Measuring Health-Related Quality of Life in Patients with Cystic Fibrosis
A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Healthcare Quality and Patient Safety".
Deadline for manuscript submissions: closed (1 August 2020) | Viewed by 134
Special Issue Editor
Interests: quality of life; PROMs; rare diseases; clinical quality registries; clinical trials; new drugs and treatments
Special Issues, Collections and Topics in MDPI journals
Special Issue Information
Dear Colleagues,
Cystic fibrosis has undergone significant changes in the last few decades. In the mid-1900s, the majority of cystic fibrosis patients did not survive beyond infancy. Now, over half of patients are adults and life expectancy exceeds 40 in most developed countries. The changing demographics of cystic fibrosis has led to new challenges in both disease management and clinical research. Treatment burden has increased, such that treatments currently require two to four hours a day. The growing adult population encounters more difficulties balancing the symptom and treatment burden of the disease with work, education, or family demands. Therefore, there is an increasing requirement to examine and manage the psychosocial impacts of cystic fibrosis. Another challenge is posed by the relative healthiness of the modern cystic fibrosis population resulting in traditional endpoints in clinical trials such as forced expiratory volume in one second (FEV1) and frequency of pulmonary exacerbations having reduced sensitivity. A possible solution to these challenges is to monitor and collect data on health-related quality of life (HRQoL) and patient-reported outcome measures (PROMs). This Special Issue features a wide range of research papers on improving HRQoL, mental health issues, and capturing PROMs in pediatric and adult patient populations with cystic fibrosis.
Dr. Ruseckaite Rasa
Guest Editor
Manuscript Submission Information
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Keywords
- cystic fibrosis
- survival
- mental health
- quality of life
- outcomes
- PROMs
