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ObjectiveThis study analyses the 2020 survey and reviews the 2009, 2014 surveys to ascertain which Behçet's symptoms, personal and family status, patients' lifestyle, and work-related outcomes impacted on Health-Related Quality of Life (HRQoL).MethodsFour hundred and fifty-nine Behçet's patients submitted an online survey/questionnaire. Patients provided information on socio-demographic characteristics, disease duration, historical and current symptoms, systemic and topical medication, health related lifestyle, work-related outcomes regarding employment status and claiming benefits and Quality of Life (QoL) measured by EQ-5D index.ResultsFour hundred and nineteen patients met the inclusion criteria, and 371 who had full data (Males: Females: Others = 84:285:2, mean–age = 41.1 ± 23.3:38 ± 13.2:40 ± 5). The main symptoms associated with patients seeking medical care were mouth ulcers 30% and genital ulcers 23%, joint 14%, and eye problems 9%. The EQ-5D index for 2009, 2014, 2020 was (mean ± SD); 0.47 ± 0.38, 0.42 ± 0.37, 0.34 ± 0.40, respectively, p < 0.05. 2020 patients had the worst values of the five domains compared to 2014 and 2009. Interestingly, mobility value was the same over the 10 years of monitoring patients. Behçet's syndrome (BS) symptoms that had significant negative impact on QoL were; 2009 (arthropathy, neurological problems, pathergy reaction, and stomach/bowel symptoms), 2014 (arthropathy, headache, neurological problems, pathergy reaction, and skin lesions), 2020 (arthropathy, neurological problems, and stomach/bowel symptoms). The 2014 and 2020 surveys reported the QoL is significantly better in patients on immunosuppressant, who did sport, continued in employment and not receiving benefits.ConclusionJoints and neurological symptoms are the main symptoms which had negative impact on BS patients over the 10 years, sociodemographic (gender, age, marital, and education status), lifestyle (medication, cannabis, drinking wine, and regular exercise), employment status (employee and no career change), and accessing benefits (never claim benefit) had significant influence on patients' HRQoL.

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The aim of this online survey was to assess the impact of the COVID-19 pandemic on patients with Behçet's syndrome (BS) using Maslow's hierarchy of needs. MethodsSixty-eight BS patients from the UK completed an online questionnaire that covered three components of Maslow's hierarchy of needs regarding Physiological needs (sleep, food, mobility), Safety needs (employment, health), Social needs (relationships), personal precautions and main concerns regarding COVID-19. ResultsThe patients received a letter from the NHS (66.2%) advising shielding. Health concerns were addressed using Tele-medicine by telephone consultations and e-mails to access BS specialists during lockdown (44.1%; 27.9%). In addition, patients also obtained information through official government and Behçet corporate health web pages related to Behçet's disease for self-empowerment. During lockdown, their weekly working hours were reduced (26.65±13.86 vs. 20.79±17.94) (p=0.017) and the employment rate was decreased (32.6% vs. 26.7%) in comparison to pre-lockdown. Moreover, the reduction in frequency of exercise per week (4.39±1.94 vs. 3.71±2.26) and healthy food consumption (73.5 % vs. 47.1%) per week were also reported (p=0.007; p=0.001, respectively). Furthermore, patients experienced sleeping less (54.4%) and feeling lonely (66.1%). ConclusionUsing Maslow's hierarchy of needs provided a framework for reviewing the quality of basic needs in patients' life during lockdown. These needs are required for healthy social lives and the deprivation should be considered while considering healthcare planning. Since lockdown appeared to have a negative influence on patients' lives and disease management in the framework of patient-centred, the empowerment of patients gained importance at this point.