Gradual Onset Diseases: Misperception of Disease Onset

Gradual onset diseases (eg, carpal tunnel syndrome, cubital tunnel syndrome, and trapeziometacarpal arthrosis) tend to go unnoticed for years. When a slowly progressive disease transitions from asymptomatic to symptomatic, it may seem like an acute event. The primary aim of this study was to determine the percentage of patients who perceive the slowly progressive disease as having started within 1 year. We also hypothesized that (1) there would be no factors associated with perception of an onset of disease within 1 year, more specifically among patients with advanced disease; and (2) there would be no difference in a decision to pursue operative treatment between patients who perceived the onset of the disease to be recent and those who perceived it to be long-standing.

In this retrospective study, we reviewed the medical records of 732 patients newly diagnosed with carpal tunnel syndrome (n = 114), cubital tunnel syndrome (n = 276), or trapeziometacarpal arthrosis (n = 342), for the onset of symptoms. Multiple factors were assessed for (1) association with perception of disease onset within 1 year, and (2) choice for operative treatment in bivariate and multivariable analyses.

A total of 69% of all subjects and 68% of patients with advanced disease perceived the disease as having started within 1 year. A perceived provocation (such as an injury or surgery) was associated with a perception of recent onset. A decision to pursue operative treatment was not different between the 2 groups.

Slowly progressive diseases are often misperceived as relatively new.

Effective communication strategies are important to ensure that people make choices consistent with their values and not based on misconceptions.