To explore the emotional burden of a chronic neurological illness diagnosis on neurologists and patients.

This is a qualitative descriptive study of a cohort of patients with either Amyotrophic Lateral Sclerosis, Multiple Sclerosis, or Parkinson Disease, and a cohort of neurologists who treat patients with these diseases. Semi-structured interviews were used to examine participants’ experiences of delivering/receiving a diagnosis of a chronic neurological illness. Interviews were analyzed using constructivist grounded theory to identify emergent patterns and themes in the data.

Study interviews reveal four themes that help characterize the process of diagnosis delivery: 1) distinct and shared challenges exist for both patients and providers: 2) unique coping strategies emerge for patients and providers; 3) patient autonomy is a shared goal for patients and providers; 4) patients value comfort and ability to be candid with their providers while also actively empathizing with and humanizing their challenging roles. Consequently, further exploration of these themes, including ways to address existing challenges, would enhance both patient and provider experiences.

The experience of receiving and delivering a diagnosis of a chronic neurological illness carries a tremendous emotional burden on patients and their physicians as well as a slew of unique and shared challenges for both parties involved. Having adequate supportive services for both parties, additional training for physicians, and ample time during visits to acknowledge this shared burden has the potential to enhance patient outcomes and their quality of life and help inform strategies to better support patients and their families. Likewise, it may also help improve neurologists’ career satisfaction and reduce burnout.