Improving the Mental Health of Cystic Fibrosis Patients: An Analysis of an Understudied Issue

Abstract

This thesis addresses the questions, how are the mental health needs of cystic fibrosis (CF) patients being addressed now and how might those services be improved? CF patients are at high risk for anxiety and depression, which in turn are associated with worse health outcomes. This thesis hypothesizes that these problems are particularly serious in the United States because of the limitations of the insurance system and because relatively few mental health providers are familiar with the distinctive problems that CF patients face. Existing research shows a linkage between socioeconomic status and the mental health of CF patients in the United States. By comparing mental health services for CF patients in the Czech Republic, Italy, Sweden, and the U.S., this thesis shows that different healthcare systems and the varying levels of stigma affect the quality of care. Due to the role of private insurers, the U.S. healthcare system has been less hospitable to CF mental health care. The Affordable Care Act, however, has somewhat eased the financial burdens on CF patients and their families. With about $4 billion in assets, the Cystic Fibrosis Foundation (CFF) is in a unique position to improve health care for a specific patient group. Currently, it addresses the mental health issues of CF patients by placing mental health coordinators in care centers to implement its mental health guidelines and by providing financial assistance. But there is still room for improvement in the CFF’s handling of mental health issues. Therefore, this thesis offers a series of concrete recommendations to the CFF: 1) implementing mindfulness-based stress reduction and an mHealth intervention in order to give patients better access to preventative resources so they can be proactive in their mental health care; 2) assembling a fund specifically intended to rectify inadequate access to mental health care, especially for patients with limited financial resources; 3) producing a primer on CF for therapists in order to help them take a patient-centered approach in treating their CF patients; and 4) implementing online support groups through Zoom or another platform to enable CF patients to share their experiences.