Developed for use by CF Foundation-accredited care centers, the guidelines make recommendations in four areas: prevention,
"These guidelines demonstrate the commitment of the CF Foundation -- and the European Cystic Fibrosis Society -- to provide holistic care to people with CF and their families," said Bruce Marshall, M.D., senior vice president of clinical affairs at the CF Foundation and a member of the writing committee. "Depression and anxiety are common in CF, but the stigma associated with mental health issues makes people hesitant to talk about them. By making screening and treatment part of the model of care, we hope to address the stigma and improve the lives of people with CF and their families."
Among the recommendations, the guidelines advise care centers to offer voluntary annual screening for people with CF and their caregivers. If the screening suggests that a person may have depression or anxiety, it is recommended they be referred to a mental health professional for a formal assessment and receive treatment, if necessary.
The guidelines were informed by an international depression and anxiety epidemiological study (known as TIDES) that assessed symptoms of depression and anxiety in more than 6,000 patients and more than 4,000 parent caregivers in 45 care centers in the United States and eight European countries.
Studies have found that people with CF and parent caregivers have an increased risk for depression and anxiety, which can have negative effects on CF and overall health. For example, people with CF and depression and/or anxiety are less likely to perform their daily care plans. In addition, they are more likely to have lower
The guidelines were developed by a multidisciplinary committee, which included mental health experts, parents of children with CF and an adult with CF.
To facilitate implementation of the guidelines, the CF Foundation has established a mental health task force to support the addition of mental health coordinators at qualifying care centers. The task force will also collect best practices and disseminate them among all care centers.
“It will take time for care teams to integrate these guidelines into their practice. It is very important that centers have the resources in place for treatment and referrals before offering screening” said Paula Lomas, director of clinical communications at the CF Foundation.
The guidelines are available on the website of Thorax, an international journal of respiratory medicine, and include an implementation manual for care centers.