Implementing a Quality Improvement Initiative to Screen for Dementia in a Down Syndrome Specialty Clinic

Stephanie L Santoro; Ayesha Harisinghani; Caroline Bregman; Clorinda Cottrell; Margaret B Pulsifer; Mikayla Shaffer; Amy Torres; Brian G Skotko; Nicolas M Oreskovic

doi:10.1002/ajmg.a.63948

Implementing a Quality Improvement Initiative to Screen for Dementia in a Down Syndrome Specialty Clinic

Am J Med Genet A. 2024 Nov 28:e63948. doi: 10.1002/ajmg.a.63948. Online ahead of print.

Authors

Stephanie L Santoro^{1

2}, Ayesha Harisinghani¹, Caroline Bregman¹, Clorinda Cottrell¹, Margaret B Pulsifer^{3

4}, Mikayla Shaffer¹, Amy Torres¹, Brian G Skotko^{1

2}, Nicolas M Oreskovic^{1

2}

Affiliations

¹ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
² Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
³ Psychology Assessment Center, Massachusetts General Hospital, Boston, Massachusetts, USA.
⁴ Department of Psychiatry, Harvard Medical School, Boston, Massachusetts, USA.

PMID: 39607288
DOI: 10.1002/ajmg.a.63948

Abstract

Using quality improvement methods, we aimed to implement a protocol to assess for dementia among adults with Down syndrome (DS). To track implementation, interval retrospective chart review of patients with DS with visits to the Massachusetts General Hospital DS Program (MGH DSP) was conducted quarterly. The impact of a newly implemented protocol created and informed by clinical experts in the MGH DSP including laboratory tests, imaging, referrals, and screening tools for dementia and mental health concerns, was analyzed using statistical process control charts. From December 2021 to December 2022, the MGH DSP developed and implemented a new clinical protocol to screen for dementia in 44 adults with DS, ages 40 and above, at a total of 48 visits. We found high rates of completion of two screening surveys (85% and 81%, respectively) and an 84% adherence to our overall protocol elements by clinical staff. Among those with dementia-like symptoms, medical evaluation was collected and summarized. We show that it is possible to successfully implement a new protocol, including the use of a dementia screener, in line with published evidence-based care guidelines for adults with DS. We present our protocol as one successful approach focused on pre-visit screening for symptoms of dementia and mental health concerns and evaluating for co-occurring medical conditions in adults with DS.