Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic
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...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-07-01
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| Series: | Brain Sciences |
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| Online Access: | https://www.mdpi.com/2076-3425/11/8/1012 |
| _version_ | 1797524539322662912 |
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| author | Kavita Krell Kelsey Haugen Amy Torres Stephanie L. Santoro |
| author_facet | Kavita Krell Kelsey Haugen Amy Torres Stephanie L. Santoro |
| author_sort | Kavita Krell |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-10T08:58:53Z |
| format | Article |
| id | doaj.art-e023c051c7a64ee1bfb620f3d5985e0c |
| institution | Directory Open Access Journal |
| issn | 2076-3425 |
| language | English |
| last_indexed | 2024-03-10T08:58:53Z |
| publishDate | 2021-07-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Brain Sciences |
| spelling | doaj.art-e023c051c7a64ee1bfb620f3d5985e0c2023-11-22T06:58:44ZengMDPI AGBrain Sciences2076-34252021-07-01118101210.3390/brainsci11081012Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome ClinicKavita Krell0Kelsey Haugen1Amy Torres2Stephanie L. Santoro3Division of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, MA 02114, USADivision of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, MA 02114, USADivision of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, MA 02114, USADivision of Medical Genetics, Department of Pediatrics, Massachusetts General Hospital, Boston, MA 02114, USALevels 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.https://www.mdpi.com/2076-3425/11/8/1012Trisomy 21Down syndromeindependencetransition to adulthoodproxy-report |
| spellingShingle | Kavita Krell Kelsey Haugen Amy Torres Stephanie L. Santoro Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic Brain Sciences Trisomy 21 Down syndrome independence transition to adulthood proxy-report |
| title | Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic |
| title_full | Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic |
| title_fullStr | Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic |
| title_full_unstemmed | Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic |
| title_short | Description of Daily Living Skills and Independence: A Cohort from a Multidisciplinary Down Syndrome Clinic |
| title_sort | description of daily living skills and independence a cohort from a multidisciplinary down syndrome clinic |
| topic | Trisomy 21 Down syndrome independence transition to adulthood proxy-report |
| url | https://www.mdpi.com/2076-3425/11/8/1012 |
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