MAR 04, 2019 04:06 PM PST

European Respiratory Society Task Force Sarcoidosis Patient Survey

WRITTEN BY: Dena Aruta

Sarcoidosis is a rare, granulomatous disease that is found in the lungs of 90% of people diagnosed, but it can affect any organ in the body. More than 2/3 of patients will have complete resolution of the disease within 2-5 years; however, 40% of people develop chronic sarcoidosis. Many people with chronic sarcoidosis whose clinical signs of disease have resolved still have symptoms that affect their quality of life. These symptoms include fatigue, pain, cognitive dysfunction, small fiber neuropathy, depression, and exercise intolerance. 

A European Respiratory Society task force was initiated in 2016 "to develop an international clinical guideline on sarcoidosis treatment to provide evidence-based recommendations for healthcare professionals. Sarcoidosis outcomes are traditionally governed by clinical measures, such as blood tests, pulmonary function tests (PFTs) and imaging, but to inform the development of this guideline recommendation, a survey was designed to gather views about which treatment outcomes matter most to sarcoidosis patients." The survey addressed seven patient outcomes: quality of life, functionality, pulmonary function tests, blood tests, imaging, adverse events, and survival. The survey was available online in six languages (Dutch, German, English, Italian, Spanish, and French) for January and February in 2018. A themed analysis was performed as well as the calculation of the mean across all ratings of the outcomes. The survey had several limitations including participants were invited to take the survey mostly through promotion on patient organization networks, restricted to those who had internet access and were technologically competent, and the specific languages offered.

The survey had a high response rate with 1,842 participants. Quality of life and functionality were the most important outcomes chosen by all participants.  Clinicians most frequently rely on imaging studies, lab tests, and pulmonary function tests to come up with a treatment plan; however, assessment of fatigue, cognitive symptoms, and psychological aspects of the disease that affect a patient's quality of life and functionality are less likely to be addressed. As articulated by one of the participants, “Scans, tests, and examinations are of course crucial in the treatment, but the well-being and the quality of life determine how much I suffer from sarcoidosis. And that is the most important thing.” 

Another point that was made clear by the survey was that "clinicians should work in a multidisciplinary way to ensure a holistic approach. In sarcoidosis, it is important to identify every symptom and treat the patient as a whole. The survey results stress that treating each patient as a person and not as a lung disease is imperative. This is particularly important for multisystem diseases to ensure that specialists can contribute their expertise at the same time to enable quicker, accurate and comprehensive diagnosis, treatment and follow-up."

It is hoped that the results of this survey will reinforce the need for patient-centered care by sarcoidosis specialists who understand and consider the whole picture that affects their patients. The ability to function daily in every area of one's life and the quality of life that one experiences are critical when treating those with sarcoidosis. Quality of life is everything; without it, nothing else matters. 

About the Author
  • After earning my Bachelor of Science degree in biology/chemistry from Virginia Polytechnic Institute and State University (aka Va. Tech), I went on to complete clinical rotations in laboratory medicine at Roanoke Memorial Hospital. I spent the next 21 years working in healthcare as a clinical microbiologist. In 2015, I combined my fascination with medicine and passion for writing into a freelance career, and I haven't looked back. Even though my expertise is in microbiology and infectious diseases, I'm adept at writing about any medical topic. Being a freelance writer allows me to pursue a career where I can work at home with my two feline assistants, Luke and Grace. I'm a firm supporter of animal rights and volunteer for a local rescue during my free time. 
You May Also Like
NOV 14, 2019
NOV 14, 2019
Does Personality Affect Your Risk for Dementia?
Your personality as a teenager may affect your risk of developing dementia later on in life. The results of a long term study beginning in the 1960’s...
NOV 14, 2019
Genetics & Genomics
NOV 14, 2019
Genetic Variations Connected to Severe Forms of Multiple Sclerosis
Scientists are learning more about the genetic factors underlying MS, which is a highly variable disease....
NOV 14, 2019
NOV 14, 2019
Immune System Responsible for Organ Failure in Malaria
In the most severe cases of malaria, a person can experience organ failure and die. Often times, though, this is not directly due to the parasitic malaria ...
NOV 14, 2019
NOV 14, 2019
Meal Timing May Have a Profound Influence on Your Workout
A new study, published in the Journal of Clinical Endocrinology and Metabolism, sought to examine the relationship between meal timing, fat storage, and in...
NOV 14, 2019
Clinical & Molecular DX
NOV 14, 2019
Opioid Addiction Can be Controlled Using an In-Brain Chip Technology: First U.S. Clinical Trial
Opioid addiction is a long-lasting (chronic) disease that can cause major health, social, and economic problems. Opioids are a class of drugs that act...
NOV 14, 2019
Health & Medicine
NOV 14, 2019
Antibiotic Resistance by the Numbers
The Centers for Disease Control and Prevention (CDC) just released its latest Antibiotic Threats in the United States report, which is summarized in the vi...
Loading Comments...