An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

Abstract

Objectives A survey conducted by the Spanish Lupus Federation (FELUPUS) shows the results on perceptions and experiences of the people who live with lupus in Spain. The information was gathered anonymously from May 21 st to June 30 th , 2020. The aim of the study was to monitor the impact of the disease on quality of life, as well as to measure the impact of organ damage in lupus patients. Methods A national survey was conducted among people with lupus living in Spain who belong to the Spanish Lupus Patient Association (FELUPUS). Online interviews of approximately 25 min were completed. The information was gathered anonymously from May 21 st to June 30 th , 2020. Results One thousand two hundred sixty-three interviews were completed. 92% had a diagnosis of Systemic Lupus Erythematosus (SLE) and 8% of Cutaneous Lupus Erythematosus (CLE); 95% of the patients surveyed were female. Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. 73% of patients considered that there was little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Regarding organ damage, many patients did not understand the concept of chronicity and irreversibility of the term, relating it erroneously to acute symptoms like fatigue (38%), joint pain (47%) and even to the presence of cutaneous symptoms such as the presence of oral ulcers (17%). Conclusions The survey highlighted the need for disease awareness campaigns, greater involvement of healthcare professionals and the need to provide more information to lupus patients from the time of diagnosis. Nationally and to our knowledge, this is the survey with the largest number of participants ( N = 1263) conducted in patients with lupus. Key Points • A national survey was conducted among people with lupus living in Spain and belonging to patient associations in Spain (FELUPUS). • Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. • Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. • 73% of patients considered that there is little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Supplementary Information The online version contains supplementary material available at 10.1007/s10067-023-06500-3.

Knowledge, Attitudes, and Practices Among Patients with Systemic Lupus Erythematosus Toward Disease Management and Biologic Therapy

“…An online survey of the Spanish Lupus Patient Association (FELUPUS) reported that 73% of Spanish SLE patients perceived a lack of knowledge about the disease at the time of diagnosis, with 92% of patients having a low level of SLE knowledge. 12 Similarly, a study analyzed SLE patients' knowledge and health-related quality of life found very low baseline levels of SLE knowledge among Iranian SLE patients, with a significant impact on patients' health-related 944 quality of life. 13 A recent qualitative investigation has highlighted the inadequate provision of clear and consistent information to patients with SLE at the time of diagnosis, leading to further distress and confusion among this population.…”

Positive psychological capital, post-traumatic growth, social support, and quality of life in patients with systemic lupus erythematosus: A cross-sectional study

“…Employment status 31 is another factor impacting QOL, as working late shifts may similarly affect overall well-being. 32 Among the reasons for SLE patient visits, those with relapses exhibited lower QOL scores. 33 This could be linked to the fear and uneasiness individuals experience during relapses, as well as challenges in maintaining consistent medication.…”

Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study

“…5 It has been shown that a lack of knowledge about the disease has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. 1,[6][7][8] The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. Firstly, we focus on the lack of disease awareness by HCPs.…”

“…However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. 1 – 3 The frequently non-specific symptoms of the disease’s onset make its early diagnosis difficult. 4 Furthermore, the “invisibility” of some of SLE’s symptomatology contributes to the lack of understanding by the patients’ social circle.…”

“… 5 It has been shown that a lack of knowledge about the disease has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. 1 , 6 – 8 …”