Symptoms of Survivors of Pediatric Hematopoietic Stem Cell Transplant by Age, Sex, and Transplant Type

2022 ◽  
pp. 275275302110687
Author(s):  
Caroline F. Morrison ◽  
Sarah Drake ◽  
Nathan L. Basile ◽  
Mary Jane Horn ◽  
Joshua Lambert ◽  
...  

Purpose: The purpose of this study was to describe symptoms experienced by survivors of pediatric hematopoietic stem cell transplant (HSCT), and demographic and treatment-factors associated with ongoing symptomology. Methods: Fifty pediatric survivors completed a cross-sectional pilot study. Questionnaires were administered online via REDCap to assess symptoms experienced in the last week. Survivors also consented to a medical record chart review. Results: Survivors were on average 5.4 years post-HSCT (range 1.1 to 9 years), male (58%), and Caucasian (80%) who received an allogeneic HSCT (92%). The most commonly reported symptoms were difficulty concentrating (42.5%), pain (38%), worry (38%), nervousness (37.5%), and lack of energy/fatigue (34%). Survivors reported up to 14 symptoms, with 90% of the sample experiencing at least one symptom in the previous week. Average number of symptoms varied by age group between 2.1 (8–9 years) and 6.8 (18 and older). Age and female gender were associated with higher levels of fatigue. Conclusions: The majority of survivors experienced at least one symptom in the previous week. Neuropsychological symptoms and pain endure well into survivorship that can influence outcomes such as function and health-related quality of life (HRQOL). Research is needed on biological mechanisms of ongoing symptomology, effective interventions to prevent or mitigate symptoms, and the impact of symptoms on patient outcomes including daily functioning and HRQOL. Implications Survivors of pediatric HSCT continued to experience symptoms for up to nine years. Survivors should be frequently screened for symptoms, as symptoms may affect function, learning/employment outcomes, and HRQOL.

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 4748-4748
Author(s):  
Szwed A. Ellen ◽  
Jack W. Hsu ◽  
Wei Hou ◽  
Randy A. Brown ◽  
Christopher R. Cogle ◽  
...  

Abstract Abstract 4748 Hematopoietic Stem Cell Transplant Comorbidity Index (HCT-CI) Scores Correlates with Increased Readmissions and Days in Hospital in Patients Undergoing Myeloablative Hematopoietic Stem Cell Transplantation. Ellen Szwed, Jack W. Hsu, Wei Hou, Randy A. Brown, Christopher R. Cogle, John W. Hiemenz, W Stratford May, Jan S. Moreb, Baldeep Wirk, John R. Wingard. The hematopoietic stem cell transplant comorbidity index (HCT-CI) was developed to assess the impact of comorbidities in allogeneic stem cell transplant (AlloSCT) recipients. It has been shown to correlate with non-relapse mortality and overall survival in both the myeloablative, non-myeloablative (NMA), and reduced intensity (RIC) settings, regardless of graft source. However, the economic impact of allogeneic transplant in patients with comorbidities has not been assessed. We retrospectively analyzed 181 consecutive patients who underwent AlloSCT from an HLA identical sibling following either myleoablative (n= 109) or NMA/RIC (n=71) conditioning regimens between January 2001 and December 2008. The HCT-CI score was calculated according to the method of Sorror, et al. (Sorror ML, et al. Blood. 2005 106: 2912–2919). Median follow-up of the entire cohort was 2 years. As previously published, there was a statistically significant correlation between HCT-CI and both non-relapse mortality (HR = 1.147, p = 0.0170,) and overall survival (HR = 1.152, p=0.0001) at 2-years of 23% and 50% respectively. We found statistically significant correlations between the HCT-CI score and total number of hospital readmissions (mean = 1.92; r=0.192; p = 0.0098) and total days in hospital after initial discharge from hospital after stem cell infusion (mean = 22.4 days; r=0.156; p = 0.036). Interestingly, the correlation for number of hospital days did not become statistically significant until 180 days or greater after transplantation. There was no correlation between HCT-CI with graft source, relapse or graft-vs.-host disease. When we stratified the HCT-CI to either myeloablative (N=109) or NMA/RIC (N=71) conditioning regimens, the correlations between the HCT-CI and both non-relapse mortality and overall survival were still statistically significant. The differences in days of hospitalization remained statistically significant in the myeloablative setting, but not in the NMA/RIC setting. In conclusion, our analysis of AlloSCT recipients found a correlation between the HCT-CI and the number of readmissions and hospital length of stay for myeloablative but not NMA/RIC conditioning regimens, suggesting a higher HCT-CI score results in greater use of hospital resources and costs. The increase in resource utilization is greater after the immediate post-transplant period. Whether these conclusions also apply in other transplant settings will need to be investigated. Disclosures: No relevant conflicts of interest to declare.


Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Magda Aguiar ◽  
Tracey-Lea Laba ◽  
Sarah Munro ◽  
Tiasha Burch ◽  
Jennifer Beckett ◽  
...  

Abstract Background Increasingly, it is argued that clinical trials struggle to recruit participants because they do not respond to key questions or study treatments that patients will be willing or able to use. This study explores how elicitation of patient-preferences can help designers of randomized controlled trials (RCTs) understand the impact of changing modifiable aspects of treatments or trial design on recruitment. Methods Focus groups and a discrete choice experiment (DCE) survey were used to elicit preferences of people with scleroderma for autologous hematopoietic stem cell transplant (AHSCT) treatment interventions. Preferences for seven attributes of treatment (effectiveness, immediate and long-term risk, care team composition and experience, cost, travel distance) were estimated using a mixed-logit model and used to predict participation in RCTs. Results Two hundred seventy-eight people with scleroderma answered the survey. All AHSCT treatment attributes significantly influenced preferences. Treatment effectiveness and risk of late complications contributed the most to participants’ choices, but modifiable factors of distance to treatment center and cost also affected preferences. Predicted recruitment rates calibrated with participation in a recent trial (33%) and suggest offering a treatment closer to home, at lower patient cost, and with holistic, multidisciplinary care could increase participation to 51%. Conclusions Through a patient engaged approach to preference elicitation for different features of AHSCT treatment options, we were able to predict what drives the decisions of people with scleroderma to participate in RCTs. Knowledge regarding concerns and the trade-offs people are willing to make can inform clinical study design, improving recruitment rates and potential uptake of the treatment of interest.


2021 ◽  
Vol 74 (suppl 1) ◽  
Author(s):  
Simone Martins Nascimento Piubello ◽  
Mitzy Tannia Reichembach ◽  
Leticia Pontes ◽  
Shirley Boller

ABSTRACT Objective: to describe the experience of building the technology "Care for the prevention of COVID-19 in post-hematopoietic stem cell transplant patients". Methods: experience report conducted in a hematopoietic stem cell transplant outpatient clinic that supported the construction of an educational technology in the form of a booklet for the prevention of COVID-19. In May 2020, a literature review in scientific databases and guidelines of health organizations were used for its development. Results: printed booklet with information on the definition of coronavirus, hand hygiene, use of the mask by the patient and caregiver, isolation and social distancing and general hygiene care. Final Considerations: the use of technologies is characterized as a tool for educational actions therefore, nurses, patients and caregivers benefit from guidance processes for health care. The developed technology has the potential to minimize the impact and spread of SARS-CoV-2 among high-risk populations.


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