NHPCC Launches a National Quality
Improvement Initiative

Implementing Quality Improvement Projects at the HTCs
 
The NHPCC is coordinating and supporting a national quality improvement (QI) effort to ensure that the science of quality improvement further improves care and outcomes for individuals with bleeding disorders.
 

Teams presenting their 5Ps poster.
Supporting the Transition of Care for Adolescents with Hemophilia
 
In collaboration with the regional networks, NHPCC identified adolescent transition as the first national priority for quality improvement. It is a Healthy People 2020 (HP2020) measure reported by the HTCs, and both the patient and HTC needs assessments identified transition as a gap in care. Transition of care is also recognized as an area for continued improvement across all healthcare systems, and consequently is one of the nation's HP2020 goals.   
 
As a child with a bleeding disorder progresses through normal developmental stages, learning to care for oneself and cope with this chronic disease can be challenging and requires specific interventions. Although guidelines to support transition of children with hemophilia to adulthood have been developed, implementation of them in the clinical setting has been difficult.
 
National Strategy for Implementing Quality Improvement for
Adolescent Transition
The national QI strategy for adolescent transition has three interdependent components:
  • Collecting national metrics
  • Identifying evidence of best practices and assembling tools to be used for support in the transition QI projects
  • Managing QI activities at the HTC level with trained coaches and a repeatable, transferrable process
There is an ongoing dynamic process between the three components leading to improved care.

Quality Measures
 
Quality at the national, regional and HTC level will be measured through the collection, analysis and dissemination of quality metrics.  For adolescent transition, the HP2020 measure will be used: increase the proportion of youth with special healthcare needs whose healthcare provider has discussed transition planning from pediatric to adult care.
 
The baseline for this measure was collected in the National Patient Needs Assessment in 2013. Subsequent year metrics will be collected through the Patient Experience Survey administered at HTCs annually through 2019. HTCs are already collecting data to measure transition of care.
 
Transition of Care Quality Improvement Work Group
 
The transition work group, chaired by Deborah Brown, MD, evaluated available resources that could be modified and used for transition training of HTC providers. The work group agreed that implementing the six core elements developed by Got Transition , a HRSA-funded project, was the best educational resource to improve adolescent transition in hemophilia. The work group developed a video on how to effectively navigate the website and plans to disseminate information about HTCs that have successfully applied the six core elements. This resource is being used as a framework in the newly launched transition pilot study and is available to any HTC wanting to refine its transition program. 
 
Transition of Care Quality Improvement Pilot Program Is Underway
 
The goal of the new national pilot program on transition is to increase the capacity of HTC teams to implement and sustain quality improvement initiatives. The process being used has been developed by The Dartmouth Institute Microsystem Academy (TDIMA) and deployed globally for cystic fibrosis. Ten HTCs and eight coaches representing all regions are being trained to lead inter-professional teams at the HTCs to improve transition services. The teams will learn quality improvement methodology, including defining specific aims, change ideas and measures. The framework for testing change will use the Plan Study Do Act (PSDA) model for improvement. In the initial phase of the project, senior TDIMA coaches support the new coaches. This pilot program began in December and is based on an integrated experiential learning model of online and face-to-face learning sessions involving multiple inter-disciplinary HTC teams.
 
Pilot Sites and Coaches
 
Pilot Program Kickoff
 
A February face-to-face launch in Baltimore with over 50 participants was a great success. This learning session provided space where teams and coaches came together to engage in shared learning, networking, and discussion. The teams had a chance to work with their coaches on several improvement activities to prepare them to continue on the improvement journey once returning to their home base.
 
To prepare, the teams assessed their HTC from a system perspective starting with the frontline of care using what is known as the "5Ps" structure. This approach brings together what is known about the HTC's purpose, patients, professionals, processes and patterns. At the end of the learning session, the teams refined their improvement theme around transition and transfer of pediatric to adult care by developing a global and specific aim statement.  All HTC teams created detailed flowcharts of their current transition process and began to identify opportunities for improvement in the transition period and transfer process using a fishbone diagram. 
 

Example of a 5P data wall in Baltimore.
 
   
What Is the Focus of Transition QI?
 
Kick off Feedback
 
Coaches and pilot sites that participated shared feedback about the top three most beneficial aspects of the event:
  1. Face-to-face time between the coach, colleagues at other HTCs and their own team with plenty of opportunity to meet about the project
  2. A greater understanding of the diversity among centers
  3. An opportunity to engage in idea sharing with centers from around the country about transition issues and ways to help transition be successful.
Site Visits
 
An important element of this improvement pilot includes site visit by the coaches to each of the pilot HTCs. The purpose of the site visit is to build relationships with the improvement team members, meet the HTC teams, solicit support from organizational leaders, observe usual processes of care and teach and coach improvement science and methods. The coaches met with organizational leaders, patients and families and the HTC team to promote and support the great work the HTC improvement teams are doing. All HTCs have completed site visits.
 
Coaches Learning Session
 
In March, the transition pilot program coaches attended a Dartmouth coaching program face-to-face learning session in Boca Raton, Florida.
 

Coaches presenting at the coaching learning session in Boca Raton, FL.
 
 
Our next NHPCC Newsletter will include more information about what the ATHN coaches are learning, outline the progress of the pilot sites and announce the next opportunity to participate in the NHPCC national quality improvement initiative.
 
 
    



About the National Hemophilia Program Coordinating Center
 
In June 2012, the Maternal and Child Health Bureau (MCHB) in the Health Resources and Services Administration (HRSA) funded the American Thrombosis and Hemostasis Network (ATHN) to establish the first National Hemophilia Program Coordinating Center (NHPCC). The NHPCC is creating a national collaboration of stakeholders to identify gaps in diagnosis, care delivery and outcomes and to help standardize care, increase access to care and knowledge, share best practices and evaluate programs. The NHPCC is partnering with regional leadership, over 130 ATHN affiliate Hemophilia Treatment Centers, the National Hemophilia Foundation (NHF), the Hemophilia Federation of America (HFA) and other patient advocacy groups, federal government partners, 340B pharmacy programs, the genetics and newborn screening collaborative, payers and thought leaders to guarantee a community-wide perspective.


Funded through HRSA cooperative agreement UC8MC24079