scholarly journals Pediatric patients report lower Health‐Related Quality of Life in daily clinical practice compared to new normative PedsQL TM data

2021 ◽  
Author(s):  
Maud M. van Muilekom ◽  
Michiel A.J. Luijten ◽  
Hedy A. van Oers ◽  
Thirsa Conijn ◽  
Heleen Maurice‐Stam ◽  
...  
2010 ◽  
Vol 8 (1) ◽  
pp. 43 ◽  
Author(s):  
Maurizio Bossola ◽  
Rita Murri ◽  
Graziano Onder ◽  
Adriana Turriziani ◽  
Massimo Fantoni ◽  
...  

Hematology ◽  
2010 ◽  
Vol 2010 (1) ◽  
pp. 248-254 ◽  
Author(s):  
Margaret Bevans

Abstract It is common knowledge that an allogeneic hematopoietic stem cell transplantation (HSCT) will have an enormous impact on the lives of transplant recipients and their families. Once an appropriate donor is identified, the curative potential of this treatment often drives the decision to proceed knowing that there will be intense physiologic toxicities and adverse effects on health-related quality of life (HRQL). Twenty-five years ago, HRQL was identified as an efficacy parameter in the evaluation of new anticancer drug therapy. Overall, the evidence suggests that an allogeneic HSCT has a significant impact on the overall HRQL of recipients, which is a result of decrements across all dimensions, including a significant symptom profile. The degree of impact on overall HRQL and the multiple dimensions varies across the transplant trajectory. Specific HRQL dimensions, such as physical function and symptoms, are easily incorporated into a clinician's assessment whereas other dimensions (eg, psychosocial) are less commonly integrated. The translation of HRQL results to improve clinical practice is not well established. Clinicians are often uncertain when to assess the scope of HRQL and how to interpret the information in a clinically meaningful way. The purpose of this review is to highlight the quality-of-life effects of allogeneic HSCT and discuss application into clinical practice.


2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Helene Werner ◽  
Phaedra Lehmann ◽  
Alina Rüegg ◽  
Silvia Hilfiker ◽  
Karin Steinmann ◽  
...  

Abstract Background Little is known about health-related quality of life (HRQoL) in pediatric patients with cardiac rhythm devices. This study aims to compare self- and proxy-reported HRQoL in patients with pacemaker (PM) and implantable cardioverter-defibrillator (ICD) to that in sex- and age-matched healthy controls and to examine predictors for generic and disease-specific HRQoL. Methods The study included 72 PM and ICD patients (39% females) and 72 sex- and age-matched healthy controls from 3 to 18 years of age. HRQoL data was obtained by the PedsQL 4.0 Generic Core Scales and Pediatric Cardiac Quality of Life Inventory. Medical data was collected retrospectively from medical records. Results Patients had significantly lower self- and proxy-reported generic overall HRQoL and lower physical health than healthy controls, and ICD patients also had lower psychosocial health. On multivariate analyses, generic overall HRQoL and physical health was significantly predicted by current cardiac medication (β = −.39, p = .02 for overall HRQoL, respectively β = −.44, p = .006 for physical health). Disease-specific overall HRQoL was only marginally predicted by child age, device type, and the presence of a structural congenital heart disease (p < .10). Conclusions This study shows that PM and ICD patients have lower HRQoL than healthy controls and that patients who need cardiac medication are seen by their parents at great risk for lower generic overall HRQoL. Our study also indicates a trend towards higher risk for low disease-specific HRQoL in younger patients, ICD patients, and patients with a structural congenital heart disease. Special attention should be given to these patients as they may benefit from a timely clinical evaluation in order to provide supportive interventions.


2016 ◽  
Vol 138 (1) ◽  
pp. 175-187 ◽  
Author(s):  
Viridiana J. Tapia ◽  
Sherise Epstein ◽  
Oresta S. Tolmach ◽  
Abdul S. Hassan ◽  
Natalie N. Chung ◽  
...  

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