Communicating a Diagnosis of Cystic Fibrosis to an Adult: What Physicians Need to Know

Abstract

Ten percent of cystic fibrosis (CF) diagnoses are confirmed in adults. No disease-specific research is available to guide nonpediatricians in communicating these diagnoses or to determine whether prevalent bad-news guidelines apply. In this phenomenological study, the author asked 36 individuals to describe their adult-diagnosis experiences, reactions, and preferences. Data analysis revealed that most respondents were satisfied with their diagnosis interviews. Participants described different physician styles in delivering the diagnosis and a range of reactions on learning that they had CF. They urged that physicians appreciate the impact of a CF diagnosis on adults, assess the personal characteristics that could affect individuals' responses, and develop relevant patient-education techniques. Interactions of disease characteristics with individuals' personal situations appeared to be more important than physicians' approaches in determining how participants experienced and responded to the diagnosis. That no typical interview emerged rendered a one-fits-all guideline unrealistic for communicating CF diagnoses to adults.

Index Terms:

• adult diagnosis
• bad news
• chronic disease
• cystic fibrosis
• diagnosis
• late diagnosis

Additional information

Notes on contributors

Eileen Widerman

Dr Widerman is an assistant professor in the School of Social Administration, Temple University, Philadelphia, Pennsylvania.