Concordance of quality of life assessments following pediatric hematopoietic stem cell transplantation

Purpose: To examine the concordance between pediatric patient's self-report and parent-report regarding a patient's quality of life (QoL) prior to and following hematopoietic stem cell transplantation (HSCT) and to identify potential medical and demographic covariates of concordance. Patients and Methods: Utilizing the PedsQL 4.0, the longitudinal QoL, data were obtained from 68 pediatric HSCT patient parent dyads prior to and up to two years post-transplantation. Results: Reliability based upon Intraclass Correlation Coefficients (ICC) indicates a parabolic pattern of concordance being significantly poorer in the acute phase of treatment 3 months post-HSCT, followed by a return to pre-transplant levels at subsequent assessments and a substantial rise at one- and two-year follow-up assessments (Baseline ICC = 0.42; 3 months = 0.11; 6 months = 0.54). Paired t-tests further indicate that concordance was highest for observable domains of functioning (Physical and School) with greater inter-rater discrepancies on the subjective domains (Emotional and Social) of QoL. at baseline and 6 months post-transplantation. Conclusion: Children typically rated their QoL as higher than parents at all time points and in virtually all domains; however, both perspectives are vital in providing a more accurate depiction of a patient's treatment experience. Dyads speaking the same language exhibited higher levels of QoL agreement than those that did not, while concordance among female-patient-dyads was more disparate than male-patient-dyads. Such findings highlight the importance of implementing psychosocial assessments and possible interventions for patients and parents proactively during the HSCT to effectively address the impact of the treatment and recovery experiences. Copyright (C) 2009 John Wiley & Sons, Ltd.