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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.
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Fewer than 10% of adolescents or young adults with ID can independently prepare meals.
“In contrast, fewer than 10% of adolescents or young adults with ID can independently prepare meals22, and more than half report difficulty with basic cooking tasks23.”
From A cooking skills intervention for long-term weight loss in young adults with intellectual disabilities: Rationale and design for a randomized trial (2026) · cites this paper as [22]
The Results report that 4% of adults with Down syndrome in this clinic cohort could cook independently. They do not establish that fewer than 10% of adolescents or young adults with intellectual disability generally can prepare meals; the measured group was adults with Down syndrome, and cooking was not distinguished from preparing simple meals (Results and Discussion; page numbers unavailable). (LLM, conf=0.87)
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Research works printed but not linked: 24
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Cited by
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Ptomey, L. T., Danon, J. C., Catley, D., Washburn, R. A., Bodde, A., Diaz, F. J., Helsel, B. C., Rice, A. M., Sherman, J. R., Koester, M., et al. (2026) · Contemporary Clinical Trials · doi:10.1016/j.cct.2026.108380
Metadata
- Authors
- Krell, K., Haugen, K., Torres, A., & Santoro, S.
- Affiliations
- Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, MA 02114, USA
- ORCID
- Santoro, Stephanie
- Venue
- Brain Sciences
- Publisher
- MDPI AG
- Published
- 2021-07-30
- Volume
- 11
- Issue
- 8
- Pages
- 1012
- ISSN
- 2076-3425
- PMC
- PMC8391843
- Cited by
- 28
- References
- 0
- Language
- en
- Funders
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (K23HD100568)
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