Lupus patients desire more targeted information on specific treatments available, underscoring an opportunity for the pharmaceutical industry to play a more pivotal role in patient education.
[Exton PA, November 8, 2023] — Spherix Global Insights recently conducted research with 306 Systemic Lupus Erythematosus (SLE) patients, delving into their personal experiences navigating the complex landscape of the disease and its treatments. The inaugural publication of Special Topix™: SLE Patient Voice Dynamix reveals a considerable number of SLE patients, after recognizing initial symptoms, postponed seeking medical guidance for a year or longer, often underestimating the severity of their condition. Upon consulting healthcare professionals, a substantial portion faced prolonged diagnostic journeys, enduring over a year to receive an accurate diagnosis. This delay predominantly resulted from multiple misdiagnoses stemming from the overlapping presence of other health conditions such as migraine, hypertension, or rheumatoid arthritis, further complicated by the heterogeneous nature of the disease. Notably, some patients encountered severe symptoms, leading to emergency room diagnoses, indicating the urgency and complexity of addressing lupus-related healthcare needs.
Indeed, SLE patients commonly experience a myriad of concurrent health conditions, with approximately one-fifth officially diagnosed with lupus nephritis. However, an alarming number, nearly double that figure, disclose some degree of kidney involvement alongside their disease. In addition to these challenges, patients frequently contend with diverse manifestations of lupus affecting muscles, bones, joints, and skin, often presenting as rashes and irritation. Notably, a majority of participating SLE patients report experiencing mental and emotional health issues attributable to their condition—an aspect frequently overlooked in reports from accompanying Spherix research conducted among treating specialists. Given the prevalence of comorbidities and diverse SLE manifestations, it comes as no surprise that nearly all patients grapple with fatigue, with half of them describing it as severe over the past twelve months. Joint pain, swelling, stiffness, and sensitivity to light also afflict many individuals within the SLE community.
The disparity between patients’ informational needs and their actual access to comprehensive education is glaring. Patients overwhelmingly desire more information about their disease and treatments. Understanding differences in treatment options, how patients can make lifestyle changes to improve their outcomes, and information on managing side effects from different treatment options top the list of most desired information – offering significant opportunities for pharmaceutical companies to provide assistance with patient education.
Notwithstanding this yearning for more information, the Lupus patient community remains remarkably self-empowered, often relying on personal research for insights into their condition. One patient encapsulates this sentiment, stating, “I would say in the first 20 years of having my lupus, [I have gotten information from] my doctors. I didn’t know anyone that had lupus and it was just basically my doctors, relying on them to give me information. I then started looking at the internet for the different options for medications…in the last year, I’ve found social media and different support that has been very helpful in meeting other people who have lupus.”
Further highlighting the self-empowered nature of the lupus community is their active participation in treatment decisions. A majority of the surveyed SLE patients indicate a substantial level of involvement when discussing treatment options with their healthcare providers. They play a crucial role in shaping the final treatment plan, with an additional third asserting at least some degree of input in treatment choices and plans. With such an involved and vocal patient community, the lack of comprehensive education on treatment options might significantly influence the utilization of advanced systemic treatments in actual prescription practices.
An evident discrepancy between healthcare providers and patients is the widespread use of steroids—either in acute or chronic forms—in the treatment of SLE. Despite the findings from Spherix’s RealTime Dynamix™: SLE (US) Q3 2023 study, which revealed that 93% of rheumatologists advocate for minimizing steroid usage as a critical treatment objective, with 72% expressing concerns about the safety of any steroid dosage, nearly all participating SLE patients report a history of either current or past steroid treatment for their condition. Notably, among those presently on oral steroid regimens, half of the patients express a high level of comfort with their current usage. This comfort is largely attributed to the swift relief from symptoms provided by the steroids, highlighting a potential factor contributing to patient satisfaction despite the medical community’s concerns about their long-term safety.
Patient Voice Dynamix further explores the current advanced systemic treatment regimens of patients on GSK’s Benlysta, AstraZeneca’s Saphnelo, and Aurinia Pharmaceuticals’ Lupkynis, as well as any potential discussions of these treatment options, rationale for non-treatment, and potential future considerations from the patient perspective.
Patient Voice Dynamix™ is an independent service that explores the voice of the patient as they progress through their disease and treatment journeys.
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Spherix Global Insights is a leading provider of market research, business intelligence and advisory services to the global life sciences industry. The company’s unique service offerings are powered by deep therapeutic knowledge, the Spherix Network specialty physician panel, and commercially relevant analyses to enable strategic decision-making by our valued customers.
A trusted advisor and industry thought leader, Spherix Global Insights provides specialized market expertise in six (6) focused therapeutic areas including: dermatology, gastroenterology, nephrology, neurology, rheumatology, and ophthalmology.
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