Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2024

Open Access 01-12-2024 | Palliative Care Unit | Research

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Authors: Larissa Alice Kubek, Benedikt Claus, Boris Zernikow, Julia Wager

Published in: BMC Palliative Care | Issue 1/2024

Login to get access

Abstract

Background

Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics.

Methods

In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures’ concordance.

Results

Descriptively, and except for the number of waking episodes, the different measures’ estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02).

Conclusion

Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters.
Appendix
Available only for authorised users
Literature
1.
Connor SR, Downing J, Marston J. Estimating the global need for palliative Care for Children: a cross-sectional analysis. J Pain Symptom Manag. 2017;53(2):171–7.CrossRef
2.
Hoell JI, Weber H, Warfsmann J, Trocan L, Gagnon G, Danneberg M, et al. Facing the large variety of life-limiting conditions in children. Eur J Pediatr. 2019;178(12):1893–902.PubMedCrossRef
3.
Schwantes S, O'Brien HW. Pediatric palliative care for children with complex chronic medical conditions. Pediatr Clin N Am. 2014;61(4):797–821.CrossRef
4.
Malcolm C, Forbat L, Anderson G, Gibson F, Hain R. Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families. Palliat Med. 2011;25(4):357–64.PubMedCrossRef
5.
Hauer JM, Wolfe J. Supportive and palliative care of children with metabolic and neurological diseases. Curr opinion support palliative care. 2014;8(3):296–302.CrossRef
6.
Stangenes KM, Fevang SK, Grundt J, Donkor HM, Markestad T, Hysing M, et al. Children born extremely preterm had different sleeping habits at 11 years of age and more childhood sleep problems than term-born children. Acta paediatrica Oslo, Norway 2017;106(12):1966–1972.
7.
Simard-Tremblay E, Constantin E, Gruber R, Brouillette RT, Shevell M. Sleep in children with cerebral palsy: a review. J Child Neurol. 2011;26(10):1303–10.PubMedCrossRef
8.
Tietze AL, Zernikow B, Michel E, Blankenburg M. Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep. Dev Med Child Neurol. 2014;56(12):1187–93.PubMedCrossRef
9.
Blackmer AB, Feinstein JA. Management of Sleep Disorders in Children With Neurodevelopmental Disorders: A Review. Pharmacotherapy. 2016;36(1):84–98.PubMedCrossRef
10.
Ghorbanpour Z, Hosseini SA, Akbarfahimi N, Rahgozar M. Correlation between sleep disorders and function in children with spastic cerebral palsy. Iranian j child neurol. 2019;13(3):35–44.
11.
Morelius E, Hemmingsson H. Parents of children with physical disabilities - perceived health in parents related to the child's sleep problems and need for attention at night. Child Care Health Dev. 2014;40(3):412–8.PubMedCrossRef
12.
Didden R, Korzilius H, van Aperlo B, van Overloop C, de Vries M. Sleep problems and daytime problem behaviours in children with intellectual disability. J intellect disab res: JIDR. 2002;46(Pt 7):537–47.CrossRef
13.
Dreier LA, Wager J, Blankenburg M, Zernikow B. The unfavorable Alliance of pain and poor sleep in children with life-limiting conditions and severe psychomotor impairment. Children (Basel, Switzerland). 2018;5(7).
14.
15.
Kubek LA, Claus B, Rostasy K, Bertolini A, Schimmel M, Frühwald MC, et al. Development and preliminary validation of the sleep screening for children and adolescents with complex chronic conditions (SCAC). J Sleep Res. 2023:e13881. https://​doi.​org/​10.​1111/​jsr.​13881.
16.
Smith MT, McCrae CS, Cheung J, Martin JL, Harrod CG, Heald JL, et al. Use of Actigraphy for the evaluation of sleep disorders and circadian rhythm sleep-wake disorders: an American Academy of sleep medicine systematic review, Meta-analysis, and GRADE assessment. J clin sleep med: JCSM : official public American Academ Sleep Med. 2018;14(7):1209–30.
17.
Combs D, Goodwin JL, Quan SF, Morgan WJ, Hsu C-H, Edgin JO, et al. Mother knows best? Comparing child report and parent report of sleep parameters with polysomnography. J clin sleep med: JCSM : official public American Academ Sleep Med. 2019;15(1):111–7.
18.
Smith MT, McCrae CS, Cheung J, Martin JL, Harrod CG, Heald JL, et al. Use of Actigraphy for the evaluation of sleep disorders and circadian rhythm sleep-wake disorders: an American Academy of sleep medicine clinical practice guideline. J clin sleep med: JCSM : official public Am Academy Sleep Med. 2018;14(7):1231–7.
19.
Dayyat EA, Spruyt K, Molfese DL, Gozal D. Sleep estimates in children: parental versus actigraphic assessments. Nat sci sleep. 2011;3:115–23.PubMedPubMedCentral
20.
Kubek LA, Kutz P, Roll C, Zernikow B, Wager J. Applicability of Actigraphy for assessing sleep behaviour in children with palliative care needs benchmarked against the gold standard polysomnography. J Clin Med. 2022;11(23)
21.
Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatr. 2014;14(1):199.PubMedPubMedCentralCrossRef
22.
23.
Niel K, LaRosa KN, Klages KL, Merchant TE, Wise MS, Witcraft SM, et al. Actigraphy versus polysomnography to measure sleep in youth treated for Craniopharyngioma. Behav Sleep Med. 2019:1–9.
24.
Jaworska N, MacQueen G. Adolescence as a unique developmental period. J psychiat neurosci: JPN. 2015;40(5):291–3.CrossRef
25.
Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS. J Pain Symptom Manag. 2022;63(5):e529–e43.CrossRef
26.
Littner M, Kushida CA, Anderson WM, Bailey D, Berry RB, Davila DG, et al. Practice parameters for the role of actigraphy in the study of sleep and circadian rhythms: an update for 2002. Sleep. 2003;26(3):337–41.PubMedCrossRef
27.
Toon E, Davey MJ, Hollis SL, Nixon GM, Horne RS, Biggs SN. Comparison of commercial wrist-based and smartphone accelerometers, Actigraphy, and PSG in a clinical cohort of children and adolescents. J clin sleep medicine : JCSM : official public Am Academy Sleep Med. 2016;12(3):343–50.
28.
29.
Meltzer LJ, McLaughlin CV. Pediatric sleep problems: a clinician's guide to behavioral interventions. American Psychological Association; 2015.CrossRef
30.
31.
Vandeleur M, Walter LM, Armstrong DS, Robinson P, Nixon GM, Horne RS. How well do children with cystic fibrosis sleep? An Actigraphic and questionnaire-based study. J Pediatr. 2017;182:170–6.PubMedCrossRef
32.
Tsai S-Y, Lee W-T, Jeng S-F, Lee C-C, Weng W-C. Sleep and behavior problems in children with epilepsy. J Pediatr Health Care. 2019;33(2):138–45.PubMedCrossRef
33.
Conley S, Knies A, Batten J, Ash G, Miner B, Hwang Y, et al. Agreement between actigraphic and polysomnographic measures of sleep in adults with and without chronic conditions: a systematic review and meta-analysis. Sleep Med Rev. 2019;46:151–60.PubMedPubMedCentralCrossRef
34.
Tétreault É, Bélanger M-È, Bernier A, Carrier J. Actigraphy data in pediatric research: the role of sleep diaries. Sleep Med. 2018;47:86–92.PubMedCrossRef
35.
Shrivastava D, Jung S, Saadat M, Sirohi R, Crewson K. How to interpret the results of a sleep study. J Community Hosp Intern Med Perspect. 2014;4(5):24983.PubMedCrossRef
36.
Wilcox RR. The percentage bend correlation coefficient. Psychometrika. 1994;59(4):601–16.CrossRef
37.
Pike N. Using false discovery rates for multiple comparisons in ecology and evolution. Methods Ecol Evol. 2011;2(3):278–82.MathSciNetCrossRef
38.
R Core Team. A language and environment for statistical computing. 4.0.5 ed. Vienne, Austria2021.
39.
R Studio Team. RStudio: Integrated Development Environment for R. 1.4.1725 ed. Boston, MA2021.
40.
41.
42.
Kaleyias J, Manley P, Kothare SV. Sleep disorders in children with cancer. Semin Pediatr Neurol. 2012;19(1):25–34.PubMedCrossRef
43.
Allen JM, Graef DM, Ehrentraut JH, Tynes BL, Crabtree VM. Sleep and pain in pediatric illness: a conceptual review. CNS neurosci therapeutics. 2016;22(11):880–93.CrossRef
44.
American Academy of Sleep Medicine. The International Classification of Sleep Disorders. 3rd ed. 2014. ISBN: 978-0-9915434-1-0; aasmnet.org.
45.
Tsai SY, Lee WT, Lee CC, Jeng SF, Weng WC. Agreement between Actigraphy and diary-recorded measures of sleep in children with epilepsy. J nurs scholarship : an official public Sigma Theta Tau Int Honor Soc Nurs. 2018;50(2):143–50.CrossRef
46.
Keilty K, Cohen E, Ho M, Spalding K, Stremler R. Sleep disturbance in family caregivers of children who depend on medical technology: a systematic review. J Pediatr Rehabil Med. 2015;8(2):113–30.PubMedCrossRef
47.
Lazzarin P, Schiavon B, Brugnaro L, Benini F. Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices. Acta Paediatr. 2018;107(2):289–93.PubMedCrossRef
48.
Winger A, Kvarme LG, Løyland B, Kristiansen C, Helseth S, Ravn IH. Family experiences with palliative care for children at home: a systematic literature review. BMC palliative care. 2020;19(1):165.PubMedPubMedCentralCrossRef
49.
Goldman SE, Bichell TJ, Surdyka K, Malow BA. Sleep in children and adolescents with Angelman syndrome: association with parent sleep and stress. J Intellect Disabil Res. 2012;56(6):600–8.PubMedCrossRef
50.
Werner H, Molinari L, Guyer C, Jenni OG. Agreement rates between Actigraphy, diary, and questionnaire for Children's sleep patterns. Archiv pediat adoles med. 2008;162(4):350–8.CrossRef
51.
Wayte S, McCaughey E, Holley S, Annaz D, Hill CM. Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression. Acta paediatrica. 2012;101(6):618–23.PubMedCrossRef
52.
Chen X, Gelaye B, Velez JC, Pepper M, Gorman S, Barbosa C, et al. Attitudes, beliefs, and perceptions of caregivers and rehabilitation providers about disabled children's sleep health: a qualitative study. BMC Pediatr. 2014;14:245.PubMedPubMedCentralCrossRef
53.
Galland BC, Short MA, Terrill P, Rigney G, Haszard JJ, Coussens S, et al. Establishing normal values for pediatric nighttime sleep measured by actigraphy: a systematic review and meta-analysis. Sleep. 2018;41(4)
54.
Surtees ADR, Richards C, Clarkson EL, Heald M, Trickett J, Denyer H, et al. Sleep problems in autism spectrum disorders: a comparison to sleep in typically developing children using actigraphy, diaries and questionnaires. Res Autism Spectr Disord. 2019;67:101439.CrossRef
55.
Dorris L, Scott N, Zuberi S, Gibson N, Espie C. Sleep problems in children with neurological disorders. Develop neurorehab. 2008;11(2):95–114.CrossRef
56.
Jan F. Melatonin therapy for circadian rhythm sleep disorders in children with multiple disabilities: what have we learned in the last decade? Dev Med Child Neurol. 2004;46(11):776–82.PubMedCrossRef
57.
Merbler AM, Byiers BJ, Garcia JJ, Feyma TJ, Symons FJ. The feasibility of using actigraphy to characterize sleep in Rett syndrome. J Neurodev Disord. 2018;10(1):8.PubMedPubMedCentralCrossRef
58.
Kirveskari E, Partinen M, Salmi T, Sainio K, Telakivi T, Hamalainen M, et al. Sleep alterations in juvenile neuronal ceroid-lipofuscinosis. Pediatr Neurol. 2000;22(5):347–54.PubMedCrossRef
59.
Bautista M, Whittingham K, Edwards P, Boyd RN. Psychometric properties of parent and child reported sleep assessment tools in children with cerebral palsy: a systematic review. Dev Med Child Neurol. 2018;60(2):162–72.PubMedCrossRef
60.
Yavuz-Kodat E, Reynaud E, Geoffray M-M, Limousin N, Franco P, Bourgin P, et al. Validity of Actigraphy compared to polysomnography for sleep assessment in children with autism Spectrum disorder. Front Psychiatry. 2019:10.
61.
Metadata
Title
Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions
Authors
Larissa Alice Kubek
Benedikt Claus
Boris Zernikow
Julia Wager
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2024
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-024-01394-7

Other articles of this Issue 1/2024

BMC Palliative Care 1/2024 Go to the issue

Research

Patients’ experiences with shared decision-making in home-based palliative care – navigation through major life decisions

Correction

Correction: “Being an informal caregiver – strengthening resources”: mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care

Research

Advancing screening tool for hospice needs and end-of-life decision-making process in the emergency department

Correction

Correction: Caring for persons with dementia: a qualitative study of the needs of carers following care recipient discharge from hospital

Research

Experiential training course on spirituality for multidisciplinary palliative care teams in a hospital setting: a feasibility study

Research

The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study