PENS Reporter, Winter 2014 by AMP, Inc

VOL 26/NO 2

PENS

eporter

A bi-annual publication of the Pediatric Endocrinology

President’s

Nursing Society

Report

H In This Issue: 1 President’s Report 2 PENS Excellence in Nursing Awards 3 Board Meeting 3 Don’t Let Your Membership Expire 5 Committee Reports 6 Type 1 Diabetes Through the Life Span: A Position Statement of the American Diabetes Association 7 Current Controversies in Turner Syndrome: Genetic Testing, Assisted Reproduction, and Cardiovascular Risks

appy Holidays! Thank-you all for being PENS members! Also a thank you shout out to all of our volunteers from committee members, chairs, the elected Board of Directors and our colleagues from PENS head office at AMP for your ongoing support and management in this amazing organization! Your Board of Directors met earlier this fall and they have many endeavors on the go. You will see from the various committee reports enclosed just how busy they have been. We continue to build a relationship with the Pediatric Endocrine Society and I am excited to announce that we (PENS) in conjunction with Pediatric Endocrinology Nurses from three other countries are going to be offering a full day nursing educational session at the 10th International Meeting of Pediatric Endocrinology in September of 2017 in Washington, DC. Don’t fret this will not replace our annual PENS conference, but it will be an extra opportunity for PENS nurses should they wish to attend. In case you had not seen this, we wanted to bring to your attention an article and editorial that was put out in the journal titled “Neurology” related to long-term risk of stroke in growth hormone treated children by Poidvin et al. in August 2014. You can view the article and the response by the pediatric endocrinology society and others here: http://www.neurology.org/content/83/9/780/ reply#neurology_el_61673 If you have any suggestions for improving PENS or would like to volunteer with PENS, please do not hesitate to contact us – every voice deserves to be heard and that includes yours! “Unless we are making progress in our nursing every year, every month, every week, take my word for it we are going back.” Florence Nightingale Thankfully yours,

8 PENS E-Community – Join Us! 9 Endocrine Camp Highlight

Nicole Kirouac, RN, BN PENS President

P.O. Box 14516 Lenexa, KS 66285-4516  913.895.4628  877.936.7367  FAX: 913.895.4652  pens@goAMP.com www.pens.org

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2014-2015 President Nicole Kirouac, RN, BN nkirouac@hsc.mb.ca President-Elect Maryann Johnson, BSN, RN, M.Ed. magj25@gmail.com Treasurer Linda Burkett, MSN, RN, CDE linda.j.burkett@medtronic.com Secretary Lisa M. Davis, MSN, CPNP davispnp@gmail.com Director Carol Van Ryzin, RN, CPNP carol.vanryzin@yahoo.com Director Terri Lipman, PhD, CRNP lipman@nursing.upenn.edu Immediate Past President Catherine P. Metzinger, AAS, RN, CDE Patricenewman60@gmail.com Executive Director JerrieLynn Kind jlkind@goAMP.com

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 © 2014 Pediatric Endocrinology Nursing Society Editor Lisa M. Davis, MSN, CPNP Akron Children’s Hospital PENS Executive Office P.O. Box 14516 Lenexa, KS 66285-4516 Direct: 913.895.4628 Toll-Free: 877.936.7367 Fax: 913.895.4652 Website: www.pens.org COPY SUBMISSIONS Please submit all future articles or items by e-mail to Lisa Davis at davispnp@gmail.com. Subject: PENS Reporter Item

PENS Excellence in Nursing Awards Apply now for the PENS Excellence in Nursing Awards! Please consider nominating yourself or another worthy individual to receive an award that honors our PENS members. Each award winner will receive a one-year membership in PENS and an award certificate for display. Excellence in Clinical Practice Award Excellence in Advanced Practice Award Excellence in Education Award  Application deadline is February 15. Please visit our website for more information and award application. If you have any questions about the grants or experience any problems applying, please contact the Executive Office.

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Board Meeting Your PENS Board of Directors met at their MidYear Board meeting in early September. The Board talked about a host of items including: results of our Bylaws vote, preparing a position statement on growth measurements in children, the potential for an International Nursing Day to be hosted in conjunction with the Pediatric Endocrine Society (PES) in 2017, an upcoming partnership with AbbVie called “Cookies for a Cause”, and continued work on its Strategic Plan. Members are always welcome to contact Board members at any time if you have feedback or would like to address an issue with your Board. As you are all aware, our Bylaws were voted on this summer and all changes have passed. As a result, the Strategic Plan was changed to reflect these decisions. Both documents are posted in the members section of the PENS website for your information.

Don’t Let Your Membership Expire! We value your PENS membership and we hope that you do too! Renewals were sent to each PENS member beginning this past October. Memberships expire on Dec. 31 each year. Memberships not paid by Jan. 31 will be dropped from our membership roster. Only current members can attend the conference at the member rate, so be sure to pay your renewal fee today!

PENS Members Enjoy These Benefits:  Member Discount to Annual Education Conference  Opportunity for Research Grants and Academic Scholarships  Opportunity for Continuing Education and Nursing Excellence Awards  Subscription to Journal of Pediatric Nursing  E-Community Discussion Forum You can renew online by signing on to the Members Services website and clicking “My Account.”

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COMMITTEE REPORTS Education

Committee

Conference Planning

Committee

Committee Members: Kathy Clark, RN, MSN, PNP-BC; Joni Fusick, BSN, RN; Helen Grosskreuz, BSN, RN; Judith Lowitz; Mako Sather, MSN, RN, CPNP; Traci Schaeffer, BSN, RN; Nancy Varni, MS, MBA, RN, CPN; Colleen Weber, BSN, RN

Committee Members: Maryann Johnson, BSN, M. Ed.; Meg Keil, PhD, CRNP; Catherine P. Metzinger, AAS, RN, CDE; Cheryl Switzer, MSN, RN, BPNP; Valerie Verdia, RN

Board Liaison: Carol Van Ryzin, RN, CPNP

Purpose of the Committee: Plan a 3 1/2 day conference with a minimum of 19 CEs including at least two general sessions per day, and multiple concurrent sessions addressing the educational needs of novice endocrine nurses, advanced practice endocrine nurses, and endocrine nurses who are diabetes educators.

Purpose of the Committee: Under the direction of the Board of PENS, the Education Committee is responsible for developing educational projects/materials to meet the educational needs of the members and the families they serve. Summary of Projects: The Education Committee has been busy this fall. We are working on a page of Continuing Education (CE) links for our PENS members. Our page will consist of links to CE opportunities available on the web. These will be free or low cost offerings in endocrinology and diabetes. PENS members have worked very hard for years to create documents that our members can use in their practice to educate patients and families. The committee is currently working to update the patient education handouts that were available in the PENS Education binder. These will be updated and put on the members section of the PENS website. The committee is also publishing annotated bibliographies of articles relevant to pediatric endocrinology and diabetes in the PENS Reporter. We are all very busy and this is a way to update members on current articles related to our practices. Our mission is to provide resources for our members to help in their professional education as well as to help them educate their patients and families. The PENS Conference will be here before you know it. There will be a call for committee members in the spring. Please consider joining the education committee! Cathy Flynn, RN, MSN, CPNP, CDE – Chair

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Board Liaison: Nicole Kirouac, RN, BN

Summary of Projects: It has once again been such a great honor to be serving as the chairperson for the Conference Planning Committee for 2015. Our goals on the Conference Planning Committee are ultimately to provide you all with an educationally stimulating, cultivating, and innovative program for our 2015 National Conference in beautiful historic Savannah, Georgia! I am certain you will all be pleased with the final product that our awesome committee members have been hard at work putting together. It is so hard to believe that in six more months we will be once again be gathering together as an organization not only collaborating ideas, but also learning from our wonderful speakers that have so graciously offered to present their educational and/or innovative submissions. Our upcoming 2015 Conference program will be a combination of old ideas that have been enjoyed by all of you in past conferences as well as new ideas brought forth from the last evaluations and our talented committee members. I cannot say enough about the merit of the evaluations from the past conferences and how beneficial they are in helping the committee going forward. Additionally, it was such a great help on site in Louisville to have heard from our members individually, which enabled us to get right down to business making suggestions and changes to our upcoming program. The feedback that we receive is truly the driving force of our committee and much appreciated as we strive to bring forth this great organization’s next conference. continued on page 5 4

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“Committee Reports” continued from page 4 We are so excited and pleased that we have had such an incredible response to the calls for presentations! The topics that we have for this year’s program are unbelievably interesting and refreshing. Thank you one and all for submitting or suggesting other speakers to submit. Our keynote speaker(s) are sure to be big hits as well, so please stay tuned for additional exciting info! I want to extend a huge thank you to our 2015 Conference Planning Committee members who are so incredibly dedicated and focused in bringing our members the terrific program.

Nominating

Committee

Committee Members: Isabel Couto, MSN, RN, CPN, NE-BC; Patty Graves, RN, CPNP, CDE; Colleen Weber, BSN, RN; Maryann Johnson, BSN, RN, M.Ed. Purpose of the Committee: The primary focus of the Nominating Committee has been to develop and present a slate of candidates from which the PENS membership will select its Board members and Nominating Committee members.

Hope to see y’all in May!

Summary of Projects:

Tamara Nenadovich, RN – Chair

The Nominations Committee has had two calls since our PENS May 2014 Conference. Since the approval of our Bylaw changes the Immediate Past President from our PENS Board of Directors now has become our nominations chair. I have taken over this position from Fran Waite who did a very compelling job this past year in rounding out a ballot for our previous elections. Our current committee has been working diligently in identifying and contacting those individuals within our organization that possess those leadership qualities that would continue the mission statement of our organization and take us into the future. Our committee will not be done with tasks once we have identified and arranged our ballot for the upcoming elections. We will continue to work on recruitment and retention of our membership which is a much needed task.

Research

Committee Committee Members: Isabel Couto, MSN, RN, CPN, NE-BC; Jan Foote, DNP, ARNP, CPNP; Cynthia Gordner, BS, RN; Shari Liesch, APNP, CDE Grant Director: Sharron Close, PhD, MS, CPNP-PC Board Liaison: Terri Lipman, PhD, CRNP, FAAN Purpose of the Committee: To promote, present, mentor and support pediatric endocrine research activity in the PENS organization Summary of Projects: A new tab now exists on the PENS’ homepage for people searching for grant information. This will make it easier for everyone to find the wonderful opportunities that PENS has to offer. Research is a way in which we inform and improve our practice, so we encourage anyone interested to please consider applying for one of the PENS grants. Also, in your workplace and universities, if you are aware of the other nurses who are conducting pediatric endocrine research, please tell them about PENS and invite them to join. As members, they will be eligible to apply for funding of projects. As we advance science in the area of pediatric endocrinology, we can also advance our membership with new friends, colleagues and collaborators!

Your nominations committee has done an excellent job in selecting candidates for the next PENS election. Please stay tuned for more information about the upcoming election. This is your organization, share your thoughts, share your talents, keep the momentum going to make our organization be the best it can be, together we are stronger! Catherine P. Metzinger AAS, RN, CDE – Chair Immediate Past President PENS 2014-2015

Carol Howe, RN, MSN – Chair

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TYPE 1 DIABETES THROUGH THE LIFE SPAN: A POSITION STATEMENT OF THE AMERICAN DIABETES ASSOCIATION

his article describes and defines type 1 diabetes in both adults and children. It is a position statement that summarizes available data that is unique to the comprehensive care of individuals with type 1 diabetes. The American Diabetes Association’s “goal is to enhance our ability to recognize and manage type 1 diabetes, to prevent its associated complications, and to eventually cure and prevent this disease.” The American Diabetes Association gives multiple recommendations for various challenging situations. It also provides ideas and principles to consider and to guide interdisciplinary care. For example, the members state that “All patients with type 1 diabetes need ageappropriate care, with an understanding of their specific needs and limitations. … Regardless of age, the patient’s needs are the same: an individualized care plan with ongoing education and support, ongoing assessment for acute and chronic complications, and access to medical providers with type 1 diabetes expertise.” The authors include two different charts that can be extremely helpful in providing age appropriate care. One chart outlines major developmental issues and their effect(s) on diabetes in children and adolescents. Another chart outlines selfmanagement goals based on life stages.

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Other features of this article include: a discussion of what to include in a psychosocial assessment and recommendations on how to approach any issues found; treatment targets; glycemic control goals in pediatrics; unique considerations for the pediatric patient; ongoing therapy trials to prevent the development of type 1 diabetes, to preserve remaining beta-cells, and to replace therapy trials to prevent the development of type 1 diabetes, to preserve remaining beta-cells, and to replace beta-cells; adjunctive therapies; and agespecific precautions and safe treatment of hypoglycemia. Management of patients with type 1 diabetes as inpatients and in preparation for outpatient procedures are also addressed. Judith Lowitz, RN, BSN, CPN Chiang, J.L., Kirkman, M.S., Laffel, L.M.B., & Peters, A.L. (2014). Type 1 diabetes through the life span: a position statement of the american diabetes association. Diabetes Care, 37, 20342054. doi:10.2337/dc 14-1140

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CURRENT CONTROVERSIES IN TURNER SYNDROME: GENETIC TESTING, ASSISTED REPRODUCTION, AND CARDIOVASCULAR RISKS

his publication is a summary of current controversies in the testing, treatment, and monitoring of girls and women with Turner Syndrome. Three specific physiologic concerns discussed are genetic testing for Y chromosome material, reproductive potential, and increased risk of cardiovascular death. An algorithm is provided that identifies specific genetic testing methods for identifying Y chromosome material, depending on karyotype. For example, in girls with karyotype 45,X, where there is not another cell line, the algorithm suggests fluorescent in situ hybridization (FISH) testing using a probe to the DYZ3 locus, because this region is linked to gonadoblastoma risk. Along with statistics for reproductive potentials, assisted reproduction methods are described. The most commonly used method has been in vitro fertilization, with approximately 50 percent resulting in live births. Cryopreservation of oocytes is discussed as a consideration for young girls undergoing gonadectomy, though this has not yet resulted in successful pregnancy in Turner Syndrome. There is emphasis on the fact that women with Turner Syndrome have significantly increased mortality during and after pregnancy, related to cardiovascular abnormalities.

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Various statistics regarding cardiovascular abnormalities, particularly aortic valve abnormalities, aortic dilatation and dissection, and hypertension are discussed. Current testing methods, timing, and frequency are described. For example, cardiac MRI vs. echocardiography, and aortic measurements indexed for the girl’s/woman’s smaller size are discussed. A key takeaway is that in the absence of strong evidencebased guidelines, these conditions associated with Turner Syndrome are managed under the principal of “first do no harm.” It is also noted that evaluation and management of these conditions may be inconsistent from patient to patient, depending on the provider. The publication emphasizes the importance of patient and family education about these conditions associated with Turner Syndrome to provide context for recommendations. Joni Fusick, RN, BSN Ackermann, A, Bamba, V. Current Controversies in Turner Syndrome: Genetic Testing, Assisted Reproduction, and Cardiovascular Risks. Journal of Clinical and Translational

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Have you joined the PENS E-Community? Why wait? Start now! Communication between PENS members just got easier!  We are excited to offer our members information about our E-Community forums which are located in the Members 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.

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.

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@goAMP.com.

 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.

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 our 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.

 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.

How does it work?

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.

How do I sign up (subscribe)?

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.”

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

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

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erfect weather. My favorite part of camp is watching the kids meet other and old, and share their stories. This year, three teenage girls with TS met share the experience of sleeping outside in a tent for the first time. I love gs of my childhood in scouting with a new generation, but nothing can ou for the energy of fifty-plus people singing the hippopotamus song. (I a new tradition.) one 5-year-old ask as she was leaving, “Mom? When do we come back to May, sweetie. You can count on it.

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Camp Highlight

May 20, 2014

has a few special traditions. We Turner get SUCCEED Camp, now in its 6th year, SUCCEED Camp is for children with Congenital Adrenal Hyperplasia, Syndrome, and Disorders awesome shirts, have a dance party,4-12. make piñatas, and we try towith keep anyone from of Sexual Development and their siblings ages We partner the Pediatric Interest Group at the breaking a foot while playing volleyball. May 3-4 was our best camp ever, with 25 kids, 7 OU College of Medicine teenage which also helps with the parental fear that is often seen when sending a child helpers, and 29 adult volunteers. There were even 2 mascots (kids under 3). with a chronic endocrineSUCCEED condition awayoriented, to camp – they worry about medication Camp is family and includes affected children and their siblings age 5 compliance, about what and up. will happen in case of emergency. At SUCCEED Camp, we help the parents feel safe by having a pediatric We went hiking, shot archery, made relaxation bottles, and the kids slept in tents andxtwo PENS on site! haeffer, RN, BSNendocrinologist • 405-271-8001 43043 • traci-schaeffer@ouhsc.edu thanks to the perfect weather. My favorite part of camp is watching the kids meet other people,City young OK and old, and share their stories. This year, three teenage girls with TS met 1200 N.We Phillips 4500,shot Oklahoma wentSte hiking, archery, made 73104 relaxation bottles, and the kids slept in tents thanks to the perfect and decided to share the experience of sleeping outside in a tent for the first time. I love

weather. My favorite partsharing of camp isofwatching the kidswith meet people, young and old, and share their the songs my childhood in scouting a newother generation, but nothing can quite preparegirls you forwith the energy fifty-plus singing the (I stories. This year, three teenage TS of met andpeople decided to hippopotamus share the song. experience of sleeping outside think we have a new tradition.) in a tent for the first time. I love sharing the songs of my childhood in scouting with a new generation, but I heard one 5-year-old ask as she was leaving, “Mom? When do we come back to nothing can quite prepare youNext forMay, thesweetie. energy of fifty-plus people singing the hippopotamus song. (I think camp?” You can count on it. we have a new tradition.) I heard one 5-year-old ask as she was leaving, “Mom? When do we come back to camp?” Next May, sweetie. You can count on it. Traci Schaeffer, RN, BSN 405-271-8001 x43043 traci-schaeffer@ouhsc.edu

Traci Schaeffer, RN, BSN • 405-271-8001 x 43043 • traci-schaeffer@ouhsc.edu 1200 N. Phillips Ste 4500, Oklahoma City OK 73104

From the Editor: What do you offer for your patients? Do you have a unique camp experience for Diabetes or Endocrine patients that you would like to share with your fellow PENS members? Please send me a paragraph or two like Traci has shared and let others see what is new in your area! –Lisa M. Davis MSN, CNP, Editor

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WE’RE PUTTING YOUR INSIGHTS TO GOOD USE. Providing an easy-to-reach, one-stop source for guidance and caring support

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