• Lucas Pieper, Boris Zernikow, Ross Drake, Michael Frosch, Michael Printz, and Julia Wager.
• 1 Paediatric Palliative Care Centre, Children's and Adolescents' Hospital, Datteln, and Department of Children's Pain Therapy and Paediatric Palliative Care, Faculty of Health-School of Medicine, Witten/Herdecke University , Datteln, Germany .
• J Palliat Med. 2018 Apr 1; 21 (4): 552-564.

BackgroundDyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children.ObjectiveThe purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions.MethodsA systematic literature search for relevant literature from 1990 until the present was performed using the online database PubMed. Information about prevalence, pathophysiological mechanisms, measurement, and treatment of dyspnea was extracted from all 43 eligible publications.ResultsThe prevalence ranged widely from 17% to 80%. Breathlessness was primarily attributed to a disease-specific pathophysiology. A multidimensional approach has not been reported. Assessment of dyspnea included eight tools using either subjective self- or proxy-ratings or objective measures. Evidence for the effectiveness of various treatment approaches was low.DiscussionThe prevalence rates for dyspnea could be generalized across all conditions and patient subgroups. The biopsychosocial-spiritual approach was not addressed by the studies. There is a lack of an adequate and validated measurement tool that can be applied to children of various ages and diagnoses, communication ability, and practicable across different settings. Most found treatment approaches lacked good evidence in children.ConclusionAlthough the prevalence rate of dyspnea in pediatric palliative care is high, it has been poorly studied.

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