A Rare and Life-Threatening Disease with Common Symptoms: Highlighting Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
(BPT) - Determination. Strength. Resilience. These are just a few qualities that may characterize people around the world living with pulmonary hypertension (PH), a sometimes debilitating disease of the lungs. But a particularly rare form of the disease, called chronic thromboembolic pulmonary hypertension (CTEPH), is often misinterpreted by patients and doctors alike.,
November marks PH Awareness Month, designed to shine a spotlight on the disease — and generate support for patients. On November 21, patient advocacy groups, healthcare professionals and caregivers focus specifically on CTEPH and the unique needs of this patient population.
Recognizing the signs and symptoms
PH diagnosis is frequently delayed by several months or years. This is because the most common symptoms, including breathlessness, fatigue and dizziness, are also associated with many other conditions. It is important to note that CTEPH, a subset of PH, is treatable and potentially curable through surgery when properly identified.,
CTEPH also has a connection to a much more common condition, called pulmonary embolism (PE), a blood clot in your lungs. Many people don’t realize that as many as 1 out of every 25 of previously treated patients with PE that does not resolve after three months of using blood thinners could go on to develop CTEPH*.,,
Spreading the word for healthcare professionals
In addition to raising awareness among potential patients, specialists who treat CTEPH, including Dr. Rajeev Saggar, executive director of advanced lung disease care at Banner — University Medical Center Phoenix and the clinical associate professor of medicine at University of Arizona College of Medicine — Phoenix, hope to increase knowledge of the disease among other clinicians.
“The goal of PH treatment is to lengthen survival time, reduce symptoms and improve quality of life for patients. Early, accurate diagnosis is increasingly important, particularly because medical care is steadily improving,” said Dr. Saggar. “It is vital that clinicians detect or rule out underlying diseases that may represent the cause of PH, including various heart and vascular diseases, human immunodeficiency virus (HIV), lupus, or as is sometimes the case with CTEPH, unresolved pulmonary thromboembolism, when a clot-like mass gets stuck to the lung’s blood vessel wall and blocks blood flow.”
According to Dr. Saggar, a ventilation/perfusion (VQ) scan is the preferred and recommended screening test for CTEPH. It is important for anyone diagnosed with the disease to see an experienced CTEPH practitioner who can determine candidacy for pulmonary thromboendarterectomy (PTE) surgery. Although PTE is the recommended treatment for CTEPH, not everyone is a candidate. It’s important for patients to speak with his/her doctor about options.
Despite efforts to ensure better education about the disease, its symptoms and methods of treatment, physicians like Dr. Saggar and those throughout the CTEPH community note that there is still progress to be made. That’s why November is an especially important time for the PH community to come together and raise awareness and generate additional support for research and improve care.
“Building awareness and enhancing education will help to extend and improve the lives of patients with CTEPH and all forms of PH,” says Dr. Saggar.
For more information about PH or to provide support visit http://www.phaware.global/. To learn more about CTEPH, visit www.CTEPH.com.
Dr. Saggar and phaware partnered with Bayer to help raise awareness about PH and CTEPH during PH Awareness Month. Dr. Saggar is a paid consultant to Bayer.
*Based on a study with 223 patients in which approximately 4% were diagnosed with CTEPH within 2 years of their first episode of pulmonary embolism (blood clot in the lung). CTEPH did not develop after two years in any of the remaining patients.
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 Pepke-Zaba et al. Chronic thromboembolic pulmonary hypertension: role of medical therapy. Eur Respir J. 2013;41:985–990.
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 Wilkens H et al. Chronic thromboembolic pulmonary hypertension (CTEPH): updated recommendations of the Cologne Consensus Conference 2011. Int J Cardiol. 2011;154(suppl1):S54-S60.
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Is your workplace a nurturing professional environment, or does competition and rank often override camaraderie and support?(BPT) - In order for nurses and other health care staff to do their jobs as best as possible, a culture of care can make a big difference. This means creating a workplace that fosters growth, supports professionals' needs and brings teams closer together. When health care teams feel cared for and supported, they are more inclined to provide their best care of patients and families, which improves outcomes all around.
Chamberlain University president Susan Groenwald, PhD, RN, ANEF, FAAN just released a book that addresses this topic. “Designing & Creating a Culture of Care for Students and Faculty: The Chamberlain University College of Nursing Model” serves as a guide for any organization seeking to make cultural and structural changes to improve student or employee satisfaction, engagement and achievement. The book describes the unique organizational culture — Chamberlain Care -- in which students and colleagues thrive, students are cared for in a way that can improve their chances of success, and that provides an advantage in attracting and retaining high-quality and effective health care faculty and staff.
What are the possibilities when an organization takes such big steps toward revolutionizing its culture? Groenwald (2017) provided evidence that enhanced services and support provided to students and faculty improved employee satisfaction, engagement and academic outcomes. Groenwald’s theory is that by providing extraordinary care to students and colleagues, they are more likely to provide extraordinary care to patients and family. For example, an independently administered survey of international employee engagement in various industries benchmarked Chamberlain faculty against employees worldwide. Since 2013, Chamberlain’s faculty engagement scores have remained above the benchmark for the best U.S. companies and continue to rival benchmark scores for the best companies in the world.1
“While many books and articles have advocated for care and caring in nursing education, what truly distinguishes this text and the work it describes throughout Chamberlain University is its thorough coverage of how caring can be operationalized — and made tangible — in all aspects of an organization's mission, vision, people, processes and practices,” said National League for Nursing President Anne L. Bavier, PhD, RN, FAAN, dean and professor in the College of Nursing and Health Innovations at the University of Texas at Arlington. “In nursing education, a strong and positive culture that permeates throughout the institution not only helps nursing students stay in school and graduate, but ultimately provides the support needed for them to truly learn and develop the knowledge, skills and values today’s nurses truly need,” said Groenwald.
To learn more about creating a culture of care and to order the book, visit the National League for Nursing website at http://nln.lww.com.
1 Groenwald, S. (2017). Designing & Creating a Culture of Care for Students and Faculty: The Chamberlain University College of Nursing Model.
(BPT) - Caring for someone with Alzheimer’s or other dementias is exceptionally demanding, and especially challenging.
A recent survey by the Alzheimer’s Association indicates many caregivers are not getting the help and support they need — 84 percent of caregivers say they would like more support in caring for someone with Alzheimer’s, especially from family members.
“Too many people are shouldering the caregiving burden alone,” says Ruth Drew, director of information and support services at the Alzheimer’s Association. “Many people want or would welcome help, but they are reluctant or just too overwhelmed to ask.”
Tips for supporting a caregiver
Providing help and support to caregivers can be easier than most people think. Even little acts can make a significant difference, Drew says. The Alzheimer’s Association offers these suggestions:
Learn: Educate yourself about Alzheimer’s disease — its symptoms, its progression and challenges facing caregivers. The more you know, the easier it will be to find ways to help.
Build a team: Organize family and friends who want to help. The Alzheimer's Association Care Team Calendar is a free, personalized online tool that allows helpers to sign up for specific tasks, such as preparing meals, providing rides or running errands.
Give a break: Spend time with the person with dementia, allowing the caregiver a chance to run errands, go to their own doctor’s appointment or engage in an activity that helps them recharge. Even one hour can provide the caregiver some relief.
Check in: Many caregivers report feeling isolated or alone; make a phone call to check in, send a note or stop by for a visit.
Tackle the to-do list: Ask for a list of errands that need to be done. Pick up groceries or dry cleaning, or even offer to shuttle kids to and from activities.
Be specific and be flexible: Open-ended offers of support (“Call me if you need anything,” or “Let me know if I can help.”) may be well-intended, but are often dismissed. Be specific in your offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help.
Join the fight: Honor a person living with the disease and their caregiver by supporting the Alzheimer’s cause. Volunteer at your local Alzheimer’s Association office or participate in fundraising events.
“It’s a mistake to assume caregivers have everything under control,” Drew says. “Most caregivers can use and would appreciate help. No one can do everything, but each of us can do something.”
To learn more about Alzheimer’s disease and ways you can support families and people living with the disease, visit www.alz.org, the website of the Alzheimer’s Association.
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