar with the 2022 emergency cards, indicating a need for greater awareness.

## Abstract

Patients with rare diseases face unique risks during anesthesia due to the multisystemic nature of their conditions and the limited availability of evidence-based guidance. In most cases, perioperative guidelines tailored to either the underlying disease or anesthetic management are lacking, leaving anesthetists with considerable uncertainty in clinical decision-making. The OrphanAnesthesia project, initiated in 2005 by the Scientific Working Group on Pediatric Anesthesia of the German Society for Anesthesiology and Intensive Care Medicine, addresses this gap by providing structured, peer-reviewed anesthesia recommendations for rare diseases. This study aims to assess current status, clinical relevance, and future perspectives of the OrphanAnesthesia platform among anesthetists in Germany.

A cross-sectional online survey was conducted among members of the German Society for Anesthesiology and Intensive Care Medicine and the German Association of Anesthetists from February to March 2025. The anonymous questionnaire included 17 items covering awareness, accessibility, frequency of use, evaluation of content, and future needs related to the OrphanAnesthesia platform. Descriptive statistics were used to analyze the data.

Out of 2,098 responses, 1,921 fully completed surveys were included in the final analysis (response rate: 8.1%). A total of 81% of respondents were familiar with OrphanAnesthesia; of these, over half accessed the platform five or more times annually. The recommendations were rated as useful by 93% of users, and 75% considered them to be up to date. 22% of all respondents were already familiar with the emergency cards introduced in 2022, and 83% of those rated them as ‘good’ or ‘very good’. 90% of respondents supported the development of a dedicated anesthesia problem card for patients with rare diseases. 72% indicated that a mobile app would increase their use of the platform, and 91% believed it could improve patient safety.

The OrphanAnesthesia project is well known among German anesthetists and is considered a valuable resource in the perioperative care of patients with rare diseases. To further enhance its impact, targeted improvements should include greater awareness of existing tools (e.g., emergency cards), the development of individualized anesthesia problem cards, and mobile solutions. These efforts may support evidence-based, safer and more individualized anesthesia care in patients with rare diseases.

The online version contains supplementary material available at 10.1186/s12871-026-03665-7.