Alberta Pituitary Patient Society (APPS)

Pituitary Disorders & Patient Care

 
As with most rare diseases, the approach to supporting pituitary patients is fragmented across the country and health-care system.  The result is that patients with a pituitary disorder may face extraordinary challenges that include difficulty getting a diagnosis, misdiagnosis, difficult treatment regimes, co-morbid conditions, social isolation, financial hardship, lack of treatment options, and early death. These are the same challenges can be faced by Canadians with “non-rare” conditions, but the impact is often much more severe for pituitary patients who experience complex chronic health issues. We know that it sometimes takes years to get a proper diagnosis. In most cases, the patient has never heard of these disorders. In too many cases, neither have their doctors.


According to the Public Health Agency of Canada, 60% of adults and 88% of seniors are not health literate. This means many patients and caregivers cannot confidently and knowledgeably access, understand, evaluate, and communicate information related to their health or the health of their loved ones. These are the same challenges faced by Canadians without rare conditions, but the impact is often much more severe for pituitary patients who experience complex chronic health issues.

Similarly, many physicians unfamiliar with pituitary disorders risk making an incorrect diagnosis.  A 2004 study found that 40% of individuals with a rare disease were initially misdiagnosed. For many of these patients, their misdiagnosis led to inappropriate medical interventions including surgery, medication, and psychological treatment. In addition to the delay in diagnosis:

  • 25% of people reported waiting between 5 and 30 years from the time of first symptoms to a confirmed diagnosis of their disease


  • 25% of people had to travel to a different region to obtain a diagnosis and 2% had to travel to a different country


  • In 33% of cases, the diagnosis was announced in unsatisfactory terms or conditions. In 12.5% of cases, it was announced in unacceptable ones.


  • The genetic nature of the disease was not communicated to the patient or family in 25% of cases (despite most rare diseases having a genetic component).