Judicious reporting of symptom progress and severity, health outcomes, and the HRQoL information by patients will enhance the understanding of evolution of BS over time. This in turn will assist the planning of constructive interventions. Psychological support should remain an important component of management with 72% of our cohort suffering from moderate or extreme anxiety and depression.

This project provided the opportunity to retrospectively review surveys carried out in 2009 and 2014 compared to a 2020 survey, and demonstrates the associations between BS symptoms, personal/family status, patients' lifestyle, claiming benefits, and employment status with HRQoL scores.

The strategy of collecting data for the 2020 BS survey was changed to an on-line questionnaire because of SARS-CoV-2 pandemic, unlike the previous two surveys where postal questionnaires were used, and more questions were added to the 2020 survey. These included questions on “home ownership” (63% of respondents answered yes), and “regular access to the internet” (about 99% of respondents had access). The response rate of 2020 survey and 2014 and 2009 showed cohort differences between sexes with respondents in favour of the females as women are more compliant than men in contributing to such studies (14). The ethnicity of the respondents in this study was mainly white-British, and white-European. Only 10% were black and minority ethnic groups which is smaller our patient cohort although we encouraged participation.

In 2020 survey the BS symptoms activity was linked primarily to stress acting as the main trigger, followed by fatigue, then cold or other infections, and finally seasonal changes. Rheumatologists, ophthalmologists, and GMPs were the main referring physicians. Behçet's symptoms historical symptoms were ranked as follows; oral ulcers ranked the greatest negative impact on QoL. The 2^nd and 3^rd selections were mainly fatigue and joints problems, respectively. However, the current symptoms; 1^st, 2^nd, and 3^rd were fatigue, joint problems, and then oral ulceration (Figure 1). 2014 survey reported that 85.4% of patients suffered from fatigue; however, the 2020 survey about 92% suffered from fatigue.

Regression modelling demonstrated that the BS symptoms that impacted negatively on the QoL in 2009 were; arthropathy, neurological problems, pathergy reaction, and stomach/bowel symptoms, whereas, in 2014; arthropathy, headache, neurological problems, pathergy reaction, and skin lesions. In 2020 survey were; arthropathy, neurological problems, followed by stomach/bowel problems. This indicates constant review permits provision of suitable interventions to ameliorate the burden of symptoms which impact on QoL and general wellbeing (7, 11).

These BS surveys have allowed the gathering of data to assist in providing evidence-based advice to patients and patient advocates, as well-moderating use of medication used to alleviate their symptoms. For example, the use of mouthwashes (TMW and subsequently Triorasol) (15) are proven to be beneficial in reducing BS oral symptoms. TMW is readily available to all our BS patient at an affordable price (given that many patients might be unemployed, receiving benefits or both other definitions on restricted financial means). Interestingly in 2020 survey, the immunosuppressant medications and the biological agents did not show any significant differences in patients' QoL between the BS groups who used these medications and those who did not. However, steroids or chemotherapy medications (such as Chlorambucil, Methotrexate, and Cyclophosphamide) revealed significant lower QoL in patients taking these medications. Our UK Behçet's treatment pathway used by all Centres broadly follows the European League Against Rheumatism (EULAR) recommendations for the management of Behçet's, 2018 (16, 17).

Smoking cessation and minimising the use of cannabis are significant lifestyle interventions needed to reduce the negative impact on BS patients' QoL and improve the disease outcome experience of patients. Behçet's centres team partners with smoking cessation services for prompt referral and successful intervention.

Patients with low education attainment, have a lower QoL compared with patients with higher education attainment. Higher levels of education attainment might reflect a better ability to navigate the NHS and support services, greater understanding, and compliance with management strategies. In addition, patients who were in full or part-time employment have better QoL than nearly 125 patients who were retired or unemployed because of BS.

Behçet's symptoms patients who are incapacitated and unemployed should have access to support and benefit schemes. However, 2014 and 2020 survey findings showed that QoL was lower in patients who claimed/or received benefits compared to patients who did not.

The last 18 months has seen a significant change in employment due to the SARS-CoV-2 pandemic and a follow up study to review the impact of lock downs and furloughed employment of BS patients will be undertaken.

Limitation of studies carried out in 2009, 2014, and 2020 on HRQoL did not include the BS cardiovascular symptoms. We also did not account for changes to the processing for claiming benefits between, 2009, 2014, and 2020. In addition, patients' disease activity which would impacts on QoL was not included in this survey.

Additionally, these studies were retrospective and comparative cross-sectional studies of the same cohort of BS patients over time. It will be more effective if the studies with continued longitudinal studies.