Better quality of life and greater functionality are the most important treatment goals for people with sarcoidosis, according to a large-scale survey of patient perspectives.
Survey results are expected to be included in European Respiratory Society (ERS) guidelines to be released this year. They were reported in “Sarcoidosis: patient treatment priorities,” published in the journal ERJ Open Research.
An ERS task force was set up in 2016 to develop evidence-based clinical recommendations to help guide healthcare professionals on the best treatment approaches for sarcoidosis patients.
Commonly, researchers assess treatment efficacy based on clinical measures such as blood tests, pulmonary function tests, and imaging scans. But these are not always the most important outcome measures from a patient’s perspective.
To understand patients’ views and to improve the design of ERS guidelines, the European Lung Foundation (ELF) — via its Sarcoidosis Patient Advisory Group (PAG), made up of representatives patient groups from nine countries — organized a survey.
It asked patients to rate several common outcomes using a five-point scale (from extremely important to not important). The survey was available online in six languages — Dutch, German, English, Italian, Spanish, and French — from January through February 2018.
A total of 1,842 people with sarcoidosis diagnosis responded.
While functionality was not clearly defined, the study mentioned “fatigue, pain, everyday cognitive failure, small fiber neuropathy, exercise limitation, and depressive symptoms” as disease characteristics that significantly impact patients.
Results were similar among all language groups with a few small variations, suggesting that its findings are “relevant to people with sarcoidosis in different countries and health systems,” the researchers wrote.
Answers showed that quality of life and functionality were the most relevant outcome measures for patients, or those considered extremely important/very important. In contrast, blood and respiratory function tests were rated lowest, identified as only moderately important.
Adverse events, imaging data, and survival were rated between very important and moderately important outcomes.
According to the results, while the clinical relevance of scans, tests, and examinations is widely recognized, patient’s well-being and quality of life should be also taken into consideration by physicians when deciding a treatment approach. Ability to work and support for functionally are other key factors.
“The survey results reinforce the view that clinical indicators should not be the only target of treatment and that sarcoidosis clinicians should be encouraged to assess patient-reported aspects so that they can be incorporated into care,” the researchers wrote.
A multidisciplinary approach to identify specific symptoms while still treating the patient as a whole was also favored, as was helping with providing access to a broad range of services, including pain management and psychological support. “The survey results stress that treating each patient as a person and not as a lung disease is imperative,” they wrote.
Finally, the survey underscores the need of sarcoidosis specialists and specialist centers in every country. Diagnosis and treatment can be a challenge, especially in cases of atypical manifestations.
“We hope that these survey findings will reinforce the value in investing in patient-centred sarcoidosis healthcare, and that the ERS guideline incorporates this within their recommendations to be published in 2019,” the team wrote.
The team emphasized that “due to the high number of active patients keen to share their views to improve treatment, we also encourage the sarcoidosis health and research community to partner with sarcoidosis patient organisations, and to utilize this immense source of sarcoidosis lived experience to develop effective methods of measuring and incorporating quality of life and functionality outcomes as a way of improving sarcoidosis outcomes and future treatment.”