The BTS Sarcoidosis Clinical Statement

Monday, December 7, 2020

Dr Muhunthan Thillai co-chaired the British Thoracic Society (BTS) Working Group that produced a new clinical statement on pulmonary sarcoidosis. Here he tells us more.

A clinical statement is very different from a BTS guideline. Can you tell us a little more?

Clinical Statements are a relatively new type of publication for BTS. As clinicians we strive to anchor all of our care on evidence-based medicine, but for some diseases there is very limited evidence available. This may be because of lack of patient numbers or in the case of sarcoidosis because of a lack of high quality randomised controlled trials. However, clinicians still need a reliable and safe way to treat these patients, and this is why we began developing clinical statements. They are based on expert knowledge and best practice in a topical clinical area, and offer a series of clinical practice points, based on clinical consensus on the available evidence.

Why did we need a clinical statement for Sarcoidosis?

It is true that although sarcoidosis is not as prevalent as some of our other respiratory diseases such as asthma or COPD, we still know that around 1 in every 10,000 people have the disease in the UK and each year about 3,000 to 4,000 people are diagnosed. Current evidence for the treatment of sarcoidosis is relatively low compared to other respiratory conditions, yet there is still a great deal of expert knowledge and experience we can share. A clinical statement provides a valuable opportunity for us to plug a gap and help clinicians and their patients to make the best possible decisions. Importantly, this document went out to public consultation, and has also been published in a leading peer reviewed respiratory journal.

I am really proud of all the hard work that our co-authors and the BTS itself put into creating this clinical statement. Sarcoidosis is still such a nebulous disease and there is significant variation in the UK in how we diagnose and treat the condition. When do we do a biopsy? When should we start steroids and how long should we follow patients up for in clinic? I hope that we have covered some of these important questions and provided support to both clinicians and patients to better manage this disease.
Dr. Muhunthan Thillai, Co-chair of the BTS Sarcoidosis Statement

What does the clinical statement cover?

The statement covers the diagnosis, evaluation and management of pulmonary sarcoidosis. At the end of each chapter we have provided key clinical practice points. You will find clinical practice points in the following areas:
• Clinical presentation
• Diagnosis
• Management
• Monitoring, discharge and withdrawal of treatment
• Communication

In addition to pulmonary sarcoidosis we have written a dedicated section on cardiac sarcoidosis. This is because we know that this is an important condition which may be missed in the respiratory clinic but can have severe consequences for patients if left undiagnosed and not treated.

Are there particular challenges for the diagnosis and treatment of sarcoidosis?

Diagnosis is often challenging. As a first step we support all patients having a chest x-ray, and lung function tests reviewed by a multi-professional team. Decisions about when, and indeed whether to carry out CT scans or perform biopsies requires strong communication between healthcare staff and their patients and we hope the statement will facilitate these discussions.

Traditional treatment pathways have assumed a “one size fits all” model. As a group we were keen to provide information to help clinicians and their patients to discuss treatment options openly. There are a number of patients who do not need active treatment, and we have set out the following broad indications for initiating therapy:
(1) a high risk of mortality or disability due to major organ involvement
(2) unacceptable loss of quality of life

The clinical statement clearly has a focus on improving patient care, hasn't it?

Absolutely. Patients need to be at the centre of all decisions about their diagnosis, treatment and management. As clinicians, we need to make sure we provide accurate and up to date information for our patients and we need to ensure that clinicians have a good clinical statement to use as a discussion point for their patient care. We have attempted to be very clear and answer some important questions such as when to carry out a biopsy and what type of lung biopsy to carry out, when start treatment and with which medications and how closely to follow patients up in clinic.

Sarcoidosis UK, the charity providing support and information for people with sarcoidosis, and funds for research into a cure for the condition, has also welcomed the publication of the Clinical Statement. They told us:

“We know from our extensive contact with patients that there are significant challenges in diagnosis and management of pulmonary sarcoidosis. We therefore welcome this statement, which provides expert-knowledge and support to both clinicians and patients in order to better manage the condition.

“Providing clearer guidance for clinicians is an important step in improving sarcoidosis care and outcomes for patients. We are pleased that the statement highlights the importance of a patient-centred approach to sarcoidosis management and treatment, allowing patients and clinicians to make the best possible decisions.

“Whilst there remains much to learn about sarcoidosis, we feel that this statement represents an important step forward.”

BTS hosts the UK Sarcoidosis Registry. How does this benefit patient care?

To date, the registry has over 600 sarcoidosis cases (with longitudinal data for over 80 patients). For individual clinicians and hospitals, the registry allows clinicians to record individual data and see over time how their service is operating. On a national level, BTS is able to look at anonymised data for the whole country to look at the care provided nationally, and here it is possible to comment on where care is being provided according to standards and also highlight where more work may be needed.
We have already written the first data analysis piece from the BTS Sarcoidosis registry and aim to perform further analysis as we collect more patient data.

This type of data collection is vital for improving standards of care and I would encourage all clinicians who are involved with IPF to get involved. More information is available for patients and clinicians on the BTS Website lung registries page.