Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic

Abstract

Levels of independence vary in individuals with Down syndrome (DS). We began this study to describe the current life skills in our clinic population of children and adults with DS. We collected and reviewed demographics, living situation, and life skills from an electronic intake form used in clinic procedures. Descriptive statistics for this cohort study included mean, standard deviation, and frequencies. From 2014–2020, 350 pediatric and 196 adult patients (range 0–62 years) with a first visit to the Massachusetts General Hospital Down Syndrome Program are described. Pediatric patients were most often enrolled in school, and in an inclusion setting. Adult patients were most often participating in a day program, living with family, and wanted to continue living with family in the future. Most (87%) of adults with DS communicated verbally, though fewer could use written communication (17%). Life skills of greatest importance to adolescents and adults with DS included: learning about healthy foods (35%), preparing meals (34%), providing personal information when needed (35%), and describing symptoms to a doctor (35%). Life skills for patients with DS are varied; those associated with a medical appointment, such as sharing symptoms with the doctor, could improve for greater independence.

Assessing co‐occurring mental health conditions in a multidisciplinary Down syndrome clinic and the role of family history

“…Records that were reviewed came from the following sources: (1) Prior to a scheduled clinic visit to the MGH DSP, parents and caregivers of patients fill out an electronic intake form, previously described (Krell et al, 2021). The electronic intake form is reviewed by the MGH DSP team prior to a visit and provides background on interval history, past medical history, medication reconciliation, family history, and physicians/members of a patient's clinical care team.…”

Adult Independence Living Measurement Scale: Psychometric validation of a scale to estimate personal skills for independent living in people with intellectual and developmental disabilities

“…2015; Krell et al . 2021), along with others concentrated on managing health and self‐care in the event of illness (Hale et al . 2011; Young et al .…”

“…There is little research in the literature that has focused on promoting the general level of independence in people with IDD. The bulk of the studies have focused on teaching specific skills related to practical activities like the management of tasks in the home environment (Cannella-Malone et al 2006) or in the community (Davies et al 2002;Smith et al 2015;Krell et al 2021), along with others concentrated on managing health and self-care in the event of illness (Hale et al 2011;Young et al 2012;Kuijken et al 2016). These studies were mainly conducted on small samples in the absence of control groups and extended outcome measures, being therefore poorly comparable with larger populations (Storey 2007;Young et al 2011;Ramdoss et al 2012).…”

Caregivers evaluate independence in individuals with Down syndrome

“…More concretely, independence is the ability to complete tasks without assistance, which varies significantly in individuals with DS (Bertoli et al, 2011; de Graaf et al, 2018; Krell et al, 2021; Matthews et al, 2018). Functional status may contribute to independence in DS and intellectual and developmental disabilities (IDD).…”