People with cystic fibrosis (CF), like their healthy counterparts, often neglect sleep. But that can lead to problems down the road, warned three CF experts at the 2019 North American Cystic Fibrosis Conference in Nashville.
More than half of all CF patients have sleep complaints, said pulmonologist Eliot Katz, MD, of Boston Children’s Hospital. These range from awakening frequently to coughing and snoring at night, as well as excessive daytime sleepiness and pain.
Katz spoke at a recent panel discussion on “sleep hygiene,” a term coined in 1977 by the late psychologist Peter Hauri in the context of recommendations for insomnia. Pediatric psychologist Christopher Drescher, PhD, of Augusta University in Georgia and pulmonologist R. Bradley Troxler, MD, of the University of Alabama Children’s Hospital in Birmingham also spoke at the session, which, perhaps fittingly, began at 7:30 on a Saturday morning.
“Kids with CF sleep less, but that doesn’t mean they spend less time in bed,” Katz said. “They just have decreased sleep efficiency. Today, most patients with CF who have sleep disorders do not seek medical attention for it — and the few who do seek advice from pediatric pulmonologists, who may not be aware how to treat sleep disturbances.”
Among things that keep CF children awake at night are: chronic cough, musculoskeletal pain, enteral feeds, medications, mood disorders, excessive gas, and gastroesophageal reflux disease (GERD). Children are particularly prone to nocturnal light exposure, as well as excessive screen time on TV or smartphones.
Almost 40% of CF patients surveyed for a recent Australian study, Katz said, had their TVs on at bedtime, while 15% used their phones in bed, and 30% had no set bedtime at all.
“When you have decreased sleep efficiency, it’s associated with moodiness and poor quality of life,” Katz said. “This may affect a lot of things, including insulin resistance and adherence to medication.”
Coughing at night
Nocturnal coughing is rare in healthy kids. But those with stable CF and an average forced expiratory volume in one second (FEV1) of 72% cough 0.6 to 0.9 times per hour, Katz said.
Things get “a lot worse” during CF exacerbations, he said, with the average CF adolescent coughing 18.2 times an hour in the daytime and 5.8 times an hour at night, according to one study of children with a median age of 13.
Sleep problems in CF patients can lead to sleep problems for caregivers, and this can translate into anxiety and depression, Katz said.
“Parents are putting their health and well-being at risk,” he said, noting that 60% to 80% of caregivers themselves report sleep disturbances.
Asked if cannabinoid medications — those derived from marijuana — could benefit CF patients who don’t sleep well, Katz said there simply isn’t enough data.
“Probably half of our patients have experimented with CBD [cannabidiol] products,” he said. “Anecdotally, many patients say it does improve their appetite.”
One of the main problems, said Alabama pulmonologist Troxler, is that not enough is known about sleep in general.
“Sleep accounts for 25% to 35% of our time. It is universal. But the impact of poor sleep is diverse and significant, and there’s limited education of professionals about sleep,” he said. “Doctors doing their pediatric residency have, on average, only one hour of professional education about sleep.”
“Sleep is the primary activity of the brain in the first few months of life,” Troxler said. “We do know that if you don’t sleep, you tend to do very poorly at both learning and growing.”
Tips for sleeping better
How much sleep we need varies widely, from 14 hours a day for infants under 11 months old to eight hours a day for adults.
“Many of our patients cough at night or they’re in pain, which keeps them awake, but there’s been no significant, comprehensive sleep research when it comes to CF,” Troxler said. “Clearly, as a society, we don’t get the amount of sleep we need.”
Augusta University’s Drescher offered the following guidelines for CF patients with sleep issues:
- Set up the environment to be conducive to sleep. For example, sleep in a room that is dark, cool, and quiet.
- Light exposure should be decreased leading up to bedtime. This includes limiting screen time.
- Keep pets out of the bed, and out of the bedroom altogether if they wake you up.
- Avoid eating a large meal before bedtime, and avoid nicotine or caffeine after lunch, as well as excessive alcohol consumption.
- Try to avoid evening exercise, though daytime exercise is good.
- Stick to a routine. Always wake up at the same time, even on weekends.
- Have a nighttime routine leading up to sleep, and be consistent about it.
- Use the bed only for sleep (or sex in adult patients). Don’t do other things in bed.
However, “sleep hygiene is not a panacea,” Drescher said. “It does not address coughing, sleep apnea, or other physical causes, or all behavioral concerns related to poor sleep.”
Cognitive behavioral therapy — a psychotherapy treatment approach to problem-solving, with the goal of changing patterns of thinking or behavior that are behind people’s struggles — is more effective than sleep hygiene education alone, Drescher said. “It’s a structured program that helps a patient identify and change thoughts and behaviors that cause or worsen sleep problems, and adapt habits that promote sound sleep,” he said.