So Long, Farewell, auf Wiedersehen: A Note From the Newsletter Editor

Patricia A. Kelly, DNP, RN, CNS, AGN-BC, AOCN®
Dallas, TX
patriciakelly@texashealth.org; pakelly1027@sbcglobal.net
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Patricia A. Kelly

This beloved refrain from the Sound of Music song “So Long, Farewell” is a fitting title for this last issue of the Oncology Nursing Society’s (ONS) Cancer Genetics (CAG) SIG online newsletter. In this editor's message, I will reflect on where we have been and where we are going with SIG communications.

Where We Have Been

ONS has shared cancer genetics information through CAG SIG newsletters since 1996 and has published 35 online newsletters since February 2003. Prior to the online newsletter, ONS published six volumes of print newsletters with approximately three newsletter issues per volume. These newsletters represent some 54 submissions on behalf of CAG SIG leadership teams over 20 years. This current and last newsletter is ONS CAG newsletter volume 20, issue 36.

The newsletters have been a vehicle to share ONS leadership information, cancer genetics updates, educational resources, and challenging case studies. Kudos to all members and guest authors who have contributed to the SIG newsletter over these years. A listing of all the online newsletters can be found at the current SIG website. (The SIG website will transition to an “ONS Communities” webpage in the near future.)

The CAG SIG has a history of excellence in communications and has received ONS “Best Article” newsletter awards for the articles “Unusual Case Presentation: Pseudopapillary Pancreatic Tumor in a 13-Year-Old With a BRCA 2 Mutation” (2012), “Mamma at the Bar: Understanding Genetically-Targeted Therapies” (2011), and “Genes and Codeine: What’s the Connection?” (2007). Most importantly, the newsletter has been a way for cancer genetics nurses to connect with one another. ONS CAG SIG coordinator (2014–2016) Cathy Belt, MSN, RN, OCN®, loved hearing from the nurses who reached out to her with questions and interest in her coordinator column in the CAG SIG newsletter.

Where We Are Going

We cannot be troglodytes (see ONS SIG 2010 newsletter article “Troglodyte or Transformational Leader? Genetic Nursing in 2010” for the definition) and cling to outdated communication modalities. SIG communications need to be reflective of the 21st century with shorter, more concise, and almost instantaneous messaging. Think of tweeting and blogging. One example is our Cancer Genetics SIG Facebook page. If you haven’t been to the page, check out the posts on the Cancer Moonshot. Special thanks to Lisa Aiello, MSN, RN, APN-C, AOCNS®, SIG web administrator, who developed the Facebook page and has maintained it for more than five years.

Going forward, CAG SIG coordinator (2016–2018), Julie Eggert, PhD, GNP-BC, AGN-BC, AOCN®, FAAN, will lead our change from a SIG to a community, which will emphasize real-time communication through community discussion groups. Julie welcomes your thoughts and ideas. Please contact her at jaegger@clemson.edu.

It is with sadness that I say farewell to the familiar SIG newsletter. At the same time, I welcome the challenges, reflections, and energy that will come with restructuring. Perhaps our theme song should be “Climb Every Mountain.” Just think of the view we will have from the top.

Warm regards,

Patricia A. Kelly, DNP, RN, AGN-BC, AOCN®

P.S. Don’t forget to check out Genetics Toolkit and the member updates in this issue. Most importantly, continue to read, write, and share.

Genetics Toolkit

The “Toolkit Resources for Primary Care Providers” is available from the American Society of Human Genetics, and was originally presented at the Genetics in Primary Care workshop in March 2016. Below is an example of disease-specific resources you can find in this toolkit. Other information topics include variant information, public health genomics, genetic testing, educational resources, educational webinars, patient-oriented problem-solving, patient advocacy, disease-specific organizations, and patient tools. Check out this important toolkit.

  • NCBI's MedGen: Flexible search (disease, gene, drug, etc.) to find information about human medical genetics, such as attributes of conditions with a genetic contribution. Well-summarized, with organized links to additional NCBI information resources. Play with it a bit to understand its power.
  • GeneReviews (housed in NCBI Books): Expert-authored, peer-reviewed disease descriptions ("chapters") presented in a standardized format and focused on clinically relevant and medically actionable information on the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions. Great for linking to from your clinical encounter news.
  • PDQ Cancer Information Summaries: Genetics, National Cancer Institute: Evidence review summaries and recommendations including: a Cancer Genetics Overview; Cancer Genetics Risk Assessment and Counseling; Genetics of Breast and Gynecologic Cancers; Genetics of Colorectal Cancer; Genetics of Endocrine and Neuroendocrine Neoplasias; Genetics of Kidney; Genetics of Prostate Cancer; and Genetics of Skin Cancer.
  • Online and EHR-integrated medical reference portals (WebMD, UpToDate, etc.): Genetic information is increasing and accuracy is improving generally. Cross-reference with other resources when in doubt.

Reference

Wilden, B., & Jenkins, J. (2016). Genetics in your clinic: What you can and should do now. Retrieved from https://www.genome.gov/pages/health/healthcareprovidersinfo/vm-toolkit_20160315.pdf

Member Update—Jean Jenkins: Genomics Nurse Leader Opens a New Life Chapter

Patricia A. Kelly, DNP, RN, CNS, AGN-BC, AOCN®
Dallas, TX
patriciakelly@texashealth.org; pakelly1027@sbcglobal.net
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Jean Jenkins

On September 20, after 41 years at the National Institutes for Health (NIH), Jean retired from “work” at the NIH but not from genomics. She hasn't decided what the next phase of life will look like. She may do some consulting or may “practice” retirement. One of her goals is to expand her personal website, DNA and U, where she shares her story of cancer survivorship and how genomics influenced her treatment for lymphoma. There she encourages others to share their genetics and genomics stories, and whether they chose to incorporate DNA information into their health care, as both perspectives are valuable. She wants healthcare providers to learn from these stories and to understand the tremendous progress that has been made in precision medicine. Please share the DNA and U website with your colleagues and friends.

Below is a brief biosketch of her career, including advocacy efforts for advancing genomics nursing education, research, and practice.

The ONS Cancer Genetics SIG salutes Jean and thanks her for her service to the NIH and her commitment to genomics nursing.


For 14 years, Jean Jenkins, PhD, RN, FAAN, was clinical advisor for the Division of Communication, Policy, and Education at the National Human Genome Research Institute (NHGRI). Previously, she worked in the NIH Clinical Center Nursing Department, the National Cancer Institute, and the Genomic Healthcare Branch of NHGRI.

Jean received her BSN from the University of Maryland, MSN from the Catholic University of America, and PhD from George Mason University in 1999, where she completed her doctoral dissertation, “Innovation of Diffusion Research on Genetics Education for Nurses,” which has been published in the Journal of Nursing Scholarship. During a clinical internship for her doctoral studies, she recognized the importance of advances in genetics research for all healthcare providers.

Jean has been motivated and committed to teaching others about genetic concepts and preparing others to integrate genetic concepts into clinical practice.  In 2005, she received the Michael J. Scotti Jr. Award for coordinating the development and consensus of the National Coalition for Health Professional Education in Genetics competencies as the content and instruction co-chair.  Building on these efforts, Jeans co-coordinated the development of the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics, which led an interdisciplinary education resource repository and a web-based case-scenarios resource.  Jean was a coinvestigator for the National Council of State Boards of Nursing-funded grant related to the integration of genomic knowledge into nursing practice.

She has written more than 130 publications, including three series on genomics for the Journal of Nursing Scholarship (2007, 2011, 2013).  In addition, Jean has co-authored four nursing books, including Nursing Care in the Genomic Era: A Case-Based Approach (Jenkins, J. & Lea, D.H. [2005]. Boston, MA: Jones and Bartlett) and Genetics and Genomics in Oncology Nursing Practice (Calzone, K.A., Masny, A., & Jenkins, J. [2010]. Pittsburgh, PA: Oncology Nursing Society).

Member Update—Katie Edwards: On Genetics Opportunities and a Graduate Partnership Program

Katie Edwards, BSN, BS, RN
Bethesda, MD
kaandre@g.clemson.edu
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Katie Edwards

I am about to begin my fourth year as a doctoral student in the Healthcare Genetics program at Clemson University. My experience as a nurse on a neurotrauma intensive care unit exposed me to the immense need for additional research on traumatic brain injury (TBI), gave me a passion to expand our abilities to help these patients experiencing TBI, and motivated my decision to return to school for my PhD. My biology and nursing bachelor degrees have given me a desire to use bench research to optimize patient outcomes. I was excited to discover the Healthcare Genetics PhD program at Clemson University. This interdisciplinary program allows me to combine my backgrounds in biology and nursing, and to interact with faculty and students from various healthcare and science fields. Upon entering the program, I was surprised at the large amount of promising research underway to improve patient outcomes in many fields of medicine. Genetics can be used to tailor treatments and improve patient outcomes in cancer care. Before I started my doctoral training, I could not have imagined how genetics can improve the outcomes of the TBI population I was so passionate about caring for as a bedside nurse. Some exciting goals of current genetics research in TBI include improving patient outcomes through the diagnostic and prognostic biomarker tests, tailored therapies, and even specific drug developments for these patients.

During the course of my PhD studies, I have met and interacted with amazing peers and mentors at Clemson University and other schools. My wonderful mentors guided me to two opportunities at NIH/National Institute of Nursing Research (NINR): the Summer Genetics Institute (SGI) and the Graduate Partnership Program (GPP). SGI is a month-long intensive genetics course at the NIH campus in Bethesda, Maryland. Doctoral nursing students and doctorally prepared nurses attend SGI, which is truly a life-changing experience, as it allows students to meet colleagues interested in applying genetics to research and practice, as well as participate in lectures and laboratories led by experts in specialized areas of genetics. The GPP will allow me to complete my dissertation research at the NIH/NINR in collaboration with Clemson University. I was excited and honored to begin working with the Brain Injury Unit at NINR this fall. Although my dissertation topic is to be determined after rotations through several laboratories, I anticipate exploring the genetic factors involved in TBI outcomes. My future professional development goals include performing research and educating students and patients in the growing field of genetics. The Healthcare Genetics PhD program at Clemson University, the SGI, and the GPP at NIH/NINR have provided me with invaluable opportunities to develop my abilities and contribute to the field of genetics.

Exclusive Articles Available Before Print

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Clinical Journal
of Oncology Nursing
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Oncology
Nursing Forum

The Oncology Nursing Forum (ONF) and the Clinical Journal of Oncology Nursing (CJON) have unveiled advanced print exclusive articles to give our readers access to important, cutting-edge content ahead of print. Articles from the journals are available on the main ONF and CJON pages. These articles are open access, meaning they are available to members and non-members alike, until they appear in print at a later date. At that time, the content will become password-protected like other articles that appear in print as online exclusives in the journals. The latest article to receive the advanced print exclusive designation is “On the Road Less Traveled: Journal of an Oncology Palliative Care Researcher” by Marie Bakitas. Check out this informative article today.

Check Out the ONS Connect Blog

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Photo courtesy of ONS Connect

The official blog of ONS is written by oncology nurses for oncology nurses on a variety of topics of interest, including facing day-to-day challenges at work, juggling busy lives at home, and keeping up to date with the magnitude of information available for practicing nurses.

Check out the following new discussions.

As a reader, join in on the conversation and connect with other oncology nurse readers by posting your own stories, tips, ideas, and suggestions in the comments section at the end of each blog post.

Five-Minute In-Service

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Photo courtesy of ONS Connect

The latest Five-Minute In-Service details Why More Women Are Choosing Bilateral Mastectomies. Here's an excerpt: "In just seven years, the rates of women who received prophylactic bilateral mastectomies after a diagnosis of unilateral breast cancer skyrocketed—increasing from 9% in 2003 to 24% in 2010. The current evidence does not justify bilateral mastectomy for women who do not have a BRCA1 or BRCA2 mutation. So what’s causing the increase in unnecessary surgery?"

Ask a Team Member

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Photo courtesy of ONS Connect

The latest Ask a Team Member column answers the question “What Do Oncology Nurses Need to Know About Drug Transfusions for Anemia?” Here's an excerpt: "Approximately 90% of patients with cancer experience anemia because of disease process, treatment side effects, or coexisting conditions. Anemia is defined as a hemoglobin (Hgb) less than 10.0 g/100 ml of blood (10.0 g/dL), but for stable hospitalized adults without cardiac disease, guidelines recommend transfusions for a target Hgb of 7.0–8.0 g/dL, using the smallest effective dose of packed red blood cells needed to alleviate symptoms. These guidelines emphasize clinical assessment in addition to target hemoglobin levels when considering transfusions."

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