scholarly journals Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
David Buchbinder ◽  
Sunita K. Patel ◽  
Jacqueline N. Casillas ◽  
Diane J. Nugent ◽  
Steven Neudorf ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Short Form ◽  
Hematopoietic Cell ◽  
Family Function ◽  
The Impact ◽  
Parent Proxy

Abstract Background When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. Methods A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient’s sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. Results Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. Conclusions While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

scholarly journals Quality of Life in Patients with Multiple Sclerosis after Autologous Hematopoietic Stem Cell Transplantation

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5708-5708
Author(s):  
Juan Carlos Olivares-Gazca ◽  
Iván Murrieta-Álvarez ◽  
Jesús Mauricio Olivares-Gazca ◽  
Yarely Itzayana García-Navarrete ◽  
Yahveth Cantero-Fortiz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Conflicts Of Interest ◽  
Hematopoietic Stem ◽  
Before And After ◽  
Quasi Experimental ◽  
The Impact

Introduction Multiple sclerosis (MS) is an inflammatory, demyelinating and neurodegenerative disease of the central nervous system (CNS) that causes a whole spectrum of neurological disorders associated with a profound decrease in the quality of life of affected patients. Currently, autologous hematopoietic cell transplantation (ASCT) is a validated therapeutic approach and has been shown to be superior to new immunomodulatory agents. However, the impact of these therapies on the quality of life of patients with MS is unknown. Objective Identify the impact on the quality of life in patients with multiple sclerosis after ASCT at our center. Methods A quasi-experimental, longitudinal, prospective and single-center study was conducted in which the quality of life was determined in patients with MS before and after ASCT. Patients who could not answer the questionnaire themselves were excluded and incomplete questionnaires were eliminated. The quality of life was determined by applying the MS-QoL 29 instrument which is validated instrument for this pathology (Cronbach 0.88-0.90 and Pearson with high correlation with MS-QoL56). The variables related to the physical and mental components of the instrument as well as demographic characteristics were studied. The statistical analysis of the data included measures of central tendency as well as inferential for the comparison of means and proportions (NC 95%, p <0.05). Results We included 52 patients prospectively from October 2018 to June 2019, 71% of the patients were women and the remaining 29% men. The median of age of the subset is 50 years (Interval 27-65). Of the selected patients, 45% has PPMS, 39% has SPMS and 16% has PPMS. Twenty six patients were followed at 3 months and seventeen were followed 6 months after ASCT. The statistical differences between the quality of life in the patients prior to the ASCT and the follow-up at 3 and 6 months in both the physical and mental components was analyzed. In the physical component the differences at 3 months (A) were significant (p = 0.019, 95% NC) as well as the differences at 6 months (b) after ASCT (p = 0.0024, 95% NC). In the mental component the differences were significant at 3 months (C) (p = 0.0012, NC 95%) as well as the differences at 6 months (D) after ASCT (p = 0.0007, NC 95%). Conclusions The study suggests that ASCT is a feasible and safe therapeutic alternative to improve the quality of life in patients with multiple sclerosis. Figure Disclosures No relevant conflicts of interest to declare.

scholarly journals Quality of life after allogeneic hematopoietic cell transplantation

Blood ◽  
2009 ◽  
Vol 114 (1) ◽  
pp. 7-19 ◽  
Author(s):  
Joseph Pidala ◽  
Claudio Anasetti ◽  
Heather Jim
Keyword(s):  
Quality Of Life ◽  
Cell Transplantation ◽  
Hematopoietic Cell Transplantation ◽  
Standard Dose ◽  
Hematopoietic Cell ◽  
Allogeneic Hematopoietic Cell Transplantation ◽  
Effective Control ◽  
High Dose ◽  
Allogeneic Hct

Abstract High-dose therapy with allogeneic hematopoietic cell transplantation (HCT) offers effective control and potential cure of hematopoietic malignancies, but with the cost of associated morbidity that includes adverse effects on quality of life (QOL). A growing body of literature has characterized this impact. Longitudinal studies suggest early moderate impairments that largely return to pretransplantation levels by day 100; the majority of studies suggest that greater than 60% of patients report good to excellent QOL in years 1 to 4 after HCT. Comparisons of allogeneic HCT with autologous HCT and standard-dose chemotherapy suggest impairments in QOL and a different trajectory of recovery in allogeneic HCT, but these conclusions are limited by confounding variables. Cross-sectional studies suggest larger and more persistent decrements in QOL in comparison with matched noncancer controls and population normative data. Acute and chronic graft-versus-host disease (GVHD) are significant threats to QOL. Behavioral interventions show promise to maintain or improve quality of life after allogeneic HCT. The review concludes with recommendations to investigators and clinicians as the state of this research advances.

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