Inpatient Genetic Counseling - Glenna Noska

When I first learned about genetic counseling during my last semester of nursing school, I was only aware of the three core outpatient specialty areas within the profession: prenatal, pediatrics, and cancer. It wasn’t until entering genetic counseling graduate school that I learned of the many subspecialty areas in the field. I wasn’t aware, for example, that inpatient genetic counseling even existed, let alone the possibility that I may really enjoy it. But after having the opportunity to spend time in inpatient during my pediatric clinical rotation, that’s exactly what happened.

According to an article published in the Journal of Genetic Counseling in 2021, Characterization of Genetic Counselor practices in inpatient care settings, over 130 genetic counselors (GCs) provide care in the inpatient setting. However, the exact number of inpatient GCs is unknown (Magness et al., 2021). For comparison, according to the National Society of Genetic Counselors 2022 professional status survey, the number of certified genetic counselors in the United States as of April 2021 is 5,629 (National Society of Genetic Counselors, 2022). But despite the relatively small number of GCs working in inpatient, there is no denying how valuable of a role they play as part of the patient care team. Among the many roles they provide, having inpatient GCs increases patients' access to genetic services and testing and provides patients at the bedside with valuable support and continuity of care. Their genetic knowledge and expertise also guide healthcare providers and helps ensure the most appropriate genetic tests are being ordered. Having inpatient genetic counselors’ benefits patients and their families and the healthcare system as a whole.

As genetic counseling students at Pitt, we have 9-week clinical rotations in prenatal, cancer, and pediatrics, which includes two weeks with the inpatient pediatric GCs at the Children’s Hospital of Pittsburgh (CHP). During my pediatric rotation, I observed inpatient clinical rounds with the Geneticist and was given the opportunity to provide patients with pre/post-test counseling, genetics education, result disclosures, and psychosocial counseling.

I found my time in inpatient to be challenging, given the reduced preparation time as compared to outpatient, but also incredibly rewarding for its fast pace and multidisciplinary approach. I enjoyed having to think quickly on my feet and loved the opportunity to provide one-on-one counseling to patients at the bedside.

Still, my experience inpatient was only two weeks. For more insight into what it means to be an inpatient GC, I spoke to two from CHP who have been at it much longer than I have: Leslie Cyprych, LCGC, and Linford Williams, LCGC. Here’s what they had to say about inpatient genetic counseling:

What is an average day like for you as an inpatient genetic counselor?

Linford: Day to day on inpatient varies so much. Often it includes seeing around 1-2 new consults or new patients (on average), checking in on some patients you've seen earlier who are still admitted to discuss their thoughts on the recommended genetic testing, speaking to families about genetic testing results.

Throughout every day we're communicating with various other hospital teams as well such as ICU teams (ex – NICU, PICU), specialty teams (ex – cardiology, neurology) or general pediatrics teams.

Leslie: The genetic inpatient genetic counselors are the "first call" for genetics from 8a-4pm, so we carry a pager and a cell phone and triage calls throughout the day. Whenever a team in the hospital thinks their patient could have a genetic condition they page us, we prep the chart, and go see the patient. From there, it's pretty similar to an outpatient genetics appointment… you're just usually standing up at a patient's bedside rather than sitting across a table from them. We work alongside our geneticists to make sure the patient gets appropriate testing and counseling for whatever the concern is that has them admitted to the hospital.

We also field calls from all sorts of other folks who might be paging the Genetics service… Pediatricians and other doctors who have questions, labs with urgent results (like an abnormal newborn screen), and families who need to speak with a geneticist immediately.

In any time that I'm not actively seeing a new patient or handling incoming calls, I follow up on patients who have left the hospital by doing results disclosures, writing notes, and helping to get them established with our outpatient team for follow-up.

What is your favorite part of being an inpatient genetic counselor?

Linford: There are two aspects of this role which I enjoy a lot. One is the flexibility in terms of time you get to spend with a patient/their family. Unlike outpatient, we're not necessarily bound by any schedule, so we're able to meet with families for as long as or as many times as they need to fully process our discussions. There are many families that I've met several times to talk through their thoughts on genetic testing or any abnormal results for their child. I often find that I'm able to build much more rapport and meaningful relationships with inpatient families because of this.

Second is the variety. Every day on inpatient is different from the next. By nature of the position, you get exposed to numerous patient indications, diagnoses (common and rare), and different situations that families are in. It both keeps you engaged and grows your skillset quickly.

Leslie: I love the teamwork aspect of inpatient care. I interact daily with so many different specialists, nurses, dieticians, social workers, and more. I have learned so much in this position and have made so many wonderful professional connections.

I also really appreciate the opportunity to work with this specific patient population. It's a real privilege to be able to support families during such a vulnerable experience.

What is the most challenging aspect of being an inpatient genetic counselor?

Linford: The most challenging part is balancing all the demands on busy days and determining what can and can't be done in a day. Triaging each family's needs can be difficult because every patient and family we see is in some level of crisis that they haven't necessarily been in before. It's natural to be empathetic to each situation and hard to sometimes not try and do it all to not overwork yourself.

Leslie: Time management for sure! Since the inpatient genetic counselors are the first ones who get calls throughout the day, it's our job to triage a lot of the workflow for the day. For example, if you get more than one consult in a day, you need to be able to decide which one you're going to work up and see first. All while your pager keeps going off! It's one big rolling to-do list!

What advice would you give to students wishing to pursue a career in inpatient genetic counseling?

Linford: Inpatient genetic counseling is an evolving field and looks different across each institution and specialty. Sometimes the breadth of the role is also determined based on the administrative support of the institution.

The newly formed inpatient SIG is a great place to start getting some information about the ins and outs of inpatient genetic counseling across the specialties. Otherwise, I would advise purposefully seeking out positions which have some aspect of inpatient in the job description or advocate for that role when interviewing.

Finally, although you can never be fully prepared for what inpatient can throw at you, I would also advise starting with outpatient as a new grad (at least some of the time) to have a good foundation. Inpatient often involves quickly applying a knowledge base of genetic conditions as well as some of the ins and outs of the hospital you're working at to be the most successful, both of which come with some work experience. In an outpatient setting, this knowledge can be gained in a less time-sensitive manner.

Leslie: Try to get exposure to the specialty. We are very lucky at Pitt that inpatient experience is built into the pediatric rotation. I'm not sure I would have ever known this was a possibility if I hadn't had been part of Pitt's training program.

Other ways to get exposure would be to seek out inpatient counselors (ex: on the NSGC website), and joining the inpatient special interest group (SIG) within NSGC. The inpatient SIG is fairly new, but it has been a wonderful connection to other inpatient GCs so that we can share experiences and grow the specialty. The SIG also has a lecture series, which is great!

According to Magness et al. (2021), of the genetic counselors who work in the inpatient setting, 50% had not had exposure to inpatient genetic counseling during their graduate education. Gaining exposure to inpatient genetic counseling introduced me to a specialty area I didn't know existed, and it is a specialty I can see myself pursuing. Without this opportunity, I don't think I would have known that, and I am incredibly grateful that, as a student at Pitt, I had this unique opportunity.

I want to thank the Pitt GC program and the CHP pediatric genetics department staff, including the genetic counselors and physicians. I also want to thank Linford and Leslie for their willingness to provide their time and insight into this unique specialty.

Link to Inpatient Genetic Counseling SIG for more information:

https://www.nsgc.org/Members/Special-Interest-Groups-SIGs/Inpatient-SIG

References:

Magness, E., Magoulas, P., Moscarello, T., Ma, D., Helm, B. M., & Mizerik, E. (2021). Characterization of genetic counselor practices in inpatient care settings. Journal of Genetic Counseling. https://doi.org/10.1002/jgc4.1401

National Society of Genetic Counselors. (2022). NSGC > Policy, Research and Publications > Professional Status Survey. Www.nsgc.org. https://www.nsgc.org/Policy-Research-and-Publications/Professional-Status-Survey

Student Spotlight - Kate Cioffi

After a year of coursework, my classmates and I were eager to begin our clinical rotations. My first rotation block was in cancer genetics, a specialty that is particularly dear to me as I am a Genetic Counseling Assistant at the UPMC Hereditary GI Tumor Program. Although there is always a level of anxiety that comes with starting something new (the transition from didactics to clinicals is certainly a significant one!), I learned an incredible amount in just nine weeks.

During the rotation, students split their time between the UPMC hospital system and Allegheny Health Network. This serves to enrich the student experience as it enables us to be exposed to a variety of counseling styles, patient populations, and indications. It’s also valuable to observe how processes and workflows differ between health systems, especially given the fact that students will likely be spread throughout the country after graduation.

Students start small by initially taking on certain parts of the session and working their way up to complete the entire session by their fifth week. Though this may sound fast, with the support and feedback from supervising genetic counselors, this goal is more than attainable. In my nine weeks on the rotation, I saw patients with a variety of indications beyond those that are considered more typical for a cancer genetics clinic, like Hereditary Breast and Ovarian cancer. I counseled patients with suspected conditions ranging from Gorlin syndrome to Von Hippel Lindau disease. Students also spend three days in the Hereditary GI Tumor Program, gaining additional experience with hereditary GI cancer syndromes like familial adenomatous polyposis. There, we also observe the physician, Dr. Randall Brand, work with patients to gain a broader perspective of these patients’ clinical care.

Another important aspect of the rotation are the weekly clinical case reviews, wherein counselors and students present their upcoming cases. We discuss plans for each patient and get input from the team regarding differentials, testing approaches, and more. I found this helpful in improving the way I communicate with other providers and learning to identify the most critical parts of a case for review.

In all, I really enjoyed my time on the rotation. I appreciated being able to work with many different genetic counselors and glean bits of wisdom from each. It was rewarding to be able to work with so many different patients, who all had different stories and motivations for coming in to see us. Though I consider cancer genetics to be a bit of a “safe space” for me given my background, I’m excited to begin my rotations in other specialties and learn everything I can from the amazing genetic counselors we have in Pittsburgh!

Student Spotlight - Samantha Runa

A study done in 2018 noted that graduate students are 6 times more likely to suffer from mental health issues than the general population, and being a part of that cohort, it is really no surprise. With an average age at about 28, many are balancing school, family, work, and overall life while also trying to maintain good grades and attaining the goals set out by their individual program. A time where students should be celebrating their accomplishments and drive for trying to achieve their goals can be overshadowed quickly under the mounds of responsibility and stress that comes with their dream program.

Genetic counseling is no exception to the rule. As many will tell you, the stress begins with applications and for many that get in, it continues into the first and second year. Establishing support and boundaries is key when you take your first step into the world of being a genetic counseling student. I struggled for so long in undergrad without help that I thought once I moved on into graduate school, I figured that I would be fine. I survived the first time, so I should easily survive this time. However, surviving isn’t what you want to do in grad school, you want to thrive. You achieved so much to get where you are that hating every moment, dreading school, dreading social encounters, isn’t a sustainable way to continue throughout your two (or more) years.

The past two years of graduate school, I have learned so much about how to both put my mental health first and strive to thrive as a budding genetic counselor.

      1.     Set Time Boundaries for yourself

     It is so easy to spend hours upon hours studying, prepping, and/or doing homework. And it is easy to spend hours upon hours binging Netflix all day. Everything is perfect in moderation and a skill I started doing to give me more agency in my life and to alleviate stress is to set boundaries for myself of when I want to accomplish things and listening to my body/brain when rest is required. I have learned that being on campus is where I will accomplish most of my work, so going to study 2 hours before class time is key. I have also learned that I need to relax a couple of hours after being in clinic all day, so if I spent a couple hours watching something, I can better relax for studying later in the evening.

      2.     Both Thank and Forgive yourself

      Struggling with anxiety has really forced me to address my body and my brain as separate entities that I am not at war with. Anytime I get a panic attack I try (and sometimes fail) to not focus on the why, but sit and thank my brain and body for trying to protect me. And in the same tone, if I decide that I cannot focus on homework for the day and really just need the time to read a book, I work on forgiving myself and not spending hours going through self-loathing spirals. As weird as it sounds, this simple task has provided validation for my feelings and provided me the space to learn that the anxiety I feel is a part of me that I am not trying to hide and get rid of, but rather something that is always a part of me.

      3.    Find a therapist that you Enjoy and Utilize your School’s Resources

      None of the above would be working for me if I didn’t seek outside help first. When I began my spiral, I couldn’t even leave my house, and it took me a bit to realize that I couldn’t survive this on my own this time. We are very fortunate at Pitt to have mental health resources that are free to students, and that includes meeting with a therapist. My therapist is an amazing human being that has helped me move from crying everyday before class to going out with friends on a regular basis. I know that seeking help is difficult, but my suggestion is to look at your school’s mental health resources before you start, and get yourself set up with a therapist you enjoy. Asking for help is the scariest first step, but it is the most necessary one.

      4.      Do Self Care … whatever that means for you

    Although I would love to say I like my alone time, I find myself thriving after spending time with friends. At the same time, I love to be able to take an hour-long bath and watch a movie with candles going. There are also weekends that I choose to spend 4 hours cleaning my whole apartment, because the process is so cathartic and cleansing for me. This is all a long way of saying do what fuels you and makes you happy (as long as it is not self-destructive) and make sure you do it as often as you can. Don’t wait until you are alone, on the verge of tears, to practice self-care. Do a little every day, and your body and mind will thank you.

Grad school is supposed to be an exciting time in your life, where you focus in on your goals and aspirations, and achieve them in awe inspiring ways. But you cannot do any of the amazing things you are destined to do while struggling. The best part about being in GC school is that you are surrounded by individuals who are right there alongside you and are being supported by those who just want to see you succeed. Being surrounded by my cohort has made is easier to seek help and has made it easier to talk about when school and life are tough, but their support and the support that I have found for myself has allowed me to grow and be a better GC in the future.  

The Pitt Genetic Counseling program seeks to support students through mental health issues.  Our program emphasizes setting professional boundaries and self-care.  Program leadership emphasizes their support for students on an individual level.  The University of Pittsburgh provides resources to students, including graduate students, such as the University Counseling Center (UCC), access to recreational facilities, and the Stress Free Zone (SFZ). In addition, the program has a policy on timely access to support services.

Student Spotlight - Rebecca Oberschmidt

During my undergraduate time at Pitt, I stayed in Pittsburgh for one summer and learned about all the events and things there are to do during the summer in Pittsburgh.  I am so excited to spend another summer here during graduate school, and here are some highlights.  

My classmates and I went to a Pirates game one weekend and got to see some fireworks afterwards (pictured below).  It’s a short ride on public transit, and the view from the stadium is amazing, as it has been called one of the best places to see a baseball game.  The fireworks are set off from the Allegheny River just outside the stadium so the breeze feels nice in the summer.  In Shadyside, Walnut Street is a great area with restaurants, bars, and shopping.  Throughout the summer, they have events like the Arts Festival and Jam on Walnut, an outdoor concert series which was our first hangout as a class last August.  There are several large events that take place over the summer, with my favorite being Picklesburgh.  You guessed it - the theme of this event is all things pickles!

Pittsburgh’s many parks have tons to take advantage of during the warmer months.  There are disc golf courses, hiking trails, and great picnic spots to enjoy that are just a walk or bus ride away.  Lots of events happen in them too, from live music concerts to movie screenings.  Pitt offers discounted tickets to different shows and events in the Cultural District.  I went to see the Pittsburgh Symphony Orchestra recently and we got great seats to a great show.  During the school year, a lot of the museums and other spots (like Phipps Conservatory, and our trip there is pictured below) that require admission fees are free for Pitt students.  There are outdoor concert venues in the city and a short drive out of the city.  My classmate Madalyn and I saw the Jonas Brothers when they came to the Pavilion at Star Lake last year, and it was such a great night!  My parents and I also took a trip to Fallingwater and Ohiopyle, which are about an hour outside the city.  Fallingwater is one of the houses designed by Frank Lloyd Wright and is built on a waterfall, so it was beautiful with such interesting architecture.

All in all, Pittsburgh is a great place to live, and with some more time on our hands and the weather in our favor during the summer, we get to enjoy more of what the city has to offer.  There are so many things to take advantage of as a Pitt student, so I am happy that I got another chance to check some things off my Pittsburgh bucket list!

Student Spotlight: Ariel Breeze

Transitioning into clinical rotations has been a component of the program I have been looking forward to since as early as the application cycle. I started my rotation block with pediatrics at the Children’s Hospital of Pittsburgh, which has proven to be an incredibly rewarding experience in such a brief period. Prior to rotations beginning, I was paired with a genetic counselor working at the hospital who has provided me with significant guidance throughout the rotation, helping me to find certain types of conditions and appointments to shadow or participate in and helping to build my confidence and comfortability.

Pediatrics at the Children’s Hospital of Pittsburgh provides a truly unique experience with a host of opportunities outside of the typical clinical indications you anticipate seeing. Specifically, everyone who rotates at Children’s is given the opportunity to see three specialties beyond typically pediatric cases: inborn errors of metabolism (IEM), lysosomal storage disorders (LSD), and inpatient. The IEM component of the rotation involves seeing patients with a physician, a nurse specialized in metabolic genetics, a dietician, and a genetic counselor depending on the indication. You may also observe an abnormal newborn screen if the opportunity arises while in this portion of your clinic experience. As each student is provided with the opportunity to choose an optional rotation experience, I have elected to pursue mine in the newborn screening and IEM space especially given my interest in public health screening initiatives as a dual-degree student. The LSD component of the clinic allows students to see these patients both in an outpatient setting and while they are receiving enzyme infusions, one of the treatment types that works most effectively in these patients. We also spend two weeks seeing inpatient cases, which involve patients having been admitted to the hospital that have had genetic consults requested. These cases arise spontaneously and are both fascinating and rewarding. I have had the opportunity to observe one inpatient case during my rotation block thus far, and the entirety of the session feels vastly different than a typical outpatient case from the pedigree creation process to the discussion of genetic testing. Parents are exhausted and, understandably, scared, and this provides an opportunity to really put those counseling skills to work and help these patients as much as possible despite the tense environment.

Additionally, any students interested in other opportunities can spend their time at Children’s seeing patients in the pediatric cardiogenetic clinic, the pediatric cancer predisposition clinic, or at satellite clinics serving Plain communities in Hermitage or other hospitals in Wexford and Monroeville. Personally, I have made time in my rotation block to see pediatric cardiogenetics patients considering my wide interest in cardiovascular conditions. I learned so much during these cases, and despite being a pediatric case at Children’s as well, the workflow for these cases looks vastly different than what you will see with typical outpatient experiences. Generally, these patients enter will enter their appointments already aware of the sort of condition they likely have, allowing for more tailored sessions of the genetic condition being considered and the inheritance pattern of these conditions (for example, Long QT syndrome).

Transitioning from a full class load into full-time rotations has certainly been an adjustment. While I find myself as busy as ever, looking through my patients’ medical histories in preparation for sessions feels important and rewarding. Though I have just started my rotations, I have already learned so much and my supervisors have provided me with several tips to help me hone my genetic counseling skills. The types of indications you will see in pediatrics is so broad that you end up learning so much simply by talking to your patients that you would not necessarily read about otherwise. Rarely does the amount of time spent feel like a chore when there is so much to look forward to during these rotation blocks. Pitt offers a rich variety of clinical rotation experiences even housed within the typical core rotation blocks, and so there is truly something for everyone throughout your time spent in the clinical setting.

Student Spotlight: Elise Williams

I am a dual degree student in the Genetic Counseling and Public Health Genetics programs and in addition to the offering the dual degree plan option, I was drawn to the Pitt Genetic Counseling program’s model of clinical preparation called the “Confidence-Building Model”. We go from in-class learning and observing patient sessions to having simulated patient sessions before we start our clinical rotations. I have recently started summer clinical rotations and I have been reflecting on just about how far my class and I have come in less than a year!

The confidence building model is an educational framework that gradually provides us with skills and the space to try new things as we get more comfortable with transitioning from classroom learning to clinical work. We focus on classroom-based learning our first semester, transition to clinical education and simulations in our second semester, and then start clinical rotations in the summer before our second year. Starting with classroom learning gave us an educational foundation of genetics. As we all come from different backgrounds prior to joining the program, these courses helped us have a good starting baseline knowledge of genetic counseling.

In the second semester of the first year, we start observational rotations where we can observe pediatric and cancer genetic counseling sessions. Being able to observe these sessions helped me learn some things that are difficult to learn in a classroom, such as the structure of the different sessions, what the flow of a clinic looks like, and where I can keep my lunch! During the last month of our second semester, we also had an amazing opportunity to have simulated patient sessions. Each week for four weeks, we have the patient actors simulate a genetic counseling session. We divide the session up among a group of students to practice our genetic counseling skills and have the chance to ask them questions. These simulated patient sessions helped me feel more confident about presenting genetic information and helped me learn how to co-counsel with my classmates, which will be important in clinical rotations as we work with other genetic counselors to complete a patient session.

Our clinical rotations start in the summer, so I am currently in my third week of rotations (ever) in Prenatal genetics. Each day, I am learning new ways of counseling and given opportunities to try new things in patient sessions. Yesterday, I was discussing how a session had gone with a genetic counselor mentor. I told them that I felt I could have done a better job explaining a topic but that it was the first time I had discussed that topic with a patient. “You did fine!” they said, “that’s genetic counseling; you just practice, and practice, and you will change things a little bit each time you meet with a patient.” So, when will I have enough confidence to complete the model? This conversation made me realize that when you choose a career in genetic counseling, there is no end to the confidence building model! With constant adaptation of counseling styles as we have new experiences and learn new things about genetics, we will always be growing and changing to have the privilege of helping meet our patients’ needs.

Student Spotlight: Carolyn Maxwell

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) is a graduate-level interdisciplinary training program focused around improving the health of people with disabilities. I have always been interested in how interdisciplinary teams work together to provide the best care for a patient, and I thought of LEND as an excellent opportunity to learn from other healthcare providers' perspectives.

I was interested in LEND, but I was also worried about overloading my plate. I am a dual degree student, and I have a job as a clinical research assistant; suffice to say, I am busy enough. When Jodie discussed these opportunities through LEND, she explained a new program they were piloting called the Medium Term Traineeship (MTT). The MTT would allow me to pick LEND learning modules I was interested in and participate in a long-term project. To complete the MTT, you participate in at least 40 hours of LEND events and attend two monthly MTT meetings.

I completed the MTT through LEND this year, and it was such an impactful experience. I entered the MTT expecting to learn about interdisciplinary teams and their perspectives to enhance my practice. What I actually learned about were transdisciplinary teams, in which the family and their input are integral in all health decisions. In LEND, there are trainees such as speech-language pathology, occupational therapy, and many more health care disciplines. Importantly, families are also trainees in LEND who attend all the classes and participate in the events. These families have a child with a neurodevelopmental disability or themselves have a disability. The family's perspectives challenged how I approached problems and enhanced my understanding of the challenges and the joys of having a child with a neurodevelopment disability. The MTT enhanced my knowledge of so many topics we discussed in our coursework and will impact my understanding in clinical as well.

For more information about the LEND program, check out:
https://www.lend.pitt.edu/