Sleep Disturbances in Children with Cystic Fibrosis

Asking about someone’s sleep habits can help health care providers better understand a person’s mental health. According to Robyn Stremler, professor at the Lawrence Bloomberg Faculty of Nursing, asking about sleep can be a less stigmatizing way to inquire about a patient’s mental health, which can often lead to important discussions around stress, insomnia, and a range of issues that could be impacting a patient’s quality of life.

Stremler, who is also an adjunct scientist at SickKids hospital, is a sleep expert. Her research explores whether certain groups, such as infants, children in hospital, adolescent youth, and individuals who are postpartum, experience poor sleep. This key and often understudied perspective can help health care providers create targeted interventions to prevent poor mental health outcomes. In 2019, Stremler developed the SOmNI Sleep app, a mobile platform that aimed to help teens improve their sleep goals and overall health using wearable technology. Stremler’s objectives for focusing on sleep are many and include its profound correlation to a person’s mental health and wellbeing.

“There is considerable research showing that missing out on sleep increases your risk of developing anxiety or depressive symptoms,” says Stremler. “When we set out to understand sleep and sleep disturbances in certain populations, we are also looking at ways in which interventions might improve sleep to have a positive impact on a patient’s life.”

In an upcoming study Professor Stremler’s PhD student Jordana McMurray will be using actigraphy, a wearable device worn on the wrist to measure sleep, in adolescents and young adults with cystic fibrosis (CF). CF is the most common life-limiting genetic illness in Canadian youth and is caused by a mutation in the gene responsible for coding the cystic fibrosis transmembrane conductance regulator (CFTR) protein. Lack of this protein affects many systems

in the body but most significantly affects the lungs and gastrointestinal tract where loss of CFTR function results in the production of thick mucus secretions.

“Improving our understanding of what sleep is like for those with CF, and including reasons for sleep disturbance, will give us a better sense of whether early interventions to improve sleep are needed” says McMurray, whose background as an RN, is in pediatric respiratory medicine at SickKids Hospital.

In her clinical work, McMurray witnessed a stark contrast in the sleep patterns of her pediatric CF patients, compared to patients with other respiratory disorders. This difference spurred her to consider exploring sleep in CF patients as part of her doctoral work.

Early in her PhD, McMurray conducted a systematic review looking at actigraph or self or parent-reported sleep for children and youth with CF, and found evidence of objectively measured sleep disturbance and poor self or parent-reported sleep quality in this population. The review also found 13 factors associated with poor sleep, including an association with poor mental health.

Jordana McMurray with Camille Goncalves

Horst Herget Photography

The review also revealed limitations including the lack of comparative studies and poor quality of current studies, stressing the need for additional high-quality comparative studies to better understand sleep and factors affecting sleep disturbance in this population. McMurray’s review also recommended that associations between sleep and mental health be further explored because the prevalence of anxiety and depression is significantly higher in CF populations.

McMurray’s exploratory study will aim to better understand sleep and sleep disturbance in those with CF compared to a healthy control group and will also examine relationships between sleep disturbance and symptoms of anxiety and depression in adolescents and young adults with CF.

McMurray points out that “sleep and mental health are inextricably intertwined, and we do not often pay enough attention to this relationship.”

“Patients with CF are facing a life-limiting and serious illness, so their sleep is very often overlooked,” says Stremler. “However, Jordana’s research may provide evidence that earlier interventions in this group could help with their mental health and overall quality of life.”

To assess sleep and wakefulness, McMurray will use an actigraph device which contains an accelerometer and can determine how often the participant moves. A specialized computer program will then use an algorithm to assess minute by minute when sleep is taking place.

“One of the great benefits of using actigraphy, is that the device can be worn for longer periods of time, and we can

capture typical or usual sleep as it occurs daily compared to what might be assessed in a sleep lab,” says McMurray. In addition to this captured data, participants will also be provided with a number of self-reported questionnaires on sleep and symptoms of anxiety and depression. Interviews with CF participants will feature prominently to incorporate their voices and obtain a nuanced understanding of sleep in this population.

There is considerable research showing that missing out on sleep increases your risk of developing anxiety or depressive symptoms.”

Robyn Stremler Professor, Lawrence Bloomberg Faculty of Nursing

“From a research perspective, we have some good, established interventions that can improve sleep,” says Stremler, “therefore, if we see a relationship between poor sleep and higher rates of anxiety and depression for school aged youth, we can consider managing that concern earlier in order to ensure they have the best quality of life.”