For many people living with an undiagnosed medical condition, the journey to an official diagnosis can be a long and painful road. Most rare disease patients face a five-year struggle of visiting multiple physicians before receiving a diagnosis, and almost half never get one. Having a patient-first mindset helps ease this process and encourages patients to keep pushing forward.
While finding a diagnosis can be frustrating, Optime Care offers a level of care coordination to hasten the diagnostic process and delivers the “human touch” that has gone missing in today’s technological age.
Approximately, 28% of rare disease patients said it took seven or more years to get an accurate diagnosis, and 38% said they received a misdiagnosis during the diagnostic journey.
Despite scientific advancements and increased information sharing, particularly through online resources in recent years, the challenges to timely and accurate diagnosis persist. According to the 2019 survey, 50% of patients and caregivers attributed diagnostic delays to a lack of disease awareness, and 42% believed that delays were caused by limited medical specialization.
One challenge is that physicians often fail to make the connection between symptoms, particularly across different organ systems. Also, the wait time to see specialists is protracted, patients require frequent testing and many rare disease symptoms mimic those of other, more common conditions. This adds complexity to the pathway to accurate diagnosis.
For many, diagnostic delays can have devastating effects. Therefore, it’s become an imperative to increase greater awareness among health care professionals of rare diseases and how more coordinated care can improve the rate of diagnosing them.
An accurate diagnosis is the first step in managing a rare disease appropriately and identifying specific resources and interventions for the best possible clinical outcome for patients.
Post-diagnosis, our specialty pharmacists play a significant role for patients and caregivers by providing an elevated level of customized care, helping caregivers optimize medication adherence, manage side effects and ensure that the patient feels heard to achieve the best possible quality of life and outcome.
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