PENS 2019 Reporter

PENS

Reporter

VOL 31

President’s Report To my PENS colleagues and friends.

In This Issue 1 President’s Report 3 N ew Faces of PENS Leadership 4 PENS Award Winners 10 Highlights from PENS 2019 National Conference 11 C linical Exemplars 20 Captured Memories from PENS National Conference 22 Education Committee 22 Membership Task Force 23 Nomination Committee 24 Research Committee 25 Have you joined the PENS E-Community 26 A Perspective from the Other Side of the Table 27 First Endocrinology Nursing Textbook Launched 28 Spotlight on X-Linked Hypophosphatemia (XLH) 4400 College Blvd., Suite 220, Overland Park, KS 66211 913.222.8657 877.936.7367 FAX: 913.222.8606 PENS@ kellencompany.com www.pens.org

A few months have passed since our National Conference in Long Beach and I feel like I’m finally recovering. For me, our conference is a wealth of information, renewal and nurturing of friendships, and welcoming new and first-time members. This year, we had more than 50 new members and first-time attendees come to the conference. I had a chance to interact and meet many of them at our new member/First-time attendee reception as well as throughout the conference. I was very interested in the reasons why a new member would come to conference and what their expectations were. The most common reasons that I heard were: to meet nurses who were also in pediatric endocrinology; and to learn as much as they could to help take care of their patients.

It is our responsibility as an organization to continue to foster and help our new members in their pediatric endocrinology role. We can do this by continuing to offer educational opportunities either through our webinars, education information and links to updated educational resources that are online, and continuing to offer a wide variety of information at our National Conference.

What else can we do as individual members of PENS to help to retain our new members as well as recruit new members.? We can be mentors for those new pediatric endocrinology nurses in our practices, we can show them our website and educational information included, we can remind them of our financial assistance with travel grants for the conference, and inform them of the academic education awards and research grants. We can utilize the communities area of our website to ask questions and share information. We all learn when others ask questions.

We can share information about PENS within our institution as well as other meetings that we may be attending, both diabetes as well as endocrine disorders. I was so excited to see our new logo and our new tagline: advancing endocrine and diabetes care. As an organization many years ago we recognized that our members were caring for patients with diabetes as well as endocrinology disorders. We continue to offer a diabetes track and our diabetes workshops are very well attended. By adding diabetes to our tag line we expand our recognition as a nursing organization that is welcoming to nurses working both endocrinology and diabetes.

I am excited to be starting my term as president of PENS. This is YOUR organization and I am open to any suggestions or recommendations you may have.

Sincerely, Cathy Flynn RN, APRN, CDE 2019-2021 PENS President

An annual publication of the Pediatric Endocrinology Nursing Society

PENS Reporter

Summer Edition, 2019

2019-2020 President-Elect Catherine Flynn, RN, MSN, APRN, CDE Treasurer Margaret (Meg) Keil, PhD, CRNP Secretary Tamara Nenadovich, RN

Save the Date

Director Rebecca Crespi, BA, RN, MSN, CPNP, CDE Director Maureen Dever, MSN, PPCNP-BC, CDE Director Jan M. Foote, DNP, ARNP, CPNP Executive Director JerrieLynn Kind, Executive Director/Ex-Officio Board Member

2020

National Conference

The PENS Reporter is published quarterly by the Pediatric Endocrinology Nursing Society (PENS).

Views expressed herein do not necessarily reflect the opinion of PENS. Copyright © 2019 Pediatric Endocrinology Nursing Society Editor Tammy Nenadovich, RN PENS Executive Office 4400 College Blvd.

Suite 220 Overland Park, KS 66211 Direct: 913.222.8657 Toll Free: 877.936.7367 Fax: 913.222.8606 Website: www.PENS.org

April 29-May 2, 2020 Hyatt Regency Hill Country San Antonio, TX

Copy Submissions Please submit all future articles or items by e-mail to Tammy Nenadovich at nenadot@gmail.com.

Subject: PENS Reporter Item

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PENS Reporter

Summer Edition, 2019

New Faces of PENS Leadership The following members were elected in our Spring Election:

Board of Directors Members Treasurer: Margaret (Meg) Keil, PhD, CRNP (re-elected)

Director: Rebecca Crespi, BA, RN, MSN, CPNP, CDE (re-elected)

Nominating Committee Members Courtney Robertson, RN, BSN, CPN, DNP-PNP Student

Margaret Garner, RN, BSN, CMCN, CCM

Thank you for taking the time to select your PENS leaders!

Current Board Members President Catherine (Cathy) Flynn, RN, MSN, APRN, CDE

Treasurer Margaret (Meg) Keil, PhD, CRNP

Director Jan M. Foote, DNP, ARNP, CPNP

Immediate Past President Cheryl Switzer, MSN, RN, CPNP, CDE

Secretary Tamara (Tammy) Nenadovich, RN

Director Maureen Dever, MSN, RN, CPNP-BC, CDE

Las Vegas, NV catkflynn1pens@gmail.com Term ends 2021

Lakewood, OH switzec@ccf.org Term ends 2020

Chevy Chase, MD megkeil20@gmail.com Term ends 2021

Port Charlotte, FL nenadot@gmail.com Term ends 2020

Des Moines, IA jan-foote@uiowa.edu Term ends 2021

Huntingdon Valley, PA maureendever123 @gmail.com Term ends 2020

Director Rebecca Crespi, BA, RN, MSN, CPNP, CDE Mount Kisco, NY beckycrespi@hotmail.com Term ends 2021

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PENS Reporter

Summer Edition, 2019

Congratulations to all the PENS Award Winners honored at this Year’s Conference!

During this year’s award breakfast, sponsored by our friends at Arbor Pharmaceuticals, we recognized several special members:

Informational Abstract Award

Case Presentation Abstract Award

Adrenal Insufficiency in Children: Teaching Nurses to Teach Caregivers

Suppression of Pituitary Axis from Inhaled Corticoteroids

Courtney Robertson, BSN, RN, CPN, DNP-PNP Student, Registered Nurse, Blank Children’s Endocrinology Clinic, Des Moines, IA

Susan Davis, RN, MSN, CPNP, Washington University, St. Louis, MO Jennifer Sprague, MD, PhD

Nursing Research Award

Initial Psychometric Evaluation of a Pediatric Diabetic Peripheral Neuropathy Screening Tool Joanne T. Moser, MSN, CRNP, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia, Philadelphia, PA; Terri H. Lipman PhD, CRNP, University of Pennsylvania School of Nursing, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia; David R. Langdon, MD, Associate Professor of Pediatrics, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia, Perelman School of Medicine at University of Pennsylvania; Katherine A. Montgomery MSN, CRNP, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia; Pantea P. Minnock MSN, CRNP, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia; Susan M. Dumser MSN, PCNSBC, Division of Endocrinology and Diabetes, The Children’s Hospital of Philadelphia; Katherine B. Bevans, PhD, Associate Professor, Department of Rehabilitation Sciences, Temple University College of Public Health.

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PENS Reporter

Summer Edition, 2019

Congratulations to all the PENS Award Winners Honored at this Year’s Conference!

Pediatric Endocrinology Nurse Portfolio Recognition

Novice Poster Award

Family History Plays an Important Role in the Diagnosis of Multiple Endocrine Neoplasia Type 2A

Maryann Johnson, BSN, RN, PEN

Courtney Kivel, MS, CRNP, Children’s Hospital of Philadelphia Division of Endocrinology and Diabetes, Philadelphia, PA

Excellence in Education Award

Shaylyn McDaniel, RN Children’s Hospital of Pittsburgh

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PENS Reporter

Summer Edition, 2019

Outgoing Committee Chairs

Kelly DeGrote, RN, BSN Conference Planning Committee Carol Howe, PhD, RN, CDE Research Committee Linda Burkett, MSN, RN, CDE Education Committee Maryann Johnson, BSN, RN Nominating Committee

Outgoing Nominating Committee Members

Mandi Cafasso, DNP, APRN Cynthia Lucio, BSN, RN, CDE

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PENS Reporter

Summer Edition, 2019

Research Grant Award - $15,000

Racial Disparities in the Use of Technology in Children with Type 1 Diabetes: Focus on Parents’ Perspectives Terri Lipman, PhD, CRNP, FAAN, University of Pennsylvania School of Nursing – Principal Investigator Jennifer Morone, MA-ATR, BSN, University of PA School of Nursing – Co-Investigator Carol Howe, PhD, RN, CDE, Texas Christian University – Co-Investigator

The following individuals received 2019 PENS Conference Scholarship Awards Clinical Exemplar:

Barb Lightner, APRN, CNP, CDE Hudson, Ohio

Poster Abstracts:

Crystal Muth, RN, BSN, CPN Pittsburgh, Pennsylvania

Gail Aikey, RN, BSN Anchorage, Alaska

Shelly Nicolls, APRN, DNP, CDE Sunrise, Florida

Rebecca Thompson, BSN, RN, CDE Swedesboro, New Jersey

Lisa Whipple, RN, BSN Phoenix, Arizona

Kristen Jennings, RN, CDE Santa Barbara, California

Susan Davis, RN, MSN, PNP Webster Grove, Missouri

Cheryl Green, RN, BSN San Antonio, Texas Mako Sather, MSN, RN, CPNP Littleton, Colorado

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PENS Reporter

Summer Edition, 2019

PENS Evening Event Supported by Novo Nordisk

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PENS Reporter

Summer Edition, 2019

We Are PENS and We Are Noteworthy!

SO STAND UP AND BE RECOGNIZED AND SHARE YOUR NEWS! WE ARE BRINGING BACK AN OLD COLUMN CALLED “MEMBERS IN THE NEWS” in our Insider Newsletter • Have you recently changed positions or received a promotion?

• Have you recently received an award related to your professional responsibilities or an academic honor?

• Have you recently been published?

• Have you recently made a presentation at a professional conference or a meeting?

• Are you serving in an elected or an appointed position in a professional or governmental organization?

• Have you recently traveled to another country to teach or learn more about our specialty?

IF YOU CAN ANSWER “YES” TO ANY OF THESE QUESTIONS ...

PLEASE TELL US ABOUT IT! SEND YOUR NEWS FOR THE NEXT INSIDER NEWSLETTER TO PENS@kellencompany.com.

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PENS Reporter

Summer Edition, 2019

Highlights from PENS 2019 National Conference

The 2019 Pediatric Endocrine Nursing Society National Conference has come and gone. I’m hoping that if you were able to attend, you enjoyed your time in Long Beach, CA. Our conference had many opportunities for attendees, including time for learning, friendship, networking, and hopefully some relaxation and fun. The mild weather and beautiful location provided a great backdrop to our annual conference. We had a total of 155 attendees at the conference with 80 exhibitor staff on site. Thank you to all who attended and networked with our exhibitors.

The conference planning committee had a busy and successful year of behind the scenes work. The year started with a thorough review of the evaluations from last year’s conference. We immediately set to work identifying potential speakers, keynote options, topics, as well as considering continued sources of funding, sponsorship, and vendors for the conference. Throughout the fall the group evaluated all proposals, selected speakers, and developed the schedule for the conference.

The committee also fielded ideas for pre-conference workshops and decided to offer two pre-conference workshops, one on research that is geared towards all membership and a second one on the pediatric conversation map called T1D and Me. PENS had a total of 51 attendees for these workshops and I personally would like to thank everyone for taking such an interest in these offerings.

A thorough review of the committee charter was also completed and clarifications were made to the board for their approval. Specific clarification was made to the vice-chair position as well as the process of selection and notification of committee members. Beautiful artwork for the 2020 annual conference in San Antonio, TX, was also selected. Individual emails were personally sent to members living in the state of Texas to identify potential planning committee members as resources for the 2020 conference. The committee chairs and board are working now to select the 2020 conference planning committee.

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Leading up to the conference, the committee has assisted with identifying opportunities for new membership and first time attendees to feel welcomed to the conference. We used notecards at each table for real time comments and idea suggestions. We also welcomed first time attendees and/or new members to attend a brief meeting prior to the conference closure to provide additional feedback. Thank you to all who provided feedback to the PENS Board and planning committee. During the conference sessions, a PowerPoint was used to display reminders to all attendees as an easy and clear way to disseminate conference information. The CPC is also recommending the use of hashtags on social media to increase promotion and awareness of our organization.

The development and implementation of the annual conference is a monumental task made easier through the dedicated help of all committee members. This year’s committee included Sheri Luke as co-chair, Mary Burr, Karen Engel, Leigh Pughe, Jane Torkelson, and the expertise of our board liaison, Cheryl Switzer. As well as the excellent assistance from Christie Ross, PENS’ education program coordinator.

Thank you all. My duties as committee chair are complete and I am leaving the committee in the competent hands of Sheri Luke as chair for 2019-2020.

If you haven’t done so already, please remember to fill out your program evaluations! Your input is valuable in helping to guide the conference planning committee for the future. In addition, the evaluation of each session attended is required to obtain your continuing education certifications, which will be e-mailed once completed. Please remember to mark your calendars for the 2020 annual conference April 29-May 2, 2020 at the Hyatt Regency Hill Country Resort and Spa, San Antonio, TX. Watch your email for the call for presentations, poster abstracts, and for further information related to our 2020 conference.

Wishing you all the best, Kelly DeGrote, BSN, RN-BC 2017-2019 Conference Planning Committee Chair

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Clinical Exemplar Gail Aikey, RN, BSN I was first introduced to BC when he was referred to our clinic by his primary care doctor. He presented to them for evaluation after his parents recognized that he was drinking increased amounts of water and was going to the bathroom every 20-60 minutes and experiencing occasional incontinence. The PCP was very suspect of new onset diabetes or urinary tract infection (UTI) and they were surprised and confused when he had normal blood glucose levels and no signs of UTI. His only other complaint was an occasional headache.

The PCP reviewed his initial exam with our on call doctor and concern for diabetes insipidus was voiced. The decision was made to send the patient home and get fasting labs in the morning. A chemistry profile, urine and serum osmolality were obtained with inconclusive results. The decision was made to do a water deprivation stimulation test. He was to be an outpatient admission in 3 days for the testing.

Prior authorization from the insurance company could not be completed in time for the scheduled testing so it was postponed for several more days.

While awaiting the authorization for the water deprivation test to be completed, we were able to get authorization for an MRI of the brain with and without contrast, which was completed.

Plans were made to have the MRI completed and to have the patient report to the pediatric unit for admission and preparation for the supervised water deprivation test.

In interim, from the time the MRI was completed and prior to arrival at our hospital, we received notification that BC had a tumor of the pituitary and hypothalamus, that appeared to have arisen from the neurohypophysis and was most likely a hypothalamic glioma.

In less than one week, this family’s healthy son, who is a good student, loves sports and has lots of friends had gone from a possible diagnosis of a UTI to a possible brain tumor, or at the least, a brain lesion.

The medical team for BC had grown from a pediatric hospitalist with a pediatric endocrine consult to supervise the water deprivation test, to a hospitalist, endocrinologist, oncologist, and neurosurgeon.

After multiple exams, many blood tests including the water deprivation test, we had confirmed central diabetes insipidus, hypothyroidism, adrenal insufficiency, and elevated prolactin level, with other lab results still pending. All members of his medical team were leaning away from glioma and more towards hypophysitis. Our neurosurgical team could not ignore the potential morbidity associated with a biopsy of the lesion and felt that the surgical biopsy was to high risk and not essential at this time. Stress dose steroids, levothyroxine and DDAVP were initiated with an excellent response. We all

took a deep breath at this point, having a healthy appearing kid, dealing with an inflammatory issue in the pituitary and hypothalamus, but not a brain tumor. What should be our next step in treating BC? BC needed to be transferred to a higher level of care that could effectively treat his hypophysitis and determine the cause, by doing a brain biopsy. Seattle Children’s would be the normal referral facility for children requiring higher levels of care than can be delivered in AK. Unfortunately we could not make satisfactory arrangements for an urgent transfer for our young man.

We had an accepting physician at Children’s Hospital of Philadelphia (CHOP), one of the centers of excellence for treating patients with hypophysitis. The family was very reluctant to transfer over 5,000 miles from home, for a possible long hospital stay, potentially causing grave financial and emotional hardship for the family.

With a four hour time differences between facilities, coordinating a transfer caused major delays in communication.

At this point in time, the medical care team determined that an emergency air medical transfer would not be needed. BC would transfer by commercial flight.

He was started on DDAVP with dose adjustments made to balance I&O and have appropriate NA levels. Thyroid replacement treatment was initiated. He was started on oral dose hydrocortisone and family was given education and was able to demonstrate when and how to give emergency Solu Cortef, if needed. Arrangements were still in progress to transfer our young man to care at CHOP. BC’s parents were not warming up to the idea of going to CHOP for their son’s care. They suggested that they would really like to stay closer to home if possible or go to Arizona where they had other family for support.

BC’s family jumped in with both feet, eager to learn about is illness and what they needed to know to keep him safe and healthy until arrangements were made for the specialist care he needed. This family was a very close knit, blue collar family.

Both parents worked full time jobs to maintain their home and maintain the financial ability to enjoy life. They had a cruise planned as an early Christmas present for the family.

Since BC was feeling good, labs were stabilizing, and without a definitive plan for transfer to a center that could provide a complete team with a pediatric endocrinologist and a pediatric neurosurgeon to do the brain biopsy and manage all of his issues related to hypophysitis, he was discharged from the hospital with very close outpatient care, while the pediatric endocrinologist and I worked toward a safe and acceptable facility for the next level of care.

At time of discharge, transfer to CHOP was in the planning continued on page 12

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continued from page 12

stage, records, consents, images, and demographics were collected and sent to the receiving facility. We were ready to schedule the appointments when the family called and told us they had been in contact with family that are medical professionals in Arizona. Mom and Dad had sent medical records to a neurosurgeon that was very experienced treating hypophysitis. Mom called me and told us to cancel all plans to go to Philadelphia. They had an appointment to see a doctor in Arizona and requested BC’s records all be sent there. It was a whirlwind, making phone calls, getting consents, and new prior authorizations.

BC’s family had the records of his Arizona doctor appointment sent to us, he would continue all medications and treatment plans put in place by our team and maintain tight medical follow up. Good news was the family could go on their cruise and had an appointment scheduled for a brain biopsy, when

they returned from their cruise. His brain biopsy was positive for Langerhan’s Histiocytosis. Within a few days of his surgery, BC was back in Alaska, a treatment plan was developed by the pediatric oncology team, Mom and Dad were back to work and BC was back in school.

Through my interactions with BC and his parents I learned to listen and hear what my families were saying. The medical team was certain the best level of care could only be achieved by sending them 5,000 miles away from home. BC’s parents wanted the best care possible for him, but needed to stay together to maintain the psychological and physical strength needed to overcome this crisis. This was as much a priority for this family as was the quality of medical care. Listen and hear what your patients are saying !

Gail Aikey, RN, BSN

Clinical Exemplar Cheryl Green RN, BSN As a nurse with approximately 11 years of experience in the hospital after receiving my nursing degree and a total of 15 years of working in the Healthcare field, I realized shortly after the beginning of 2018, that it was time for me to make a change in my career. I’ve spent a majority of my career working the Neonatal Intensive Care and obtained a wealth of knowledge and experience that will carry me through my lifetime as it has made me a much more compassionate nurse and individual when dealing with the difficult patient and family.

I’ve learned that while we are only dealing with these patients and their diagnoses for a short while; this is a life changing, life altering occurrence that they are trying to navigate and they require our utmost care and compassion to make it as easy a transition as possible for them.

In October, of 2018, I made the transition into Pediatric Endocrinology. When doing this, I had no experience in the area and really knew nothing about endocrine disorders or medications other than your very basic diabetic knowledge and insulins. I was blissfully ignorant. I quickly learned within the first few weeks, that there are a multitude of diagnoses, treatments and medications in the realm of the endocrinology.

I have quickly become well versed in the endocrine disorders that deal with short stature, growth hormone deficiency, pituitary gland disorders and other syndromes that might require a patient to be on growth hormone. Growth hormone is a hormone given by subcutaneous injection every night to the patient in order to stimulate the pituitary to make growth hormone by helping to regulate body composition, body fluids, bone growth and the metabolism of fats and sugars.

The process to get a patient started on growth hormone is often times a long process. Insurance requires the patient

to have two provocative tests showing that the pituitary isn’t producing the right amount of growth hormone. In the clinic setting, we use Arginine, an amino acid and Clonidine, a blood pressure medication. These medications stimulate the pituitary to make growth hormone and bloodwork is drawn and regularly spaced intervals throughout the tests to check those levels. Sometimes, Arginine, Glucagon or Insulin can be used for the test. The Growth Hormone Stimulation Test lasts for approximately 5 hours and the patient is NPO throughout.

We run the Arginine, which is a weight-based IV infusion over 30 minutes after drawing a baseline Cortisol level and Growth Hormone level. Once the infusion is complete, labs are drawn at 30, 60 and 90 minutes. Clonidine is then administered based on the patient’s weight as well. We again, draw a baseline lab and 30, 60, 90 min labs. We closely monitor the patient’s blood pressure throughout to ensure there are no adverse reactions. Results can take 10-14 days to come back. Once the results have been given to the patient, we then start a prior Authorization if they meet the criteria for the growth hormone injections.

In order to start the patient on the growth hormone, I fill out a Statement of Medical Necessity with information about their diagnosis, lab results, and most recent imaging studies if there are any. Imaging studies may include an MRI, Bone Age X-Ray or even a sleep study if they have any form of sleep apnea. Once the Prior Authorization is submitted, the waiting game begins. As, a new nurse to the world of Endocrinology, I have actually had quite a high success rate in obtaining Prior Authorizations for Growth Hormone for the patients in my clinic.

It’s very important to remember that these parents and most importantly these kids are counting on us to “fix” this for them continued on page 13

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PENS Reporter so they can either be the same height as their classmates or at least closer to the average height of their classmates.

Sometimes, insurance can feel that despite a patient meeting all the criteria, their diagnosis doesn’t fit well within any of their little checkboxes so they deny the growth hormone for the patient. When this happens, we do an appeal process in order to see if we can get insurance to understand that just because they don’t fit within their black and white boxes, some patients do fall within the grey area and would still benefit greatly from the growth hormone. I have one such patient that stands out in my mind. I will change name for privacy.

Nathan is a 13-year-old boy who stand considerably shorter than his classmates at just barely 4 Ft tall in the 8th grade.

According to Nathan, all his friends are a minimum of at least 5’7’ and he gets talked down to a lot by classmates and adults who see his small stature and automatically assume that he is many years younger than he actually is. Once you sit down and have a conversation with him, you would believe that he is actually closer to that of a 16-17-year-old in his maturity level and education level. Nathan is a very smart young man who just “wants to be taken seriously and not be referred to as the shortest kid in the school.”

Shortly after my transition into the clinic, I met Nathan and his mom, Angela. They were both polite and wanted to know the implications of the test results after learning that they were denied for Growth Hormone. We began the process of obtaining approval for Growth Hormone for Nathan. It took longer than expected.

The approval process for this medication was a long process as they required extensive paperwork to ensure that it was indeed the correct option for Nathan to meet his needs to help him grow. I worked on this case for almost two months before we finally received approval and could start the process of setting up delivery for Nathan and the process of teaching him and his mom how to administer the injections.

Nathan and his mom were very apprehensive about the daily injections that were actually going to be twice a day for him. They came to our clinic for an appointment shortly after

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the first of the year once they’d received the medication. A representative was coming to their house the following week to do teaching with them but they were nervous about the entire process. After our endocrinologist saw them, I went in to the room and sat down with them and spent about 2 hours going over the medication, its potential side effects and the administration of the medication. We discussed how to store the medication and when the best time of day to give it would be so that it would become a routine so it was less likely to be forgotten. In addition to this, we discussed the importance of good hand hygiene and infection prevention by site cleansing and cleaning the bottle prior to injecting the syringe.

I sat with Nathan and his mom and built up a rapport with them. You could see the fear and apprehension in Nathan’s eyes at the beginning of the education and as we talked and related the injection to real life scenarios and talked about what he liked to do, Nathan opened up and began asking the questions he had about the injections. Nathan and his mom both practiced the injection into “dummy skin” and felt quite comfortable by the end of the session. Nathan and his mom both felt comfortable enough to begin the injections that day and use the company rep as a refresher for any questions that might come up between our session and the arrival of the rep.

I have always known how important it is to build a rapport with your patients and their families and this was one of those shining moments where my willingness to sit down and answer their questions and spend as much time as they needed to be comfortable with the injections paid off. Nathan has now been receiving his injections since the date of that appointment and has started giving himself the injection as well. His mother stopped by the other day, asked if she could give me a hug and just wanted to let me know how much my willingness to talk to Nathan and then her helped him with his anxiety related to the medication administration and that she felt things were going as well as they were because of my willingness to help.

It’s always humbling to hear how much a patient appreciates what you’ve done for them because they are only in our lives for a moment but when we go the extra mile, we stay in their lives forever.

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Clinical Exemplar- Developing Patient Education Tools to Improve Outcomes Kristen Jennings RN, BSN, CDE As a pediatric nurse and diabetes nurse educator in a multidisciplinary Endocrinology clinic, I spend many hours a day on the phone talking to concerned parents and school nurses. A common problem that I come across is that of high blood sugars, and the even more concerning positive ketones.

Some families are brand new to the world of Type 1 Diabetes and have never dealt with high blood sugars, illness, or ketones; while others have been neglecting their diabetes for months to years, are severely uncontrolled, and it is the school that calls daily to help manage the patient.

However, there are many families in our practice that are not as proactive and hands on. It is concerning to me that we often don’t get calls about high blood sugar and ketones until it is too late, if at all. The child has been vomiting all day, is severely dehydrated, and can’t keep down any fluids. Where was the call when the blood sugar was high for days on end? Where was the call when they checked for ketones? Why didn’t they check for ketones? Why didn’t the family give correction doses of insulin? Why didn’t they call their primary physician? Why isn’t the parent monitoring the child?

I am grateful when families call for advice on problematic high blood sugars and ketones. These parents show initiative and concern about their child’s well-being. We are able to walk through the steps needed to bring down blood sugars and ketones safely while advoiding the Emergency Department.

It is very distressing to know that the patients I am helping to manage are not doing what it takes to stay alive and live a life free of diabetes complications. The questions above led me to see a problem: our patients did not have a clear and concise protocol for managing their blood sugars, and instructions for

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when to communicate with our clinic. As a person who also lives with Type 1 Diabetes, I am empathetic to my patient’s difficulties regulating their blood sugars. However, I also know that blood sugar control is manageable by taking action and not waiting. Due to these concerns, I led our Endocrinology team to come up with a solution that included a Diabetes Action Plan.

The goal of the Diabetes Action Plan is for families to use it as a tool to safely manage high and low blood sugars, and to keep their children out of the hospital when possible. It spells out exactly when to take action, when to call our clinic, and when to go to the Emergency Department. It is great for families who are new to diabetes and do not know high/ low blood sugar protocols; and it is for those who have had diabetes, but need reminders on how best to manage blood sugars when things are not going smoothly. It serves as an additional resource for school nurses, and other caregivers who are not with the child daily. It gives the family power to manage blood sugars without having to call the clinic for little questions, but lets them know that there are times they do need to call the clinic.

For the provider, the goal of the Diabetes Action Plan is to have an easy way to mutually discuss treatment and to keep

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the patient safe, especially while over the telephone. While using the Diabetes Action Plan in clinic, I am surprised how often I am using the bottom portion of the form that discusses Goal A1c and blood sugars and how to obtain these. I stress the importance of taking insulin and testing blood sugar before meals, notifying the clinic of more than three days of high/lows, and for any questions or help with sick day management. This portion is so important because if the family does these three things, they can achieve optimal glycemic control, and avoid ketones and the emergency department as well.

After working on the Diabetes Action Plan, I find myself to be newly invested in my patient’s wellbeing and health. It has given myself, and my patient’s families, the power to constantly teach and understand blood sugar management. I find that families are being more proactive about their child’s diabetes care, calling at more appropriate times, and avoiding the emergency department. There is so much education and information that comes along with a new diagnosis of Type 1 diabetes, and it is a disease that is lifelong. The Diabetes Action Plan is working as a great educational tool for those who are on information overload, and for those who need to see the information again in a new light.

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Clinical Exemplar Barb Lightner, APRN, CNP, CDE Case Study CS1 Title:

Not Your Average Turners

Track: Endocrine Advanced Description: Discuss case, presentation, evaluation, and treatment options. This is not your typical turner syndrome.

How AND when should this patient be treated? Should we treat with growth hormone, hormone replacement, pubertal suppression? I would like to get the opinion of endocrine colleagues!

Abstract: 9yo African American female Clinical Presentation: PMH: Term infant, BW 3470, ambiguous genitalia and abnormal karyotype Growth chart: CDC weight 14th percentile, height 10th percentile Turners height 95th percentile Relevant Past History: Briefly treated with growth hormone in 2012 and for a few weeks in 2018. Patient wants to be taller but does not like to take injections. Father 5’7” Mother 5’6”, regular menses, menarche at 11 years Evaluation: She was evaluated by endocrinology, genetics and urology {CCF). Mother was told that child should return for surgical intervention when she is a teenager. She could have reconstructive surgery to function in either a male or female role because of her genetics. Cardiology February 2012, normal evaluation Surg: myringotomy tubes - age 3-4 yrs Tonsillectomy age 3-4 years Laboratories: 2/12 /08 FISH analysis - ISCN NOMENCLATURE: nuc ish Xcen{DXZ1x1),Ycen(DYZ3x1)[[33]/Xcen{DXZlxl), Ycen(DYZ3x1)[83) 12/11/08 Pelvic US - there appears to be a fluid-filled uterus within the pelvis. Two structures are identified within the inguinal canals which have the sonographic appearance of testicles. Within these probable testicles, no ovarian follicles are identified. Superior to the scrotum/fused labia, there appears to be the base of a penis. 01/26/09 Pelvic US - horseshoe kidney, adrenals identified and of normal size,

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left inguinal streak ovary and right inguinal testis, left Mullerian duct structures present {small uterine horn and fallopian tube), dilated vagina with mild hydrocolpos Laboratories: Component Reference Range TESTOSTERONE 1-5 ng/dl 821 (H) INHIBIN B 47 DHT 0.0-49.9 pg/ml 1635.5 AMH 55.0 REFERENCE RANGE for lnhibin B: Male:< 400 pg/ml Female: Postmenopausal: < 15 pg/ml Normal Menstrual cycle: 15 - 200 pg/ml AMH reference ranges: females 0-8 years 0 .0-7.1 Males 14 days to 11 months 39.1-91.1 VCUG - dilated vagina and unicornuate uterus.

Urethra is dilated and has a common orifice with the vagina.

Left ovary seen superiorly in left inguinal hernia.

Interventions: Psych counseling, Growth Hormone Labs Discussion/Recommendations: Patient prefers male gendered activities. Mom says paternal family is encouraging female gender identity. Mom wants to let patient decide and has not pushed her to either gender. Mom using female pronouns, but acknowledges male gender preference. May masculinize during puberty and would benefit from either hormonal therapy or pubertal suppression as needed based on confirmation of her gender preference cleft palate and had surgery in January, 2016 for Furlow palatoplasty followed by a pharyngeal flap procedure in March, 2018. Speech is much more understandable following surgery. Will be in speech therapy as soon as hearing aids are able to be worn. Psych/ Behavioral - Short attention span, easily distracted. Homeschooled, so has not yet exhibited the anxiety frequently seen in these children.

Discussion/Recommendations: Due to the many systems involved, the management of children with 22q Deletion Syndrome is well- served with a multi-disciplinary team approach. Children with 22q Deletion syndrome are commonly referred for Endocrine evaluation due to common findings of: 1. Hypocalcemia / Hypoparathyroidism 2. Thyroid issues Hypothyroidism or Hyperthyroidism 3. Growth concerns

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Clinical Exemplar Mako E. Sather, CPNP I have been an endocrine nurse for 18years, the last 14yrs as a nurse practitioner. I see patients with endocrine issues as well as diabetes. I do all the diabetes education, including new-onset education, follow ups, as well as pump and CGM trainings. My new-onset families call me 4x/day with their blood sugar readings and with questions. As such, I felt that I had a fairly good understanding of diabetes and what my patients experience.

I started helping at diabetes camp 4-5 years ago as senior med staff. My role was to supervise the junior med staff, help with decision making on dosing, and dose adjustments during camp. We have regular checking times, including a middle of the night test. Our campers lovingly call us “Juice Fairies”, because we run around the campsites with headlamps looking like fairies and giving them juice if they are low. The camp is located at altitude, and the campers have various activities that they can participate, including swimming in the lake, beach volleyball, zip lining, dancing, hiking, and many more. We have a camp dietitian that provides carb counts for all meals and snacks. The camp has been around for years (over 30 years).

As such, it is run very well.

Given my experience with diabetes, personally knowing some of the campers (my patients), and the experience of the organization, I thought that this would be a fun and easy experience. I thought I would be an excellent resource for some of the newer staff members. Boy was I mistaken!! I learned quickly that the day-to-day diabetes care is much different than what we see in the 30min visits. It is one thing to hear the families tell you how much the blood sugars fluctuate and how difficult it is to predict what to expect, but it is an entirely different experience to actually live it. We adjusted their dosing to the altitude and level of anticipated activities, counted their carbs, and dosed them accordingly. Yet, the numbers are all over the place. I hear the families in the visits complaining how frustrating it is, but in my ignorance I always thought that it is just a matter of fine tuning. I quickly realized how mistaken I was. No situation is the same, no kid reacts the same, even the same kid will have completely different reactions one day to the next. It is so frustrating to see, no matter how much

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you think you know, there are always variables that we can not control. Feeling the frustration myself, compared to just listening to them (when the parents report), was surprisingly different. Additionally, getting up at night (we even take turns, so it is only every other night) to check on the kids, making sure their lows resolved, and sleeping in shifts, was exhausting.

One of my younger campers (age 8yr) had the Medtronic 670G pump with auto-mode. I thought this should be easy. Just pre-bolus for meals and let the auto-mode do its thing. Not so much!! We had French toast with syrup one breakfast (lot’s of carbs). She loaded her plate, we dosed for carbs. She walks back to her table to sit with her friends, but trips. Her French toast flies everywhere. She gets upset and cries. We get her a new plate, but she is too upset to eat it. Now what do we do. We dosed for it, but she is not eating carbs. She is starting to go low. So low, she is kicked out of auto-mode. We handle the situation. So, the next day we dose right after she eats.

Now her blood sugar rises too much and she is kicked out of auto-mode again. It just comes to show that even the newest advancements are still not enough to make life easier for our patients and their families.

It dawned on me that I only did this for one week. The parents do this every day and night. The amount of emotional and physical stress involved in living with a child with diabetes is unimaginable. I grew close to the kids at camp, but of course it is nowhere near the emotional attachment one has to their own children. I was truly humbled.

This experience at camp gave me an insight into my patients’ lives that I thought I understood, but in reality I did not even scratch the surface. Since the first time I attended camp, I have been going back every year (some years for the entire camp, some only for 1-3 days). I now approach and embrace the camp experience as a learning opportunity for me, being the student, rather than the teacher. I feel that I have a better understanding of my patients’ and their parents’ burden they carry. I hope to be more empathetic and understanding. I also believe that going to camp and giving these parents a break for just one week is the least I can do to help them out.

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Clinical Exemplar Rebecca Thompson, BSN, CDE, RN The specialized field of pediatric endocrinology nursing has provided me with a multitude of exciting professional experiences for more than 21 years including participation in national nurse advisory boards, national and international research studies as a study coordinator, research and informational posters, and numerous diabetes and growth hormone educational projects and programs as a nurse consultant. I’ve been a PENS member since 2000 and have treasured the friendships, networking, and support and have been inspired by the strong role models, leaders and mentors.

37 yrs ago I started as a nurse extern on the school age medical surgical unit at St. Christopher’s Hospital for Children in Philadelphia during the summer before obtaining my BSN at Villanova University School of Nursing. I was excited to permanently join the staff the following spring. My interest in pediatric endocrinology began while caring for children newly diagnosed with diabetes. Early on I admired Terri Lipman, a confident clinical nurse specialist from the Division of Endocrinology, as she made daily rounds on our unit with her team spreading her diabetes expertise with compassion in such a way that was amazing to observe. It was very rewarding to witness the transformation of the children and their families during their hospitalization as they learned such complex information and skills to perform daily care.

This included mixing insulin, practicing injections on “Sugar Baby”, a plastic doll kept in a black case, and timing and wiping each blood sample with cotton on the chemstrip bg color coded test strips and matching colors in 2 and/or 3 minutes for the estimated bg result. I requested to shadow her teaching sessions and was happy to be assigned to patients with diabetes during their admission. I became more comfortable reinforcing the daily management, providing individualized patient and family centered care and later became the Diabetes Resource Nurse on our unit. Terri invited and encouraged me and another staff nurse to research and co-author a two part article Developmental Approach to Diabetes in Children: Part 1 Birth through Preschool and Part 2 School Age- Adolescence published in The American Journal of Maternal/Child Nursing almost 30 years ago! It was such an exciting opportunity. I greatly appreciated this experience in my professional development. I transitioned to the division of endocrinology as a nurse clinician in 1996, obtained my CDE 4 years later and worked for 11 years. I then became a part of the supportive multidisciplinary team at Nemours Alfred I. duPont Hospital for Children in Wilmington, DE for 10 years.

As an Endocrine Specialty Nurse and Certified Diabetes Nurse Educator one of my passions included the vast opportunities and challenges to educate and empower children, adolescents and caregivers, encouraging family involvement in daily care

with a balance between adult supervision and self-care for optimal diabetes management. I loved the process of improving knowledge, skill and technique for patients on insulin therapy. My observations and discussions with patients and caregivers over many years revealed that the manufacturer guidelines for insulin storage and/or preparation and administration using a syringe or delivery device: insulin pen, cartridge or insulin pump. are not consistently followed. After developing patient friendly educational resources these were shared with patients and caregivers. I facilitated learning for nursing colleagues by presenting a poster at the NCN (Nursing of Children) Society of Pediatric Nursing Conference and at a PENS conference.

One of my proudest moments was an early summer refresher education and clinic appointment with CS, an 18 year old young lady who was diagnosed with Type 1 Diabetes at the age of 7.

On the day of visit her Hemoglobin A1C was 7.6%. I determined that CS was not following the recommended guidelines using her Novolog Flexpen and Lantus Solostar insulin pens.

I reviewed my educational tools and demonstrated proper technique. She verbalized she was very motivated to improve her diabetes care as she prepared for living away from home at college. CS agreed upon the following behavioral goals to help improve her diabetes control: injection site rotation avoiding her favorite injection sites and proper insulin pen technique using the educational tools I had developed, reviewed and provided.

When CS returned 3 months later she reported that her blood sugars had been better – more stable- since she started to choose “fresh” unused injection sites, prime every time with a new pen needle for every dose, stored pens as recommended, and held the dose button while holding the pen needle in the skin for the required time. CS, her parents and her grandmother, who routinely accompanied CS at every visit, stated that they all learned from the educational tools. We all waited anxiously for the knock on the door for her HgbA1C results. It was 6.6%the best result in the previous 2 1/2 years! They were all elated!

I was thrilled! CS was so excited, clapping for herself. She hugged and thanked me for helping her to make a difference by improving her daily care and control. She stated she felt confident that she could continue to do well. I praised her for the awesome job of adjusting a few things that improved her overall glucose control while transitioning to college life.

I was scheduled to present a session I titled Diabetes Care With Confidence: Educate, Empower and Excite at Hot Topics in Ambulatory and School Nursing Conference at Nemours AI duPont Hospital for Children on a Saturday in September of 2017. Keeping the developmental approach to diabetes continued on page 19

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continued from page 18

education in mind, my goals included assisting those in contact with children and adolescents with diabetes to provide and/ or oversee safe and optimum care with confidence. I would like to personally thank Dr.Terri Lipman for being my confident inspiration and mentoring me into the world of pediatric endocrine nursing. Unfortunately I was unable to present my

Hot Topic. My life changed 30 days before the conference when I suffered a brain injury. For those of you who care for children and adolescents with diabetes, please continue to share your Diabetes Care with Confidence to Educate, Empower and Excite!

PENS Academic Education Scholarship Applications Due September 1 The Academic Education Scholarship was implemented as a means of helping PENS to meet its goal of advancing the art and science of pediatric endocrine nursing. PENS is committed to increasing the knowledge base and enhancing the professional development of nurses in the field of pediatric endocrinology. Education is one of several means of professional development, and PENS has provided the Academic Education Scholarship to help its members meet academic goals.

Click here for more information and the application.

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Captured Memories from PENS 2019 National Conference

continued on page 21

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Captured Memories form PENS 2019...continued from page 20

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Education Committee 2018-19 Report 2018-2019 has been an exciting year. The Education Committee along with our board liaison, Cathy Flynn, had a great meeting at the 2019 National Conference. We continued working to update the PENS education page on our website.

The Education Resources page has new information with links to scientific bits of information on various endocrine diseases, links regarding medications used for those diseases, as well as links to patient handouts that you can use in your practice. We are utilizing the updates that the Pediatric Endocrine Society education materials, too.

Shaylyn McDaniel has been working with the Pediatric Endocrine Society on patient and family education videos which will be posted to the website. The first video on Congenital Hypothyroidism is nearly done and will be posted upon completion.

We have received funding to provide continuing education videos for our members and the committee has planned future webinars. We welcome additional suggestions of topics and speakers so please reach out to any of our committee members if you would like to share an idea.

I would like to acknowledge the outstanding team of Education Committee members and thank them for a fantastic year of educational offerings. I would also like to let everyone know that Shaylyn McDaniel will be the new Chair for this committee and the new Board Liaison will be Tammy Nenadovich.

Isabel Couto Barb Lightner Shaylyn McDaniel Amanda Patterson Mako Sather Catherine Flynn, Board Liaison JerrieLynn Kind, PENS Executive Director Melinda O’Brien, PENS Education Coordinator It was great seeing everyone at the National Conference this year!

Linda

Linda Burkett, MSN, RN, CDE 2018-19 Education Chair

Membership Task Force 2018-19 Report The Membership Task Force was started at the end of our 2018 conference in Bonita Springs, Fla. to discuss ways to retain our old members and to entice new members to join.

Over the past year, we have had three conference calls discussing ways to improve membership retention, and ways to attract new members to join. With the help of our management team, we researched pediatric endocrine providers in states close to California (2019 conference location) and personally invited their nurses to join PENS and attend conference. I think it worked! We also sent personal emails to past members and past conference attendees. Lastly, we discussed the importance of becoming more active on social media- so please “like” us on Facebook!

At our conference this year in Long Beach, Calif., we unveiled a new, updated logo with a tag line that incorporates diabetes.

We are hoping that with our new logo and tag line, pediatric nurses and pediatric nurse practitioners who focus on treating diabetes in children will be more inclined to join PENS and attend our conference.

When we met this year at the PENS National Conference, the membership task force agreed that we needed to continue to recruit new members. We will be researching pediatric practices in all 50 states, and sending postcards to all of those practices, inviting new members to join our organization.

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To increase member retention, we are increasing our social media activity and presence. We are starting with Facebook and will be expanding our social media presence across additional platforms in the future.

As a PENS member you too can help us recruit and retain members! Tell your pediatric endocrine and diabetes friends/ colleagues about our conference! Tell your pediatric endocrine and diabetes friends/colleagues about the great people you met at the PENS conference! Tell your pediatric endocrine and diabetes friends/colleagues about our leadership opportunities! Tell your endocrine and diabetes friends/ colleagues about our research grants! Tell your endocrine and diabetes friends/colleagues about our scholarships to attend conference!

Thank you for being a PENS member! If you would like to be included in the membership task force, and included on upcoming conference calls, please email me at beckycrespi@hotmail.com.

Hope to see you in San Antonio with more new PENS nurses!

Rebecca Crespi, CPNP CDE

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Nominations Committee 2018-19 Report Chair:

Maryann Johnson, BSN, RN, M. Ed, PEN

Board Liaison:

Jerrie Lynn Kind

Committee Members: Cynthia Lucia, DNP, RN, CNP Mandi Cafasso, BSN, RN, CDE Amy Bluming, BSN, RN Lisa Richards, MSN, RN, CPNP-BC Purpose of Committee: The PENS Nominating Committee is responsible for recruiting candidates, and slating of the ballot for the PENS annual election.

The following are the responsibilities of the committee members: •

Oversee the annual elections

•

Present a session on leadership at annual conference which meets the following objectives:

o

Review PENS mission, goals and purpose

o

Gain a shared understanding of basic responsibilities of nonprofit organizations and their leaders

o

Discuss the financial responsibilities of a nonprofit organization

o

Become acquainted with participant colleagues & learn what inspires others to volunteer

•

Make recommendations to the board of any suggested change in the elections process.

Summary of Projects: Candidates for positions of Director, Treasurer, and Nominating committee members (2 positions). Candidates were notified by March 15th.

The voting results were as follows: Director:

Rebecca Crespi, BA, RN, MSN, CPNP, CDE

Nominating Committee: Courtney Robertson, RN, BSN, CPN, DNP-PNP Student Margaret Garner, RN, BSN, CMCN, CCM Treasurer:

Margaret (Meg) Keil, PhD, CRNP

Thank you to all the members of the Nominations Committee and Membership Task Force for their work on this years’ projects.

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Research Committee 2017-18 Report Research was with us both in mind and spirit at the 2019 National Conference in Long Beach! We had a strong start with our evidence-based workshop (using transition as an exemplar) and yes, we read and appraised research articles, getting into the grit of it all. Despite the sun and water calling to us, we stayed engaged, determined to improve our EBP skills to improve care for our patients. Here’s just a few of the TWENTY THREE ideas that were born during the workshop: •

Will a structured DKA follow up vs. standard care decrease hospital readmission and increase client/family satisfaction?

•

In patients with PWS (P), does GH initiation (I) compared to untreated (O) result in a decreased number of desaturation events while sleeping at 6 months?

•

How can we best educate (live, web-based) primary care providers for timely referral and diagnosis of pediatric endocrine disorders?

•

Are vitamin D levels improved in patients whose families receive additional education when first prescribed vitamin D than those families without extra education?

We again had a wonderful poster session, reading, listening, and mingling. Posters represent four different abstract types: research, informational, case study, and productbased. The Research Committee picked four winners this year. Joanne Moser received Best Research Poster for Initial Psychometric Evaluation of a Pediatric Diabetic Peripheral Neuropathy Screening Tool; Courtney Robertson received the Best Informational poster for Adrenal Insufficiency in Children: Teaching Nurses to Teach Caregivers; Susan Davis

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was awarded Best Case Study poster for Suppression of Pituitary Axis from Inhaled Corticoteroid; and Courney Kivel was awarded Best Novice Poster for Family History Plays an Important Role in the Diagnosis of Multiple Endocrine Neoplasia Type 2A. Thank you to our three researchers who presented during the Research General session. Jennifer Morone, a doctoral student mentored by Dr. Terri Lipman, presented The Influence of Social Determinants of Health on Family and Self-Management of Type 1 Diabetes in Black Single Parent Families; Dr. Krista Schroeder presented The Impact of Change in Neighborhood Poverty on BMI Trajectory; and Dr. Jan Foote presented National Survey of Neonatal Growth Measurement Practices.

Very exciting to see the research efforts supported by PENS. Jennifer and Krista are supported by a PENS Research Grant and Jan by the PENS Multisite Research Grant.

Watch for the call for abstract proposals that will come out in late summer/early fall with abstract submissions due sometime around Nov 1st. The Research Committee solicits abstracts in the following categories: Research, Informational, Case study, and Product based Industry. Keep alert to things going on in your practice that may be beneficial to share with PENS members and please submit an abstract! The more we share, the more we learn! Check our website to learn about the EBP grant and the Research grant, submissions due February 1st.

Contact Sharron Close with any inquiries.

Best to all,

Carol

Carol J. Howe, PhD, RN, CDE

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Have you joined the PENS E-Community?

Why wait? Start now!

Communication between PENS members just got easier!

•

•

Editing Messages Please be sure to proof messages prior to posting (clicking the save button at the bottom of the screen). While the Forums provide the ability to go back and “edit” your post, please be aware that every edit that is made will be re-posted to all committee members resulting in multiple alerts going out.

•

Responding to Messages When you receive the notification email that a posting has been created, you must be logged in to the community to reply. If you are continuously logged in, you can click the link in the email and your response will be posted. However, if you are not logged in, your response will not post. It is best to come to the community and sign in to respond effectively.

We are excited to offer our members information about our E-Community forums which are located in the Member Services section of our website. We have two forums open for members like you to interact with one another!

Current forum topics include: General Peds Endo and Diabetes.

How do I sign up (subscribe)?

Simply sign in to the Members Only section with your ID number and password. If you need your ID number, check your Insider email or contact us at PENS@kellencompany.com.

If you have not personalized your password, your password is “PENS12.” If you have forgotten your password, use the links on that page to reset it. Once you are logged in, click on the “Communities” link on the upper right of the page. Once there, you can view the Rules and Regulations document in the Announcements section as well as peruse the different forum titles. To join a forum, simply click “subscribe” on the desired forum.

As nurses, we know we get a lot of great information from one another. This tool will allow you to ask questions and get answers directly from your peers! We hope that you enjoy the community and get the most out of this member benefit.

If you have questions or problems, please do not hesitate to contact us.

How does it work?

Once subscribed, you will be able to interact with other PENS members by posting questions/comments pertaining to the specific topics. An email alert will be delivered to you when there is activity in the forum to which you have subscribed.

To remove yourself from a specific forum, simply click “unsubscribe.”

Posting Tips •

Lengthy Messages If you plan to post a lengthy message, it would be wise to write it out in a Word document first, then copy and paste the text to the Forum when you are ready to post it. If you are interrupted or otherwise delayed while composing a post (20-30 minutes), it is possible that the system will “time out” which will cause you to receive an error when attempting to post your message. The post may then be lost and need to be re-composed.

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E-Community

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A Perspective from the Other Side of the Table Mary Burr DNP, CPNP As many of you know I have been enmeshed in Pediatric Endocrinology and PENS for many years. I began my endocrine career in 2004 when I was hired by the University of Maryland (UMD) Division of Pediatric Endocrinology. I was encouraged to join PENS by one of my coworkers, a fellow PNP, to apply for the conference scholarship so I could attend the annual conference. That year our conference was in New Orleans, it was also the year before Katrina hit. As I look back I feel so lucky to have been able to attend that conference on so many levels. It was my first trip to New Orleans and I saw it pre-Katrina which was a gift to be sure. After the conference I returned to work with a renewed sense of purpose; I was astounded that I had met so many nurses that were doing exactly what I was doing, and they were so smart! I realized then as I realize today that we are very blessed to have an organization that is dedicated to promoting and fostering future generations of pediatric endocrine nurses. I continue to feel this way after attending all of our conferences; it is a time for learning, collaboration and fun in a stimulating environment.

One of my greatest feats in my 38 year career as a pediatric nurse is that I became a member of the leadership of our organization. I remember thinking, “I don’t have time to volunteer, I have a full time career, a busy family and a full life, where will I find the time?” I started small, I joined a committee and realized someone thought my opinion was valuable and felt fulfilled in that I was giving something back to the organization. I started to gain a sense of confidence in my practice and freedom from the sense of isolation that so many of us feel. I continued to practice at the UMD until 2015 when I left to pursue a doctoral degree and a full time faculty position

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at the UMD School of Nursing. I continued my leadership role in PENS while in school and felt it augmented my ability to encourage graduate nursing students to pursue leadership roles in their careers.

So now you are wondering why I chose the title I did for this article, right? Well in the spring of 2018 I received an email asking if I was looking for a career change from a peer, friend and PENS member. I took the chance and applied for the position as the Medical Affairs Coordinator for the PraderWilli Syndrome Association. I was chosen for the position and now have a greater task ahead of me. I will be sitting on the “other side of the table” from you all at PENS and many other conferences. The perspective is enlightening to say the least but as in everything in life that is worthwhile it is hard work. I have come full circle in my career as a Pediatric Nurse Practitioner and I believe I have landed in the perfect career.

My role at PWSA (USA) allows me the opportunity to culminate all I have learned from formal education to practice and professional leadership experience and apply it to the art of supporting people and families with the rare genetic disorder of PWS. I hope you will stop by my exhibit table at next year’s conference and ask me about what PWSA (USA) can do for your patients because one of the best parts of the job is being with my endocrine colleges and sharing information.

Please feel free to contact me or our organization if you have families in need of our support. I can be reached at mburr@pwsausa.org and please visit our website at www.pwsausa.org where you and your patients’ families can download most of our medical and family support information.

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First Endocrinology Nursing Textbook Launched at the 2019 PENS National Conference The textbook titled, “Advanced Practice in Endocrinology Nursing”, was recently published by Springer (2019); Editors: Sofia Llahana, Cecilia Follin, Christine Yedinak, & Ashley Grossman.

This is the first textbook written for nurses in endocrinology.

The contributing authors represent a multidisciplinary team of 118 eminent authors from 15 countries across the globe. The aim of the textbook is to support nurses in their clinical and professional development to progress from novice to expert level and advanced nursing practice, as well as a useful resource for endocrinologists/fellows, general practitioners, and other health care providers with an interest in Endocrinology. The textbook is a comprehensive resource, with 13 sections and 69 chapters, covering pediatric and adult topics across all endocrine disorders.

A big shout out to current or former PENS’ members who contributed as authors to this textbook: Kelly Mullholand Behm, Beth Brillante, Kathy Clark, Sharron Close, Kate Davies (Co-Pediatric Section Editor), Andrew Dwyer, Claire Gilbert, Lori Guthrie, Irena Hozjan, Peggy Kalancha, Meg Keil (Co-Pediatric Section Editor), Nicole Kirouac, Megan Lessig, Terri Lipman, Irene Mitchelhil, Bin Moore, Eileen Pyra, & Wendy Schwarz.

Presentation of Advanced Practice in Endocrinology Nursing textbook to Cheryl Switzer, President of the PENS at the annual conference in Long Beach, CA by Dr. Meg Keil, Pediatric Section Editor.

‘Advanced practice in Endocrinology Nursing’ is endorsed by the European Society of Endocrinology/Nurses (UK), and the Pediatric Endocrinology Nursing Society (USA), The Endocrine Nurses (USA), and the Endocrine Nurses’ Society of Australasia (ENSA).

The textbook is available in hardcopy edition, or e-book, and individual chapters are available in an electronic format at: springer.com amazon.com

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Spotlight on X-Linked Hypophosphatemia (XLH) Isabel Couto, MSN, RN, CPN, NE-BC, Medical Affairs, Ultragenyx Pharmaceutical Inc. Up until this year, very little information had been presented at the PENS National Conference on X-Linked Hypophosphatemia (XLH), the most common hereditable form of ricketic disease. With an estimated US incidence of 12,000, and understanding that pediatric endocrinology is the principle specialty that supports the care of these patients, pediatric endocrinology nurses are at the forefront of providing care to this population of patients and their families.

Ultragenyx Sponsored Symposium Margo Black, MSN, RN, CCRP, Manager of Clinical Research Projects, Program for Metabolic Bone Disorders, Vanderbilt University Medical Center spoke at an Ultragenyx Pharmaceutical Inc. sponsored Breakfast Symposium on Friday, April 26th, 2019 at the PENS Annual Meeting in Long Beach, CA. She provided a disease state overview of XLH and articulated the life-long clinical manifestations that patients face from pediatrics through adulthood. We learned that clinical manifestations in pediatrics go beyond the visible manifestations of rickets and lower leg deformities and may include, osteomalacia, Chiari malformation, bone, muscle and joint pain. Adult patients with XLH carry over some of the same clinical manifestations that are seen in pediatrics (for example, lower limb deformity, short stature and dental abscesses), but new manifestations arise in adulthood that have significant impact on quality of life (such as osteoarthritis, enthesopathies, fractures and pseudofractures). Margo also reminded us of the need for a complete family pedigree analysis at diagnosis in order to establish an XLH diagnosis and to assist in identifying family members who are undiagnosed. In addition, Margo emphasized the importance for routine patient education with patients and families and advocated for the need to have pediatric patients be transitioned to adult metabolic bone providers for continued follow-up in their adult years.

XLH Poster Presented at PENS Annual Conference Authors from Ultragenyx Pharmaceutical Inc., The Yale Center for X-Linked Hypophosphatemia (YC-XLH), and the Metabolic Bone Center at Indiana University presented a poster entitled, “X-Linked Hypophosphatemia (XLH): New Knowledge for Nurses Regarding Genetics, Pathophysiology and Clinical Presentation”. A review of XLH was presented that included the mechanism of the disease, current genetic and biochemical findings, a review of both adult and pediatric clinical manifestations, and available pharmacological treatments.

Implications for pediatric endocrinology nurses presented included the following key take-aways: 1.

The importance of providing education to the entire family to identify those affected but not yet diagnosed and to increase awareness around the need for evaluation and treatment in adulthood.

2. A reminder to encourage routine pediatric follow-up based on pharmacologic treatment regimen, the age of the patient, biochemical laboratory values, and growth.

In addition, evaluation of compliance with the treatment regimen should be assessed.

3. In Adolescents and Adults: Reminder of the chronicity and persistency of osteomalacia (unmineralized bone) as a manifestation of XLH that requires monitoring and possible treatment beyond closure of growth plates and cessation of growth. It is reported that patients are resurfacing with significant symptomology in early adulthood after either 1) they experience a “honeymoon” phase during adolescence where symptoms seem to improve resulting in patients being discharged from care or being lost to follow-up or 2) patients are lost to follow-up when they are told by their pediatric providers that their rickets has resolved, but patients interpret this to mean that they no longer have XLH. It is recommended to have all patients with XLH be transitioned to adult providers who specialize in metabolic bone disease for continued care.

More information and resources about XLH can be found at the following websites: http://www.xlhnetwork.org, https:// rarediseases.org, https://www.xlhlink.com.

www.PENS.org

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