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Development and preliminary validation of the Sleep Screening for Children and Adolescents with Complex Chronic
Larissa Alice Kubek1,2, Benedikt Claus1,3, Kevin Rostasy4
1PedScience Research Institute, Datteln, Germany.
Insights
A new screening tool, the Sleep Screening for Children and Adolescents with Complex Chronic Conditions, helps identify sleep issues in pediatric patients with complex health needs. This validated questionnaire aids clinicians in detecting potential sleep problems in this vulnerable population.
Area of Science:
- Pediatric Health
- Sleep Medicine
- Clinical Psychology
Background:
- Children and adolescents with complex chronic conditions (CCCs) are a diverse group.
- Many experience sleep abnormalities, often assessed via proxy questionnaires.
- A specific tool for this population's sleep assessment was lacking.
Purpose of the Study:
- To develop and validate the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SS-CCC) questionnaire.
- To create an effective tool for obtaining sleep behavior information in pediatric CCC patients.
- To address the need for a suitable instrument for this heterogeneous population.
Main Methods:
- Mixed-method design involving literature review and expert meetings for item generation.
- Pre-testing with 60 caregivers to assess item relevance and comprehensibility.
- Main testing with 315 participants across three tertiary pediatric hospitals, using principal components analysis and item analysis for validation.
Main Results:
- The SS-CCC questionnaire identified four key scales: "Falling and staying asleep," "Sleep-associated respiration and arousal," "Daytime sleepiness," and "Sleep-associated movements."
- Item analysis indicated satisfactory discriminative power.
- Scales showed positive correlations with care level, sleep circumstances, and number of diagnoses, supporting convergent validation.
Conclusions:
- The newly developed SS-CCC questionnaire is a validated tool for screening sleep problems in children and adolescents with complex chronic conditions.
- It provides clinicians with initial indications of potential sleep disturbances in this growing pediatric population.
- The tool aids in understanding sleep behavior across various CCCs, particularly neurological and neuromuscular diseases.
Abstract:
Children and adolescents with complex chronic conditions, including those with life-threatening or life-limiting conditions, are a heterogeneous population. Many individuals exhibit sleep abnormalities that are measurable by proxy questionnaires. No suitable instrument to assess the wide range of different complex chronic conditions is currently available. The aim of the present study was to develop a screening tool-the Sleep Screening for Children and Adolescents with Complex Chronic Conditions-to effectively obtain sleep behaviour information in this population. Following a mixed-method design, potential items for the Sleep Screening for Children and Adolescents with Complex Chronic Conditions questionnaire were defined through literature research and expert meetings. In a pre-test with N = 60 family and professional caregivers, the items' relevance and comprehensibility as well as the instrument's overall design were assessed. For the main test, N = 315 participants were recruited in three tertiary paediatric hospitals. A principal components analysis detected the questionnaire's scales. Item analysis focused on mean values, range, difficulty and discriminatory power. Convergent validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions was assessed via correlations between scale items. Most patients had neurological or neuromuscular diseases. Four scales ("Falling and staying asleep", "Sleep-associated respiration and arousal", "Daytime sleepiness" and "Sleep-associated movements") emerged. The item analysis showed satisfactory discriminative power. In the preliminary validation, all scales correlated positively with a child's care level and with various sleep circumstances items. Three scales additionally correlated with the number of complex chronic condition diagnoses. This newly developed questionnaire can provide clinicians with first indications of possible sleep problems in a growing paediatric population.
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