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Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.

ABSTRACT: To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time.Measures for this analysis, including the Parent-Patient Activation Measure (Parent-PAM), were completed by parents (N?=?198) prior to their child's HSCT preparative regimen and again at 6 months post-HSCT. Clinical data were also collected. A repeated measures model was built to estimate the association between clinical and demographic factors and parent well-being on Parent-PAM scores. Interactions with time were considered to test for changing effects over time.Throughout the HSCT course, older parent age was associated with lower Parent-PAM scores (??=?-0.29, p?=?0.02) and never being married was associated with higher scores (versus married, ??=?12.27, p?=?0.03). While higher parent emotional functioning scores were not associated with activation at baseline, they were important at 6 months (baseline, ??=?-0.002, p?=?0.96; interaction, ??=?0.14, p?=?0.03). At baseline, longer duration of illness was associated with increased activation, but this effect diminished with time (baseline, ??=?3.29, p?=?0.0002; interaction, ??=?-2.40, p?=?0.02). Activation levels dropped for parents of children who went from private to public insurance (baseline, ??=?2.95, p?=?0.53; interaction, ??=?-13.82, p?=?0.004). Clinical events did not affect Parent-PAM scores.Our findings reveal important changes in the factors associated with parent activation in the first 6 months after pediatric HSCT. These findings may reflect the emotional and financial toll of pediatric HSCT on parent activation.

SUBMITTER: Pennarola BW

PROVIDER: S-EPMC4449787 | biostudies-other | 2015 Jul

REPOSITORIES: biostudies-other

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Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.

Pennarola Brian W BW Rodday Angie Mae AM Bingen Kristin K Schwartz Lisa A LA Patel Sunita K SK Syrjala Karen L KL Mayer Deborah K DK Ratichek Sara J SJ Guinan Eva C EC Kupst Mary Jo MJ Hibbard Judith H JH Parsons Susan K SK

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20141218 7

<h4>Purpose</h4>To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time.<h4>Methods</h4>Measures for this analysis, including the Parent-Patient Activation Measure (Parent-PAM), were completed by parents (N = 198) prior to their child's HSCT preparative regimen and again at 6 months post-HSCT. Clinical dat ...[more]

PMID: 25519755

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Project description:Background: Autoimmune cytopenias (AICs) are potentially life-threatening complications following hematopoietic cell transplantation (HCT), yet little is understood about the mechanism by which they develop. We hypothesized that discordant B cell and T cell recovery is associated with AICs in transplant patients, and that this might differ based on transplant indication. Methods: In this case control study of children who underwent HCT at our institution, we evaluated the clinical and transplant characteristics of subjects who developed AICs compared to a control group matched by transplant indication and donor type. In cases, we analyzed the state of immune reconstitution, including B cell recovery, T cell recovery, and chimerism, immediately prior to AIC onset. Subjects were stratified by primary indication for transplant as malignancy (n = 7), primary immune deficiency (PID, n = 9) or other non-malignant disease (n = 4). We then described the treatment and outcomes for 20 subjects who developed AICs. Results: In our cohort, cases were older than controls, were more likely to receive a myeloablative conditioning regimen and had a significantly lower prevalence of chronic GVHD. There were distinct differences in the state of immune recovery based on transplant indication. None of the patients (0/7) transplanted for primary malignancy had T cell recovery at AIC onset compared to 71% (5/7) of patients with PID and 33% (1/3) of patients with non-malignant disease. The subset of patients with PID and non-malignant disease who achieved T cell reconstitution (6/6) prior to AIC onset, all demonstrated mixed or split chimerism. Subjects with AIHA or multi-lineage cytopenias had particularly refractory courses with poor treatment response to IVIG, steroids, and rituximab. Conclusions: These results highlight the heterogeneity of AICs in this population and suggest that multiple mechanisms may contribute to the development of post-transplant AICs. Patients with full donor chimerism may have early B cell recovery without proper T cell regulation, while patients with mixed or split donor chimerism may have residual host B or plasma cells making antibodies against donor blood cells. A prospective, multi-center trial is needed to develop personalized treatment approaches that target the immune dysregulation present and improve outcomes in patients with post-transplant AICs.

Dataset Information

Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.

Publications

Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.

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