Catastrophizing and Cystic Fibrosis: Fear of Breathlessness Impacts Quality of Life

By Carisa D. Brewster

A new study has found an association between the cognitive process of breathlessness catastrophizing (BC) and poor health-related quality of life (HRQoL) in patients with cystic fibrosis.

Breathlessness is common in patients with cystic fibrosis and does impact HRQoL, even when pulmonary function is in normal ranges. Catastrophizing is a cognitive distortion where irrational thought patterns dominate, and the worst outcome is expected regarding a real or anticipated issue.

Advances in treatment have increased life expectancy for people with cystic fibrosis, but there remains a need to better examine and understand the psychological issues related to quality of life, according to researchers of this study.

“Following in the footsteps of other researchers who have begun to examine breathlessness catastrophizing in respiratory populations, such as those with COPD, we were curious to examine breathlessness catastrophizing among adults living with cystic fibrosis and how it relates to quality of life,” Danijela Maras, MA, lead researcher and doctoral student in clinical psychology at the University of Ottawa, told MD Magazine®.

Participants were recruited from a small observational cohort within the pilot project, “The Ottawa Cystic Fibrosis Treatment Knowledge and Adherence Program”, from May 2011 to June 2013. Patients were excluded if they had received a lung transplant or had an expected survival of less than one year. Final sample size was 45 adults.

The following was assessed for all participants: lung function (FEV1%), depression (Center for Epidemiological Studies Depression Scale), anxiety (7-item Generalized Anxiety Disorder scale), pain (Cystic Fibrosis Symptom Scale, developed by researchers this for study), BC (Breathlessness Catastrophizing Scale, adapted from the Pain Catastrophizing Scale), and HRQoL (Cystic Fibrosis Quality of Life questionnaire).

After controlling for lung function, depression, anxiety, and pain, there was a significant correlation between breathlessness catastrophizing and poor HRQoL (P <.05). In addition, 40% had clinical depression and 13.3% had moderate levels of anxiety.

While results are preliminary and warrant further exploration, Maras said this highlights the importance of assessing and treating mental health difficulties in individuals with cystic fibrosis.

“For example, breathlessness catastrophizing could be targeted in psychological interventions to improve mental health, quality of life, and/or treatment,” she said. “Findings are also relevant for other populations that experience breathlessness, such as those with asthma and other respiratory diseases, neuromuscular conditions, and cancer.”

Maras said that further research should center on longitudinal designs to examine breathlessness catastrophizing in larger and more diverse populations and explore how it plays a role in treatment uptake and adherence.

The study, “Breathlessness catastrophizing relates to poorer quality of life in adults with cystic fibrosis”, was published in the Journal of Cystic Fibrosis.

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Pushing Through the Fear – Guest Blog By Andrea Eisenman

By Andrea Eisenman

So many fears, where do I begin. Let’s start with my impending trip to Seattle from NYC. I like to travel but it gets complicated. How much room in my suitcase do I have to pack my myriad of machines and meds? And how much will I forget, despite my thorough list? I learned I had to put obvious things on my list like a hairbrush after I forgot that a few times. But when it is easily purchased at a drug store, no biggy. When it is my immune suppressants or a nebulizer, that is harder to replace.

I now have a lot more machinery to tote around when I leave home. I have my CPAP, my percussor and my inhalation machine and a facial steamer for my sinuses, plus my Neti pot for nasal lavage. These things become cumbersome and traveling light is not an option, I have to check my bag. So, planning is key for several days prior to take off. I am in that phase now. Packing it all. I bring enough meds for twice my travel time. My last trip to Seattle happened during 9/11. I could not fly home for a week. Luckily, I had an extra 10 days of medications to cover me.

My dad asked if I was up to the flight, it is a longer one than I have taken in many years. My answer is, I don’t know. I am fearful as I know I have lymphedema and even though I wear compression tights when I fly, it is less than comfy and I will swell in my upper body. I do have a compression machine for upper body swelling but it is way too big to bring. Will I be ok not using it for a few days? I am hoping the answer is yes. But because I do not know these things for certain, I have anxiety. And I worry I might get sick either from the flight or anytime during my trip. I do wear a mask in flight and try to stay as hydrated as possible in order to keep well. And of course, I will wipe down the area near my seat with cleaning wipes.

But in order to live a life, I have to take some risks. I had wanted to go to Seattle for a few years. It is therapeutic to get away once in a while and I had not traveled too far from home while my mom was alive. I wanted to be near enough if she needed me. I no longer have that worry. And maybe I used that as an excuse so I am now pushing myself to go on this trip. I know I can be resourceful and my doctors are only a phone call away if I get sick. There is a great CF center there and my friend is sensitive to my CF needs. When we were in college together she gave my CPT when I let her.

I find that when I push myself beyond my fears, I feel triumphant and am happy that I conquered them. Sometimes one has to get out of their comfort zone, even if it means wearing horribly tight pantyhose for six hours on a flight! I know it will be worth it and I can bond with my friend. I will feel like I accomplished something worthwhile. Maybe my next trip will be to Europe.

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

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