Explain the situation/event.
Dawn Canada began forming a transition program for the Hematology patients at Children’s Hospital Los Angeles together with Anne Nord and Dr. Baskin in 2011. The program was initially focused on our patients with Sickle Cell Disease but has since expanded to work with patients with various rare blood disorders that have not previously been not adequately prepared for adult medical care. By following the existing online “Got Transition” program with adjustments to meet the needs of our Hematology patients at Children’s Hospital Los Angeles, the team was awarded funding through the Rauch Family Foundation for a nurse navigator position to assist with the transition, began a QI project looking at the effectiveness of the Hematology Transition Guidelines, and set up a transition clinic for adolescent patients to assist in the education and guidance needed for transition.
Since its founding, the PASSAGES Transition Program added members to the core group and together developed a 2-pronged approach to transition. The first prong consists of developing an adult provider network by vetting and building relationships with adult Hematologists so that the PASSAGES Program can serve as a bridge between adult service provision and the expertise that exists in the pediatric hematology section at CHLA. The PASSAGES Program provider network currently has 9 adult providers from the LA area. The second prong is an education program. Every other month, the PASSAGES team holds a transition clinic for patients aged 16 and older to review their medical histories and current disease knowledge in order to better prepare them for the transition to adult medical care. The preparation and education are specifically designed for each patient’s particular medical and developmental needs.
We have conducted 18 transition clinics to date:
70 patient visits total
37 new patient visits
33 follow up visits
36 visits with sickle cell disease patients
29 visits with thalassemia patients
5 visits with marrow failure patients (e.g. aplastic anemia and Diamond Blackfan anemia)
Overview of the PASSAGES Team accomplishments so far in 2017:
• National and International Presentations:
-April 2017 - American Society for Pediatric Hematology/Oncology (ASPHO) national annual conference in Montreal, Canada. This presentation was regarding a study completed in adult patients with sickle cell disease and was well received. Our approach was recognized as clearly different than any other transition approach.
-October 2017 – Sickle Cell Disease Association of America (SCDAA) 45th Annual Convention – Atlanta, GA – Dawn Canada, LCSW presenting
-November 2017 - 14th International Conference on Thalassaemia & Haemoglobinopathies & 16th TIF International Conference for Patients & Parents – Thessaloniki, Greece - Michelle Lahat, LCSW presenting
• We were selected to represent CHLA in its application for the prestigious Magnet Recognition Program, and are one of only three programs that were selected to represent excellence in inter-professional collaboration.
• In addition to the initial funding for program support from the Rauch Family Foundation, we obtained funding from the Italian Catholic Federation and initiated a consulting contract with Laurice Levine, an expert in thalassemia advocacy and outreach. She will lead the effort to inaugurate a transition newsletter, overhaul the CHLA Thalassemia website so that it is patient-friendly and highlight the PASSAGES transition program, and maintain an ongoing relationship with the Italian Catholic Federation.
• We met with California Assembly Member Laura Friedman to discuss health insurance challenges faced by patients with rare blood disorders and discuss strategies to overcome these barriers through policy reform.
Explain how the project supports CHLA values
Achieving our best together:
The Hematology Transition Team has this value at the core: Very few decisions have been made by one person independently. Dawn Canada brought together nursing and physicians to discuss the formation of the team, future program, and grant writing from the very beginning and has continued to have multiple meetings on a weekly basis. All of the disciplines come together to proof-read hand-outs, guidelines, Powerpoint presentations, and evaluation tools at every step of the process. Each individual and discipline has been valued as experts in their particular contributions to the team.
Being hopeful and compassionate:
The goals of the Hematology Transition program encompass the values of being hopeful and compassionate. By looking for adult providers who will provide competent care to our patients with complex medical care is by very nature hopeful. By keeping our patients’ best interest at heart, the team is adding many more responsibilities to our workload ensuring as successful and smooth a transition process as possible. Prior to the transition program, patients would age out of the system at Children’s Hospital Los Angeles without preparation and would struggle to find competent Hematologists that would accept their insurance. This situation would come to them as a shock and they would not be prepared for a crisis.
Many patients learn they have aged out after age 21 when they are not approved to be admitted to our hospital for pain crises or other issues and need to go elsewhere where the medical team was not familiar with their presenting condition. By educating and preparing our patients as well as reaching out to adult Hematologists in the community we are being compassionate to those we serve and their changing needs as they grow older. Our team remains hopeful that with our help, our patients will be able to find appropriate adult medical care in the community as well as keep our families hopeful that transitioning away from Children’s Hospital and the physicians who have kept our patients alive and thriving will not result in negative outcomes.
Learning and leading transformation:
Despite all of the obstacles and heavy caseloads that our clinicians face on a daily basis, team members sought out knowledge about pre-existing transition programs and worked together to determine best-practices in medical transition.
In addition, we learned from our stakeholders- the patients and families. By creating a measure inquiring about families’ prior knowledge and desire for assistance regarding medical transition, we were able to establish a need for the program. Committee members remain knowledgeable and competent in up-to-date information through the CHLA AYA Transition Working Group.
Finally, by having a retreat to inform and seek input from fellow medical team members- the transition team is leading the transformation of the way we care for our adolescents and young adults. Through our QI project results as well as analyzing the data we will collect evaluating the effectiveness and usefulness of our transition clinic and curriculum- hopefully we will be able to lead other medical teams both in CHLA and in the greater medical community.
Being stewards of the lives and resources entrusted to us:
Parents learn that as children grow it is important to grant them the skills to grow up independently and become independent in the adult world. Such is the challenge the Hematology Transition Team has taken upon itself. A core facet of the purpose of our team is that we understand that providing medical care in Pediatrics is not only about caring for the patients while they are in our care, but also to prepare them to live long, healthy lives and thrive as adults. Without preparing our patients for the inevitable medical transition, we are harming our patients and preventing them from thriving. Thus, the transition team is working speedily forward to inform and prepare patients and family as much as possible.
Serving with great care:
Starting a transition clinic in addition to regular Hematology clinic appointments will allow for each of us to talk to our patients and families of individualized patients to make sure that we are working together to make decisions that are the best for them so that we avoid unwanted consequences from this complex process. We take this issue and the sensitivity and vulnerability of the lives entrusted to us seriously and therefore have blocked out what would otherwise be precious clinic time to ensure we are giving the appropriate attention to our transitioning young adults.
Explain how each team member played a role in the event:
Dawn Canada initiated the program from the beginning and coordinates the meeting and decides on the tasks required for the program. Anne Nord and Dr. Baskin have been essential in grant writing and forming the role of Nurse Navigator as well as guiding the process for the guidelines, clinic, and assessment measures to be used. They also were able to present their ideas to CHLA administrators and board members which allowed us to get funding for the program.
The rest of the core team has divided responsibilities for organizing the Transition Program retreat, planning the structure of the future transition clinic, and preparing the hand-outs for the program consisting of informational fliers, working with marketing and communications, getting items translated and literacy-level approved, making contact sheets, and providing Dawn with input on each step of the process.
The guidelines subcommittee worked meticulously to write the drafts of the guidelines and discuss the necessary elements as well as edit and acquire translation and literacy level approval for them. In addition, they created the approved pre- and post-tests to be used to collect data for the QI project.
Describe the results achieved.
While the long-term results of the project are yet to be seen, so far the preliminary productivity and successes of the team are many. The team received funding for a new Nurse Navigator to assist patients and the medical team in creating safe and successful transition plans to adult medical care. In addition, the team created guidelines and pre- and post-tests for the guidelines that were accepted as a QI project by the PCS Quality Council. Lastly, the team has already successfully created a transition clinic to provide patients with necessary education and guidance.
There are still many tasks ahead for the team, but so far the Hematology Transition Program has moved forward because of the remarkable interdisciplinary cooperation that has taken place in order to better serve our patient population.