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Research Article: Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care

Date Published: 2023-10-24

Abstract:
Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO. Assessments from parents as well as nursing, psycho-social, and medical professionals were used to determine the contribution of different PCFs in the development and maintenance of IUO. For this, individual PCFs of N = 22 inpatient children with IUO were presented to four raters. Descriptive statistics, Kruskal–Wallis tests, and Krippendorff’s alpha were used to determine which PCFs were most relevant to explain IUO and rater agreement. Psycho-social aspects (44.7%), hyperarousal (47.2%), pain (24.6%), and dystonia (18.1%) were identified as the most relevant PCFs for IUO. Descriptively, physicians’ relevance rating regarding psycho-social aspects, hyperarousal, and dystonia deviated the most from the overall group rating. All professional raters considered psycho-social aspects to be more relevant than did parents. Parents rated pain as more relevant than the other raters. Kruskal–Wallis tests showed no significant differences between relevance ratings (H = 7.42, p = 0.059) or the four parties’ deviations (H = 3.32, p = 0.344). A direct comparison of the six two-party constellations showed that across all factors, agreement was weak to moderate. The highest agreement was between physicians and nurses (? = 0.70), and the lowest was between nurses and psycho-social experts (? = 0.61). Understanding which psycho-social and various biological PCFs are significant for IUO can facilitate more targeted and individualized pediatric palliative care for affected patients.

Introduction:
Children with severe neurological conditions, who are under the care of pediatric palliative teams, often suffer from a highly unpleasant and complex “irritability of unknown origin (IUO)” [1,2,3,4,5]. According to the definition of Siden [6], a child with IUO shows distress behavior characterized by vocalizations and movements of the body, typically arching and stiffening, especially of the extensor muscles. This distress behavior occurs in episodes whereby the length of the episodes is unpredictable and can last…

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