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.
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.


BACKGROUND
Trial registration clinical trials.gov Identifier: NCT00331357.
Marion
M
Strullu
Josué
J
Rakotonjanahary
Eliane
E
Tarral
Christophe
C
Savagner
Caroline
C
Thomas
Françoise
F
Méchinaud
Yves
Y
Reguerre
Sylvaine
S
Poignant
Arnaud
A
Boutet
Joachim
J
Bassil
Dominique
D
Médinger
Emmanuel
E
Quemener
Nancy L
NL
Young
Petronela
P
Rachieru
Robert J
RJ
Klaassen
Service d'Immuno-Hémato-Oncologie Pédiatrique, CHU d'Angers, 4 rue Larrey, 49933 Angers, Cedex 09, France, UE. IsPellier@chu-angers.fr.
Isabelle
I
Pellier
D000293:Adolescent; D001327:Autoimmune Diseases / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005260:Female; D005602:France; D006304:Health Status; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires / Q000592:standards*; D013921:Thrombocytopenia / Q000276:immunology* / Q000523:psychology*