Sedation of Persons With Intellectual Disability and Multiple Disabilities

A Single-Center, Retrospective Evaluation of Clinical Cases

Approximately 500 000–1 million persons with intellectual disability are living in Germany (1). They are at increased risk for physical and mental disorders, and their life expectancy is about 20 years less than that of the general population (2, 3). Many of these persons are additionally affected by substantial physical disabilities, which underlines the great need for support in this group. People with intellectual disability are commonly unable to verbalize or articulate their problems, which crucially hampers a targeted diagnosis on the basis of the medical history alone. A further repeatedly found challenge lies in the fact that many of those affected are not able to cooperate with medical examinations and interventions. The diagnosis is then possible only under sedation (4).

A lack of specialist knowledge, insufficient time resources, and unsuitable infrastructural conditions additionally make medical care for such persons difficult. The standard healthcare system is often not equal to their therapeutic needs (5). In order to improve healthcare provision, Medical Centers for Adults with Disabilities (MZEB) have been set up since 2015. We present the first detailed analysis of diagnostic sedation in a center in North Rhine–Westphalia in this special cohort.

Methods

We retrospectively analyzed anonymized patient files to collect primary data regarding diagnostic evaluation under sedation in the collaborating center. The observation period was January 2021 to November 2023. We included in the analysis exclusively cases in which diagnostic measures were possible only under sedation because they were not able to cooperate. This was the case for 112 out of 807 persons who received treatment at the center during the study period. Sedation was administered where the medical indication was obvious and after people’s statutory guardians had been informed and given consent. The selection of sedatives administered was done individually on the basis of the clinical assessment and the planned diagnostic measures. In 16.1%, only midazolam (oral) was used, 35.7% received only propofol (intravenous), and in 31.3% a combination of both drugs was used to achieve a moderate to deep level of sedation according to the sedation stages of the American Society of Anesthesiologists. In very few cases (9.8%) (EEG diagnostic test), only levomepromazine (oral) was used, and in 7.1% individualized sedation schemes were applied—including combinations of the named effective substances, administration of midazolam (intranasal), and a single-dose inhaled sedation using sevoflurane (given by an anesthetist) before propofol administration. During sedation the patients were monitored continuously by nursing staff and an electronic monitoring system. Propofol was administered exclusively by doctors. Necessary information was extracted from patient files of the hospital information system or paper files. We used SPSS to analyze the data.

Results

The cohort of 112 cases consisted of 65 (58.0%) men and 47 (42.0%) women with a mean age of 40.0 years. 95.5% of those affected had a degree of disability (DoD) of 100. 62.5% of the cohort were affected by moderate to profound intellectual disability with accompanying behavioral problems. In 96.4%, the diagnostic evaluation under sedation had been planned in advance; only in individual cases was it done as an emergency (Table 1). The main reason was the occurrence of new symptoms—for example, in the shape of behavioral changes. In 23.2% of cases the diagnostic evaluation was undertaken to assess the course of known disorders or ongoing treatments. Abdominal or thyroid sonographies (54.5%) and phlebotomy (50.0%) were carried out most often. A further 29.5% of persons underwent phlebotomy without sedation as they were able to cooperate sufficiently; in such cases sedation was administered for other diagnostic measures. Table 1 shows further details.

Table 1

Planning of, reason for, and completed diagnostic evaluation under sedation

In 78 patients (69.6%, Table 2), hitherto unknown medically abnormal findings materialized (among others, fecal impaction, osteoporosis, hip dislocation). Only in 22.3% of cases, no abnormal finding was identified. In 8.0%, the patient file did not include details of the findings. In 51.3% of cases, an abnormal finding led to the recommendation of follow-up; in 28,2% of cases it led to the recommendation of additional complementary diagnostics (Table 2). In nearly 60% of persons, new drug treatment was initiated and in 15.4%, the existing long-term medication was adjusted. Table 2 shows further diagnostic and therapeutic consequences.

Table 2

Diagnostic and/or therapeutic consequence of diagnostic evaluation in abnormal finding

Discussion

In persons with intellectual disability, behavior changes can indicate pain or disorders that such patients cannot communicate verbally. In persons whose ability to cooperate is severely impaired, the necessary diagnostic evaluation is often possible only under sedation, in order to avoid physical coercion. Correct diagnoses are crucial for adequate treatment and help to avoid exclusively symptom-oriented treatment (for example, with psychiatric drugs). The present study documents 112 cases where lacking ability to cooperate led to medically indicated diagnostic evaluation being done under sedation. In none of the cases did complications develop as a result of the sedation or the examination. In most cases, abnormal findings were seen, which underlines the importance of sedation for adequate diagnostic evaluation and therapy in this special and vulnerable group. This approach identified disorders in need of treatment, whose diagnosis would not have been possible without sedation, as has already been described in the literature (4, 5). This approach enables equal participation in medical care in the sense of Article 25 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). The results are based on a single-center data collection. A prospective multicenter study is desirable, but because of diverging professional orientations and equipment in Medical Centers for Adults with Disabilities the results can be expected to be heterogeneous.

Saskia Karina Bücker, Kristin Rolke, Nessia Rachma Dianti, Eva Münster, Jörg Stockmann

Ethics approval and consent to study participation
The research project was approved by the ethics committee at Witten/Herdecke University (S-213/2023) and is registered in the German Clinical Trials Register (DRKS-ID: DRKS00033066). Furthermore, we obtained a positive data protection mandate from the data protection officer at Witten/Herdecke University (DT-958). The study was conducted in agreement with the ethics principles of the current version of the Declaration of Helsinki.

Acknowledgment
The authors thank the staff at the medical center for adults with disabilities for their organizational support in the context of the data collection.

Conflict of interest statement
SKB received lecture honoraria and travel expenses from the DGMGB (the German Society for Medicine for People with Intellectual or Multiple Disabilities).
JS received expense reimbursements and lecture honoraria from, and was made academic program director of a scientific curriculum by, the Medical Association of Westphalia-Lippe. He received a lecture honorarium from the Johann Wilhelm Klein Academy, Würzburg, in the context of a curriculum.

The remaining authors declare that no conflict of interest exists.

Manuscript received on 10 September 2025, revised version accepted on 26 February 2026.

Translated from the original German by Birte Twisselmann, PhD.

Cite this as:
Bücker SK, Rolke K, Dianti NR, Münster E, Stockmann J: Sedation of persons with intellectual disability and multiple disabilities: A single-center, retrospective evaluation of clinical cases. Dtsch Arztebl Int 2026; 123: 341–2. DOI: 10.3238/arztebl.m2026.0037

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