Use of the experience sampling method in adolescents with Duchenne muscular dystrophy: a feasibility study.
Behaviour
Cognition
Duchenne muscular dystrophy
Experience sampling method
Steroid treatment
mHealth
Journal
European child & adolescent psychiatry
ISSN: 1435-165X
Titre abrégé: Eur Child Adolesc Psychiatry
Pays: Germany
ID NLM: 9212296
Informations de publication
Date de publication:
01 Nov 2023
01 Nov 2023
Historique:
received:
31
10
2022
accepted:
04
10
2023
medline:
2
11
2023
pubmed:
2
11
2023
entrez:
2
11
2023
Statut:
aheadofprint
Résumé
Experience sampling methods (ESM) using mobile health (mHealth) technology with a smartphone application are increasingly used in clinical practice and research. Still, recommendations are limited in young people, and adaptations may be necessary. Patients with Duchenne muscular dystrophy (DMD) are chronically treated with steroids from a young age. However, the impact of intermittent treatment schedules on fluctuations in somatic, cognitive and behavioural symptoms is poorly investigated. Existing studies are often cross-sectional and occur in controlled clinical settings, which do not provide sufficiently detailed insights into possible correlations. ESM might alleviate these problems. ESM innovates data collection with a smartphone application, which repeatedly assesses specific symptoms and contextual factors at random moments in daily life. We aimed to evaluate its feasibility in adolescents with DMD. In three (without/with/without steroids) 4-day periods of ESM, that were nested in 10/10 or 11/9 day on/off-medication periods, we evaluated its user-friendliness and compliance, and explored its ability to objectify fluctuations in somatic, cognitive and behavioural symptom severity and their relationship with contextual factors in seven DMD patients (age range 12-18 years) using intermittent corticosteroid treatment (dosage range 0.3-0.6 mg/kg/day). Patients reported that ESM was convenient and user-friendly. We were able to capture extensive intra-individual symptom fluctuations during intermittent corticosteroid treatment that were not revealed by routine clinical assessment. Implementing ESM to evaluate symptom fluctuation patterns in relation to treatment effects shows promise in adolescents with DMD. Optimization in further research is needed.
Identifiants
pubmed: 37914846
doi: 10.1007/s00787-023-02317-2
pii: 10.1007/s00787-023-02317-2
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Duchenne Parent Project
ID : No ID
Organisme : Stichting Spieren voor Spieren
ID : SvS15
Organisme : Universiteit Maastricht
ID : No ID
Informations de copyright
© 2023. The Author(s).
Références
Mercuri E, Bonnemann CG, Muntoni F (2019) Muscular dystrophies. Lancet 394(10213):2025–2038
pubmed: 31789220
doi: 10.1016/S0140-6736(19)32910-1
Darmahkasih AJ et al (2020) Neurodevelopmental, behavioral, and emotional symptoms common in Duchenne muscular dystrophy. Muscle Nerve 2020:1
Latimer R et al (2017) Secondary conditions among males with Duchenne or Becker muscular dystrophy. J Child Neurol 32(7):663–670
pubmed: 28393671
pmcid: 5502756
doi: 10.1177/0883073817701368
Pangalila RF et al (2015) Prevalence of fatigue, pain, and affective disorders in adults with Duchenne muscular dystrophy and their associations with quality of life. Arch Phys Med Rehabil 96(7):1242–1247
pubmed: 25731937
doi: 10.1016/j.apmr.2015.02.012
Birnkrant DJ et al (2018) Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol 17(3):251–267
pubmed: 29395989
pmcid: 5869704
doi: 10.1016/S1474-4422(18)30024-3
Guglieri M et al (2017) Developing standardized corticosteroid treatment for Duchenne muscular dystrophy. Contemp Clin Trials 58:34–39
pubmed: 28450193
pmcid: 6279424
doi: 10.1016/j.cct.2017.04.008
Griggs RC et al (2016) Efficacy and safety of deflazacort vs. prednisone and placebo for Duchenne muscular dystrophy. Neurology 87(20):2123–2131
pubmed: 27566742
pmcid: 5109941
doi: 10.1212/WNL.0000000000003217
Marden JR et al (2020) Real-world outcomes of long-term prednisone and deflazacort use in patients with Duchenne muscular dystrophy: experience at a single, large care center. J Comp Eff Res 9:177–189
pubmed: 31922454
doi: 10.2217/cer-2019-0170
Moxley RT 3rd et al (2010) Change in natural history of Duchenne muscular dystrophy with long-term corticosteroid treatment: implications for management. J Child Neurol 25(9):1116–1129
pubmed: 20581335
doi: 10.1177/0883073810371004
Matthews E et al (2016) Corticosteroids for the treatment of Duchenne muscular dystrophy. Cochrane Database Syst Rev 5:CD003725
Ciriaco M et al (2013) Corticosteroid-related central nervous system side effects. J Pharmacol Pharmacother 4(Suppl 1):S94–S98
pubmed: 24347992
pmcid: 3853679
doi: 10.4103/0976-500X.120975
Bonifati MD et al (2000) A multicenter, double-blind, randomized trial of deflazacort versus prednisone in Duchenne muscular dystrophy. Muscle Nerve 23(9):1344–1347
pubmed: 10951436
doi: 10.1002/1097-4598(200009)23:9<1344::AID-MUS4>3.0.CO;2-F
Hendriksen RGF et al (2017) Development of a new self-reporting instrument measuring benefits and side effects of corticosteroids in Duchenne muscular dystrophy: report from a pilot study. J Neuromuscul Dis 4(3):217–236
pubmed: 28800336
doi: 10.3233/JND-170223
Ricotti V et al (2013) Long-term benefits and adverse effects of intermittent versus daily glucocorticoids in boys with Duchenne muscular dystrophy. J Neurol Neurosurg Psychiatry 84(6):698–705
pubmed: 23250964
doi: 10.1136/jnnp-2012-303902
McMillan HJ (2019) Intermittent glucocorticoid regimes for younger boys with Duchenne muscular dystrophy: balancing efficacy with side effects. Muscle Nerve 59(6):638–639
pubmed: 30993732
doi: 10.1002/mus.26490
Ricotti V et al (2016) Neurodevelopmental, emotional, and behavioural problems in Duchenne muscular dystrophy in relation to underlying dystrophin gene mutations. Dev Med Child Neurol 58(1):77–84
pubmed: 26365034
doi: 10.1111/dmcn.12922
Kizilbash AH, Vanderploeg RD, Curtiss G (2002) The effects of depression and anxiety on memory performance. Arch Clin Neuropsychol 17(1):57–67
pubmed: 14589753
doi: 10.1093/arclin/17.1.57
Cameron JD, Ramaprasad A, Syn T (2017) An ontology of and roadmap for mHealth research. Int J Med Inform 100:16–25
pubmed: 28241934
doi: 10.1016/j.ijmedinf.2017.01.007
Delespaul PA (1995) Assessing schizophrenia in daily life: the experience sampling method. Maastricht University, Maastricht
Myin-Germeys I et al (2009) Experience sampling research in psychopathology: opening the black box of daily life. Psychol Med 39(9):1533–1547
pubmed: 19215626
doi: 10.1017/S0033291708004947
Bray P et al (2010) Feasibility of a computerized method to measure quality of “everyday” life in children with neuromuscular disorders. Phys Occup Ther Pediatr 30(1):43–53
pubmed: 20170431
doi: 10.3109/01942630903294687
Broen MP et al (2016) Unraveling the relationship between motor symptoms, affective states and contextual factors in Parkinson’s disease: a feasibility study of the experience sampling method. PLoS ONE 11(3):e0151195
pubmed: 26962853
pmcid: 4786263
doi: 10.1371/journal.pone.0151195
Vaessen T et al (2017) Is sensitivity to daily stress predictive of onset or persistence of psychopathology? Eur Psychiatry J Assoc Eur Psychiatrists 45:167–173
doi: 10.1016/j.eurpsy.2017.07.002
Hanssen E et al (2019) An ecological momentary intervention incorporating personalised feedback to improve symptoms and social functioning in schizophrenia spectrum disorders. Psychiatry Res 2019:112695
Hasmi L et al (2017) Network approach to understanding emotion dynamics in relation to childhood trauma and genetic liability to psychopathology: replication of a prospective experience sampling analysis. Front Psychol 8:1908
pubmed: 29163289
pmcid: 5673657
doi: 10.3389/fpsyg.2017.01908
Hartmann JA et al (2015) Experience sampling-based personalized feedback and positive affect: a randomized controlled trial in depressed patients. PLoS ONE 10(6):e0128095
pubmed: 26034983
pmcid: 4452775
doi: 10.1371/journal.pone.0128095
Dunton G et al (2016) Momentary assessment of psychosocial stressors, context, and asthma symptoms in hispanic adolescents. Behav Modif 40(1–2):257–280
pubmed: 26438664
doi: 10.1177/0145445515608145
Mujagic Z et al (2015) The experience sampling method—a new digital tool for momentary symptom assessment in IBS: an exploratory study. Neurogastroenterol Motil 27(9):1295–1302
pubmed: 26100684
doi: 10.1111/nmo.12624
Houtveen JH, Sorbi MJ (2013) Prodromal functioning of migraine patients relative to their interictal state—an ecological momentary assessment study. PLoS ONE 8(8):e72827
pubmed: 23977358
pmcid: 3745475
doi: 10.1371/journal.pone.0072827
Heron KE et al (2017) Using mobile-technology-based ecological momentary assessment (EMA) methods with youth: a systematic review and recommendations. J Pediatr Psychol 42(10):1087–1107
pubmed: 28475765
doi: 10.1093/jpepsy/jsx078
Dumont R, Willis JO (2008) Peabody picture vocabulary test—third edition. In: Encyclopedia of special education, p 1522–1522
Hendriksen JG, Vles JS (2008) Neuropsychiatric disorders in males with Duchenne muscular dystrophy: frequency rate of attention-deficit hyperactivity disorder (ADHD), autism spectrum disorder, and obsessive–compulsive disorder. J Child Neurol 23(5):477–481
pubmed: 18354150
doi: 10.1177/0883073807309775
Hendriksen RGF et al (2018) Brain-related comorbidities in boys and men with Duchenne muscular dystrophy: a descriptive study. Eur J Paediatr Neurol 22(3):488–497
pubmed: 29306518
doi: 10.1016/j.ejpn.2017.12.004
Hendriksen JG et al (2009) Psychosocial adjustment in males with Duchenne muscular dystrophy: psychometric properties and clinical utility of a parent-report questionnaire. J Pediatr Psychol 34(1):69–78
pubmed: 18650207
doi: 10.1093/jpepsy/jsn067
Cyrulnik SE et al (2008) Cognitive and adaptive deficits in young children with Duchenne muscular dystrophy (DMD). J Int Neuropsychol Soc 14(5):853–861
pubmed: 18764980
doi: 10.1017/S135561770808106X
Hellebrekers DMJ, Doorenweerd N, Sweere DJJ, van Kuijk SMJ, Aartsma-Rus AM, Klinkenberg S, Vles JSH, Hendriksen JGM (2020) Longitudinal follow-up of verbal span and processing speed in Duchenne muscular dystrophy. Eur J Paediatr Neurol 25:120–126
pubmed: 31964551
doi: 10.1016/j.ejpn.2020.01.002
Doorenweerd N et al (2014) Reduced cerebral gray matter and altered white matter in boys with Duchenne muscular dystrophy. Ann Neurol 76(3):403–411
pubmed: 25043804
doi: 10.1002/ana.24222
Castellino SM, Tooze JA, Flowers L, Parsons SK (2011) The Peabody picture vocabulary test as a pre-screening tool for global functioning in childhood brain tumor survivors. J Neurooncol 104(2):559–563
pubmed: 21225316
pmcid: 3681605
doi: 10.1007/s11060-010-0521-1
Verhagen SJW, Hasmi L, Drukker M, van Os J, Delespaul PAEG (2016) Use of experience sampling method in the context of clinical trials. Evid Based Ment Health 19(3):86–89
pubmed: 27443678
doi: 10.1136/ebmental-2016-102418
Dancey CP, Reidy J (2007) Statistics without maths for psychology. Pearson Education, London
Ono M et al (2019) What affects the completion of ecological momentary assessments in chronic pain research? An individual patient data meta-analysis. J Med Internet Res 21(2):e11398
pubmed: 30720437
pmcid: 6379815
doi: 10.2196/11398
Vachon H et al (2019) Compliance and retention with the experience sampling method over the continuum of severe mental disorders: meta-analysis and recommendations. J Med Internet Res 21(12):e14475
pubmed: 31808748
pmcid: 6925392
doi: 10.2196/14475
Vyvey M (2010) Steroids as pain relief adjuvants. Can Fam Physician 56(12):1295–1297
pubmed: 21156893
pmcid: 3001922
Andrews NE, Strong J, Meredith PJ (2012) Activity pacing, avoidance, endurance, and associations with patient functioning in chronic pain: a systematic review and meta-analysis. Arch Phys Med Rehabil 93(11):2109–2121
pubmed: 22728699
doi: 10.1016/j.apmr.2012.05.029
Green MF (2006) Cognitive impairment and functional outcome in schizophrenia and bipolar disorder. J Clin Psychiatry 67(Suppl 9):3–8 (Discussion 36–42)
pubmed: 16965182
Rock PL et al (2014) Cognitive impairment in depression: a systematic review and meta-analysis. Psychol Med 44(10):2029–2040
pubmed: 24168753
doi: 10.1017/S0033291713002535
Pane M et al (2018) Upper limb function in Duchenne muscular dystrophy: 24 month longitudinal data. PLoS ONE 13(6):e0199223
pubmed: 29924848
pmcid: 6010252
doi: 10.1371/journal.pone.0199223
Verhagen SJ (2020) The power of individual landscapes: a clinical exploration of personal experience sampling and new horizons. Doctoral Thesis, Maastricht University. Ridderprint BV. https://doi.org/10.26481/dis.20200110sv
van Os J et al (2017) The experience sampling method as an mHealth tool to support self-monitoring, self-insight, and personalized health care in clinical practice. Depress Anxiety 34(6):481–493
pubmed: 28544391
doi: 10.1002/da.22647
Hufford M, Shiffman S, Paty J, Stone A (2001) Ecological Momentary Assessment: Real-world, real-time measurement of patient experience. Progress in Ambulatory Assessment.
Peeters F et al (2006) Diurnal mood variation in major depressive disorder. Emotion 6(3):383–391
pubmed: 16938080
doi: 10.1037/1528-3542.6.3.383
Verhagen SJW et al (2019) Measuring within-day cognitive performance using the experience sampling method: a pilot study in a healthy population. PLoS ONE 14(12):e0226409
pubmed: 31830099
pmcid: 6907820
doi: 10.1371/journal.pone.0226409