Evaluation of health related quality of life in children with immune thrombocytopenia with the PedsQL™ 4.0 Generic Core Scales: a study on behalf of the pays de Loire pediatric hematology network

Strullu, Marion; Rakotonjanahary, Josué; Tarral, E.; Savagner, C.; Thomas, Caroline; Méchinaud, Françoise; Réguerre, Yves; Poignant, Sylvaine; Boutet, A.; Bassil, Joachim; Médinger, Dominique; Quemener, Emmanuel; Young, Nancy L.; Rachieru, Petronela; Klaassen, Robert J.; Pellier, Isabelle

doi:10.1186/1477-7525-11-193

Cited by 14 publications

(14 citation statements)

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“…No significant relation was found between age at onset or gender with either scores of child/proxy reports or parent reports. Strullu et al reported no significant association had been found between sex, age and PedsQL™ scores as well [ 30 ]. The effect of splenectomy as a treatment option was not addressed in the study since only 1 respondent had that.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in children with chronic immune thrombocytopenia in China

Zhang

Wang

Quan

et al. 2016

Health Qual Life Outcomes

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BackgroundThe concept of health-related quality of life (HRQoL) was brought up decades ago and has been well utilized in many different areas. Regarding immune thrombocytopenia (ITP) management, much work has been done to emphasize the necessity of taking HRQoL into consideration. However, data on HRQoL of children with chronic ITP remain rare.MethodsThis is a cross-sectional study. Children with chronic ITP aged from 2 to 18 and their parents were recruited. Participants completed the Pediatric Quality of Life Inventory™ (PedsQL™) and Kids’ ITP Tools (KIT) questionnaires at only one time. The Pearson’s correlation was examined between these measures for the pooled samples.ResultsA total of 42 families participated. Mean child self-report scores of KIT and PedsQL™ were 78.60 (SD = 12.40) and 85.13 (SD = 14.12), respectively, corresponding to parent proxy report scores, which were 73.40 (SD = 19.96) and 85.10 (SD = 13.56), respectively. Mean score of KIT parent impact report was only 40.39 (SD = 19.96). Significantly higher KIT scores (self-report and parent proxy) were observed in children with PLT more than 30 × 10*9/L compared to others, and this difference was even more noticeable in the PedsQL™ parent proxy report group (p < 0.001). As with intravenous immunoglobulin, the statistics difference appeared only in KIT child self-report group (p = 0.03), while for bone marrow examination, the difference appeared only in PedsQL™ parent proxy report group (p = 0.01). A negative relationship was apparent between duration of disease and scores. Gender and use of corticosteroids had no impact on the KIT and PedsQL™ scores here. Internal consistency reliability was demonstrated with Cronbach’s alpha for all scales above the acceptable level of 0.89 (range from 0.88 to 0.97). There was a substantial concordance (p < 0.001) between the child and parent proxy scores (ICC for KIT is 0.59, ICC for PedsQL™ is 0.85). Meanwhile, KIT scores are correlated with PedsQL™ (r = 0.75 for child self report, r = 0.61 for parent proxy report).ConclusionsITP affects HRQoL of children and parents. Parents are much more concerned with the disease than their children, which seriously influence their HRQoL as a result. The cross-culture translated KIT is reliable and valid with acceptable correlation to the PedsQL™. KIT provides valuable information of childhood ITP and will be a reliable outcome measure for further clinical research on HRQoL.

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Section: Discussionmentioning

confidence: 99%

Health-related quality of life in children with chronic immune thrombocytopenia in China

Zhang

Wang

Quan

et al. 2016

Health Qual Life Outcomes

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“…9 They found that HRQoL was not improved by treatment. However, since HRQoL was not measured before as well as after institution of treatment and treatment was not randomly assigned, 10 They found that biological factors such as sex, age, platelet count, bleeding scores, bone marrow aspiration and persistence of ITP at 6 months were not significantly associated with PedsQL™ scores and concluded that disease-specific questionnaires, such as the KIT, should be used in future studies. Finally, Mokhtar et al recently published a cross-sectional study in 80 Egyptian children with ITP using the KIT questionnaires.…”

Section: Discussionmentioning

confidence: 99%

“…2,5 However, these statements are based on clinical experience rather than results of research since HRQoL studies in childhood ITP are scarce. Recently, several clinical studies addressing HRQoL in children with ITP have been performed, [6][7][8][9][10][11] but large prospective studies with longitudinal generic as well as disease-specific HRQoL measurements are lacking.…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life in children with newly diagnosed immune thrombocytopenia

et al. 2014

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ARTICLES 1525 Qualità of Life IntroductionImmune thrombocytopenia (ITP) is an autoimmune disorder characterized by isolated thrombocytopenia (peripheral blood platelet count <100x10 9 /L) in the absence of other disorders associated with thrombocytopenia.1 Only 20-25% of children with ITP will develop chronic disease, currently defined as thrombocytopenia <100x10 9 /L lasting for more than 12 months. 1 In the case of no or mild bleeding the management consists of careful observation and restriction of activities that carry a risk of severe bleeding, regardless of platelet count. 2Severe bleeding, occurring in only 3-6% of children, 3 requires treatment with corticosteroids, intravenous immunoglobulin or anti-D immunoglobulin, either alone or in combination.Despite the transient and often benign course of the disease, many clinicians observe that ITP has a significant impact on health-related quality of life (HRQoL). 4 Recently published management guidelines state that HRQoL issues should be taken into account while making decisions on management in childhood ITP.2,5 However, these statements are based on clinical experience rather than results of research since HRQoL studies in childhood ITP are scarce. Recently, several clinical studies addressing HRQoL in children with ITP have been performed, 6-11 but large prospective studies with longitudinal generic as well as disease-specific HRQoL measurements are lacking.For this reason we decided to study HRQoL as part of a prospective study in children with newly diagnosed ITP: the TIKI study (Therapy with or without Intravenous Immunoglobulin for Kids with acute ITP), a multicenter randomized clinical trial to determine whether early administration of intravenous immunoglobulin can prevent a chronic course of the disease. In this study, children receive either a single dose of intravenous immunoglobulin or careful observation and treatment only in the case of severe bleeding. The final results of the primary outcome of this study are awaited and have not been published yet. The aim of the current HRQoL study was to relate generic as well as disease-specific HRQoL scores of children with newly diagnosed ITP to type of treatment, bleeding severity and clinical course of the disease, to analyze changes in HRQoL scores over time and to compare generic HRQoL scores of children with newly diagnosed ITP with already published data from a reference group of Dutch school children. 12 Methods PatientsChildren aged 3 months to 16 years with newly diagnosed ITP, a platelet count below 20x10 9 /L and with mild to moderate bleeding were eligible for inclusion in the TIKI study. Despite its generally transient and benign course, childhood immune thrombocytopenia has a large impact on health-related quality of life. Recently published guidelines state that quality of life should be taken into account while making decisions on management in childhood immune thrombocytopenia. We, therefore, assessed healthrelated quality of life in children with newly diagnosed immune thrombocytopeni...

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“…Additional disease burdens include medication side effects, persistence of disease, fatigue, and restrictions on activity. Since the validation of the Kids’ ITP Tools (KIT) nearly a decade ago, health‐related quality of life (HRQoL) in childhood ITP has become an important patient‐centered outcome assessed in prospective trials …”

Section: Introductionmentioning

confidence: 99%

“…Since the validation of the Kids' ITP Tools (KIT) nearly a decade ago, 2,3 health-related quality of life (HRQoL) Abbreviations: HRQoL, health-related quality of life; IQR, interquartile range; ITP, immune thrombocytopenia; IVIG, intravenous immunoglobulin; IWG, International Working Group; KIT, Kid's ITP Tool; Rho, Spearman rho in childhood ITP has become an important patient-centered outcome assessed in prospective trials. [4][5][6][7][8][9][10] Studies to date have revealed conflicting results when characterizing factors that may influence HRQoL in children with ITP, 4,9,10 most notable with regards to bleeding severity and its relationship to HRQoL. Although a long-term study of HRQoL has previously been reported, 10 studies assessing HRQoL throughout the natural history of an unselected cohort of children with ITP beyond 6 months are lacking.…”

Section: Introductionmentioning

confidence: 99%

Patterns and influences in health‐related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort

Flores

Klaassen

Buchanan

et al. 2017

Pediatric Blood & Cancer

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Evaluation of health related quality of life in children with immune thrombocytopenia with the PedsQL™ 4.0 Generic Core Scales: a study on behalf of the pays de Loire pediatric hematology network

Cited by 14 publications

References 28 publications

Health-related quality of life in children with chronic immune thrombocytopenia in China

Health-related quality of life in children with chronic immune thrombocytopenia in China

Health-related quality of life in children with newly diagnosed immune thrombocytopenia

Patterns and influences in health‐related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort

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