PENS Reporter Summer 2018

VOL 30/NO 1

An annual publication of the Pediatric Endocrinology

President’s

Nursing Society

In This Issue: 1 President’s Report 3 Meet Your PENS Board Members 4 PENS Award Winners & Volunteers 7 Highlights from PENS 2018 National Conference 8 Captured Memories from PENS 2018 National Conference 10 Clinical Exemplars 15 Education Committee Report 16 Nominations Committee Report 17 Research Committee Report 18 Looking Back: Moving Forward 19 Turner Syndrome Global Alliance 21 Have you joined the PENS E-Community?

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Report

ello PENS Members,

There was so much energy at our 2018 National Conference in Bonita Springs, Florida!

So many great opportunities to meet new people, discuss practice issues and, of course, learn. I am exhausted but the conference was well worth it! I hope to see you all again in Long Beach California, April 25-28, 2019. Please save the date!

With all that energy, I figure it is now is a good time to talk about leadership and the opportunities available with PENS as presented during the leadership breakfast. What does it take to be a leader? Vision, motivation, serving, empathy, creativity, thoroughness, managing, team building and risk taking are just a few of gifts and talents needed for serving as a leader. Even if you only have one or two of these qualities, you could still be a leader.

Of course, being passionate about PENS and its mission is key, but what else does it take? You need to be prepared! Take the time to review the position and know your role.

You need to be present by attending and participating in all face to face meetings and conference calls. You represent the membership and are their voice. It takes a village, we cannot be PENS without everyone’s help. However, you need to be fully aware of what you can and can’t do. Don’t overcommit, it’s better to say no than not fulfill your duty.

It really helps and can cut down on your stress if you can be honest with yourself. I am getting better at this, despite having lost my “just say no” post-it note that a colleague gave me years ago.

What types of leadership positions are available within PENS? A good place to start is to volunteer on a committee or task force. We have the Education Committee, this group concentrates on putting out at least four webinars per year, free of charge to PENS members. This group also reviews the PENS website and educational materials.

We have the Research Committee that reviews the research grant applications and the poster submissions for conference. The Conference Planning Committee does just that, it plans the conference, reviews the evaluations, abstract submissions and speakers. This committee has a limited number of members. You must apply to be on this committee. continued on page 2

4400 College Blvd., Suite 220, Overland Park, KS 66211  913.222.8657  877.936.7367  FAX: 913.222.8606  PENS@KELLENCOMPANY.COM

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“President’s Report” continued from page 2 The board reviews applicants and selects members. Applications are available on the PENS website and can be submitted until June 15. Once you are comfortable serving on a committee, I encourage you to consider becoming a committee chair.

2018-2019 President-Elect Catherine Flynn, RN, MSN, APRN, CDE Treasurer Margaret (Meg) Keil, PhD, CRNP Secretary Tamara Nenadovich, RN 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

We have two new task forces that are looking for volunteers. The Membership and Recruitment task force will be looking at ways to grow and retain members.

The Advocacy task force will focus on posting advocacy information on our website, educating members about advocacy and how to get involved. The Nominating Committee is an elected position and is a good way to get name recognition and meet members while recruiting for board positions: Once you are ready to run for a board position, many people will know you. The board positions include: President-Elect, President, Past President, Treasurer, Secretary and Director. Please consider volunteering, this is an excellent opportunity to give back to your organization!

The time commitment for these leadership opportunities varies from a one to six hours per month. If you are interested in running, the applications are available on the PENS website or if you would rather, you can reach out to any member of the Nominating Committee. If you are interested in a committee please reach out to the committee chair directly or contact PENS. From the lovely book, The Gift of the Caregiver, Julia Riley, our Keynote speaker gave me: “To reach the tender leaves, the giraffe must stick his neck out”.

I am looking forward to my second year as your President of PENS and I welcome any suggestions you may have for our organization.

Sincerely, Cheryl Switzer, MSN, RN, CPNP, CDE PENS President

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 © 2018 Pediatric Endocrinology Nursing Society Editor Tammy Nenadovich, RN PENS Executive Office 4400 College Boulevard Suite 220 Overland Park, KS 66211 Direct: 913.222.8657 Toll-Free: 877.936.7367 Fax: 913.222.8606 Website: www.PENS.org COPY SUBMISSIONS Please submit all future articles or items by e-mail to Tammy Nenadovich at nenadot@gmail.com.

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Meet Your 2018 Elected Board of Directors President–Elect Cathy Flynn, RN, MSN, APRN, CDE

Director Jan M. Foote, DNP, ARNP, CPNP, FAANP

Secretary Tamara (Tammy) Nenadovich, RN (re-elected)

Director Maureen Dever, MSN, CRNP, PPCNP-BC, CDE (re-elected)

Nominating Committee Members Lisa Richards, MSN, RN, CPNP-BC

Amy Bluming, BSN, RN

Meet Your PENS Board Members 2018-2019

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President Cheryl Switzer, MSN, RN, CPNP, CDE Term ends 2019

Director Rebecca Crespi, BA, RN, MSN, CPNP, CDE Term ends 2019

President–Elect Catherine (Cathy) Flynn, RN, MSN, APRN, CDE Term ends 2019

Director Jan M. Foote, DNP, ARNP, CPNP Term ends 2020

Treasurer Margaret (Meg) Keil, PhD, CRNP Term ends 2019

Director Maureen Dever, MSN, CPNP-BC Term ends 2020

Secretary Tamara (Tammy) Nenadovich, RN Term ends 2020

Executive Director JerrieLynn Kind, Executive Director/ Ex-Officio Board Member

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Congratulations to all the PENS Award Winners honored at this year’s conference!

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

Excellence in Education Award

Carol Howe, PhD, RN, CDE Our Poster awards, sponsored by our friends at Human Growth Foundation were also honored:

Best Nursing Research Poster Award

Best Case Presentation Poster Award

Jennifer Morone Sample Demographics and Cultural Responsiveness in Psychosocial and Behavioral Interventions with Adolescents with Type 1 Diabetes: A Systematic Review

Linda Steinkrauss Newly Diagnosed Type 1 Diabetes and Reactive Hypoglycemia Without Exogenous Insulin

Best Informational Poster Award Elizabeth Joyal CAH-X Syndrome: Expanding the Phenotype of Patients with Congenital Adrenal Hyperplasia to Include Ehlers Danlos Syndrome

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Awards continued from page 4

PENS Volunteers These fine individuals have been great PENS volunteers throughout the years!

Our Outgoing Board members:

Maryann Johnson, BSN, RN – 2017-18 Immediate Past President

Cathy Flynn, RN, MSN, APRN – Director 2016-18 Cathy will be assuming the President-Elect role after the conference

Our Continuing Committee Volunteers:

Thank you also to these outgoing members of the nominating committee:

Carol Howe, PhD, RN, CDE; Research Committee Chair Sharron Close, PhD, MS, CPNP-PC, Grant Director Linda Burkett, MSN, RN, CDE, Education Committee Chair Maryann Johnson, BSN, RN, Nominating Committee Chair Kelly Degrote, RN, BSN, Conference Planning Committee Chair

Mako Sather, MSN, RN, CPNP and Rebecca L. Thompson, BSN, RN, CDE

Conference Reimbursement Scholarships Clinical Exemplar: Gail Aikey, RN, BSN – Anchorage, Alaska Clinical Exemplar: Leigh Pughe, CPNP, RN – Greenwich, Connecticut Clinical Exemplar: Rebecca Thompson, BSN, RN, CDE – Swedesboro, New Jersey Poster: Jennifer Morone, MA-ATR, BSN – Roselle, New Jersey Poster: Colleen McGauley, BSN, RN – Brookline, Massachusetts Poster: Mako Sather, MSN, RN, CPNP – Littleton, Colorado continued on page 6 www.PENS.org

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Awards continued from page 5

Research Grants: $15,000 Research Award:

$15,000 Research Award:

National Survey of Neonatal Growth Measurement Practices

The Influence of Social Determinants of Health on Family and Self-management of Type 1 Diabetes in Black Single Parent Families

Jan M. Foote, DNP, ARNP, CPNP, FAANP – Principal Investigator

Jennifer Morone, MA-ATR, BS-RN – Principal Investigator

Co-Investigators (Not pictured) – Kirsten Hanrahan, DNP, ARNP, CPNP; Pamela Mulder, PhD, RN; Anne Nielsen, DNP, ARNP, CPNP; Yelena Perkhounkova, PhD; Maria Hein, MSW; Ann Marie McCarthy, PhD, RN, PNP, FNASN, FAAN

$90,000 Multi-Center Grant: Development of an Adrenal Crisis Prevention Mobile Health Application (ACPapp)

Louise Fleming, PhD, MSN-Ed, RN – Overall Study Principal Investigator Site Principal Investigators – Meg Keil, PhD, PNP and Kevin R. Lewis DNP, ARNP, PPCNP-BC, CDE

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Highlights from PENS 2018 National Conference

The 2018 National Conference was a great success in Bonita Springs, Florida. It is my sincere hope that those who were able to attend had plentiful opportunities for learning, friendship, and hopefully a little bit of relaxation and fun. The amazing weather (between the rain drops) and beautiful location was certainly enjoyed by all.

This year we were once again able to offer a great pre-conference workshop called H.A.N.D.S., Helping Administer to the Need of the Student with Diabetes in School. This program was developed and coordinated through the National Association of School Nurses.

We appreciated the generous support from Lilly, Novo Nordisk, and Medtronic to help provide this educational offering.

It is one of the goals of the conference planning committee to provide attendees with content to suit a variety of interest levels, including diabetes, endocrine, and topics that are of broad and current interest. This year, we were proud to bring together discussions about the prevention and treatment of pain in our patients by offering both a panel discussion and general session related to emotional trauma, as well as intriguing case studies, and a variety of other sessions. It is our hope that attendees will take information learned at the conference with them and implement them into their practice.

The CPC conducts an annual review of the committee charter. This year the CPC did make the recommendation to the board that we amend the charter to add the position of vice-chair to the committee. The vice-chair will be appointed by the Board of Directors, whom will assume the chair role after one year as deemed appropriate by the Board. Based on this change, I am happy to welcome Sheri Luke on as the vice-chair for the 2019 conference in Long Beach, CA. A committee meeting was held on-site for those interested in serving on the CPC, which provided the opportunity to ask questions and submit an application to serve. The PENS

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Board will be reviewing all applications and members will be selected in the coming weeks.

In closing, I want to extend my thanks to the outstanding 2018 committee members for their dedication to this conference and for all of the work they have put in to making this program a reality. Committee members included:  Mary Burr, DNP, CPNP-PC  Karen Engel, RNC  Nicole Kirouac, BN, RN  Sheri Luke, MSN, FNP-C  Jane Torkelson, MS, RN  Cheryl Switzer, MSN, RN, CPNP, CDE (Board Liaison) Thank you also to the PENS staff who worked diligently to develop our conference program and help with logistics of executing our conference, including Melinda O’Brien, Education Program Coordinator; Christie Ross, Incoming Education Program Coordinator; Caitlin Arnold, Meeting Manager; and JerrieLynn Kind, Executive Director.

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 2019 annual conference in Long Beach, Calif., April 25–28, 2019. Watch your email for the call for presentations, poster abstracts, and for further information related to our 2019 conference.

Kelly DeGrote, BSN, RN-BC 

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Captured Memories from PENS 2018 National Conference Lots of fun, friends and education were found at the 2018 PENS Conference in Bonita Springs! We hope you took snapshots reconnected with longtime PENS friends and made new ones while attending!

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“Captured Memories” continued from page 8

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Clinical Exemplar: This piece was submitted as part of PENS Conference Reimbursement Scholarship Application

Gail Aikey, RN, BSN I would like to introduce myself, my name is Gail Aikey RN. I have been a nurse for 42 years, so long in fact, that it feels like RN has become part of my name. I have many stories from my career that are interesting or funny, or downright scary. The story I am going to tell you is about one of the most challenging events I have faced in my career.

I was working as a pediatric case manager/discharge planner and received a referral from the pediatric hospitalist to schedule a care conference for a new admission in the Pediatric unit. The patient was a male toddler (SB) with acute renal failure associated with a hugely distended and possible neurogenic bladder. The pediatric team insisted that social services, pediatric neurologist, nephrologist, neuro surgeon, and urologist participate in the care conference. To say the least, my nurse radar started going off. There was something I did not know about our patient. I decided it was time for a talk with the primary nurse and doc. The patient had presented to the ED crying in pain, bladder was distended up to his diaphragm, kidneys were grossly distended and labs indicted his kidneys were in distress. After insertion of a Foley catheter, a little pain medication, he fell asleep and was admitted to the hospital to determine the cause of his urinary retention.

Our little man’s parents were reluctant to agree with the admission and were sure they could solve the problem with their home treatments.

SB and his parents were new to Alaska and had been in the US for a few years after immigrating from the Viet Nam/Cambodia area and of the Hmong Culture. SB’s family was convinced that because of the slamming of a door, a restless or evil spirit was present and scared the child and this was why he could not pee. Doctors discovered during the exam that SB could pull himself up in his crib, but was not really able to support himself, his muscle tone was not quite right, and a sacral dimple was not 100% closed. The doctors present at the time of SB’s birth wanted to investigate the dimple at that time, however, the parents would not give consent, nor would they consent to diagnostic testing at this time. Child services was now added to my list of care conference attendees.

I decided I needed to understand more about the Hmong culture. The term Hmong is a culture not a nationality.

The culture consists of farmers that migrated around www.PENS.org

northern China, Laos, and Cambodia that live simple and very spiritually oriented lives. Shamans were both religious and medical leaders, contacting spirits, performing rituals and ceremonies that were believed to prevent or cause things to happen. America recruited many Cambodian and Laotian Hmong to help us defeat the Viet Cong at the end of the Viet Nam war, history will tell you things did not go well and we left the country in a mess. Many Hmong migrated to the US for a better life but had a very hard time adjusting to the western culture and medicine. Many Hmong communities continue to struggle with adjustment to this day.

It took several days to get all the players necessary for the care conference into the same room. The social worker I worked with at the time was able to arrange for a Shaman and a live interpreter for our care conference The medical team felt very strongly that a CAT scan was needed to determine what was happening to SB’s spinal cord because he was not voiding on his own and his lower extremities seemed to be getting weaker. The family still wanted to take SB home to allow the shaman to fix him. I was impressed with the number of creative ways the various medical professionals tried to explain a tethered spinal cord and a possible myelomeningocele, to convince the parents to allow a work up. We had to get a court order for diagnostic studies and intermittent catheterizations. SB’s mother walked out of the care conference and attempted to take SB and leave the hospital with him against medical advice. OCS took emergency custody of the child, emotions escalated, security was involved, and visiting was restricted for the parents. I felt that the medical team had scored a win and felt righteous in our actions. Western medicine would save our patient. After the first care conference our Office of Children’s services (OCS) opened a case.

More care conferences were scheduled and specialists were invited. The last care conference that we had the parents were invited and we extended the invitation for them to bring whomever they thought would be able to provide support and understanding during the meeting.

The parents brought multiple adult male relatives, uncles and brothers to both parents. The agenda for the meeting was to request permission to do an MRI. SB did indeed have a tethered cord that was becoming more compressed as he grew and this was why his symptoms were slowly escalating. We emphasized that if there continued on page 11 10

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continued from page 10 was no intervention that SB may lose muscle strength, bladder control and may never walk again. Discussion at this meeting was tense and emotional. OCS talked about going to court again and possibly taking SB out of the family home. One of SB’s adult male relatives reminded us that our government had given them guns and they were not afraid to use one. Mother informed us that she would pray for evil to happen to us and our families.

To say the least the meeting was stopped at this point with no plan for future procedures for SB. I was unnerved and happy I was not asked to schedule a future care conference. Discussions would be held with the parents, the doctors, and the courts. Final decision was the OCS would accompany the family to Seattle Children’s for an MRI and pediatric neurosurgical evaluation. I never heard the outcome of that evaluation and I heard the family remained in Seattle with friends and extended family.

I knew in my rational medical brain that the medical team was doing what they felt what was right for SB. My mother brain and heart were telling me something completely different. I needed to figure out what to do to prevent a situation like this from happening again. There is a fairly large Hmong community in the state of Alaska and it was only a matter of time before another issue like this one would occur in our hospital.

My awesome social worker had the book; When the Spirit Catches You and You Fall Down and suggested reading it may provide some insight to the Hmong culture. The

book was written by Anne Fadiman and chronicles the struggles of a Hmong family and their interactions with the health care system. This book spends time recounting Hmong history and describes the collision between western medicine and the Hmong culture. The more I read the book, the more I tried putting myself in the same situation these parents were experiencing.

I would be very anxious to have a sick child in a place where I did not understand the language or culture, and be put in a room with 10 people telling me that my life long beliefs are bogus and that I am hurting my child.

The medical team was appalled that two intelligent adults could actually believe that slamming a door would take away someone’s ability to void. The truth was we had a Mom and Dad that were fighting to do what they had believed all their lives was the best way to take care of their son. My heart hurt for this family and I realized any parent would have reacted the same if facing a similar situation. All the medical team saw, were our differences and none of our similarities. I can only imagine the pain and distress we put on this family.

This little boy taught me the importance of cultural awareness and how huge an impact it has in health care. We were never going to gain the trust of this family without integrating their culture with western medicine to care for their child. Cultural awareness is key to delivering compassionate care for every patient, in every clinical setting. Understand our differences while embracing our similarities.

Gail Aikey RN 

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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Clinical Exemplar: This piece was submitted as part of PENS Conference Reimbursement Scholarship Application

Leigh Pughe, RN, CPNP As nurse practitioners, we strive to provide the best medical care to our patients and advocate for our patients and their families. We put forward our best efforts to get our patients optimal medical care and treatment in a timely manner. Unfortunately, we tend to run into a lot of ‘red tape’, which frequently comes in the form of requests for authorizations and denials from insurance companies.

We often find ourselves spending hours on the phone with insurance companies trying to a get a specific medication or diabetes supply covered.

A diagnosis of type 1 diabetes is undoubtedly difficult at any age, but we recently had a 10 month old male who was diagnosed with type 1 diabetes. His parents were very receptive to education while he was admitted for new onset diabetes education. Since his parents caught on to the diabetes management education very quickly and were very interested in obtaining the best possible management for their son’s diabetes, the option of management with an insulin pump was discussed. During the initial admission, I met with this 10 month old’s parents, educated them on the benefits of an insulin pump to help manage their child’s type 1 diabetes, and showed them all of the different insulin pump options. They chose a specific insulin pump based on certain criteria that they thought would be the most useful and beneficial for them – remote blousing (so that the pump could be hidden in their son’s clothing and they could dose his insulin from afar) and small basal rate increments (for more accurate dosing and improved blood glucose management). The patient was discharged home on basal/bolus insulin via subcutaneous injection, and I quickly set about to obtain an insulin pump for him as soon as possible, with the goal of making his parents’ lives easier when managing their son’s diabetes. Although I have ‘battled’ with insurance companies for many years trying to get patients’ medications and diabetes supplies covered by insurance, this was my most difficult and timeconsuming fight, but was also my most rewarding one.

I applied for his insulin pump though his insurance, but it was quickly denied by insurance for a reason that was not valid (they stated that it was not approve for a child under 2 years old, and the pump company was able to confirm that this was inaccurate). This began my long and determined battle to obtain an insulin pump for this 10 month old patient and his parents, who were desperate to have him managed on an insulin pump to help them provide the

best diabetes care for their son. With the initial denial, I appealed through the insurance company, but it was again denied. I spent multiple days and hours (probably a total of 5-6 hours over 4-5 days) on the phone with the insurance company and the pump company to figure out how to get this patient’s insulin pump approved.

When I was unsuccessful and was not receiving responses from the insurance company via phone, I took it upon myself to go to the actual insurance office to speak with someone in-person and resolve the issue. It took me two trips to the insurance office, waiting to be helped, speaking with supervisors, and then additional follow up calls with the insurance company and pump company, before the pump was finally approved. Of course, it again took a few hours of calls to obtain authorization for the test strips brand that was compatible with the insulin pump, but eventually everything was fully covered, and the patient received the insulin pump. Through all of the insurance calls and visits, I kept the parents informed, and they were grateful for the efforts.

The family was trained on the insulin pump soon after it arrived to their house, and he has been managed on the insulin pump since. His parents have been appreciative for the efforts that were put into trying to get this insulin pump approved for this patient.

While I was working to obtain authorization for the insulin pump for this patient, it really hit me how much time is spent advocating for our patients and working with insurance companies. The reason that this patient’s insulin pump was denied was inaccurate. A provider who did not have time or feel the need to advocate as heavily for the patient might have succumbed to the insurance company’s denial, and told the family that they had to wait until the patient turned 2 years old. However, I had the motivation and put in the effort to spend many hours on the phone, and physically go to the insurance company office, to advocate for my patient and his parents, to get my patient the optimal diabetes management. It seems easy for an insurance company to deny an insulin pump for a patient, but as providers, we know the patient and the family, and are able to understand the consequences of a denial and the significant positives of an approval.

Certainly, it was a very frustrating process, but I knew that it would be more than worth it for the patient and continued on page 13

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PENS Conference Reimbursement Scholarship 2018 continued from page 12 his family, and they were counting on me to help them navigate the insurance system when they were dealing with a new diagnosis of type 1 diabetes for their 10 month old. To this day, his parents still verbalize how happy they are that they feel like they are doing the best they can to manage their son’s type 1 diabetes.

I am grateful that we were able to reach the goal of having the patient managed on an insulin pump. We are always trying to find ways to have insurance companies provide

authorization for the best medical management for a patient’s condition, but patient advocacy by the patient’s provider (NP) is one of the strongest ways to have this accomplished.

In the future, I will continue to advocate for my patients, no matter how many frustrating hours on the phone it may take, because I know that it is worth it. 

Clinical Exemplar: This piece was submitted as part of PENS Conference Reimbursement Scholarship Application

Rebecca Thompson, BSN, RN, CDE One of my responsibilities as an endocrine nurse over the past twenty years included coordinating growth hormone for patients. My goal in pediatric endocrinology nursing practice has been to help maximize individual patient adherence and clinical outcome while on growth hormone therapy. Providing patient-centered care offers the choice in clinical decisions, when available, to meet individual patient needs. Patient- centered therapy can help accomplish this goal.

Multiple recombinant human growth hormone brand formulations have been available in numerous forms of delivery devices. These devices have unique design features, some with potential issues related to use. The ease of self-injection and convenience of the delivery device covered by insurance and prescribed by provider may improve satisfaction and adherence. Because of the multiple strengths, concentrations, and dose increments, each one with varied steps of preparation and administration, and storage requirements, growth hormone can be very confusing for patients, caregivers, pharmacists, health care professionals, and even endocrine staff, including prescribers.

To add to the confusion, brand switches have become more prevalent due to multiple brands commercially available and insurance carriers’ preference coverage strategies.

Therefore, coordinating growth hormone therapy over each patient’s treatment course, based on which product is currently covered by their insurance and prescribed, can be extremely complex and stressful. Speaking with many patients and caregivers, I recognized how frustrated and overwhelmed they become of the process, especially when they have to switch brands especially if they are

required to use one that may be more difficult than a previous type. This leads to the ongoing challenge to all endocrine nurses involved with managing patients on growth hormone therapy.

I fondly remember a 20 year old young lady with muscular dystrophy, who when 5 years old underwent a resection of a craniopharyngioma with subsequent development of panhypopituitarism. She had limited mobility and activity but was a very motivated student and patient, eager to do her best in everything she attempted, including giving her own daily injections. I admired her determination, courage and strength in her abilities.

She had started on Genotropin MiniQuick prefilled single dose syringes and remained on them for 9 years. When she was 14 years old, her pharmacy benefit coverage changed and she was introduced and taught to use the Norditropin FlexPro 15mg pen device. It is a multi-dosed, prefilled, premixed and preloaded, biodegradable disposable pen, with improved ergonomic design in a shorter thicker device with internal dialing which reduces required thumb reach. She and her mother loved the device because it was “super easy” for her to prepare and use. I was very excited for her to continue to meet her individual needs!

But when she was 20, her plan denied coverage of Norditropin FlexPro because it “was not medically necessary; Humatrope, a therapeutic alternative, must be tried and determined whether or not effective.”

Unfortunately, I knew this step was necessary. I provided mom and her with the Humatrope website to review the instructions of the refillable HumatroPen, reconstitution kit with multiple steps to prepare the Humatrope continued on page 14

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continued from page 13 cartridge before putting it in the device, and how to use the device. I submitted the paperwork to the humatrope case manager with request for home injection training to avoid interruption in therapy. I encouraged them to call with any questions or concerns.

Within a month, mom called extremely upset reporting to me that her daughter was so frustrated that she was physically unable to prepare the cartridge using the mixing kit and administer her own injection using the HumatroPen, complaining it was too long and hard to push and hold the dose button. I expressed my concern and empathy. I reviewed that Humatrope also came in a vial with use of a syringe. She stated she hates the look of a syringe and she wanted to go back using the Norditropin FlexPro. She could lose her independence in self-care affecting her well being. I knew it would not be easy but I needed to advocate for her by writing a letter of medical necessity and appeal requesting a non-formulary brand. I

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added the details of the devices, her medical challenges, which included the lack of dexterity and strength in her hands due to her muscular dystrophy, and stressed her specific personal goals of self-care and her desire to continue her independence with this lifelong medication.

I completed the prior authorization form stating that she attempted Humatrope, but was unable to use it successfully; she requested what was best for her which was the Norditropin FlexPro. The denial was overturned.

The appeal was a SUCCESS! Her choice, Norditropin FlexPro, was approved for 1 year. They were thankful and very happy. I was thrilled.

Working on behalf of my patient, I contributed to the resolution of a serious clinical concern, regarding selfcare capabilities, and maximizing individual adherence and clinical outcome. I was proud that I acted as a moral agent to advocate and succeeded in my goal of patientcentered care. 

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Education Committee 2017-18 Report 2017-18 was a bit slow, but the 2018-19 year is off to a great start. The education team with our board liaison, Cathy Flynn, had a great meeting on Saturday morning at the 2018 National Conference.

We are already working to update the PENS education page on our website. Chapter information has been removed from the website as it was outdated. The Partners in Education web page has changed its name; this web page is now called Education Resources.

This web page is currently being updated and it will include 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.

Shaylyn McDaniel has been working with the Pediatric Endocrine Society on patient and family education videos which will be posted to the website.

We have received funding to provide continuing education videos for our members and the committee has planned several webinars. We have several topics

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planned for this year, but if you have a topic you would like to see or have a topic you are willing to present, please let us know.

I would like to acknowledge the outstanding team of Education Committee members and thank them for a fantastic year of educational offerings: Nila P. Cardozo Barb Lightner Shaylyn McDaniel Leigh Pughe Catherine Flynn Melinda O’Brien, PENS Education Coordinator JerrieLynn Kind, PENS Executive Director It was great seeing everyone at PENS this year.

Until next time,

Linda

Linda Burkett, MSN, RN, CDE Education Chair 

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Nominations Committee 2017-18 Report Chair:

Maryann Johnson, RN, BSN, M.Ed.

Board Liaison:

JerrieLynn Kind

Committee Members: Mako E. Sather, MSN, RN, CPNP Cynthia Luccio, DNP, RN, CNP Mandi Cafasso, BSN, RN, CDE

Purpose of Committee: The PENS Nominating Committee is responsible for recruiting candidates, and slating of the ballot for the PENS annual election.

Nominating Committee Members also are charged with membership recruitment and retention.

Summary of Projects: Candidates for positions of President-Elect (2 applicants), Secretary (1 applicant), Directors (3 applicants), and Nominating Committee members (2 applicants). Candidates submitted their applications and the ballots were cast with voting closing on March 1st. Candidates were notified March 7th. The voting results were as follows: President-Elect: Catherine (Cathy) Flynn Secretary:

Tamara (Tammy) Nenadovich

Directors:

Maureen Dever & Jan Foote

Nominating Committee Members: Amy Blumling Lisa Richards The task of membership retention was approached by contacting members that had not renewed their membership. This task was carried out by members of the Nominating Committee and the PENS Board of Directors.

109 lapsed members were contacted, as a result, in 9 individuals renewed their membership. I would encourage our members and former members to contact me with any questions regarding membership.

Remember that membership brings benefits such as decreased conference fees and obtaining those much needed annual CEU’s.

Positions to fill next year will be Director, Treasurer and 2 Nominations Committee members. Feel free to contact me if you are interested in learning more about these positions.

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Research Committee 2017-18 Report Chair:

Carol Howe, PhD, RN, CDE

Board Liaison:

Maureen Dever, MSN, CPNP- BC

Grant Director: Sharron M. Close, PhD, MS, CPNP-PC Committee Members: Linda Burkett, MSN, RN, CDE Sally S. Cohen, PhD, RN FAAN Isabel Couto, MSN, RN, CPN, NE-BC Andrew A. Dwyer Shari Liesch, APNP, CDE Cynthia Snyder, MSN, RN Linda Steinkrauss, MSN, RN, CPNP In doing research we question the world’s very secrets and intimacies which are constitutive of the world, and which bring the world into being for us and in us. Then research is a caring act: we want to know that which is most essential to being.

- Van Manen (1990) Van Manen’s quote captures what I saw as I took in all the research efforts of our PENS members. I hope I can speak for all of us in saying that our research efforts are truly a caring act as we strive for best practices and optimal outcomes for children with endocrine disorders.

A special thank you to our 3 speakers who presented their research projects at the General Research Session. Padmasree Veeraraghavan presented Incidence and Preventative Strategies of Adrenal Crisis in Congenital Adrenal Hyperplasia. Amy Moffett presented Optimizing Lipid Screening For T1DM Patients in Diabetes Clinic, and Krista Schroeder, a postdoctoral student mentored by Terri Lipman, presented How Does Poverty Impact Childhood Obesity? A Summary of the Research and Implications for Clinical Practice.

Our poster session was lively with lots of dialogue about research, quality improvement projects, endocrine cases, and new information that is helpful to all of us. Posters represented four different abstract types: research, informational, case study, and product-based. The Research Committee selected three best posters: Jennifer Morone received Best Research Poster award for Sample Demographics and Cultural Responsiveness in Psychosocial and Behavioral Interventions with Adolescents with Type 1 Diabetes: A Systematic Review; Elizabeth Joyal was awarded Best Informational poster for CAH-X Syndrome: Expanding the Phenotype of Patients with Congenital Adrenal Hyperplasia to Include Ehlers Danlos Syndrome; and Linda Steinkrauss received the Best Case Study award for Newly Diagnosed Type 1 Diabetes and Reactive Hypoglycemia Without Exogenous Insulin. Please find all abstracts published in the current May/June 2018 issue of the Journal of Pediatric Nursing.

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Summer Edition  2018

Looking Back: Moving Forward By: Fran Waite As I prepare for a new chapter in my life and ready myself for retirement, I wanted to share some of my thoughts on what Genentech and PENS has meant to me over the years.

I began my nursing career in 1971 as an operating room nurse. Forty-seven years later I feel fortunate to say that, while I have had varied experiences in nursing, my time as a Genentech Clinical Coordinator and my experiences as a member of PENS are among the most rewarding parts of that career.

When I first started working in pediatric endocrinology in 1991, I never realized the adventure I was heading into. I couldn’t imagine the family of nurses I would meet who would become the best support system for a nurse working in this complicated field- the Pediatric Endocrinology Nursing Society, or that I would have been able to advance to the role of President of this group and have amazing experiences to look back on.

My entry into the biotech industry began in 1998, just after completing my term as President of PENS. Genentech asked me to be the first endocrinology clinical coordinator for the organization and I was excited to take on this new role. In my years with Genentech, I have watched other nurses in PENS accept similar industry roles. These individuals include 2 PENS Presidents, 1 Board member at large, 2 Secretaries, 1 Education and Manual Chapter Chair, 2 Research Committee Chairs, 1 Grants Chair and 3 Conference Planning Chairs. Genentech recognized early on that nurses were in a great position to provide input on how best to support patients and healthcare providers through education.

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In 1987, the PENS organization was founded with the support of Genentech and other industry sponsors because they recognized the importance of the organization as a way to foster knowledge and idea sharing among the nursing community. After all, nurses are in a great position to advocate for their patients.

Over the years, PENS has become the seminal organization for developing a forum for the sharing of knowledge and ideas among pediatric endocrinology nurses. I attended my first PENS meeting at the Colonnade Hotel (for those of you who attended, you may remember the little yellow rubber ducks they left in your room, instead of chocolates) in Boston in 1992.

We all fit in one little room and there were maybe 3-4 exhibitors crammed in the hallway outside of our room.

We’ve come a long way since those days, but the support for patients and healthcare providers is still ongoing.

When I first joined Genentech, there were a grand total of 6 clinical coordinators in the company covering 3 brands. Today, there are over 200 clinical coordinators across the company. I am thrilled that Genentech recognizes the significant contributions nurses can and do make for industry. Education is at the forefront of our responsibilities, and bringing our clinical experience to the brand teams is an important adjunct.

I will be retiring in October and another chapter of my life will be completed. Nursing has been not only my life but also my privilege. PENS has been my nursing organization. I will miss them both. 

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Turner Syndrome Global Alliance Turner Syndrome Global Alliance (TSGA) is an advocate organization that seeks to connect science, resources, and funding to the Turner Syndrome Community. TSGA was founded in 2014 by parents of girls with Turner syndrome (TS) in response to the lack of a coordinated effort to promote research on TS. Girls and women with TS deserve to have access to good information to help make informed decisions about their health. The founders of TSGA want to make a significant impact on research that will benefit those who live with TS today.

TSGA advocates have led the development of comprehensive care clinics in their local communities including in Kansas City, Denver, and Chapel Hill. The positive response from the patient community to a model of care that allows patients to see multiple providers in a clinic setting resulted in the TSGA KidNECT model of care. KidNECT includes four key components of a successful clinic program: Networking, Education, Comprehensive Coordinated Care, and Transitions.

There are currently 31 self-identified Turner syndrome clinics across the country, and TSGA is working to designate these programs into Levels of Care so that the patient community can choose where to access care. The highest Level of Care that a clinic can be designated is a Regional Resource Center, which will include coordinated access to all health specialists and leadership in multi-institutional research.

To promote research, TSGA is working with Clinic Directors to develop shared templates for a REDCap database to collect patient data, including data uploaded from EPIC. By partnering with clinics on this project, TSGA anticipates that there will be a large enough pool

of data to interest researchers within one year.

TSGA is a founding member of the Turner Resource Network, a collaborative group that also includes Turner Syndrome Society, medical professionals, and researchers. The Turner Resource Network is hosting a Turner Syndrome Science Symposium in July that aims to bring Turner syndrome to a larger research platform.

Key speakers include Dr. Diana Bianchi, Director of the National Institute of Child Health and Human Development, and Dr. Scott Hawley, Member, National Academy of Sciences and the leading authority on mitotic and meiotic biology. TSGA is thrilled to recently have been awarded a Patient-Centered Outcomes Research Institute (PCORI) contract to help fund this meeting.

In addition to increasing research, TSGA has been working to fill gaps in TS resources. The TSGA Resource Kit is designed specifically for newly diagnosed families and provides reliable, research-based resources on a flash drive. In addition, the Kit includes a Teddy Bear to help girls and their families understand that they have joined a supportive community. Initial supplies were funded by a grant, and TSGA is encouraging Clinics to work with local advocates to fund additional Kits.

TSGA is also a founding member of the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) which works to promote Growth Awareness Week each September. TSGA is based in Kansas City, KS where the community generously participates in a fundraising walk each year, the TSGA Kaleidoscope Walk for Turner Syndrome. continued on page 19

Photos courtesy of Turner Syndrome Global Alliance www.PENS.org

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Turner Syndrome Global Alliance continued from page 18 Additional information can be found here: TSGA Website - TSGAlliance.org Resource Kits for Newly Diagnosed Families: http://tsgalliance.org/shopping/ 2018 TS Symposium Agenda: https://turnersyndrome.z2systems.com/np/clients/turnersyndrome/event.jsp?event=820& New Care Guidelines for TS and Clinic Designation Criteria including information on the KidNECT Model of Care: http://tsgalliance.org/httptsgalliance-orgconnect-to-resourcesfor-individuals-families/for-professionals/ If you are interested in developing a Coordinated Care Clinic, contact TSGA@TSGAlliance.org

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Summer Edition  2018

joined the PENS Have you joined the PENS Why wait?

Start now!

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E-Community? Why wait? Start now!

Communication between PENS members just got easier! ȋ͜͞ Ȃ ͟͜ 

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!

minutes), it is possible that the system will “time out” which mation will cause you to receive an Current forum topics include: General Peds Endo and ted in Diabetes. error when attempting to e have postupyour message. The post How do I sign (subscribe)? nteract Simply sign inmay to the then Membersbe Onlylost section with your and need to ID number and password. If you need your ID number, check your Insider email or contact us at PENS@ be re-composed. 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.



Editing Messages Please be sure to proof messages prior to posting

X Editing Messages (clicking the save button at the bottom of the screen). While the Forums provide the ability to go Please be sure to proof messages topost, posting back andprior “edit” your please be aware that every edit that is made will be re-posted to all committee (clicking the save button at the bottom of the screen). members resulting in multiple alerts going out.  ability Responding Messages While the Forums provide the totogo back and When you receive the notification email that a our ID “edit” your post, please be aware that edit posting hasevery been created, youthat must be logged in the community to reply. If you are continuously it work? check How doesis made will be re-posted to allto committee members logged in, you can click the link in the email and Once subscribed, you will be able to interact with your response will be posted. However, if you are om. other PENS members resulting in questions/comments multiple alerts going out. by posting not logged in, your response will not post. It is best 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.”

to come to the community and sign in to respond

sword effectively.

X Responding to Messages As nurses, we know we get a lot of great information

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from one another. This tool will allow you to ask and get answers in directly from your peers! We ǡ Posting Tips posting has been created, youquestions must be logged to the hope that you enjoy the community and get the most out Messages  Lengthycommunity this member benefit. logged in, to reply. If you areofcontinuously If you plan to post a lengthy message, it would be If you have questions or problems, please do not hesitate ations wise to write in aclick Word document first, then youit out can the link in the email and your response to contact us. copy and paste the text to the Forum when you are peruse ready to post you are interruptedHowever, or otherwise if you are not logged in, willit. Ifbe posted. delayed while composing a post (20-30 minutes), it is possible your response willout” not post. It is best to come to the that the system will “time 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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As nurses, we know we get a lot of great information from one another. This tool will allow you to ask questions and www.PENS.org

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