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An evaluation of participation restrictions and associated factors via the ICF-CY framework in children with acute lymphoblastic leukemia receiving maintenance chemotherapy

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Abstract

Our aim was to determine impairments in physical functions, activity limitations, and participation restrictions with the International Classification of Functioning, Disability and Health version for Children and Youth (ICF-CY) framework in children with acute lymphoblastic leukemia (ALL) receiving treatment. Physical functions were assessed in terms of pain level, fatigue level, handgrip strength, and motor proficiency. Fine motor activities and lower extremity performance were assessed to determine activity limitations. Participation was assessed with a patient-reported questionnaire. Thirty children with ALL (mean age: 8.45 ± 3.33 years) were included. Pain and fatigue level were mild. Poor handgrip strength was found; their mean handgrip strength was 60% of the normative. Fifty-six percent of the children had below-average motor performance. Participation scores were considerably high, except for sport and physical functioning sub-score. Participation level was positively associated with bilateral coordination and duration after diagnosis, while negatively correlated with pain and fatigue level (p ˂ 0.05).

Conclusion: The ICF-CY-based evaluation was useful to understand children’s limitations in everyday life. Children with ALL need supportive interventions during treatments in terms of physical functioning and participation in activities. Children with ALL with higher pain and fatigue, poor bilateral coordination, and who were in earlier period after diagnosis had higher risk for participation restriction.

What is Known:

Children with ALL had physical functioning limitations on treatments.

Participation restrictions were described in children with ALL off treatment.

What is New:

The ICY-CY-based health and functioning evaluation allows health care professionals to globally determine limitations of everyday life in children with ALL on treatment.

Impairments in physical functions, pain severity, fatigue severity, and duration after diagnosis are associated with participation to everyday life in children with ALL on treatment.

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Abbreviations

ALL:

Acute lymphoblastic leukemia

BOT-2 SF:

The Bruininks-Oseretsky Test of Motor Proficiency-Second Edition Short Form

GPT:

Grooved Pegboard Test

ICF-CY:

The International Classification of Functioning, Disability and Health version for Children and Youth

PedsQL-MFS:

The Pediatric Quality of Life Multidimensional Fatigue Scale

PODCI:

The Pediatric Data Collection Instrument

TUG-3m:

The Time Up and Go-3 meters

30-sec SST:

30-second Sit to Stand Test

9-HPT:

Nine-Hole Peg Test

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Authors and Affiliations

Authors

Contributions

VYK: Idea and study design, literature research, data collection, data analysis, manuscript writing, FI: Data collection, manuscript writing, SU: Case referral, interpretation of findings, SAU: Study design, interpretation of findings, TD: Study design, interpretation of findings.

Corresponding author

Correspondence to Vesile Yildiz Kabak.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethics approval

Approval was obtained from the ethics committee of Hacettepe University. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Additional information

Communicated by Peter de Winter

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Yildiz Kabak, V., Ipek, F., Unal, S. et al. An evaluation of participation restrictions and associated factors via the ICF-CY framework in children with acute lymphoblastic leukemia receiving maintenance chemotherapy. Eur J Pediatr 180, 1081–1088 (2021). https://doi.org/10.1007/s00431-020-03833-y

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