BackgroundLight chain (AL) amyloidosis is a rare, complex disease associated with significant morbidity and mortality. Delays in diagnosis are common and may have detrimental consequences on patients’ prognosis. Too little is known regarding the patient journey to diagnosis.ObjectiveThe objective of this study was to describe the patient-reported journey to a correct diagnosis for AL amyloidosis.MethodsUsing a mixed-methods approach, data were collected from clinician (n = 4) and patient (n = 10) interviews and a survey of community-based patients with AL amyloidosis (n = 341). Data were used to document the patient experience between the onset of symptoms and the receipt of a diagnosis.ResultsDelays in diagnosis were common. Qualitative and quantitative data indicated that initial symptoms were varied and similar to other more prevalent diseases. Two themes regarding the journey to diagnosis emerged: (1) barriers to an early diagnosis; and (2) the emotional toll of the journey. Time to diagnosis was heavily influenced by how patients interpreted their initial symptoms, whether they sought early medical help, and challenges associated with making differential diagnoses. Survey results indicate that patients with primary cardiac involvement were more likely to receive a delayed diagnosis than those with primary kidney involvement. Patients described mixed emotions associated with the eventual diagnosis of AL amyloidosis.ConclusionsThese data support a need for better early identification and support for patients seeking a diagnosis. Increasing clinician awareness may reduce the time to diagnosis. Additional research is needed to identify optimal diagnostic testing to reduce delays in treatment initiation and subsequent severe impacts on health.

A national, branded, mass media smoking cessation campaign can change smokers' cognitions about quitting and increase quit attempts. We strongly recommend that federal and state governments provide funding for media campaigns to increase smoking cessation, particularly for campaigns that have been shown to impact quit attempts and abstinence.

Non-college-educated young adults smoke at more than twice the rate of their college-educated counterparts. Targeted prevention and cessation efforts are needed for non-college-educated young adults to prevent excess morbidity and mortality in later years.