Stacy E. Croteau, MD, MMS
The National Hemophilia Foundation recommends that children with hemophilia start the transition process into adult care at the time of their diagnosis. Certain aspects of transition can be challenging for pediatric patients, as well as their families and health care providers. To streamline this difficult process, Stacy E. Croteau, MD, MMS, associate director of the Boston Hemophilia Center and assistant professor of pediatrics at Harvard Medical School, and colleagues developed the HEMO-milestones tool, which Croteau says is a critical resource for patients, parents and medical staff. Healio spoke with Croteau to learn more about the tool and how it can be implemented into practice.
The HEMO-milestones tool is really for transition readiness. It was developed because we realized that we did not have a clear process for documenting parents’ and patients’ understanding of hemophilia and whether young patients were acquiring the skills and knowledge that they needed to successfully become independent with their hemophilia medical care.
The tool itself comprises four core competencies that we would like our young patients to have before transitioning from a pediatric to adult hematologist. These four competencies — two cognitive competencies and two skill-based competencies — focus on disease basics. As part of one of the cognitive competencies, we want young patients transitioning into adult care to understand the genetic basis and inheritance of their diagnosis and to be familiar with the specific terminology for hemophilia and bleeding disorders. For the second cognitive competency, we want patients to understand at least the concepts of healthy lifestyle behaviors as well as their impact on patients’ bleeding disorder diagnosis. For the skill-based competencies, we want to ensure patients can obtain and administer therapy as well as communicate with the hemophilia treatment center (HTC) about bleeding and prevention. In addition to medical providers, we want patients to be able to communicate with family members or specific community members about their health history and medical needs. It is important that not all of their health information is stored only in mom’s brain or dad’s brain.
When developing the tool, we created very specific milestones that we hope either parents or patients can achieve within a certain age range. From birth to 5 years of age, most competency development is aimed at educating the parents and helping them understand more about hemophilia or the bleeding disorder diagnosis. Then as children grow older, the milestones start to focus on their own competency levels. Milestones are assessed each year during comprehensive clinic visits to ensure patients are making good progress towards their own medical independence. We need to determine what they know and how we are going to continue to build their skillsets to make them successful in each of those competencies.
Existing tools often focus on transition around 13 years or 14 years of age. One of the nice things about the HEMO-milestones tool is that we start at birth and recognize there are so many transitions in life. Just having a newborn with hemophilia is a big transition. Sending them off to daycare and getting them to interact with other adults who will be caring for them is a big transition. Even after children with hemophilia become adults, they will continue to go through many transitions. So, in addition to these competencies, this tool will help them see how being proactive and having anticipatory guidance can be really helpful.
Having a transition plan in place is really important for all of our young patients with chronic medical conditions. Even outside of hemophilia, transition efforts are happening for individuals with conditions such as diabetes, cystic fibrosis and congenital heart disease, in part because a lot of these disorders have historically been fatal for children before they made it to the adult side of the medical system. Now that we have better therapies and patients are surviving to adulthood, we have to prepare both the patients as well as the adult providers to be ready to receive them on the other end.
The reason our tool focuses on hemophilia is because we work at an HTC, so the majority of patients we see have the disorder. We recognized that this is a special group of patients with a lifelong clinical need, so we must help prepare those individuals to advocate for themselves in the medical system.
Although the tool primarily focuses on hemophilia, some of the ways we adapted it certainly incorporate all bleeding disorders like von Willebrand disease, for example. There are patients with mild type 1 von Willebrand, but patients with more severe type 1 or types 2 or 3 similarly need more intensive management in the hematology group.
The tool was developed as part of a quality improvement project. We went through several iterations of using the tool in the clinic to tweak the age groups when some of the milestones occurred. Early on, we found that children were achieving some of the milestones at much younger ages. There were others we recognized that needed to be bumped to later ages. So, getting a better sense of the patients’ developmental progress was something that we learned.
We also found that, interestingly, the skill-based communication competency was one people seemed to struggle with the most. Many young individuals would always defer to mom or dad, even in late adolescence or early adulthood, to call the HTC if they were having a bleed or to call the pharmacy to reorder medicine supplies. As a result, the communication competency is the one that required the most structure, advice, encouragement and guidance.
Much of the tool has been refined. We added and tweaked some details within the different competencies and made some modifications to make it more user friendly for other bleeding disorder states. We are also improving the way we communicate information in the patient’s medical record documentation to update the pediatrician on goals and competency achievements, so we can pull in extra medical support. In addition, we are looking to make the tool more electronic rather than the current paper version that we use in the clinic so that more centers can access the tool and use it longitudinally.
A number of HTCs across the country have adopted the HEMO-milestones tool. The design of the tool allows certain milestones to be assessed by different care givers, including physicians, nurses and social workers. As centers begin to adopt this tool, I encourage them to recognize that the roles within the tool can be changed. So, if you do not have a routine social worker at your center, this role can be assigned to a different team member.
The competencies could apply to many chronic conditions. Although the exact impact of lifestyle behaviors and treatments may vary by condition, having a good pathway towards medical independence is critical.
When looking at data across institutions and disease types, everyone has a different model or tool for transition. We hope that we can provide a nice foundation and framework that would be easily applicable across HTCs and bleeding disorder centers, but even potentially adaptable to other disease states. That way, rather than having multiple different ideas and tools, we can start to harmonize the transition process. So, if I have a patient with hemophilia who initiated care with HEMO-milestones at my center, then that patient moves to a new area with a new HTC, he or she will receive care with a similar transition-readiness tool and will be familiar with the concept of that tool. Currently, I am coordinating efforts to facilitate this with different working groups on a national level.
Disclosures: Croteau reports no relevant financial disclosures.
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