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Hemoptysis from the perspective of people with cystic fibrosis
Christina M Romàn1, Holly C Loughlin1, Enid Aliaj1
1Cystic Fibrosis Foundation, Bethesda, Maryland.
Insights
Experiencing hemoptysis, or coughing up blood, is frightening for adults with cystic fibrosis (CF). Addressing patient anxiety and improving communication can enhance CF care and coping strategies.
Area of Science:
- Pulmonary Medicine
- Patient-Reported Outcomes
- Cystic Fibrosis Research
Background:
- Increasing lifespans in cystic fibrosis (CF) lead to more age-related complications like hemoptysis.
- Current CF hemoptysis guidelines focus on clinical management, not patient experiences.
- Patient-centered care is crucial for managing chronic conditions.
Purpose of the Study:
- To explore the lived experiences of hemoptysis in adults with CF.
- To understand the psychological impact and coping mechanisms related to hemoptysis.
- To inform patient-centered approaches to CF care.
Main Methods:
- An 11-question survey was administered to adults with CF.
- Respondents with hemoptysis answered open-ended questions about their experiences.
- Qualitative data focused on initial episodes, impact on CF management, and out-of-home coping.
Main Results:
- A 23% response rate (31/132) was achieved from the survey.
- 63% of respondents reported experiencing hemoptysis.
- 77% described their first hemoptysis episode as 'scary' or 'frightening'; 50% reported negative impacts on quality of life due to anxiety and fear.
Conclusions:
- Patients benefit from strategies to cope with hemoptysis episodes and associated anxiety.
- Enhanced physician-patient communication and sensitivity to patient experience can improve care.
- Addressing the psychological impact of hemoptysis is key to comprehensive CF management.
Introduction:
People with cystic fibrosis (CF) are living longer, thus complications associated with age, such as hemoptysis, are increasing. The Institute of Medicine has emphasized the importance of patient-centeredness. Although guidelines about hemoptysis in people with CF are available, these focus on management of the complication and not the patient perspective.
Objective:
We sought to understand hemoptysis from the point of view of those who have experienced it.
Methods:
We fielded an 11-question survey to adults with CF and asked those who had hemoptysis to respond. Four questions had open-ended options: (1) the person's first experience with hemoptysis, (2) how that experience affected the way they approach their CF, (3) how they deal with hemoptysis when it occurs outside the home and (4) a free text box for general comments.
Results:
Thirty-one of 132 adults with CF who were sent a survey completed it (23% response rate); 63% F), indicated that they had experienced hemoptysis and described their triggers. In response to open questioning, 77% of respondents found their first experience with hemoptysis to be 'scary,' 'frightening,' 'worrying' or 'jarring.' Half of respondents reported quality of life being negatively affected by worsening stress or anxiety, fear of bleeding in public or other life impacts.
Conclusions:
Focusing on how to cope with future episodes of hemoptysis and the associated anxiety can be helpful to patients. Proactive communication and sensitivity to patient experience may deepen physician-patient rapport, increase self-efficacy to cope with future episodes and lead to more comprehensive care of hemoptysis.
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