My Specialty

Pediatric Hematology Nursing: Interview with Lisa Pullens, RN, BSN, CPHN

Focusing on hemophilia, sickle cell disease and other blood disorders

By Keith Carlson, RN, BSN
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Lisa Pullens, RN, BSN, CPHN
City of Hope, Duarte, Calif.

What is your nursing career history?
    I received my RN-BSN 33 years ago at Mount St. Mary’s College in L.A. and I’ve worked in pediatrics since my junior year in school. Pediatrics is my love and my passion. At Children’s Hospital L.A., I received a great deal of training and mentoring, working in rehab, ICU and other areas. I also gained additional pediatric ICU experience at Huntington Hospital in Pasadena, Calif.
    For the last 22 years, I’ve worked with the same hematologist, Dr. Nadia Ewing. We had a freestanding hematology practice near Huntington Hospital in Pasadena and then relocated to City of Hope almost 17 ago. It was quite a transition for me, from my acute care experience to the chronic illnesses that we treat in our practice. We specialize in non-malignant hematology, including bleeding/clotting disorders, sickle cell disease and other hematologic disorders. We work with individuals ranging from birth to about 27 years of age.

What are the clinical goals of your current workplace?
    We provide a combination of outpatient and inpatient care. The goal is to prevent inpatient stays with excellent preventive care. The outpatient visits include a great deal of patient and family teaching.

What are your specific responsibilities?
    I am a hematology/hemophilia/ sickle cell nurse coordinator. I coordinate patient care and provide teaching to patients and families. I facilitate patient and family appointments and follow-up and I take part in their clinic visits. Family follow-up and the connection to community resources are also very important.
    Additionally, I provide in-services to school staff, prepare letters and information for school nurses and health offices and assist our young adult patients with their transition to college. Finally, I perform autonomous nursing clinic visits for teaching  patients and their families.

What is it like when your patients transition to adult care from pediatrics?
    We care for many of our patients from birth until they are young adults. When they turn to adult care, it can be very complex. There are 141 federally funded comprehensive hemophilia/ hemostasis/thrombosis/sickle cell treatment centers in the U.S., and California has 11 of these programs. Some centers have combined pediatric and adult care and others — like the ones here in Southern California — can be more than an hour’s drive from where our patients live.
    Although it’s not always as smooth as we would like, we’re getting better at this transition. We want to improve continuity of care for our patients and their families, and one way we accomplish this is to begin preparing for this transition far in advance of it actually taking place.

What trainings or certifications are needed in your area of specialty?
    There is a move to standardize the status of hemophilia nurse coordinators, but it’s not yet required nationwide. However, there is a series of courses that can be taken to achieve a hemophilia nurse coordinator certification or sickle cell nurse coordinator certification. Some facilities — especially those trying to achieve magnet status — may begin requiring these certifications.

What is gratifying about your work?
    What is most gratifying is the evolution of seeing our patients change, grow and improve over time. These disorders are genetic, lifelong and chronic in nature, unless patients are fortunate enough to be in that small minority group that has a successful match for bone marrow transplant. For some of the disorders, there is no cure.
    Watching these young people grow from infants to children, teens and young adults is quite a process. They move through cycles of anger, feeling different from their peers, and then become young adults who are independent and healthy. Seeing that independence manifest demonstrates the fruits of what my teaching and mentoring have done. Some days, it’s not what you would expect, but sometimes I get to witness a young adult patient truly gain their independence, raise a family and live on their own. That is very satisfying.

Is it sometimes difficult to work with chronically ill children?
    Some young people need more handholding and some just never really make it there. It’s unfortunate, but for many reasons, some patients continue to rely on their families for support. There are so many areas that are difficult for patients to navigate. It’s truly a family affair.
    Few young people succumb to these illnesses, but it can be difficult to witness when it happens. A minority of patients fare very poorly due to inadequate self-care, suboptimal lifestyle choices or sometimes from unforeseen circumstances. Still others fall off the radar and we don’t have the follow-up that we would like.

Have you seen many changes in the management of these diseases over the years?
    When I started working with this population 22 years ago, it was at the peak of the AIDS epidemic and it was very difficult to see patients deteriorate from HIV and AIDS. We really had to support the families, provide education and make important changes so that this would not be the ultimate outcome for children in need of blood products.
    Many hemophilia patients can now infuse their factors and products at home with great independence. This advance has made a world of difference for our young patients in terms of living a more normal lifestyle that’s not so focused on multiple clinic visits and hospitalizations, disrupting the patient’s daily routine.

What future do you see for yourself, professionally speaking?
    There are many community resources that can be improved and the education of community physicians and facilities about these disorders is crucial. I would like to be involved in these areas of growth. There are many students who need support, and the arena of educating school nurses about this patient population is another area that holds great interest for me. These are areas where I see growth and room for more focused attention and coordination.
    Even within this small subspecialty, there are areas where there are many interesting research opportunities. However, I still have a passion for the direct patient contact, so I’ll continue where I am for the foreseeable future.   

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