Second in a series. Read part one.
The poster sessions at the North American Cystic Fibrosis Conference (NACFC) in Denver last month included many interesting branches of the wonderful world of CF research. In this column, I’ll continue a series with short overviews of interesting posters from each topic.
This is not intended to be comprehensive, as reading more than 800 abstracts isn’t feasible. I also don’t pretend to be an expert on all of these topics, so I will briefly discuss the abstracts and why I think they’re relevant. To view a PDF of the abstracts, click here.
“Modeling Recurrent Events in the Context of Pulmonary Exacerbations in the Epic Cystic Fibrosis Study“
- This study hypothesized that “utilizing time to first pulmonary exacerbation or total number of pulmonary exacerbations” discounts the fact that these numbers can be misleading. Researchers argued that measuring the gaps between exacerbations is more effective because it more likely would demonstrate increased risk after previous exacerbations and “when the risks return to baseline level.” Based on their proposed statistical model, they found that their model was a better fit to data in the Early Pseudomonas Infection Control (EPIC) study.
- I think this study is important. People with CF like to find some semblance of normalcy between exacerbations. Over the course of the year, I’m not sure it’s the number of exacerbations that bothers us, but rather the amount of time of normalcy between each exacerbation.
Physical and respiratory therapy
“Self-Perceived Barriers to Physical Activity in Adults with Cystic Fibrosis“
- This study aimed to investigate if there is a connection between having CF and self-perceived barriers to habitual physical activity, which is recommended for all CF patients.
- Researchers wanted to investigate this due to the already known connection to the CF community’s struggles with medical care adherence.
- They concluded that the questionnaire “was feasible and effective in identifying self-perceived barriers to habitual physical activity in adults with CF and led to meaningful discussions to promote HPA.” Their results also suggested that “self-perceived barriers to HPA may contribute to deconditioning.” They recommended “interventional strategies targeting lack of energy and willpower,” and noted that “time management and social influence may increase HPA.”
- I don’t think that just believing in yourself is enough; I believe we need to have effective protocols to combat the many internal struggles that come with CF. But this study shows that self-perceived barriers are a huge issue. Generating conversation around these barriers probably is critical, in my humble opinion.
“Is Palliative Care Appropriate for Patients with CF Pursuing Lung Transplantation?“
- Lung transplants for CF are usually end-of-the-road options, and palliative care (PC) is usually used to make patients “as comfortable as possible.” This study group wanted to investigate if these two parts of late-stage CF illness are consistent.
- Researchers found that “there are varying opinions about the role and importance of PC for individuals with CF who are considering or who have had a lung transplant.” They noted that “further studies are needed to better understand how PC fits into lung transplant care for individuals with CF.” Also, they added that “clarification of what PC entails and dispelling myths about the goals of transplant and PC being in conflict can be addressed through PC education.”
Epidemiology and newborn screening
“Impact of Depression on Subsequent Pulmonary Exacerbations and Lung Function Decline“
- Mental health in the CF community is no joke (in this study’s background, researchers noted higher rates of depression and anxiety in the CF community, along with their caregivers), so it’s crucial that we understand the link between our mental health and pulmonary exacerbations (PEx). This group also noted that CF patients with depression had higher five-year mortality rates.
- Perhaps unsurprisingly, researchers found that “CF patients with a positive screen for depression are more likely to experience PEx on follow-up.” Interestingly, in their conclusion, they also noted that “the failure to find a significant effect in change in FEV1% predicted may be due to survivor bias (i.e., those who died with accelerated rate of decline were excluded from analysis).”
“A Survey to Better Understand the Barriers and Facilitators to Research Participation for Individuals with CF“
- The cog in the machine that keeps CF medicine improving is the participation of CF patients in research studies. The truth is that if we want to see CF medicine improve, we should be willing to participate in medical research. That said, we have to figure out why some patients are willing to participate in research studies, as there are several good reasons. This group wanted to figure out what barriers exist and what motivates patients.
- Using a survey, they found that most patients “do not actively seek information regarding research studies but if they are to receive information most would like to receive it via e-mail or directly from the CF physician or nurse.” They “are most interested in clinical trials that target the root cause for CF, infection, and inflammation.” Regarding barriers, patients cited “being too busy and living too far away.”
- The reality is this: We aren’t obligated to participate, so finding the ways to make us most motivated and the reasons we can be hesitant is crucial. Hopefully, this survey helps to better improve research participation.
Check back next week for more interesting discoveries.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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