Quality Improvement

What is Quality Improvement and How Can it Help Autism Treatment? By Kristina Grifantini

Individuals with autism spectrum disorders (ASD) face more obstacles in accessing medical care than typically developing children. From both family experience and research studies, we know that families and individuals with ASD face challenges in getting the medical and subspecialty care they need. Patients sometimes face delayed or missed diagnoses or other difficulties when trying to get treatment. Often these problems are due to confusing or inefficient processes. But finding the best ways to reduce barriers to quality healthcare for patients can seem overwhelming.

At NICHQ (National Initiative for Children’s Healthcare Quality), we aim to bring quality improvement to children’s healthcare by using a systematic, evidence-based approach to implementing sustainable, positive changes in systems. Led by experienced pediatric professionals, we are a nonprofit organization that works with teams of practitioners, advocates, parents and patient partners across the country. Our aim? To make healthcare effective, accessible and safe for all children.

Process flow diagrams (or “algorithms”) are used to walk doctors and other care providers through the steps for diagnosing and treating a medical condition. They form part of a treatment “guideline” that may also include definitions and other notes to help the clinician.

One area that the NICHQ team is focusing on is the identification and treatment of physical health issues in children with ASD. Often, these conditions – such as constipation, seizures and insomnia – are not well understood or treated in this population. In 2008, NICHQ partnered with the Autism Treatment Network/Autism Intervention Research Network on Physical Health (ATN/AIR-P) to address these issues systematically. NICHQ helped the ATN/AIR-P to create process flow diagrams to standardize how doctors identify and manage these problems in individuals with ASD. Such flowcharts instruct doctors on what kind of treatment to provide if symptoms are present (for example, check diets in cases of constipation).

Now, in a project running from 2011 to 2013 and dubbed the “Collaborative to Improve Care for Children with Autism Spectrum Disorders,” NICHQ is working with teams from some of the ATN/AIR-P sites to improve the identification and management of constipation and insomnia symptoms that tend to occur in children with ASD. Doctors, nurses and care coordinators are working with local general practitioners to address this need. Another subset of site teams is working to improve access to care by reducing wait times for initial and follow-up visits to ATN sites.

The collaborative project also focuses on engaging parents in quality improvement work. As the users of these health services, parents are key contributors to ideas for improvement. Teams have begun to create local Parent and Family Advisory Councils (PFACs), in which parents discuss ideas for improvement at their clinical sites. Aside from PFACs, NICHQ also encourages teams to bring a parent partner into their work. The parent perspective is a vital part of the improvement process: parents provide a view of how it feels to experience the healthcare system from the point of view of the family.

NICHQ teaches a tried-and-true method of quality improvement. The method focuses on asking fundamental questions about what changes will lead to improvements. The process then tests small cycles of change called Plan-Do-Study-Act (PDSA) cycles. We advise healthcare teams to plan what change to make by gathering information about the problem and brainstorming solutions.They do the change for a set amount of time while recording data (such as answers from surveys) that will indicate a success or failure. Then, teams study the data to see if a meaningful change has been made (if patients’ positive responses have gone up, or if wait times for doctors’ visits have decreased, for example). Finally, armed with data, the teams act on what’s learned by ignoring, adopting or incorporating the change. It can take many PDSA cycles before an organization finds the change that works best.

Want to learn more about our QI work?

For more information about this project, please contact Shela Merchant at smerchant@nichq.org.