Adjustment of the UKU Side Effect Rating Scale for adults with intellectual disabilities. A pilot study

Patients with intellectual disabilities (ID) and additional psychiatric disorders are often treated with psychotropic medication. However, examinations of side effects among these patients are scarce. The purpose of this pilot study is to examine the most frequently used side effect scale, UKU Side Effect Rating Scale (UKU-SERS), in this patient population.

The aim of the present study is to explore whether the UKU-SERS is feasible for patients with ID. The UKU-SERS consists originally of 48 items, measuring side effects of psychotropic medication. In the study, UKU-SERS was used to score a group of 13 adults with ID admitted to a specialised inpatient psychiatric unit. First, an expert panel of seven psychiatrists and five psychiatric nurses independently evaluated the UKU-SERS and decided which items they considered possible to score after observation alone. Second, a total of 26 staff members, based on observation, scored the 13 patients on the ward. These results were used as the basis for recommending items from UKU-SERS to be used. Items scored differently by the two groups were examined more thoroughly.

The expert panel and the ward staff agreed on 24 of the original 48 UKU-SERS items. The other 24 items were examined more thoroughly based on clinical meaningfulness. Consequently, 11 more items were included despite disagreement in the scorer groups. As expected, items that are based on observations seem more feasible than items based on the patients’ subjective experiences.

The revised checklist comprises 35 items and seems applicable for further research and for use in clinical settings for this patient population. It is possible to observe important side effects using the UKU Side Effect Scale, but adjustment of the scale is desirable to make it more appropriate for the specific purpose and target group.