PMID- 24225051 OWN - NLM STAT- MEDLINE DCOM- 20140724 LR - 20211021 IS - 1477-7525 (Electronic) IS - 1477-7525 (Linking) VI - 11 DP - 2013 Nov 13 TI - 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. PG - 193 LID - 10.1186/1477-7525-11-193 [doi] AB - BACKGROUND: Immune thrombocytopenia (ITP) is a childhood disorder that is often life-altering for children and their parents. Health related quality of life (HRQL) has never been chronologically monitored in children with ITP. We initiated a prospective study to assess HRQL from diagnosis to six months and define factors that influence this outcome in children with ITP. METHODS: 73 children with acute ITP aged from 2 to 18 years were prospectively enrolled in the study. According to the presence of bleeding, they were or were not given a 4-day course of corticosteroid treatment. The PedsQL 4.0 Generic Core Scale was completed by children and parents upon their inclusion in the study and 6 months after diagnosis. RESULTS: Over the six month period, quality of life improved in terms of their global, physical and psychosocial well-being for 54.5%, 35.6% and 36.2% of patients respectively. This improvement is clinically relevant compared to scores at diagnosis, corresponding at least to a minimal clinically important difference (MCID). Factors such as sex, age, platelet count, bleeding scores, bone marrow aspiration and persistence of ITP at 6 months were not significantly associated with HRQL scores. However, preceding viral infection was identified to have an impact on HRQL. CONCLUSIONS: This first longitudinal study assessing HRQL in children with ITP reveals a global improvement in PedSQL 4.0. However, these results should be considered with caution since our data also confirm that self-report HRQL scores are not influenced by any analyzed biologic or clinical parameters. Others tools, such as Kids' ITP Tools, would probably be required to assess the HRQL of this population. TRIAL REGISTRATION: Trial registration clinical trials.gov Identifier: NCT00331357. FAU - Strullu, Marion AU - Strullu M FAU - Rakotonjanahary, Josue AU - Rakotonjanahary J FAU - Tarral, Eliane AU - Tarral E FAU - Savagner, Christophe AU - Savagner C FAU - Thomas, Caroline AU - Thomas C FAU - Mechinaud, Francoise AU - Mechinaud F FAU - Reguerre, Yves AU - Reguerre Y FAU - Poignant, Sylvaine AU - Poignant S FAU - Boutet, Arnaud AU - Boutet A FAU - Bassil, Joachim AU - Bassil J FAU - Medinger, Dominique AU - Medinger D FAU - Quemener, Emmanuel AU - Quemener E FAU - Young, Nancy L AU - Young NL FAU - Rachieru, Petronela AU - Rachieru P FAU - Klaassen, Robert J AU - Klaassen RJ FAU - Pellier, Isabelle AU - Pellier I AD - Service d'Immuno-Hemato-Oncologie Pediatrique, CHU d'Angers, 4 rue Larrey, 49933 Angers, Cedex 09, France, UE. IsPellier@chu-angers.fr. LA - eng SI - ClinicalTrials.gov/NCT00331357 PT - Evaluation Study PT - Journal Article PT - Research Support, Non-U.S. Gov't DEP - 20131113 PL - England TA - Health Qual Life Outcomes JT - Health and quality of life outcomes JID - 101153626 SB - IM MH - Adolescent MH - Autoimmune Diseases/psychology MH - Child MH - Child, Preschool MH - Female MH - France MH - *Health Status MH - Humans MH - Male MH - Prospective Studies MH - Quality of Life/*psychology MH - Surveys and Questionnaires/*standards MH - Thrombocytopenia/*immunology/*psychology PMC - PMC3830442 EDAT- 2013/11/15 06:00 MHDA- 2014/07/25 06:00 PMCR- 2013/11/13 CRDT- 2013/11/15 06:00 PHST- 2013/05/21 00:00 [received] PHST- 2013/10/17 00:00 [accepted] PHST- 2013/11/15 06:00 [entrez] PHST- 2013/11/15 06:00 [pubmed] PHST- 2014/07/25 06:00 [medline] PHST- 2013/11/13 00:00 [pmc-release] AID - 1477-7525-11-193 [pii] AID - 10.1186/1477-7525-11-193 [doi] PST - epublish SO - Health Qual Life Outcomes. 2013 Nov 13;11:193. doi: 10.1186/1477-7525-11-193.