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.
