A recent study revealed that many patients with cystic fibrosis (CF), as well as parents, are not aware of what the palliative care encompasses, and how it could be helpful to people with CF and their families.
CF care providers, for this reason, need to be trained in discussing the topic of palliative care with patients and families — identifying needs, as well as improving both knowledge of, and access to, such care, researchers said.
The study, “Assessing Knowledge and Perceptions of Palliative Care Among Patients, Caregivers, and CF Care Providers,” was presented today as part of the session “Supporting Patients With Advanced Disease” at the 30th Annual North American Cystic Fibrosis Conference, in Orlando, Florida. The conference ends on Saturday.
Palliative care is specialized medical care for people with serious diseases, at any stage of the illness. The idea is to provide an extra layer of support, giving symptom relief, and lowering the stress of a serious condition. The goal of such care is to improve the quality of life for both the patient and her or his family.
Although CF can be a severe condition that reduces life expectancy among patients, there is no consensus among patients or healthcare professionals about how to incorporate the principles of palliative care into CF management.
Elisabeth Dellon, MD, with the University of North Carolina at Chapel Hill, and her research team decided to evaluate the knowledge and perceptions of palliative care among adults with CF, parents of adolescents with CF, and CF care providers.
In addition, the study aimed to investigate what patients and parents thought about the idea of incorporating palliative care into CF care, and to gather recommendations for education on the topic.
Researchers interviewed 10 adult CF patients, 10 parents of adolescent CF patients, and eight healthcare providers: five physicians and three nurses, half of whom are pediatric providers.
Five patients and three parents had never heard of palliative care before the study. Among those participants who were familiar with the term, a majority in all groups associated the concept with end-of-life care, hospice, and relief from suffering.
At this stage of the study, both patients and parents thought that palliative care could be helpful in planning for the future, providing emotional support, and aiding communication between patients and care providers.
Once participants heard a definition of palliative care, half of the patients and 80 percent of parents felt that it could be helpful to people with CF. Also, among the healthcare staff, half said they could imagine referring a patient to palliative care, but thought its association with end-of-life could be a barrier in proposing such care.
Study participants recommended that education on the topic should involve a member of the CF care staff, who introduces the concept before sharing any written material.
“Despite the high burden of symptoms, disease-related care, and limited life expectancy in CF, many patients and parents are unfamiliar with palliative care and how it could be helpful to people with CF and their families,” researchers concluded in their NACFC abstract. “Educating CF providers about palliative care would allow them to initiate conversations with patients and families that would help identify needs and improve knowledge of and access to palliative care. This has the potential to improve patient and family-centered outcomes.”
The research team has developed a standardized education program about palliative care, specific to CF, which it is now testing.