Course 3 References

Section 1

Section 2

 Section 4

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Course 3 Section 1 Quiz Feedback

Barriers for chronic illness are varied.

In this case, Mattie faced many barriers.

The first was the unknown.  For many years, she did not have an accurate diagnosis to guide her care.  Even after her diagnosis, she was not able to find qualified, competent care.  There were barriers of distance and access to providers.

She also had barriers related to attitudes related to lack of understanding.

For Mattie, healthcare insurance coverage was not an issue due to her parents’ group commercial insurance policy; however, many times the providers that she needed were out of network making the out of pocket expenses excessive.

Parents of minor children also need to miss work for days and sometimes weeks making it potentially hard to maintain consistent employment.  Access to paid time off work is a huge barrier for patients and families with chronic illness.  Add to this the barrier of travel and lodging expenses related to going from provider to provider; some at great distances from their home.  Without adequate income or insurance, compliance with treatments and medication is difficult. In addition, access to necessary medical equipment and treatments not covered by insurance add financial stress and may not be affordable for many.

Finally, access to regular social interactions are limited by physical limitations and excessive fatigue caused by the chronic illness.

Course 3 Summary

 

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 discussed 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.

 

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Course 3 Section 4 Quiz Feedback

 

1. We heard that advocacy is a large part of us as nurses. As with any patient, we can start with believing our patients.  Understanding the scope of challenges for EDS patients will strengthen your resolve for helping them find resources and connecting to organizations with expertise and experience with the trajectory of this chronic condition.  Having someone recognize Mattie’s symptoms earlier would have possibly prevented many of the complications that she is still dealing with.  You are taking the first step by learning more about EDS.

 

2. Our first point of contact was the genetics department where Mattie received her diagnosis. This was a good place to start; however, provided little ongoing support.  We connected with other organizations and identified some chat rooms that led us to organizations such as Chronic Pain Partners who provide education for EDS and can connect you with support groups.  Other organizations such as National Organization for Rare Disorders can also offer some help how to connect to providers, support organizations and other patients and families.  There is not one formula and we have found that networking, being persistent and asking many questions have eventually led us to the solution or provider that we needed.  We met some other families at an international conference for EDS and realized that those in areas around research centers for EDS have more accessible and appropriate services.  In our case, we typically have to travel to find the services we need.  This is why awareness and advocacy is so very important. With more knowledge, you may be able to identify symptoms that will allow early intervention and improved outcomes for someone with EDS.

Course 3 Section 4

Course 3 Section 3 Quiz Feedback

1. “Patient Navigation (PN) in cancer care refers to individualized assistance offered to patients, families and caregivers to help overcome health system barriers and facilitate timely access to qualified medical and psychosocial care”. (Wilcox & Bruce, 2010) However, the PN role is not limited by a single definition, but rather is broad in concept and can apply to any help or service that assists patients in overcoming barriers to improve outcomes in detection, diagnosis, treatment and survivorship. (Wells et al. 2008)   The main goal of the patient navigator is to assist patients in acquiring an enhanced sense of preparedness. (Pedersen & Hack, 2011)  Patient navigator programs seem to address the barriers of early access and treatment by helping the clients move through the system and identify other resources for care.  PN also can act as a coach to encourage participating and compliance once programs are available.  This may include coordinating doctor’s visits, facilitating contact between patients and physicians, arranging rides to and from the hospital, helping fill out insurance forms or enrolling in programs for financial assistance, clarifying information and even suggesting what to ask the healthcare provider. (Shockney, 2010)  Harold P. Freeman founded the nation’s first patient navigation program in 1990 in Harlem, New York.  Dr. Freeman published principles of navigation learned from his experience in 2011. (Freeman & Rodriquez, 2011)

 

2. Mattie felt like the most important thing to her was being heard and having someone believe her. Aside from this, healthcare providers can implement some of the principles of patient navigation; identifying barriers and helping the patient address those barriers.  Connecting the EDS patient to advocacy groups, support groups and national organizations with knowledge of current resources is a great place to start.  Many times, referrals are not made in the traditional way; but rather, from others who have learned from their own personal experience.  This is why it is so important to connect with other EDS patients and families.

 

3. Pain management with EDS is complex and should be approached in a multidisciplinary way. It is important to identify the type and source off pain in order to find the appropriate solution.  The presentation of someone with chronic pain may look very different than what we typically see in acute care; however, someone with EDS can have both chronic pain and acute pain.  Thoroughly evaluate your patients’ pain using your favorite acronym. PQRST or OLDCARTS are two that may be familiar. (https://forum.nursejanx.com/t/old-carts-socrates-pqrst-nursing-mnemonics-for-pain-symptoms/550).

Course 3 Section 3

Course 3 Section 2 Quiz Feedback

 

When you hear Mattie’s story, I hope you heard how hurtful it was to her that providers doubted the legitimacy of her condition.

There were many times when she was made to feel like it was her fault that she was not getting better because she wasn’t trying hard enough.

Many others made it seem like hEDS was not a big deal; one stating, “everybody in the circus probably has EDS and they are fine”.

As more people are being diagnosed, there seems to be a growing perception in our area that hEDS is now over emphasized.

Remember, that mild hypermobility and hEDS are not the same.  Regardless, we should never dismiss any patient in this way.  

I hope you were able to consider your own biases toward people with chronic illness and chronic pain.  I also hope hearing Mattie’s story will help you understand how our attitudes as healthcare providers can positively or negatively affect our patients.

Course 3 Section 2

 

Course 3 Section 1

 

 

 

 

Pre-test 3

Before you begin course 3 please complete this brief pre-test below.
Please select appropriate answers below and click SUBMIT:

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

1. How confident are you in your ability to help navigate the needs of patients with EDS?
2. How confident are you in your understanding of attitudes that affect patient experience for EDS patients?
3. How confident are you in your ability to identify barriers for patients with EDS?
4. How confident are you in being able to identify resources for a patient with EDS?
5. Considering the topics that will be covered here, what do you want to learn in this course?

Course 2 Quiz Feedback Section 2

COMING SOON!
Mandy

 

 

 

 

 

Mandy is a 23-year- old with hypermobile EDS and POTS who is hospitalized. Which of the following is an appropriate way to promote Mandy’s safety during her hospitalization?

B is correct. Following the principle of Be Gentle, Ask and Believe, we should ask Mandy how we can help her, believing and following what she tells us, and being gentle when handling her. As she’s at risk for subluxation/ dislocation, bruising and skin tears, we should ask her about the best way to help her and where and how to touch her during that process. 

A is not correct, as moving slowly will be associated with less risk of falling than moving quickly. 

C is not correct as bedrest would not be indicated without clinical findings indicating its necessity. These types of clinical findings are not identified in this scenario.

Course 2 Quiz Feedback Section 2

Mandy

 

 

 

 

 

  1. Mandy is a 23-year- old with hypermobile EDS and POTS who is hospitalized.  Which of the following is an appropriate way to promote Mandy’s safety during her hospitalization?
    a. Help her move as quickly as possible during transfers to prevent falling.
    b. Be gentle and ask how to best help her when she is moving.
    c. Keep her on bedrest to prevent POTS-associated falls.

b. is correct. By Following the principle of Be Gentle, Ask and Believe, we should ask Mandy how we can help her, believing and following what she tells us, and being gentle when handling her. As she’s at risk for subluxation/ dislocation, bruising and skin tears, we should ask her about the best way to help her and where and how to touch her during that process. 

a. is not correct, as moving slowly will be associated with less risk of falling than moving quickly. 

c. is not correct as bedrest wwould not be indicated without clinical findings indicating its necessity. These types of clinical findings are not identified in this scenario.