Family perspectives on gaps in health care for people with Down syndrome

King, Emily; Remington, M.; Berger, Heidi

doi:10.1002/ajmg.a.62635

Cited by 4 publications

(1 citation statement)

References 37 publications

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“…While the positive impact of such specialty clinics is known (Chung et al, 2021;Daniels et al, 2022;Hickey et al, 2023;Skotko et al, 2013), only 5% of the eligible population in the United States can access these clinics, due, in part, to their geographic inaccessibility (Joslyn et al, 2020;Santoro et al, 2021). While studies exist that describe perceived barriers to specialty care in the United States (Chung et al, 2023;King et al, 2022;Krell et al, 2023) and Mexico (Corona-Rivera et al, 2019;Martínez-Valverde et al, 2019), few comparative studies exist.…”

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confidence: 99%

Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome

Berger,

Wittman,

Smith

et al. 2023

American J of Med Genetics Pt C

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Patients with Down syndrome have significant specialized health care needs. Our objective was to understand the needs, satisfaction, and online habits of caregivers as they care for persons with Down syndrome. A mixed‐method survey was distributed through REDCap from April 2022 to June 2022 in the United States; a Spanish‐translated version was distributed through SurveyMonkey from August 2022 to March 2023 in Mexico. We received 290 completed responses from the United States and 58 from caregivers in Mexico. We found that current health care options are not meeting the needs of many individuals with DS in both the United States (39.7%) and Mexico (46.6%). Caregivers expressed frustrations with the inaccessibility and inapplicability of health care information. In particular, they often found the volume of information overwhelming, given their limited medical background. Additionally, health care recommendations were not customized and lacked practical recommendations. Most caregivers in both the United States (72.1%) and Mexico (82.8%) believe it is not easy to find answers to medical questions about their loved ones with DS. Online platforms with customized, specific health information related to DS could offer innovative solutions to these unmet needs for families and primary care providers.

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confidence: 99%

Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome

Berger,

Wittman,

Smith

et al. 2023

American J of Med Genetics Pt C

Self Cite

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Vowel Production in Children and Adults With Down Syndrome: Fundamental and Formant Frequencies of the Corner Vowels

Vorperian

Kent

Lee

et al. 2023

J Speech Lang Hear Res

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Purpose: Atypical vowel production contributes to reduced speech intelligibility in children and adults with Down syndrome (DS). This study compares the acoustic data of the corner vowels /i/, /u/, /æ/, and /ɑ/ from speakers with DS against typically developing/developed (TD) speakers. Method: Measurements of the fundamental frequency ( f o ) and first four formant frequencies (F1–F4) were obtained from single word recordings containing the target vowels from 81 participants with DS (ages 3–54 years) and 293 TD speakers (ages 4–92 years), all native speakers of English. The data were used to construct developmental trajectories and to determine interspeaker and intraspeaker variability. Results: Trajectories for DS differed from TD based on age and sex, but the groups were similar with the striking change in f o and F1–F4 frequencies around age 10 years. Findings confirm higher f o in DS, and vowel-specific differences between DS and TD in F1 and F2 frequencies, but not F3 and F4. The measure of F2 differences of front-versus-back vowels was more sensitive of compression than reduced vowel space area/centralization across age and sex. Low vowels had more pronounced F2 compression as related to reduced speech intelligibility. Intraspeaker variability was significantly greater for DS than TD for nearly all frequency values across age. Discussion: Vowel production differences between DS and TD are age- and sex-specific, which helps explain contradictory results in previous studies. Increased intraspeaker variability across age in DS confirms the presence of a persisting motor speech disorder. Atypical vowel production in DS is common and related to dysmorphology, delayed development, and disordered motor control.

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Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19

Rubenstein,

Kyprianou,

Kumar

et al. 2023

American Journal on Intellectual and Developmental Disabilities

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Individuals with Down syndrome (DS) have been disproportionately harmed by the COVID-19 pandemic and may have been more likely to have sacrificed opportunity and activity to avoid potential exposures. Our objective was to describe the experience one to one and half years into the COVID-19 pandemic for adults with DS, as reported by their caregivers in an online survey conducted between April 2021 and September of 2021. In our sample of 438 adults with DS, caregivers reported that adults with DS lost activities, struggled with employment, had negative behavioral changes, lost skills, and developed more mental health conditions. For adults with DS, one in five caregivers reported less healthcare usage, one in four reported delayed routine care, and 86.5% reported lost activities. As the pandemic continues, targeted support for adults with DS is needed to prevent further skill loss and mental health conditions.

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Family perspectives on gaps in health care for people with Down syndrome

Cited by 4 publications

References 37 publications

Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome

Health care satisfaction and medical literacy habits among caregivers of individuals with Down syndrome

Vowel Production in Children and Adults With Down Syndrome: Fundamental and Formant Frequencies of the Corner Vowels

Healthcare and Behavior Changes for Adults With Down Syndrome 1-Year Into COVID-19

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