Dermatology Life Quality Index survey in patients with Down syndrome and caregivers

Morgan Dykman; Madison Ernst; Tasya Rakasiwi; Amy Buros Stein; David J Satin; Kristen E Holland; Stephanie L Santoro; Jillian F Rork

doi:10.1111/pde.15593

Dermatology Life Quality Index survey in patients with Down syndrome and caregivers

Pediatr Dermatol. 2024 Mar 18:e15593. doi: 10.1111/pde.15593. Online ahead of print.

Authors

Morgan Dykman¹, Madison Ernst¹, Tasya Rakasiwi², Amy Buros Stein³, David J Satin⁴, Kristen E Holland⁵, Stephanie L Santoro⁶, Jillian F Rork²

Affiliations

¹ University of Minnesota Medical School, Minneapolis, Minnesota, USA.
² Department of Dermatology, Dartmouth-Hitchcock Medical Center, Children's Hospital at Dartmouth, Manchester, New Hampshire, USA.
³ Pediatric Dermatology Research Alliance, Portland, Oregon, USA.
⁴ Department of Family Medicine and Community Health, Center for Bioethics, University of Minnesota, Minneapolis, Minnesota, USA.
⁵ Department of Dermatology, Children's Hospital of Wisconsin, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
⁶ Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.

PMID: 38500261
DOI: 10.1111/pde.15593

Abstract

Down syndrome (DS) is associated with many dermatological conditions, including hidradenitis suppurativa, folliculitis, and alopecia areata. Despite the high incidence of skin conditions in this population, there are no quality of life (QoL) studies in the dermatology literature focused on patients with DS or their caregivers. The frequently used QoL assessment tool, the Dermatology Life Quality Index (DLQI), has yet to be studied in this population. This study addresses these disparities by capturing how various skin conditions affect the QoL of people with DS and their caregivers and assessing the utility of the DLQI.

Keywords: Down syndrome; genetic diseases/mechanisms; quality of life.