NHF funds a broad range of research programs that seek to increase our understanding of the science behind bleeding disorders, how they affect people's lives, and pathways to better treatments and cures.

Tracey Gaslin

Health Services Guide for Bleeding Disorder Camps

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Tracey Gaslin

A professor and dual certified nurse practitioner in pediatrics and adults.  She completed her PhD in Educational and Organizational Leadership and taught for 10 years specializing in camp nursing, service leadership, physiology, and hematology. Dr. Gaslin periodically works as a camp consultant and legal consultant and publishes the majority of her work in the areas of bleeding disorders, pediatric development, camp nursing, behavioral health, and leadership.

Dr. Gaslin served as the Medical Director at a special needs camp for six years where she directed care for children with chronic disease, disability and life-threatening illness.  She currently serves as a nurse practitioner in a Hemophilia Treatment Center.  She also serves as the Executive Director for the Association of Camp Nursing where she travels to different areas of the US and Canada educating healthcare providers about camp health services and the many benefits for children and adults. She recently (2020) co-authored a textbook:  Camp Nursing; The Basics and Beyond.  Dr Gaslin is passionate about every child having a camp experience and learning that they can achieve great things in life.

Retrospective Chart Review of Joint Outcomes and Hospital Utilization for Persons with Hemophilia A (with and without inhibitors) Who Were Switched to Emicizumab for Treatment Prophylaxis

Retrospective Chart Review of Joint Outcomes and Hospital Utilization for Persons with Hemophilia A (with and without inhibitors) Who Were Switched to Emicizumab for Treatment Prophylaxis

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Amanda Greene

This research project will illustrate the improvements to joint range of motion and hospital utilization (which includes emergency room visits, hospital admissions, and central line infections) in persons with hemophilia A (with and without inhibitors) who switched to emicizumab for bleeding prevention.

EMS Education

EMS Provider Education Regarding Bleeding Disorders and the Treatment Required in an Emergency

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Lydia Johnson

People with bleeding disorders are often connected to and with various community members such as local and national foundations/associations, their home health company, nurses , pharmaceutical representatives, etc. While people are often encouraged to wear medic alert ID, they do not know anyone in the EMS system who may be caring for them in case of an emergency. Through this project, EMS providers will receive education regarding bleeding disorders and the treatment required in an emergency. This project will seek to connect the HTC's with the EMS systems locally and regionally to coordinate the education with the EMS professionals to provide care.

Quality of Life and Outcome Improvement in Adolescents with Bleeding Disorders Receiving Medical Management for Heavy Menstrual Bleeding

Quality of Life and Outcome Improvement in Adolescents with Bleeding Disorders Receiving Medical Management for Heavy Menstrual Bleeding

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Kelly Tickle
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A Feasibility and Usability Study of a Nursing-Orchestrated, Customized Immersive 3 Dimensional Virtual Reality Environment in Children with Hemophilia Undergoing Routine Intravenous Procedures

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Charmaine Biega

The purpose of this project is to request support for the development of a Virtual Reality Environment (VRE) study program for pediatric patients diagnosed with hemophilia. The VRE program proposed was developed and created for children and includes interactive imagery, character avatars and colorful visual environments. This VRE program will be deployed by the child in a clinical setting and is proposed to help decrease, anxiety and needle phobia during intravenous factor infusions. Outcome measures will include an anxiety scale before and after each infusion, collection of biophysiologic data, pain score and visual analogue evaluation. The expected result of this nursing project is to monitor the use of a VRE in the pediatric population with a reduction of fear, anxiety and pain experienced with intravenous factor infusions.

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The Use of High Resolution Power Doppler Musculoskeletal Ultrasound (MSKUS) in Bleeding Disorders

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Mary Lesh, Darcy Phelan

The project's ultimate goal is to expand nursing knowledge of hemarthrosis/soft-tissue bleeding detection by presenting our HTC's experience with how MSKUS improves accurate diagnosis and guides treatment of bleeding and other pain etiologies. By completing the retrospective data review, we hope that the experience of a large center HTC spanning both adults and pediatrics will be made available. We believe that the current restraints of MSKUS implementation include cost of equipment, operator certification, and quality of interpretation to guide interventions. Therefore, partnering with radiology experts may be helpful for other HTCs around the country when using this modality in the future. Our center's experience will show that collaboration with radiologists for real-time imaging is successful with nursing evaluation and coordination.

Bleeding Disorders Pediatric Pain Initiative

Bleeding Disorders Pediatric Pain Initiative

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Michelle Witkop

Pediatric pain, especially in the hemophilia population, is under-recognized and under-treated. Barriers to adequate treatment include lack of knowledge, variability of practice, and outmoded beliefs. All of these factors lead to a culture of slow to no change in practice patterns. Health care providers need current, state-ofthe- art education and tools to assist them in developing the skills required to assess and manage pain in children. Children are often given minimal or no analgesia for procedures that would be treated aggressively in adults. Although more is now known about pain management in children, this knowledge has not been widely or effectively translated into routine pediatric clinical practice, including the practice of most HTCs. In the bleeding disorders community, especially for those with hemophilia, children begin to experience frequent pokes secondary to frequent factor infusions and blood draws at an early age. Depending on the severity of their disorder, they may experience a poke daily or more frequently. This gives rise to anxiety for the child as well as their parents and other family members. Anticipatory anxiety is not uncommon in this setting. The child and their family often feel as though they have no control over the situation. A distraction box is filled with tools for providers to implement during any procedure involving children. The simple act of distraction (in whatever form) can significantly decrease pain and anxiety for both the child as well as their parent. This box offers multiple methods of distraction and informational videos on techniques. The focus of the Poke Plan is to give control over a painful or anxiety provoking situation back to the parent/child. The simple wallet card quickly educates any provider on how the child best handles the discomfort and anxiety associated with a poke/needlestick. Filling out the card educates the parents on distraction techniques that may be helpful for their child in painful and anxiety provoking situations. To date there have not been any studies done in this population. However centers in Michigan using similar Poke Plans in the general pediatric population include but not necessarily limited too are: Sparrow Hospital in Lansing Michigan, Munson Medical Center in Traverse City, Michigan as well as the University of Michigan Children and Women’s Hospital in Ann Arbor, Michigan.

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Telehealth Videoconferencing for Children with Hemophilia and Their Families: A Clinical Project

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Kimberly Jacobson

As technology advances and provides electronic tools for enhancing communication by phone and computer, health care providers are finding ways to adapt these tools into patient care. Telehealth is the use of electronic information and telecommunications technologies to support long-distance clinical health care. For patients with hemophilia who experience a bleed in the home setting, telehealth has the potential to help the patient, family, and health care provider assess what is going on and develop the best plan of care, all while the patient stays in the home setting. In this clinical project, we will use the telehealth resources available at our institution to partner with patients and families with severe hemophilia with a high risk of bleeding episode who also have a home computer with a camera and internet access. We want to find out more about how many patients have these home resources, how to use video-conferencing when managing a bleed and what patients, families, and health care staff think about using video conferencing. This will help us plan future research using telehealth video-conferencing for a larger group of hemophilia patients.

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A Web-Based, Real-Time Menstrual Tracking Tool

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Carolyn Solomon

Menstrual cycles for females with bleeding disorders can present special challenges not experienced by other girls and women. Having your period can be physically, social and emotionally exhausting. A new web-based application is now available and can be downloaded to your personal mobile device or desktop computer. With this application you can track how long your period lasts, how much you are bleeding, any interventions utilized and how it is affecting your daily life. This is a new web-based application you can download that is free and available to all girls and women with bleeding disorders through their federally funded hemophilia treatment center (HTC).

A New Approach for a New Generation

A New Approach for a New Generation

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Linda Grooms
The primary purpose of our project will be to provide education that is specific to adolescent females diagnosed with a bleeding disorder. Most of the information available in the bleeding community is gender specific to males, age specific to adults and focused on von Wilebrand Disease and not platelet dysfunctions. In order for these young girls to form a concrete knowledge base that they can build upon through their adult life, they need additional educational resources for their diagnosis and prescribed therapy as well as support.
Use of Emergency Medical Identification in the Pediatric Hemophilia Population: A National Study

Use of Emergency Medical Identification in the Pediatric Hemophilia Population: A National Study

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Jocelyn Bessette Gorlin
Nurses and health care providers recommend Emergency Medical Identification (EMI) such as Medic Alert for children of all ages with hemophilia and other bleeding disorders, but most are unsure of what type should be used and where they should be located. This is because there are no guidelines on how EMI should be worn. This project will develop guidelines for the use of Emergency Medical Identification (EMI) and develop educational information for families of children with hemophilia. Guidelines will show recommended ages to wear EMI, its use with infants, and where it should be worn or if it should be carried. In addition, this project will review barriers for not wearing EMI based on our research, including perceived lack of need, sizing concerns for infants, and the fear of being different as expressed by adolescents.
Development of an Institution-Wide, Customizable, Computer-Based, Training Module

Development of an Institution-Wide, Customizable, Computer-Based, Training Module

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Robin Chapman
The purpose of this project is to request support for the development of a computer-based training (CBT) module designed to teach the care and treatment of patients with bleeding disorders to nursing staff in a large, multi-campus pediatric healthcare institution. The module will be designed to exist within an intranet environment accessed by all members of the healthcare institution. Core modules will include a description of each common bleeding disorder, a basic review of processes surrounding the multidisciplinary care of bleeding disorder patients, the involvement of other hospital departments in managing a patient with a bleeding treatment plan (e.g., blood bank, coagulation lab, hemophilia treatment center staff) and medications/factor products routinely used to treat them. The result, a custom-made bleeding disorder CBT, would be available at any time to any staff member on any of the institution's campuses being assigned to care for bleeding disorder patients, thus facilitating nursing education and patient care.