Quality Improvement Initiatives to Inform Optimal Care for Down Syndrome

See related article, p 58

Optimal care for children with special health care needs is fraught with multiple challenges. For many conditions there is limited guidance, but for Down syndrome, the American Academy of Pediatrics (AAP) has provided very specific direction for primary and specialty care providers for many years.1, 2, 3 Despite this readily available guidance, achieving compliance with health supervision for children with Down syndrome has remained widely variable.

In this edition of The Journal of Pediatrics, Santoro et al report a retrospective cohort analysis of compliance in a specialty Down syndrome clinic with the 2011 AAP recommendations around the timing of a local quality improvement initiative with integrations in the electronic health record and punctuated also by the coronavirus disease 2019 pandemic and the introduction of telehealth care.⁴ The heterogeneity of their outcomes in adherence to the AAP recommendations reflects many independent variables, some that cannot be easily quantified, yet highlights the importance of quality-improvement initiatives in addressing the problem. Indeed, throughout the coronavirus disease 2019 epidemic when visits could not be in-person, the compliance rate with the interventions in place decreased, but increased with resumption of in-person visits. The factors responsible for this are no doubt multifactorial and do not appear simply to be related to the need for virtual visits. The differences between ophthalmology and audiology compliance are puzzling, as both require in-person visits, as does phlebotomy for laboratory tests.

Their finding that adherence to audiology recommendations showed the least overall compliance is interesting, since the importance of good hearing for optimal communication skills is well recognized.⁵ With aggressive intervention, most young children with Down syndrome can achieve normal or improved hearing.⁶ Social communication, learning, and behavior may be improved when optimal hearing is achieved. From this study, it does not appear that concern about in-person appointments affected other in-person interactions to the same extent as audiology, and therefore additional attention to this lack of compliance is required. Methods to enhance parent/caregiver understanding of the implications of even mild hearing loss may be needed. Simply listing or saying at a clinic visit to obtain an audiology evaluation at clearly defined intervals without an explanation about the implications of hearing loss may be inadequate.

This study is unique as the result of the intervening pandemic and illustrates that virtual visits can be effective for managing patients when in-person visits are not possible or feasible. Because there were still relative deficits in compliance, especially for audiology screening, during the virtual visit period, additional measures may be indicated to minimize the risk of omissions in care to patients that may occur. This is especially true when patients must travel long distances or have undercurrent illness preventing in-person care. Ensuring that third-party payor coverage for virtual visits continues is essential for this process to continue, and advocacy for this option will be important as insurers, especially Centers for Medicare and Medicaid Services, consider reimbursement for virtual visits in the year ahead.

Perhaps surprising in this study is that there were no documented differences in compliance by race or ethnicity. The disparities that are widely reported among groups who may not have access to internet did not seem to influence outcomes in this study and further attention to this and how it was avoided, warrants attention.⁷

Of note is that at baseline, there was already a significant difference between compliance in screening for new and follow-up patient visits. This appears to reflect that the Down syndrome–specific clinic had influenced the compliance to recommended interventions compared with care previously provided only in primary care or other specialty clinics. Further delineation of specifics regarding whether the patients new to the Down syndrome clinic had received previous care would be helpful to understand as interventions to avoid this disparity are considered. It does appear, however, that attention to education for providers across networks would be an important component. Effectiveness of this education was documented in an earlier Ohio study as well.⁸ The AAP has included in its health supervision guidance for children and adolescents with Down syndrome extensive references and has published on www.healthychildren.org a list of recommendations for routine care of children and adolescents with Down syndrome. Healthychildren.org is a parent information website in both English and Spanish, but it does not include narrative providing the reasons for the specific guidance, and this responsibility falls to providers.

In conclusion, maximal adherence to health supervision guidance for care for children and adolescents with Down syndrome is critical to achieve optimal social, physical, and functional outcomes. Attention to how providers can ensure that adherence is a challenge that remains. Quality-improvement initiatives and analyses as reported by Santoro et al are important to work toward that goal and continue to refine that process. Addressing parental perceptions of the relative value of the interventions, incorporating the reasons behind the recommendations in clinical discussions, and providing supplemental resources may be helpful to achieve an improved rate of compliance. Aggressive education of primary and specialty care providers is another intervention with probability of success. Down syndrome specialists should work to achieve a multifactorial approach to ensure that all children receive care necessary for optimal outcome.