Abstract
Background
Examination of sleep in pediatric cardiology patients has typically relied on self-reports with unknown reliability to objective assessments. Wearable technologies provide an objective data source for evaluating sleep. Improved understanding and treatment of sleep in pediatric heart patients may be an untapped aspect that could improve health-related quality of life.
Objectives
The purpose of this study was to identify patterns of duration and quality of sleep in pediatric cardiology patients using both subjective and objective assessment.
Methods
Patients were recruited in a pediatric cardiology clinic and completed a set of sleep and quality of life questionnaires, including the Pittsburg Sleep Quality Index (PSQI), the Pediatric Cardiac Quality of Life Inventory (PCQLI), and the Cardiac Anxiety Questionnaire (CAQ). Patients also agreed to wear an actigraphy watch for 7 days, and caregivers were also recruited as proxy raters.
Results
The sample included 31 patients with a mean age of 15.58 (SD = 1.89). Patients self-reported an average sleep duration of 7.61 h (SD = 1.67, range = 3–11). In contrast, objective sleep data indicated that patients obtained an average of 5.98 h of sleep nightly (SD = 1.01, range = 3.23–7.46) with a sleep efficiency score of 73.2 (SD = 6.23) and a sleep latency period of 21.04 min (SD = 19.16, range = 1–63). Parent-reported sleep duration on the PSQI had a mean of 8.10 h (SD = 1.34, range = 6–11). Thirty four percent of patients met PSQI cut off score for poor sleep based on self-report and 30 % based on parental-report.
Conclusions
Pediatric cardiac patients report better sleep duration than objective assessments. These data suggest that sleep complaints from pediatric cardiac patients may benefit from objective assessment and may need enhanced clinical attention since complaints may overestimate the duration of sleep.
Highlights
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Objective and subjective indices of sleep may provide different vantage points on the sleep experience in pediatric cardiology patients.
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Patients self-reported an average sleep duration of 7.61 hours), but objective sleep data indicated an average of 5.98 hours of sleep nightly.
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34% of patients met PSQI cut off score for poor sleep based on self-report and 30% based on parental report.
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Pediatric cardiac patients report better sleep duration than objective assessments indicate and clinics may benefit from objective assessment of sleep.
1
Background/introduction
The National Sleep Foundation recommends that school aged children and adolescents should obtain 8–11 h of sleep per night for optimal rest [ ]. However, survey research indicates that only one-third of healthy adolescents achieve the recommended amount of sleep (e.g., 8 h [ , ]). For pediatric cardiology patients, sufficient sleep and sleep quality likely play equally important roles related to daily functioning and quality of life. However, very little research examining sleep with pediatric cardiology patients exists, and only limited inferences can be drawn. For example, pediatric ICD patients self-reported more sleep difficulties compared to normative data [ ]. In addition, research with pediatric surgical patients with Fontan procedures found that 12 % experienced sleep concerns related to sleep quality or behavioral sleep concerns (e.g., bedwetting, initiating sleep; [ ]). Objective assessment of sleep, with the use of wearable technologies, has highlighted significant discrepancies in perceived sleep duration and quality compared to self-report [ ]. These studies suggest that both subjective and objective sleep assessment may be needed to evaluate pediatric cardiac patient sleep patterns.
The purpose of this study was to identify patterns of duration and quality of sleep in pediatric cardiology patients using both subjective and objective assessment. Additional analysis examined the relationship between demographic (e.g., sex, age, socioeconomic status (SES)), disease (e.g., diagnosis type), and psychosocial variables (e.g., QOL, cardiac anxiety) and sleep behaviors.
2
Methods
2.1
Participants
Pediatric cardiology patients (ages 12–18) were recruited at regular clinic visits at the East Carolina Heart Institute (ECHI) Pediatric Cardiology Clinic. Participants were recruited from March 2020 to December 2020, with a pause in recruitment from March to June due to COVID protocols. All cardiac patients had a documented cardiac diagnosis and were seen by a pediatric cardiologist. Participants were approached in clinic by their physician or study personnel to learn more about the study during a regularly scheduled visit. Fliers containing project details and contact information were posted throughout the clinic, offering interested families who were not approached the opportunity to join the study. Participants aged 12–18 had a legal guardian present to consent to research and complete caregiver-report measures. Exclusion criteria included non-English speakers, as all measures were administered in English, individuals in current medical instability (e.g., initial diagnosis, immediate hospital follow up), and patients without a cardiac diagnosis. A pediatric cardiologist confirmed patient appropriateness for participation. This study was approved by the Institutional Review Board of East Carolina University with approval number 19–002329.
2.2
Procedure
A member of the research team verbally reviewed the informed consent and assent forms outlining the adolescent and caregiver’s rights as participants, approval of medical record reviews, and the purpose of the study. After agreeing to participate, the caregiver and participant completed the survey in the clinic, which included measures of caregiver and participant demographic and health information, self- and parent-reported sleep behaviors, self- and parent-reported health-related quality of life (HRQOL), and self-reported cardiac anxiety. All missing data on subjective reports were managed in a manner consistent with the accompanying scoring manual. Objective assessment of sleep was collected using an actigraphy watch in a home-based assessment. If sufficient data was not available, measures were not included in data analyses.
2.3
Measures
2.3.1
Demographic and health information
Caregivers reported on the participant’s age in years, sex, ethnicity, and cardiac diagnosis. Diagnoses were clustered by a pediatric cardiologist based on chart review and clinical exam into: Severe (cyanotic CHD) and less severe (acyanotic CHD, arrhythmias, cardiomyopathy (CM)). Cardiac procedures (e.g., surgery, device implant, cardiac catheterization) were also reported. Caregivers reported their relationship to the youth, marital status, level of education, household income, number of children in the home, and number of children with a cardiac condition. Additional relevant health information was collected (e.g., BMI, co-morbid conditions), as well as self-reported sleep duration for each night. All health information was confirmed via medical chart review.
2.3.2
Objective assessment of sleep
The CamNTech MotionWatch 8 actigraph was utilized for objective assessment of sleep. The actigraph triaxial mode and default settings for algorithms were retained. Participants were provided with an actigraphy watch to wear for 7 days on their wrist, which provided measurements of sleep duration (e.g., actual sleep and wake time), sleep efficiency (e.g., time asleep compared to time spent in bed), and sleep latency as indicators for overall sleep quality. MotionWatch 8 calculates each component of sleep using a combination of accelerometer data in 30- s epochs, event markers, and light sensors. Event markers, light sensors, and movement are combined to identify sleep initiation and onset time and includes assessment of 5-min periods before and after identified bedtime to confirm accuracy. Potential sleep periods with zero movement, as detected by actigraphy, were excluded from analysis, as these are presumed to be non-wearing periods [ ]. No analyses or adjustments were made for daytime sleep or naps. Patients were “blind” to their data as the MotionWatch 8 does not provide accessible data to the patients. Patients only interacted with the watch when pressing the indicator button at sleep initiation and when waking up to establish event markers. Sleep metrics were still detected and measured if event markers were not directly recorded by the patient. Actigraphy data was available for between 3 and 7 days for patients, with all data retained to provide maximum data retention.
2.3.3
Subjective assessment of sleep
The Pittsburgh Sleep Quality Index (PSQI) is a 19-item self-report assessment of sleep quality that yields 7 subscales, including sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, use of sleeping medications, and daytime dysfunction. The score ranges from 0 to 21, with higher scores suggesting poorer sleep. The PSQI has a cut off score of 5 to indicate poor sleep quality. The PSQI has been validated for use with adults (α = 0.83; [ ]) and suggested for use with adolescents ([ ]. The PSQI was selected to provide a multifaceted assessment of self-reported sleep without the question-burden of current comprehensive pediatric sleep measures.
2.3.4
Health related quality of life
The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a 29-item measure of cardiac specific health related quality of life that can yield a total QOL score. In addition to a total score, disease impact and psychosocial impact scores are provided. Maximum total score is 100, with higher scores indicating better cardiac HRQOL. The PCQLI has been validated for use in pediatric cardiology patients aged 8–18 (total – α = 0.89–95, subscales α = 0.74–0.92; [ ]). Parental and adolescent modules were administered.
2.3.5
Cardiac anxiety
The Cardiac Anxiety Questionnaire – Children (CAQ C) is an 18-item measure of cardiac specific anxiety with three subscales: fear, avoidance, and attention. Items are answered on a Likert scale (e.g., 0 – never, 4 – always). Literature has suggested a previous cut score for elevated levels of cardiac anxiety of approximately 2.2 [ ]. This measure was originally developed for use in adult cardiology patients with good psychometric properties [ ]. Recently, it has been examined for use within pediatric populations with good initial psychometric properties (total – α = 0.83, subscales α = 0.64–0.82; [ ]). The reliability for the total scale in this study was α = 0.89 [ ]. This questionnaire was selected to assess disease specific adjustment in a cardiac patient sample.
2.4
Statistical analyses
Descriptive analyses were completed to describe sample characteristics, sleep variables, and disease-specific measures. Correlation analyses and t -tests were completed to understand the relationship between sample characteristics, sleep variables, and disease-specific measures. All statistical analyses were conducted using SPSS statistical software.
3
Results
3.1
Sample characteristics
Table 1 presents the descriptive statistics of sample variables with frequencies and percentages for dichotomized variables, as well as means, standard deviations, and range for continuous variables. The sample included 31 pediatric cardiology patients aged 12–18 years with a mean age of 15.58 (SD = 1.89). Eighty-seven percent of patients had a caregiver who completed sleep and HRQOL questionnaires in addition to patient reports being completed, and, of these caregivers, 74 % were female. The remaining 13 % of patients were 18 and did not have a parent present.
| Categorical variables | |
|---|---|
| Age | 15.58 (1.89) |
| Sex | |
| Male | 13 (42 %) |
| Female | 18 (58 %) |
| Caregiver sex | |
| Male | 7 (25.9 %) |
| Female | 20 (74.1 %) |
| Race | |
| White | 61.5 % |
| African American | 30.8 % |
| Asian American | 3.8 % |
| Other | 3.8 % |
| Household income | |
| $0–9999 | 11.5 % |
| $10,000–19,999 | 3.8 % |
| $20,000–29,999 | 15.4 % |
| $30,000–39,999 | 3.8 % |
| $40,000–49,999 | 11.5 % |
| $50,000–74,999 | 23.1 % |
| $75,000–99,999 | 19.2 % |
| $100,000–149,999 | 3.8 % |
| $150,000 and above | 3.8 % |
| Marital status | |
| Never married | 26.7 % |
| Married | 50 % |
| Divorced | 23.3 % |
| BMI | 23.60 (5.73) |
| Cardiac diagnosis | |
| Acyanotic/less severe | 19 (66 %) |
| Cyanotic/more severe | 10 (34 %) |
| Surgery | 18 (58 %) |
| Comorbidity | |
| 0 | 9 (29 %) |
| 1+ | 22 (71 %) |
The majority of patients identified as White (52 %) and female (58 %), with 42 % identifying as male and 26 % identifying as Black. Patients came from homes with a mode of 1 sibling (33 %), with the number of siblings ranging from 0 to 4. Fifty percent of patients had caregivers who were married ( Table 1 ).
Cardiac diagnoses included, Atrial Septal Defect, Ventricular Septal Defect, Tetralogy of Fallot, Hypoplastic left heart syndrome, Coarctation of aorta, pulmonary valve stenosis, hypertrophic cardiomyopathy, and more ( Table 2 ). Fifty eight percent of participants had previous cardiac surgery. No participants in this sample had an implanted cardiac device.
| Diagnosis | Frequency |
|---|---|
| Anomalous Left Coronary Arising from the Pulmonary Artery (ALCAPA) | 1 |
| Atrial Septal Defect (ASD) | 8 |
| Aortic Valve Stenosis | 1 |
| Atrioventricular Block | 2 |
| Bicuspid Aortic Valve | 1 |
| Cardiac Aneurysm | 1 |
| Coarctation of Aorta | 3 |
| Congenital Insufficiency of Aortic Valve | 2 |
| Hypoplastic left heart syndrome | 2 |
| Hypertrophic Cardiomyopathy | 1 |
| Mitral Valve Prolapse | 1 |
| Nonrheumatic Pulmonary Valve Stenosis | 3 |
| Pulmonary Atresia | 1 |
| Tetralogy of Fallot | 3 |
| Transposition of the great arteries | 2 |
| Tricuspid Valve Hypoplasia | 1 |
| Ventricular Septal Defect (VSD) | 3 |
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