Geospatial Analyses of Accessibility to Down Syndrome Specialty Care

Joslyn, Nicholas J.; Berger, Heidi; Skotko, Brian G.

doi:10.1016/j.jpeds.2019.10.058

Cited by 13 publications

(21 citation statements)

References 10 publications

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“…Beyond what might be routinely available in primary care settings, a Down syndrome specialty clinic is one approach to address healthcare needs; multidisciplinary teams improve outcomes in chronic conditions (Joslyn et al, 2020). Specialty clinics can have important contributions to medical care; before attending the Down syndrome specialty care clinic at Boston Children's Hospital, only 9.8% of patients were completely up‐to‐date on recommended screenings (Skotko et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

“…DS specialty clinics exist throughout the United States but follow different models, serve different populations by age or location, and are housed in different medical specialties (Skotko et al, 2013). Seventy‐one existing specialty clinics for DS in the Unites States across geographic regions were listed on the Global Down Syndrome Foundation and National Down Syndrome Society websites (Joslyn et al, 2020). Some Down syndrome specialty clinics see only the pediatric population, whereas others provide care restricted to adults (Joslyn et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

“…Seventy‐one existing specialty clinics for DS in the Unites States across geographic regions were listed on the Global Down Syndrome Foundation and National Down Syndrome Society websites (Joslyn et al, 2020). Some Down syndrome specialty clinics see only the pediatric population, whereas others provide care restricted to adults (Joslyn et al, 2020). Previous study of the 71 specialty clinics for individuals with DS did not subdivide these clinics by age of population served: children with DS, adults with DS, or both (Joslyn et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

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Specialty clinics for adults with Down syndrome: A clinic survey

Santoro

Campbell

Balasubramanian

et al. 2021

American J of Med Genetics Pt A

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Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs is unknown. Electronic survey of staff of specialty clinics for adults with Down syndrome was conducted. Review of online clinic listings, and calculation of the number of adults with Down syndrome were performed. Analysis identified the percent of adults with Down syndrome who could have their medical care needs met in a current specialty clinic. Fourteen specialty clinics report providing care for 4038 adults with Down syndrome. Respondents reported gaps in care including: limitations of existing clinics, need for additional clinics, and knowledgeable health professionals in Down syndrome. Survey‐respondent clinic capacity would meet needs of 3% of adults with Down syndrome. Twenty‐five clinics for adults with Down syndrome were listed online with capacity to care for 6517 adults with Down syndrome meeting the needs of 5% of the population. Additional clinic capacity is needed to meet the needs of adults with Down syndrome. Survey of existing clinics provides guidance to create additional clinics, including: must‐have team members, current sources of clinic financial support, and gaps in current clinical care.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Specialty clinics for adults with Down syndrome: A clinic survey

Santoro

Campbell

Balasubramanian

et al. 2021

American J of Med Genetics Pt A

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“…13-15 Ensuring equitable access to a medical home improves care coordination and facilitates evaluation and management among primary and specialty providers to meet the medical needs of children with DS. 14,16…”

Section: Discussionmentioning

confidence: 99%

“…Joslyn et al reported that >20% of patients with DS encounter significant geographic restrictions to care, whereby travel to the nearest specialty care clinic may be >2 hours for a significant proportion. 16 However, children living within our primary service area completed testing at a rate of about 70%. Of note, the only pediatric sleep laboratories within the service area are affiliated with our institution; therefore, we assume a low likelihood that the remaining 30% would have obtained a PSG elsewhere.…”

Section: Discussionmentioning

confidence: 99%

Demographic and Clinical Characteristics Associated With Adherence to Guideline‐Based Polysomnography in Children With Down Syndrome

Knollman

Heubi

Wiley

et al. 2020

Otolaryngol.--head neck surg.

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Objectives To compare the demographic and clinical characteristics of children with Down syndrome who did and did not receive polysomnography to evaluate for obstructive sleep apnea after publication of the American Academy of Pediatrics’ guidelines recommending universal screening by age 4 years. Study Design Retrospective cohort study. Setting Single tertiary pediatric hospital. Methods Review was conducted of children with Down syndrome born between 2007 and 2012. Children who obtained polysomnography were compared with children who did not, regarding demographic data, socioeconomic status, and comorbidities. Results We included 460 children with Down syndrome; 273 (59.3%) received at least 1 polysomnogram, with a median age of 3.6 years (range, 0.1-8.9 years). There was no difference in the distribution of sex, insurance status, or socioeconomic status between children who received polysomnography and those who did not. There was a significant difference in race distribution ( P = .0004) and distance from home to the medical center ( P < .0001) between groups. Among multiple medical comorbidities, only children with a history of hypothyroidism ( P = .003) or pulmonary aspiration ( P = .01) were significantly more likely to have obtained polysomnography. Conclusions Overall, 60% of children with Down syndrome obtained a polysomnogram. There was no difference between groups by payer status or socioeconomic status. A significant difference in race distribution was noted. Proximity to the medical center and increased medical need appear to be associated with increased likelihood of obtaining a polysomnogram. This study illustrates the need for improvement initiatives to increase the proportion of patients receiving guideline-based screening.

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

King

Remington

Berger

2022

American J of Med Genetics Pt A

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Patients with Down syndrome (DS) have significant specialized healthcare needs.Our objective was to understand what families of patients with DS perceive to be the most pressing gaps in health care, barriers to attendance at a DS specialty clinic, and what they thought a specialty healthcare clinic for people with DS ought to include as part of the clinical package. A qualitative survey was distributed nationally through the online platform SurveyMonkey. We divided respondents into two groups: those who attended a DS specialty clinic (n = 141) and those who did not (n = 100). Data were cleaned and analyzed in RStudio 3.6.3. Results demonstrate that families value mental health services, therapies (e.g., physical therapy, occupational therapy, and speech therapy), developmental specialists, dietitians, and educational advocates. Lack of clear advertisement, especially within low-income communities, a lack of awareness of DS specialty clinics, and travel time to clinics constituted significant barriers to care. These findings are arguably of benefit to those who direct DS specialty clinics because they offer direction for resource allocation in a time of increasing healthcare costs and financial scrutiny.

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Geospatial Analyses of Accessibility to Down Syndrome Specialty Care

Cited by 13 publications

References 10 publications

Specialty clinics for adults with Down syndrome: A clinic survey

Specialty clinics for adults with Down syndrome: A clinic survey

Demographic and Clinical Characteristics Associated With Adherence to Guideline‐Based Polysomnography in Children With Down Syndrome

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

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