The recent study on lupus diagnosis has highlighted significant delays in diagnosing the autoimmune disease, with some patients waiting up to 40 years for a correct diagnosis. The research, involving 268 lupus patients across the UK, found that the average diagnostic delay was 7.5 years. Notably, participants diagnosed in more recent decades experienced longer delays than those diagnosed in the 1990s.
Lupus is an autoimmune disease with symptoms ranging from joint pains to potentially life-threatening damage to organs such as the heart, lungs, brain, and kidneys. Early diagnosis and treatment are crucial for slowing disease progression and limiting long-term damage.
The study revealed that 'diagnostic overshadowing'—where symptoms are misattributed to other conditions or characteristics—was a major cause of these delays. Many participants reported receiving multiple misdiagnoses before their lupus was correctly identified. One participant shared experiences of being misdiagnosed with stress, anxiety, post-natal depression, menopause, and overexertion over a span of 15 years.
Participants also described various types of misattribution by clinicians: being told nothing was seriously wrong; being considered a medical mystery; having symptoms viewed in isolation; facing diagnostic roadblocks such as mental health misdiagnoses; and moral misattributions where they were treated as liars or attention-seekers.
These diagnostic delays have had profound impacts on patients' lives. Some experienced childhood isolation due to symptoms being dismissed as "teenage laziness," while others suffered organ damage requiring hospitalization or faced miscarriages and pregnancy complications without proper investigation into potential causes like Antiphospholipid Syndrome or Lupus.
Rupert Harwood from Swansea University Medical School emphasized the severe consequences of delayed diagnoses: “Our research highlights the devastating impact of diagnostic delay in lupus, including irreparable organ damage and poor quality of life.”
Dr Melanie Sloan from Cambridge University stressed the importance of timely diagnosis: “Timely diagnosis and treatment are critical to reducing long-term damage. The negative impacts of diagnostic delays are not just physical but also affect mental health and future medical relationships.”
The findings have been published in the medical journal Lupus.