Overcoming therapeutic nihilism. Breaking bad news of amyotrophic lateral sclerosis-a patient-centred perspective in rare diseases.

ABSTRACT: Amyotrophic lateral sclerosis (ALS) is a rare, incurable, and fatal neurodegenerative disease with median survival time from onset to death ranging from 20 to 48 months. Breaking bad news about ALS diagnosis is a challenging task for physicians and a life-changing experience for patients. Several protocols for delivering difficult information are available, including SPIKES and EMPATHY. Our goal was to assess to what extent these guidelines are followed in Polish ALS patients' experience as well as to identify any other patients' preferences not addressed by the guidelines. Participants of our study were recruited via a neurology clinic. Twenty-four patients with confirmed ALS diagnosis were interviewed using in-depth interview and a self-constructed questionnaire: 9 females, 15 males in a

SUBMITTER: Maksymowicz S 

PROVIDER: S-EPMC9213364 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature