IMG 8602How many times have you felt miserable during a class or at work because of a stuffy nose, constant sneezing and coughing caused by a common cold? How many times have you been looked at in a weird manner by people around you while you were coughing persistently? Probably not a lot, right? It would definitely not be more than what those with cystic fibrosis (CF) face every day.

With advancements in science, the life expectancy of people with CF has increased, and most patients live well into adulthood. While research has focused on prolonging the lives of patients with CF, there is not enough on their quality of life. As human beings, we all have a quality of life that is influenced by social, emotional, physical and external factors. According to Leigh Ann Bray, a doctoral student in the UAB School of Nursing, both male and female patients with CF have distinct perspectives about certain factors that affect their quality of life. Females with CF particularly reported a much poorer overall quality of life than their male counterparts.

Bray, a 28-year old native of North Alabama, studies people with CF to analyze the facilitators and barriers to their quality of life. She worked as a nurse in both the Pulmonary Care Unit and the Cardiovascular Intensive Care Unit at Children’s of Alabama. Through seeing her patients’ struggles and forming a bond with them, Bray became determined to work on improving their lives.

More than 30,000 people in the United States live with this genetically transmitted chronic illness and, unfortunately, females are 50 percent more likely to die prior to age 20 years when compared to males.

What CF does to your body

CF affects the thickness of mucus throughout the body. Normally, these fluids are very thin and free flowing to keep systems in our body running smoothly. For those with CF, they become thick and glue-like, thereby blocking the tubes and ducts throughout the body. The thick, sticky mucus affects the lungs, gastrointestinal tract and reproductive tract.

One of the main struggles that people with CF face is difficulty breathing. Bacteria trapped in the mucus in the lungs leads to an infection, and the natural attempt of the body to fight the infection results in more mucus build up. This leads to a swollen and mucus-filled airway, thus clogging it and making breathing difficult.

CF also affects the pancreas, liver, intestines, etc., thereby making a patient's day-to-day bodily functions a warfare. Mucus build-up in the pancreas stops the digestive enzymes from reaching the intestine, thus inhibiting proper absorption of nutrients.

Bray’s research

Out of all the different areas of CF, Bray chose the gender differences in health-related quality of life of those with cystic fibrosis. Males with CF had a completely different perception of their quality of life and health than females.

IMG 8607“I wanted to find out what the common gender-specific barriers and facilitators are to their quality of life,” she said.

A survey was administered to 123 adults who have CF to quantitatively analyze the gender differences in their quality of life. Qualitative interviews then built upon the surveys by asking multiple open-ended questions to study the differential factors in depth and get the big picture.

Her study focuses on adults 19 years and older and investigates the social, emotional, physical and external factors in quality of life of people who have CF.

Gender differences in quality of life

Women with CF reported poorer quality of life than men with CF. From her interviews, Bray listed various Health-Related Quality of Life (HRQOL) domains as reported by the participants. HRQOL is an individual's perceived physical and mental health over time.

“Males reported a poorer HRQOL in only three domains, whereas, females reported a poorer HRQOL in nine domains,” Bray said.

Bray did detailed research to find out the reasons for such drastic gender differences in quality of life.

Long-term goal

Bray is so compassionate toward people who have CF that she would go to any extent to keep them happy and make their lives better. Having experience in taking care of pediatric patients, she is aware of the drastic differences in quality of life that CF patients undergo during adolescence. She has seen them miss out on the simple pleasures of life.

“A 17-year old patient who was admitted for a two-week stay in the hospital for antibiotics was so depressed that she had to miss prom dress shopping with her friends because of the hospital admission,” Bray said. “I want to help patients like her more than just taking care of them during treatment.”

Even while she was a nurse, she helped patients understand their medical conditions by showing them medical literature and explaining it to them from a research perspective. Such is her dedication toward her patients and research, that she wants to impact the lives of patients with CF through her research.

Now that she has a better understanding of the gender differences in quality of life of adult CF patients, her long-term goal is to contribute to interventions in some way to help improve the gender gap and make the quality of life of males and females equal. Eventually, with her results, Bray wants to help people who have CF have a better quality of life.