1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource August 2022 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month August 2022 List URL Address <a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">http://doi.org/​10.3390/children9050664</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions Publisher An entity responsible for making the resource available Children (Basel) Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource pediatrics; complex chronic conditions; rare diseases; psychosocial distress Creator An entity primarily responsible for making the resource McCarthy SR; Golembiewski EH; Gravholt DL; Clark JE; Clark J; Fischer C; Mulholland H; Babcock K; Montori VM; Jones A Description An account of the resource Children with rare or life-limiting chronic conditions and their families are at high risk of psychosocial distress. However, despite its impact on patient and family health and functioning, psychosocial distress and its antecedents may not routinely be captured in medical records. The purpose of this study was to characterize current medical record documentation practices around psychosocial distress among children with rare or life-limiting chronic conditions and their families. Medical records for patients with rare or life-limiting chronic conditions (n = 60) followed by a pediatric complex care program were reviewed. Study team members extracted both structured data elements (e.g., diagnoses, demographic information) and note narratives from the most recent visit with a clinician in the program. Psychosocial topics were analyzed using a mixed quantitative (i.e., frequency counts of topics) and qualitative approach. Topics related to psychosocial distress that were documented in notes included child and parent emotional problems, parent social support, sibling emotional or physical problems, family structure (e.g., whether parents were together), and financial concerns. However, 35% of notes lacked any mention of psychosocial concerns. Although examples of psychosocial concerns were included in some notes, none were present in over one-third of this sample. For both patients with rare or life-limiting chronic conditions and their caregivers, more active elicitation and standard documentation of psychosocial concerns may improve the ability of healthcare providers to identify and intervene on psychosocial concerns and their risk factors. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children9050664" target="_blank" rel="noreferrer noopener">10.3390/children9050664</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2022 August 2022 List Babcock K Children (Basel) Clark J Clark JE Complex Chronic Conditions Fischer C Golembiewski EH Gravholt DL Jones A McCarthy SR Montori VM Mulholland H Pediatrics psychosocial distress Rare Diseases