Sleep-wake disturbances in adolescents with spina bifida: Prevalence and associations with bio-neuropsychosocial functioning

The goal of this project is to examine sleep-wake disturbances as possible behavioral factors associated with bio-neuropsychosocial functioning in adolescents with spina bifida.

By Caitlin Murray, MA

Background and Significance

In the past decade, research has increasingly recognized the adverse effects of disturbed sleep on adolescent bio-neuropsychosocial functioning. Specifically, poor nighttime sleep may impact key health parameters, such as mood, pain and neurocognitive performance (Alfano, Zakem, Costa, Taylor, & Weems, 2009; Kheriandish & Gozal, 2006). Research also indicates a bidirectional relationship between sleep and bio-neuropsychosocial functioning; sleep may contribute to poor daytime functioning (e.g., pain, mood disturbance), which, in turn, may exacerbate sleep disruptions (Dahl & Lewin, 2002; Valrie, Bromberg, Palermo, & Schanberg, 2013). Sleep-wake disturbances such as difficulties falling asleep, frequent nighttime awakenings and daytime fatigue are especially prevalent in youth with chronic illnesses and medical conditions (Hysing, Sivertsen, Stormark, Elgen, & Lundervold, 2009), and evidence suggests that adolescents with spina bifida (SB) are at risk for sleep difficulties (Quine, 1991). Adolescents with SB are also at risk for poor physical, psychosocial and neurocognitive functioning (e.g., pain, depression, attention deficits; Appleton, 1997; Clancy, McGrath, & Oddson, 2005; Holmbeck et al., 2003; Rose & Holmbeck, 2007). However, few studies have comprehensively assessed the relationship between sleep-wake disturbances and key bio-neuropsychosocial outcomes in adolescents with SB. The primary goal of this project is to examine sleep-wake disturbances as possible behavioral factors associated with bio-neuropsychosocial functioning in adolescents with SB.

Specifically, the aims of this study are to (a) examine sleep-wake patterns in adolescents with SB using subjective and objective measures of sleep, (b) identify daily temporal associations between sleep and pain as well as sleep and mood and (c) identify the relationship between sleep-wake disturbances and bio-neuropsychosocial functioning in adolescents with SB. It is expected that adolescents with SB will indicate greater sleep-wake disturbances compared to typically developing youth, and that bidirectional sleep-pain and sleep-mood relationships will emerge, such that poor nighttime sleep will exacerbate pain and depressed mood and vice versa. It is also expected that sleep will be associated with physical, psychosocial, and neurocognitive concerns in this at-risk population. Increasing the understanding of the relationship between sleep disturbances and bio-neuropsychosocial functioning in adolescents with SB will inform the development of interventions to improve outcomes in this population

Design Overview

This project will include 80 adolescents and their parents, ages 12-17: adolescents with SB (N = 40) and a matched comparison group of typically developing (TD) peers (N = 40). The sample of adolescents with SB will be recruited from a pool of adolescents participating in a longitudinal study led by Grayson Holmbeck, PhD. The TD sample of adolescents was recruited as part of Tonya Palermo, PhD’s longitudinal case-control study on adolescents with chronic pain (Palermo, Toliver-Sokol, Fonavera, & Koh, 2007). A subjective and objective sleep assessment will be conducted; ambulatory actigraphic recordings will be completed over 10 days, and adolescents will complete several sleep questionnaires (e.g., sleep quality, pre-sleep arousal) and a daily sleep diary. In addition, adolescents and parents will complete questionnaires to assess physical (i.e., pain, height/weight), psychosocial (i.e., internalizing symptoms, health-related quality of life, family functioning) and neurocognitive (i.e., attention, executive function, academics) functioning.

Clinical/Research Implications

Despite emerging evidence of the prevalence and impact of sleep disturbances in pediatric populations, studies that assess sleep in youth with SB are scarce.

Sleep represents an important modifiable behavioral domain for diagnosis and intervention, and several researchers have advocated for behavioral sleep interventions to improve youths’ functioning (e.g., mood and attention symptoms; Dahl & Harvey, 2007; Gordon, King, Gullone, Muris, & Ollendick, 2007; Mindell, Kuhn, Lewin, Meltzer, & Sadeh, 2006). Interventions in childhood and adolescence are particularly important because there is a growing literature indicating that sleep problems predict the development of emotional and cognitive disturbances across the lifespan (Gregory, Caspi, Eley, Moffitt, & O’Connor, 2005; Gregory & O’Connor, 2002; Johnson, Chilcoat, & Breslau, 2000). The current study will be the first step in the development of preventative treatments designed to improve overall health and well-being in adolescents with SB.


Caitlin Murray recently received a Ruth L. Kirschstein National Research Award Service (NRSA) for individual predoctoral fellows for this dissertation project ( F31HD079270-01A1) . Grayson Holmbeck, PhD’s longitudinal study is supported by grants from the National Institute of Child Health and Human Development (R01 HD048629) and the March of Dimes Birth Defects Foundation (12-FY13-271).


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