King’s Sarcoidosis Questionnaire
Sarcoidosis affects patients very differently, particularly over time. It is therefore sometimes difficult for consultants to know how sarcoidosis is affecting their patient’s health and quality of life. SarcoidosisUK have partnered with Kings College Hospital to put their KSQ online. This is a quick and easy, self-administered health questionnaire designed specifically for sarcoidosis patients. This measure will help track patient health and improve communication with consultants about treatment and care plans. SarcoidosisUK recommend every sarcoidosis patient completes the KSQ before each consultation and takes the results to discuss with their consultant.
The King’s Sarcoidosis Questionnaire (KSQ) is available online here: COMPLETE THE KSQ NOW
You can read more about the KSQ and how it was developed below.
What is the KSQ?
The KSQ is a free, online questionnaire to be filled out by sarcoidosis patients. The questionnaire takes around 10 minutes and is split into 5 sections; general health status, lungs, medication, skin and eyes. There are 29 questions in total, however some questions may not be answered (depending on the type of sarcoidosis affected). Each question asks patients to rate how they feel about many different aspects of their life, for instance how much pain they are in or how difficult they find everyday tasks. Information provided is confidential. Results are given as a number between 1-100 with higher numbers indicating better health.
Why is the KSQ useful?
The KSQ quickly assesses the impact sarcoidosis is having on a person’s life. There are a number of ways this information is useful:
- Care plans: KSQ results can be used by consultants and patients to develop the best care plan for their sarcoidosis.
- Consultation: The KSQ identifies the health issues most important to each individual. The results therefore provide a useful starting point for consultations – Doctors can quickly identify problem areas and focus discussions.
- Treatment: If taken by the patient both before and after a new treatment, the KSQ can give a basic measure of the success of this treatment.
How do patients use the KSQ and interpret the results?
Consultants should advise patients when to complete the KSQ – this will normally be before attending a consultation, perhaps in the waiting room. However patients can complete the survey at any time and as many times as they like. For instance patients might take the KSQ once per month to track how sarcoidosis is affecting their health.
Results are displayed on the screen at the end of the questionnaire. In addition there is an option for these results to be emailed to the patient and / or their consultant. Results give a number between 1 and 100 for each section with higher numbers indicating better health.
How was the KSQ developed?
The KSQ was developed in 2012 by a team at King’s College Hospital, London, led by Prof Surinder Birring, Consultant Respiratory Physician and Interstitial Lung Disease Lead at King’s. You can read more about the development and validation of the measure in the medical journal below. SarcoidosisUK transferred the KSQ online in 2018 – this digitalised version is a more convenient and widely available tool, making it more useful for patients and healthcare professionals.
Patel, A. S., Siegert, R. J., Creamer, D., Larkin, G., Maher, T. M., Renzoni, E. A., … & Birring, S. S. (2012). The development and validation of the King’s Sarcoidosis Questionnaire for the assessment of health status. Thorax, thoraxjnl-2012.