The impact of multifactorial factors on the Quality of Life of Behçet's patients over 10 years

Abstract

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.

A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project

“…Quite predictably, quality of life and fatigue were also associated reciprocally and with sport habits, BMI variability and therapy-related necessity/concern perception. A higher impact of physical activity on quality of life in BD has been reported also by Senusi et al (19). On the other hand, Bodur et al identified a correlation between disease activity and psychological well-being, measured as Life Satisfaction Index and Nottingham Health Profile, with specific regard to the presence of fatigue, joint involvement, gastro-intestinal involvement, headache and mucosal ulceration (20).…”

Behçet’s Disease, Pathogenesis, Clinical Features, and Treatment Approaches: A Comprehensive Review

“…Adequate rest is essential, as fatigue is a common symptom. Stress management techniques such as mindfulness, meditation, and yoga can help manage symptoms and reduce the likelihood of flare-ups [74]. Avoiding triggers, whenever known, can also help prevent flare-ups.…”

“…The management of Behçet's disease is challenging for practitioners with its wideranging effects on the body and the lack of definitive diagnostic tests and needs different medical professionals [15,17]. The critical role of ophthalmologists cannot be overstated, as they are at the forefront of preventing and treating eye conditions like uveitis that can severely affect vision [74]. Dermatologists, on the other hand, are tasked with the careful handling of the skin and mucosal issues that are so characteristic of this disease [19].…”