(From the November 2014 Issue of PediatricsOnline)
Cystic fibrosis (CF) is an inherited, life-threatening disease that affects the digestive system and the glands in the lungs that produce mucus. While life expectancy for CF patients has increased in recent decades, the disease requires significant daily care. Prior research has shown that adolescence is a particularly pivotal time in chronic disease since this age group is especially sensitive to how they are perceived. If adolescents ignore their disease, they are more likely to experience advancement of disease. Nationwide Children’s Hospital recently participated in a study examining the psychological aspects of living with cystic fibrosis. In this new study, researchers determined that optimism positively influenced patients’ desire to follow recommended care for CF.
Karen McCoy, MD, chief of Pulmonary Medicine and contributing author, says the study, which was published in the Journal of Cystic Fibrosis, sought to better understand how adolescents and young adults with CF cope with their disease. “Do they feel stigma? If so, does that correlate with anxiety and depression and objective health measures such as lung function and nutritional status?” Dr. McCoy asks. “Finally, does feeling optimistic, rather than pessimistic, influence or buffer the feeling of stigma? That is what we wanted to study.”
To answer these questions, 72 patients with CF (ages 14 to 25) at Nationwide Children’s and The Ohio State University Wexner Medical Center self-reported stigma (Fife and Wright), depression and anxiety (HADS), optimism (Life Orientation Test) and CF quality of life (CFQ-R). Objective health data were recorded from patient medical records.
Results demonstrated that high stigma scores correlated with lower pulmonary function and higher anxiety and depression scores. Stigma was lessened in those with high optimism scores. Reponses to the quality of life questionnaire showed that favorable scores were associated with lessened stigma in many areas of disease impact.
Optimism was associated with less anxiety but not depression and may be a protective factor in CF. “Lack of optimism may indicate that psychological support is warranted,” says Dr. McCoy. “Patients experiencing more stigma may be more likely to experience psychological distress and lower quality of life, particularly if they do not demonstrate optimism.”
Dr. McCoy believes that conversations between clinicians and patients about the physical differences caused by CF — such as coughing, taking pills at meal time and slow growth — will lessen feelings of stigma and allow physicians to evaluate other risks in patients with CF.
In the future, Dr. McCoy also sees the potential to determine whether altering the sense of stigma felt by young CF patients could impact health outcomes. “Our study identified a correlation between a sense of stigma and poorer lung function tests, but it couldn’t detect which came first – whether feeling stigmatized caused the poor health or the reverse,” she says. “It would be interesting to conduct interventions to lessen their feelings of stigma or repeat this study at a later point in time, following the impact of new therapies that may alleviate some of the physical alterations seen in CF.”
Oliver KN, Free ML, Bok C, McCoy KS, Lemanek KL, Emery CF. Stigma and optimism in adolescents and young adults with cystic fibrosis. Journal of Cystic Fibrosis. 2014 May 1. [Epub ahead of print]