Pain assessment in Down Syndrome patients: a narrative review of the literature

Abstract

The paper provides a description of available measurement tools which are able to adequately assess acute chronic pain in Down Syndrome (DS) patients, regardless of their age and cognitive impairment. Papers referring to DS patients were sought using different databases, such as PubMed, CINAHL, Scopus, Web of Science (ISI) and Cochrane, with no limit of time and published up to October 2017. All validated tools applicable to DS patients were included in the search, which consisted of papers published both in English and Italian. Irrelevant studies not pertaining to this specific query, grey literature publications, Commentaries, Letters and Editorials were excluded. Six pain assessment tools were obtained, based on the observations of caregivers and healthcare's practitioners and on the interpretation of behavioral cues of patients unable to self-report. The identified tools were: the Non-communicating Children's Pain Checklist-Revised (NCCPC-R), the Pediatric Pain Profile (PPP), the Revised Face, Legs, Activity, Cry and Consolability Scale (r- FLACC), the Individualized Numeric Rating Scale (INRS) and the COMFORT-Behavior Scale (COMFORT-B), all applicable to patients affected by chromosomic diseases. The COMFORT- Behavior Scale (COMFORT-B) could be used only in DS infants (0-3 years) undergoing mechanic ventilation. Four of the six tools have also been validated in Italian. To date national and international research studies have not been able to adequately respond to the needs of DS patients who are not be able to clearly express the level of pain they may be experiencing. Only one assessment tool turned out to be suitable for measuring pain intensity in the pediatric population undergoing mechanic ventilation. (COMORT-B), although this latter could not be used for assessing pain intensity in other DS populations. This means that there is the urgent need to carry out further validation studies so that a wider range of pain assessment tools may be used for people with Down's syndrome.