Originally published on October 1, 2013.

Dr. Timothy Lotze was awarded funding by Cure SMA for one of four new Clinical Care focused projects. The project is being conducted at Texas Children’s Hospital at the Baylor College of Medicine. This award for $50,000 will fund a project to enable health care providers to take better care of patients with SMA I in emergency centers and hospital settings.

Project Description

Quality Improvement Project to Reduce Gaps in Care in the Hospital Setting for Children with SMA Type I

Objective: The objective of this study is to identify gaps in care for children with SMA I while they are in the emergency center, hospital or with their primary care provider, and improve the standard of care provided.
Research Strategy: Parents will be invited to participate in a focus group in either English or Spanish to discuss their family’s experience in the emergency center, hospital and with primary care. Healthcare providers will be asked via survey to (anonymously) identify deficits in their knowledge related to SMA I and to share their perceptions about barriers to care for children with this disease. The information from these groups will be used by the investigators to develop interventions to improve healthcare. Interventions will include: 1) Education about SMA I to a broad spectrum of hospital providers, 2) Development of a medical template that parents can carry with them to the emergency center / hospital that is individualized and addresses urgent care concerns related to the child with SMA I, and 3) An electronic medical record of the same medical template.
Significance of the Project: This project is significant because it allows quality improvement for the hospital care of children with SMA I to be driven by the collaborative efforts of both families and healthcare providers and includes education to primary care providers. It also provides information to create a hard copy medical template (tailored to each child) that can serve as a practice alert or emergency card to alert providers who are not as familiar with SMA I, to immediate disease concerns.

Meet Dr. Lotze:

Who are you?
I am currently an Associate Professor in Child Neurology at Texas Children’s Hospital.  I have been the Director for the MDA Clinic at Texas Children’s Hospital for the past 10 years.

How did you first become involved in SMA research?
Texas Children’s Hospital is a multidisciplinary clinic providing specialty care in Neurology, Pulmonary Medicine, Physical Medicine and Rehabilitation, Nutrition, and Social Services to a large number of familes living with SMA.  Through personal experiences with these families, I along with my colleagues in the related specialties have come to identify areas needing further clinical research, to include identification of common barriers of care for families whose child requires hospitalization.

What is your current role in SMA research?
I am principally involved in Clinical Research projects.  Such projects involve a variety of designs to include exploratory studies, observational studies, and pharmaceutical trials.  Texas Children’s Hospital serves as a principal site for a number of neuromuscular studies that allow families and patients to become involved in research.

Cure SMA has been funding critical research to develop a treatment and cure for the disease since 1984, along with providing important resources and support for families affected by SMA. In 2013, we launched a new program to fund care research to drive improvements in patient care in spinal muscular atrophy. This program is focused on improving care and the quality of life for SMA patients.

The results of funded projects will build an evidence base and demonstrate measurable, positive effects on the clinical management and lives of patients with SMA. These results will then be used to provide:

•    Educational programs for professional medical providers, such as the Cure SMA CME day
•    New family-focused care publications, such as the Cure SMA Care Series Booklets
•    Peer reviewed journal publications to influence insurance coverage.