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Functional limitations in R omanian children with haemophilia: further testing of psychometric properties of the P aediatric H aemophilia A ctivities L ist
Author(s) -
Groen W.,
Net J.,
Lacatusu A. M.,
Serban M.,
Helders P. J. M.,
Fischer K.
Publication year - 2013
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.12090
Subject(s) - haemophilia , medicine , intraclass correlation , construct validity , physical therapy , rehabilitation , quality of life (healthcare) , haemophilia a , test (biology) , reliability (semiconductor) , psychometrics , pediatrics , clinical psychology , nursing , paleontology , power (physics) , physics , quantum mechanics , biology
Summary Children with haemophilia often experience limitations in activities of daily life. Recently the Paediatric Haemophilia Activities List ( PedHAL ) has been developed and tested in D utch children with intensive replacement therapy. The psychometric properties of the PedHAL in children not receiving intensive replacement therapy are not known. The objective was to gain further insight into the psychometric properties of the PedHAL and to study the functional health status of R omanian children and adolescents with haemophilia. Children attending to the rehabilitation centre of B uzias in R omania were sampled consecutively. Construct validity of the PedHAL was evaluated by concurrent testing with objective and subjective measures of physical function and functional ability. Reproducibility was tested by a 3‐day test–retest by intraclass correlation coefficient ( ICC ) and limits of agreement ( LOA ). Responsiveness to rehabilitation was assessed by Haemophilia Joint Health Score ( HJHS ) and PedHAL . Twenty‐nine children with severe ( n = 25) or moderate ( n = 4) haemophilia participated. Mean age was 13.2 years (SD 4.0). Median score of the PedHAL was 83.5 ( IQR 47.9–90.5). The PedHAL correlated moderately with HJHS (rho = −0.59), F unctional I ndependence S core in& H aemophilia (rho = 0.65) and C hild H ealth Q uestionnaire‐physical function (rho = 0.40) and not with C hild H ealth Q uestionnaire‐mental health, C hild H ealth Q uestionnaire‐behaviour and 6 MWT . Test‐retest reliability was good (ICC = 0.95). LOA was 17.4 points for the sum score. HJHS scores improved slightly after rehabilitation, whereas PedHAL scores did not change. In general, construct validity and test–retest reliability were good, test–retest agreement showed some variability. Therefore, currently the PedHAL may be more appropriate for research purposes than for individual patient monitoring in clinical practice.