Advocacy & Navigation in the Care of Patients with EDS

Course 3 in the EDS Awareness Nursing Continuing Education Program

 

Course Description

 

Ehlers-Danlos Syndromes (EDS) are genetic conditions that can have a long-term impact on most body systems and all areas of a person’s life. Historically, EDS has been much neglected and, due to the lack of the identified gene defect, hEDS  (hypermobile) takes years to be recognized and treated. Even after diagnosis, most patients find providers unprepared to manage their complex symptoms. The burden of advocating for these patients and learning to navigate a complex health system with little knowledge of this disorder falls on patients, families and caregivers. Many times, this requires expensive travel, time away from work and changes in short and long-term plans. All variables that add significant stress to individuals and families; resulting in personal, emotional and financial loss. Personal experience demonstrates that it takes an average of a year or more to address one joint issue or new problem due to lack of expertise or dismissive attitudes. Imagine having this experience repeatedly with one joint for body system after another. This is pain, loss and heartache on a level that most of us cannot relate.
The course presented is through the voice of Mattie, a 22-year-old female diagnosed with hEDS. Through her voice, she provides a unique perspective on patient experience. She discusses what she and her family learned from the trajectory of symptom onset through diagnosis and beyond. This is her story, told to help others understand the feelings of frustration and poor outcomes that result from a lack of knowledge. Survey results from 2019 confirmed this lack of knowledge related to EDS as reported from healthcare providers, as well as a consensus from EDS patients that the healthcare system does not listen or understand their disorder. We desperately need to care about how our attitudes as providers affect these patients and their quality of life. Learning more about EDS is a great place to start. Thank you for taking time to hear Mattie’s story.

 

What We Will Cover

1. The patient experience of diagnosis and treatment
2. Possible reasons this is so hard to recognize
3. Suggestions for Advocacy and Navigation
4. Consequences of delayed treatment; what the patient wants you to know.
Learning Outcomes
1. Recognize attitudes related to EDS patients and how it affects the patient and families.
2. Identify two (2) factors that contribute to frustration and poor outcomes for EDS patients and families.
3. Recognize two (2) evidence-based principles of patient care that will improve outcomes for EDS patients and
families.
4. Recognize two (2) ways to advocate for the patient with EDS and their families.
Contact Hours and Requirements
This course should take about an hour. Upon completion, you will get a certificate of completion for one (1) contact hour of continuing nursing education credit.
To earn contact hours you will:
1. Complete all course sections
2. Answer each question
3. Review each quiz discussion
4. Complete the course evaluation
This continuing nursing education activity is provided by EDS Awareness/ Chronic Pain Partners. It was approved by the Wisconsin Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation.
Faculty
Melinda G. Baker, DNP, APRN, ACCNS-AG
Mbaker0096@gmail.com
Melinda.baker@kctcs.edu
Disclosures
There are no relevant conflicts of interest to disclose.
Course Expiration
Contact hours awarded for this course until November 20, 2021

– YOU MUST BE REGISTERED TO ATTEND THIS COURSE FOR THE FIRST TIME

If you have not registered click below.

REGISTER

– Before you begin the course please click below to complete a brief Pre-Test on the next page

PRE-TEST

– Then select MARK COMPLETE: to proceed to the first section.

Promoting Safe, Quality Healthcare for the Patient with EDS

 Course 2 in the EDS Awareness Nursing Continuing Education Program

 

Course Description

Ehlers-Danlos Syndromes (EDS) are genetic conditions that can have a long-term impact on most body systems and all areas of a person’s life. The experience of living with EDS is under-appreciated, and an understanding of safe, quality nursing care for patients with EDS is still in the early stages of development. By listening to patients living with EDS, their families and caregivers, nurses and other healthcare professionals can gain valuable insights into understanding the needs of patients with EDS and ways they can provide safe, appropriate, compassionate, patient-centered care for these individuals. 

This course provides a unique perspective from an hEDS patients ’s personal experience with healthcare  as this content is presented through the voice of the patient. In it, we present the findings of a 2019 EDS Awareness qualitative survey of what patients with EDS have told us nurses need to know to provide safe, quality healthcare for them. Their recommendations covered three areas of needs: safety concerns, pain and symptoms and the patient experience  as well as both general and specific recommendations for nursing care. Each topic is presented through the voice of the patient in an attempt to faithfully represent the many voices we heard in the survey findings, presenting a unique, valuable and inspiring learning opportunity.  

 

What We Will Cover

  1. What Patients Want Nurses to Know About Ehlers-Danlos Syndromes
  2. Patient Safety Concerns in EDS
  3. Pain & Symptoms in EDS
  4. The Patient Experience of EDS
  5. Nursing Care of the Patient with EDS

 

Learning Outcomes

  1. Recognize 2 patient safety concerns in an EDS clinical patient scenario.
  2. Recognize 2 pain & symptom priorities in an EDS clinical patient scenario.
  3. Recognize 2 patient experience priorities in an EDS clinical patient scenario.
  4. Identify 2 patient care priorities in an EDS clinical patient scenario.

 

Contact Hours and Requirements

This course should take about an hour. Upon completion, you will get a certificate of completion for 1  contact hour of continuing nursing education credit. To earn contact hours you will:

  1. Complete all course sections
  2. Answer each question
  3. Review each quiz discussion
  4. Complete the course evaluation

 

This continuing nursing education activity is being provided by EDS Awareness/ Chronic Pain Partners. It was  was approved by the Wisconsin Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation.

 

Faculty 

Beth Fahlberg PhD, RN

beth.fahlberg@gmail.com

 

Disclosures

There are no relevant conflicts of interest to disclose.

 

Course Expiration

Contact hours will be awarded for this course until November 20, 2021

– YOU MUST BE REGISTERED TO ATTEND THIS COURSE FOR THE FIRST TIME

If you have not registered click below.

REGISTER

– Before you begin the course please click below to complete a brief Pre-Test on the next page

PRE-TEST

 

– Then select MARK COMPLETE: to proceed to the first section.

Overview of Ehlers-Danlos Syndrome (EDS)

EDS Awareness Nursing Continuing Education Program

 

Course Description

Ehlers-Danlos Syndromes (EDS) are genetic, connective tissue disorders that can have a significant impact on affected patients. While commonly classified as a rare disease, EDS is likely more common than realized, as it is underdiagnosed. 

 

Because connective tissue is present throughout the body, EDS can affect many different systems. As a genetic disorder, it is chronic, lasting a lifetime, and often affects multiple members of a family. Patients with EDS report significant difficulty getting diagnosed, and getting safe, appropriate care, as nurses and other healthcare clinicians often lack any understanding of or experience with EDS. 

 

Problems experienced by patients with EDS include poorly controlled pain, high risk for joint and skin injuries during routine activities and care, autonomic dysfunction with orthostatic intolerance, lightheadedness and fainting and unexpected reactions to medications, allergens and chemicals as a result of mast cell sensitivity. 

 

Nurses need to know about EDS to provide safe, quality care and to help identify patients who may have it yet who have not been been properly diagnosed. This course provides an overview of what  nurses and other healthcare clinicians need to know to provide safe, quality care for patients with EDS. 

 

What We Will Cover

  1. What is EDS?
  2. Physical changes in EDS: How these impact the patient 
  3. Overview of Nursing Care for the Patient with EDS

 

Learning Outcomes

  1. Recognize 2 characteristics of EDS in multiple choice questions.
  2. Identify 2 physical characteristics of EDS in a clinical patient scenario.
  3. Recognize 2 patient care priorities in an EDS clinical patient scenario.

 

Contact Hours and Requirements

This course should take about an hour. Upon completion, you will get a certificate of completion for 1  contact hour of ANCC continuing nursing education credit. To earn contact hours you will:

  1. Complete all course sections
  2. Answer each question
  3. Review each quiz discussion
  4. Complete the course evaluation

 

This continuing nursing education activity is being provided by EDS Awareness/ Chronic Pain Partners. It was  approved by the Wisconsin Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation

 

Faculty 

Kath Hague RGN, NP

hague443@gmail.com

 

Nurse Planner: 

Beth Fahlberg PhD, RN

beth.fahlberg@gmail.com

 

Disclosures

There are no relevant conflicts of interest to disclose.

 

Course Expiration

Contact hours will be awarded for this course until December 10, 2021

 

 

– YOU MUST BE REGISTERED TO ATTEND THIS COURSE FOR THE FIRST TIME

If you have not registered click below.

 

REGISTER

 

– Before you begin the course please click below to complete a brief Pre-Test on the next page

 

PRE-TEST

 

– Then select MARK COMPLETE: to proceed to the first section.