Development and preliminary validation of the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC).
chronic disease
palliative care
surveys and questionnaire
Journal
Journal of sleep research
ISSN: 1365-2869
Titre abrégé: J Sleep Res
Pays: England
ID NLM: 9214441
Informations de publication
Date de publication:
08 2023
08 2023
Historique:
revised:
01
03
2023
received:
23
09
2022
accepted:
02
03
2023
medline:
17
7
2023
pubmed:
18
3
2023
entrez:
17
3
2023
Statut:
ppublish
Résumé
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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e13881Informations de copyright
© 2023 The Authors. Journal of Sleep Research published by John Wiley & Sons Ltd on behalf of European Sleep Research Society.
Références
American Academy of Sleep Medicine. (2014). International classification of sleep disorders. American Academy of Sleep Medicine.
Arias López, M. D. P., Fernández, A. L., Fiquepron, K., Meregalli, C., Ratto, M. E., & Siaba Serrate, A. (2020). Prevalence of children with complex chronic conditions in PICUs of Argentina: A prospective multicenter study. Pediatric Critical Care Medicine, 21(3), e143-e151. https://doi.org/10.1097/pcc.0000000000002223
Bartlett, M. S. (1954). A note on the multiplying factors for various χ2 approximations. Journal of the Royal Statistical Society. Series B (Methodological), 16(2), 296-298 http://www.jstor.org/stable/2984057
Bautista, M., Whittingham, K., Edwards, P., & Boyd, R. N. (2018). Psychometric properties of parent and child reported sleep assessment tools in children with cerebral palsy: A systematic review. Developmental Medicine and Child Neurology, 60(2), 162-172. https://doi.org/10.1111/dmcn.13609
Beattie, J. F., Koch, S. A., Bolden, L. B., & Thompson, M. D. (2016). Neuropsychological consequences of sleep disturbance in children with epilepsy. Epilepsy & Behavior, 57(Part A), 118-123. https://doi.org/10.1016/j.yebeh.2016.01.037
Berry, J. G., Hall, M., Cohen, E., O'Neill, M., & Feudtner, C. (2015). Ways to identify children with medical complexity and the importance of why. The Journal of Pediatrics, 167(2), 229-237. https://doi.org/10.1016/j.jpeds.2015.04.068
Bjur, K. A., Wi, C. I., Ryu, E., Crow, S. S., King, K. S., & Juhn, Y. J. (2019). Epidemiology of children with multiple complex chronic conditions in a mixed urban-rural US Community. Hospital Pediatrics, 9(4), 281-290. https://doi.org/10.1542/hpeds.2018-0091
Blankenburg, M., Tietze, A. L., Hechler, T., Hirschfeld, G., Michel, E., Koh, M., & Zernikow, B. (2013). Snake: The development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairment. Sleep Medicine, 14(4), 339-351. https://doi.org/10.1016/j.sleep.2012.12.008
Bogetz, J. F., Revette, A., Rosenberg, A. R., & DeCourcey, D. (2020). "I could never prepare for something like the death of my own child": Parental perspectives on preparedness at end of life for children with complex chronic conditions. Journal of Pain and Symptom Management, 60(6), 1154-1162.e1151. https://doi.org/10.1016/j.jpainsymman.2020.06.035
Brand, K., & Thorpe, B. (2016). Pain assessment in children. Anaesthesia and Intensive Care Medicine, 17(6), 270-273. https://doi.org/10.1016/j.mpaic.2016.03.007
Bruni, O., Ottaviano, S., Guidetti, V., Romoli, M., Innocenzi, M., Cortesi, F., & Giannotti, F. (1996). The Sleep Disturbance Scale for Children (SDSC). Construction and validation of an instrument to evaluate sleep disturbances in childhood and adolescence. Journal of Sleep Research, 5(4), 251-261.
Burns, K. H., Casey, P. H., Lyle, R. E., Bird, T. M., Fussell, J. J., & Robbins, J. M. (2010). Increasing prevalence of medically complex children in US hospitals. Pediatrics, 126(4), 638-646. https://doi.org/10.1542/peds.2009-1658
Carvalho, K. M., Carvalho, M. S. N. d., Grando, R. L., & Menezes, L. A. d. (2021). Children with complex chronic conditions: An evaluation from the standpoint of academic publications. International Journal of Contemporary Pediatrics, 8(3), 594. https://doi.org/10.18203/2349-3291.ijcp20210674
Cattell, R. B. (1966). The scree test for the number of factors. Multivariate Behavioral Research, 1(2), 245-276. https://doi.org/10.1207/s15327906mbr0102_10
Degroot, A. M., Dannenburg, L., & Vanhell, J. G. (1994). Forward and backward word translation by bilinguals. Journal of Memory and Language, 33(5), 600-629.
Ebel, R. L., & Frisbie, D. A. (1972). Essentials of educational measurement. Prentice-Hall.
Feudtner, C., Christakis, D. A., & Connell, F. A. (2000). Pediatric deaths attributable to complex chronic conditions: A population-based study of Washington state, 1980-1997. Pediatrics, 106(1 Pt 2), 205-209.
Feudtner, C., Feinstein, J. A., Zhong, W., Hall, M., & Dai, D. (2014). Pediatric complex chronic conditions classification system version 2: Updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatrics, 14(1), 199. https://doi.org/10.1186/1471-2431-14-199
Feudtner, C., Nye, R., Hill, D. L., Hall, M., Hinds, P., Johnston, E. E., Friebert, S., Hays, R., Kang, T. I., & Wolfe, J. (2021). Polysymptomatology in pediatric patients receiving palliative care based on parent-reported data. JAMA Network Open, 4(8), e2119730. https://doi.org/10.1001/jamanetworkopen.2021.19730
Fraser, L. K., Gibson-Smith, D., Jarvis, S., Norman, P., & Parslow, R. C. (2020). Estimating the current and future prevalence of life-limiting conditions in children in England. Palliative Medicine, 269216320975308, 1641-1651. https://doi.org/10.1177/0269216320975308
Gulliksen, H. (1945). The relation of item difficulty and inter-item correlation to test variance and reliability. Psychometrika, 10(2), 79-91. https://doi.org/10.1007/BF02288877
Hardelid, P., Dattani, N., & Gilbert, R. (2014). Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: A data linkage cohort study. BMJ Open, 4(8), e005331. https://doi.org/10.1136/bmjopen-2014-005331
Hauer, J. M., & Wolfe, J. (2014). Supportive and palliative care of children with metabolic and neurological diseases. Current Opinion in Supportive and Palliative Care, 8(3), 296-302. https://doi.org/10.1097/spc.0000000000000063
Hayes, A. F., & Coutts, J. J. (2020). Use omega rather than Cronbach's alpha for estimating reliability. But…. Communication Methods and Measures, 14(1), 1-24. https://doi.org/10.1080/19312458.2020.1718629
Horn, J. L. (1965). A rationale and test for the number of factors in factor analysis. Psychometrika, 30(2), 179-185.
Iglowstein, I., Jenni, O. G., Molinari, L., & Largo, R. H. (2003). Sleep duration from infancy to adolescence: Reference values and generational trends. Pediatrics, 111(2), 302-307. https://doi.org/10.1542/peds.111.2.302
Kaiser, H. F. (1974). An index of factorial simplicity. Psychometrika, 39(1), 31-36.
Kaleyias, J., Manley, P., & Kothare, S. V. (2012). Sleep disorders in children with cancer. Seminars in Pediatric Neurology, 19(1), 25-34. https://doi.org/10.1016/j.spen.2012.02.013
Koller, M., Kantzer, V., Mear, I., Zarzar, K., Martin, M., Greimel, E., Bottomley, A., Arnott, M., & Kuliś, D. (2012). The process of reconciliation: Evaluation of guidelines for translating quality-of-life questionnaires. Expert Review of Pharmacoeconomics & Outcomes Research, 12, 189-197. https://doi.org/10.1586/erp.11.102
Lindley, L. C., Held, M. L., Henley, K. M., Miller, K. A., Pedziwol, K. E., & Rumley, L. E. (2017). Nursing unit environment associated with provision of language services in pediatric hospices. Journal of Racial and Ethnic Health Disparities, 4(2), 252-258. https://doi.org/10.1007/s40615-016-0224-1
Marcus, K. L., Kao, P.-C., Ma, C., Wolfe, J., & DeCourcey, D. D. (2021). Symptoms and suffering at end of life for children with complex chronic conditions. Journal of Pain and Symptom Management, 63, 88-97. https://doi.org/10.1016/j.jpainsymman.2021.07.010
McDonald, R. P. (1999). Test theory: A unified treatment. Lawrence Erlbaum Associates Publishers.
McNeish, D. (2017). Exploratory factor analysis with small samples and missing data. Journal of Personality Assessment, 99(6), 637-652.
Mundfrom, D. J., Shaw, D. G., & Ke, T. L. (2005). Minimum sample size recommendations for conducting factor analyses. International Journal of Testing, 5(2), 159-168. https://doi.org/10.1207/s15327574ijt0502_4
Murphy, F. A. D. S. D. (2020). Children with special health care needs face challenges accessing information, support, and services. Retrieved January 1, 2022, from https://www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services.
Owens, J. A., Spirito, A., & McGuinn, M. (2000). The Children's Sleep Habits Questionnaire (CSHQ): Psychometric properties of a survey instrument for school-aged children. Sleep, 23(8), 1043-1051.
Pike, N. (2011). Using false discovery rates for multiple comparisons in ecology and evolution. Methods in Ecology and Evolution, 2(3), 278-282.
R Core Team. (2021). A Language and Environment for Statistical Computing (Version 4.0.5). https://www.R-project.org/.
R Studio Team. (2021). RStudio: Integrated Development Environment for R (Version 1.4.1725).
Revelle, W., & Revelle, M. (2017). Procedures for psychological, psychometric, and personality. R package Bpsychˆ., Version, 1(5).
Schwantes, S., & O'Brien, H. W. (2014). Pediatric palliative care for children with complex chronic medical conditions. Pediatric Clinics of North America, 61(4), 797-821. https://doi.org/10.1016/j.pcl.2014.04.011
Simard-Tremblay, E., Constantin, E., Gruber, R., Brouillette, R. T., & Shevell, M. (2011). Sleep in children with cerebral palsy: A review. Journal of Child Neurology, 26(10), 1303-1310. https://doi.org/10.1177/0883073811408902
Spicer, S., Macdonald, M. E., Davies, D., Vadeboncoeur, C., & Siden, H. (2015). Introducing a lexicon of terms for paediatric palliative care. Paediatrics & Child Health, 20(3), 155-156. https://doi.org/10.1093/pch/20.3.155
Stangenes, K. M., Fevang, S. K., Grundt, J., Donkor, H. M., Markestad, T., Hysing, M., Elgen, I. B., & Bjorvatn, B. (2017). Children born extremely preterm had different sleeping habits at 11 years of age and more childhood sleep problems than term-born children. Acta Paediatrica, 106(12), 1966-1972. https://doi.org/10.1111/apa.13991
Streiner, D. L. (2003). Starting at the beginning: An introduction to coefficient alpha and internal consistency. Journal of Personality Assessment, 80(1), 99-103.
Tabachnick, B. G., & Fidell, L. S. (2018). Using multivariate statistics. Pearson https://books.google.de/books?id=cev2swEACAAJ
Taber, K. S. (2018). The use of Cronbach's alpha when developing and reporting research instruments in science education. Research in Science Education, 48(6), 1273-1296.
Van Buuren, S. (2018). Flexible imputation of missing data. CRC Press.
van Griethuijsen, R. A. L. F., van Eijck, M. W., Haste, H., den Brok, P. J., Skinner, N. C., Mansour, N., Savran Gencer, A., & BouJaoude, S. (2015). Global patterns in students' views of science and interest in science. Research in Science Education, 45(4), 581-603. https://doi.org/10.1007/s11165-014-9438-6