Integration of Daily Patient-Reported Outcome Measures in Pediatric Stem Cell Transplantation

Article Infectious Diseases

What We Learn from Surveillance of Microbial Colonization in Recipients of Pediatric Hematopoietic Stem Cell Transplantation

Gabriele Kropshofer et al.

Summary: Microbial colonization surveillance does not provide significant benefits in pediatric HSCT recipients in terms of infection risk.

ANTIBIOTICS-BASEL (2023)

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Review Health Care Sciences & Services

A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review

Maria Rothmund et al.

Summary: This review evaluates the content validity of patient-reported outcome measures (PROMs) for health-related quality of life (HRQOL) in children with cancer. The results indicate limited evidence for the content validity of existing PROMs. Further research is needed to develop new measurement tools and strengthen the evidence for existing PROMs.

JOURNAL OF PATIENT-REPORTED OUTCOMES (2023)

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Article Endocrinology & Metabolism

Development of a Patient-Reported Outcome (PRO) Measure to Assess Emotional Impact of Treatment for Type 2 Diabetes

Kristina S. S. Boye et al.

Summary: This study aimed to explore the emotional impact of treatment for type 2 diabetes and support the development of a questionnaire to assess this impact. The results showed that treatment had both positive and negative emotional effects on patients, and the development of two questionnaires can provide a more comprehensive understanding of the patient experience.

DIABETES THERAPY (2023)

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Article Pediatrics

Allogeneic hematopoietic stem cell transplantation in infants is associated with significant morbidity and mortality

Christina Oikonomopoulou et al.

Summary: This study aimed to evaluate the impact of infancy on the outcome, toxicity, and complications after hematopoietic stem cell transplantation (HSCT). The study found that HSCT in infancy is associated with significant mortality and morbidity, possibly attributed to endogenous, age-related factors such as organ immaturity and immune system deficiency.

PEDIATRIC TRANSPLANTATION (2022)

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Review Oncology

Patient-reported outcomes are under-utilised in evaluating supportive therapies in paediatric oncology-A systematic review of clinical trial registries

Maria Rothmund et al.

Summary: This systematic review investigates the current practice of clinical outcome assessment (COA) in clinical trials on supportive interventions for children with cancer. The results indicate that less than half of the trials used patient reported outcome measures (PROMs), which is surprising considering the focus on improving quality of life in supportive care. The study underscores the need to address barriers to PROM implementation and improve patient reported outcome research in pediatric oncology.

CRITICAL REVIEWS IN ONCOLOGY HEMATOLOGY (2022)

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Article Medicine, General & Internal

Effect of Electronic Symptom Monitoring on Patient-Reported Outcomes Among Patients With Metastatic Cancer A Randomized Clinical Trial

Ethan Basch et al.

Summary: The use of electronic PRO surveys to monitor symptoms in cancer patients led to statistically significant improvements in physical function, symptom control, and HRQOL at 3 months compared to usual care, with mean improvements of approximately 2.5 points on a 0-100 point scale.

JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION (2022)

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Article Oncology

Results of an Innovative Program for Surveillance, Prophylaxis, and Treatment of Infectious Complications Following Allogeneic Stem Cell Transplantation in Hematological Malignancies (BATMO Protocol)

Michele Malagola et al.

Summary: The BATMO program for infection prevention and management in patients undergoing allogeneic haematopoietic stem cell transplantation (Allo-SCT) has shown positive outcomes, with a reduction in Clostridioides difficile infections and CMV reactivations. Although there was an increase in Gram-negative bloodstream infections in the early period, it did not translate into higher mortality. The use of posaconazole for prophylaxis balanced the risk of fungal infections.

FRONTIERS IN ONCOLOGY (2022)

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Article Medicine, General & Internal

Use of Daily Patient-Reported Outcome Measurements in Pediatric Cancer Care

Andreas Meryk et al.

Summary: The findings of this cohort study suggest that PROMs reflect daily symptoms in pediatric patients with cancer and assist in clinical management and intervention for adverse events.

JAMA NETWORK OPEN (2022)

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Article Hematology

Cytokine Release Syndrome during Antithymocyte Globulin/Anti-T Lymphocyte Globulin Serotherapy for Graft-versus-Host Disease Prophylaxis before Allogeneic Hematopoietic Stem Cell Transplantation: Incidence and Early Clinical Impact According to American Society of Transplantation and Cellular Therapy Grading Criteria

Hanna A. Knaus et al.

Summary: This study examined the incidence, characteristics, risk factors, and early clinical impact of cytokine release syndrome (CRS) during ATG/ATLG administration before allogeneic HSCT. It found an association between lymphoma, high ATLG dose, and body weight with CRS, as well as an increased risk of acute GVHD in patients with CRS.

TRANSPLANTATION AND CELLULAR THERAPY (2022)

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Article Oncology

Bridging the gap in outpatient care: Can a daily patient-reported outcome measure help?

Andreas Meryk et al.

Summary: This article presents a case of a child patient developing chemotherapy-induced oral mucositis at home, highlighting the importance of early symptom detection in improving patient care. The use of ePROtect provides convenience for patients and is essential for monitoring and intervening in the changing symptoms of patients in real time.

CANCER REPORTS (2022)

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Article Oncology

Underreporting of Symptomatic Adverse Events in Phase I Clinical Trials

Zachary W. Veitch et al.

Summary: In phase I clinical trials, there is poor to moderate agreement between patients and clinicians in reporting symptomatic adverse events, with clinicians often underreporting these events. Some symptoms, such as dyspnea and peripheral neuropathy, show higher agreement between patients and clinicians, while others exhibit significant discordance. Further analyses on severity and interference of PRO categories are ongoing.

JNCI-JOURNAL OF THE NATIONAL CANCER INSTITUTE (2021)

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Article Infectious Diseases

Which Type of Empiric Antibiotic Therapy is Appropriate? A 20-Year Retrospective Study of Bloodstream Infections in Childhood Cancer

Andreas Meryk et al.

Summary: The meropenem-based combination therapy provided sufficient antibiotic coverage in the majority of bloodstream infections, with a low rate of undesired side effects or development of antibiotic resistance.

INFECTIOUS DISEASES AND THERAPY (2021)

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Review Oncology

8th European Conference on Infections in Leukaemia: 2020 guidelines for the diagnosis, prevention, and treatment of invasive fungal diseases in paediatric patients with cancer or post-haematopoietic cell transplantation

Andreas H. Groll et al.

Summary: Paediatric patients with cancer and those undergoing allogeneic haematopoietic cell transplantation are more susceptible to invasive fungal diseases, posing unique challenges in treatment and requiring further research and optimization of therapy for pediatric invasive fungal diseases.

LANCET ONCOLOGY (2021)

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Review Oncology

Rare use of patient-reported outcomes in childhood cancer clinical trials-a systematic review of clinical trial registries

David Riedl et al.

Summary: This study found that the use of patient-reported outcomes (PROs) is extremely rare in pediatric oncology clinical trials, with only 8.2% of trials using PROs as endpoints and .6% as the primary endpoint. Despite recommendations from regulatory agencies, there is a significant gap between the recommended and actual use of PROs, with only 20.3% of closed studies publishing their results. More efforts should be made to promote the implementation of PROs in pediatric trials to ensure patient-centered research and treatments.

EUROPEAN JOURNAL OF CANCER (2021)

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Article Oncology

Implementation of daily patient-reported outcome measurements to support children with cancer

Andreas Meryk et al.

Summary: This study evaluated the feasibility and value of daily patient-reported outcome measures (PROMs) by children receiving chemotherapy for cancer, showing that daily symptom monitoring is feasible for all children with newly diagnosed cancer aged 5-18 years. Monitoring offers the opportunity to identify symptoms early and trigger appropriate clinical action.

PEDIATRIC BLOOD & CANCER (2021)

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Article Health Care Sciences & Services

Health-related quality of life predicts length of hospital stay and survival rates for pediatric patients receiving allogeneic hematopoietic cell transplantation

Ying-Mei Liu et al.

Summary: The study investigated the association between health-related quality of life (HRQoL) of pediatric patients during allogeneic hematopoietic cell transplantation (HCT) and length of hospital stay, and 1-year survival. Results showed that assessing HRQoL during early HCT can provide prognostic value beyond demographic and HCT factors, helping identify pediatric patients with low prospects of 1-year survival. Understanding the HRQoL status during hospitalization for HCT could lead to support interventions to improve HRQoL and survival rates.

QUALITY OF LIFE RESEARCH (2021)

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Article Pediatrics

Supportive Care During Pediatric Hematopoietic Stem Cell Transplantation: Prevention of Infections. A Report From Workshops on Supportive Care of the Paediatric Diseases Working Party (PDWP) of the European Society for Blood and Marrow Transplantation (EBMT)

Marianne Ifversen et al.

Summary: The lack of detailed supportive care protocols in international HSCT guidelines, especially regarding infection prophylaxis and daily life restrictions post-transplant, has led the Pediatric Diseases Working Party of the EBMT to initiate the development of minimal recommendations through dedicated workshops since 2017.

FRONTIERS IN PEDIATRICS (2021)

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Review Immunology

Guideline for Antibacterial Prophylaxis Administration in Pediatric Cancer and Hematopoietic Stem Cell Transplantation

Thomas Lehrnbecher et al.

CLINICAL INFECTIOUS DISEASES (2020)

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Article Biophysics

Current antimicrobial practice in febrile neutropenia across Europe and Asia: the EBMT Infectious Disease Working Party survey

Anke Verlinden et al.

BONE MARROW TRANSPLANTATION (2020)

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Article Surgery

Pediatric acute graft-versus-host disease prophylaxis and treatment: surveyed real-life approach reveals dissimilarities compared to published recommendations

Anita Lawitschka et al.

TRANSPLANT INTERNATIONAL (2020)

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Article Hematology

Addition of anti-thymocyte globulin to standard graft-versus-host disease prophylaxis versus standard treatment alone in patients with haematological malignancies undergoing transplantation from unrelated donors: final analysis of a randomised, open-label, multicentre, phase 3 trial

Irwin Walker et al.

LANCET HAEMATOLOGY (2020)

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Article Hematology

Benefits of risk-adapted and mould-specific antifungal prophylaxis in childhood leukaemia

Andreas Meryk et al.

BRITISH JOURNAL OF HAEMATOLOGY (2020)

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Review Health Care Sciences & Services

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

Laura C. Pinheiro et al.

QUALITY OF LIFE RESEARCH (2018)

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Article Biophysics

EBMT-NIH-CIBMTR Task Force position statement on standardized terminology & guidance for graft-versus-host disease assessment

Helene M. Schoemans et al.

BONE MARROW TRANSPLANTATION (2018)

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Review Hematology

Classification systems for chronic graft-versus-host disease

Stephanie J. Lee

BLOOD (2017)

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Letter Medicine, General & Internal

Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment

Ethan Basch et al.

JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION (2017)

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Article Oncology

Dose-Reduced Versus Standard Conditioning Followed by Allogeneic Stem-Cell Transplantation for Patients With Myelodysplastic Syndrome: A Prospective Randomized Phase III Study of the EBMT (RICMAC Trial)

Nicolaus Kroeger et al.

JOURNAL OF CLINICAL ONCOLOGY (2017)

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Review Immunology

Multidrug-resistant Enterobacteriaceae, Pseudomonas aeruginosa, and vancomycin-resistant Enterococcus: Three major threats to hematopoietic stem cell transplant recipients

Michael J. Satlin et al.

TRANSPLANT INFECTIOUS DISEASE (2017)

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Article Oncology

Centralized Patient-Reported Outcome Data Collection in Transplantation Is Feasible and Clinically Meaningful

Bronwen E. Shaw et al.

CANCER (2017)

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Review Biophysics

Venous thromboembolism in hematopoietic stem cell transplant recipients

S. Chaturvedi et al.

BONE MARROW TRANSPLANTATION (2016)

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Review Biophysics

Can we agree on patient-reported outcome measures for assessing hematopoietic cell transplantation patients? A study from the CIBMTR and BMT CTN

B. E. Shaw et al.

BONE MARROW TRANSPLANTATION (2016)

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Article Biophysics

Revised diagnosis and severity criteria for sinusoidal obstruction syndrome/veno-occlusive disease in adult patients: a new classification from the European Society for Blood and Marrow Transplantation

M. Mohty et al.

BONE MARROW TRANSPLANTATION (2016)

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Article Hematology

Expanding transplant options to patients over 50 years. Improved outcome after reduced intensity conditioning mismatched-unrelated donor transplantation for patients with acute myeloid leukemia: a report from the Acute Leukemia Working Party of the EBMT

Bipin N. Savani et al.

HAEMATOLOGICA (2016)

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Review Infectious Diseases

An overview of infectious complications after allogeneic hematopoietic stem cell transplantation

Ugur Sahin et al.

JOURNAL OF INFECTION AND CHEMOTHERAPY (2016)

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Article Oncology

Patient-reported outcomes in the evaluation of toxicity of anticancer treatments

Massimo Di Maio et al.

NATURE REVIEWS CLINICAL ONCOLOGY (2016)

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Article Oncology

Predictors of health-related quality of life over time among pediatric hematopoietic stem cell transplant recipients

Kristin A. Loiselle et al.

PEDIATRIC BLOOD & CANCER (2016)

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Review Oncology

The association between clinician-based common terminology criteria for adverse events (CTCAE) and patient-reported outcomes (PRO): a systematic review

Thomas M. Atkinson et al.

SUPPORTIVE CARE IN CANCER (2016)

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Article Oncology

RIC versus MAC UCBT in adults with AML: A report from Eurocord, the ALWP and the CTIWP of the EBMT

Frederic Baron et al.

ONCOTARGET (2016)

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Article Hematology

Expanding transplant options to patients over 50 years. Improved outcome after reduced intensity conditioning mismatched-unrelated donor transplantation for patients with acute myeloid leukemia: a report from the Acute Leukemia Working Party of the EBMT

Bipin N. Savani et al.

HAEMATOLOGICA (2016)

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Review Hematology

How I manage sinusoidal obstruction syndrome after haematopoietic cell transplantation

Enric Carreras

BRITISH JOURNAL OF HAEMATOLOGY (2015)

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Article Biophysics

Health-related quality of life in pediatric patients after allogeneic SCT: development of the PedsQL Stem Cell Transplant module and results of a pilot study

A. Lawitschka et al.

BONE MARROW TRANSPLANTATION (2014)

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Review Oncology

What Is the Value of the Routine Use of Patient-Reported Outcome Measures Toward Improvement of Patient Outcomes, Processes of Care, and Health Service Outcomes in Cancer Care? A Systematic Review of Controlled Trials

Grigorios Kotronoulas et al.

JOURNAL OF CLINICAL ONCOLOGY (2014)

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Article Oncology

Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Joanne Wolfe et al.

JOURNAL OF CLINICAL ONCOLOGY (2014)

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Article Biophysics

Pediatric allo-SCT for malignant and non-malignant diseases: impact on health-related quality of life outcomes

J. A. Oberg et al.

BONE MARROW TRANSPLANTATION (2013)

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Article Economics

Pediatric Patient-Reported Outcome Instruments for Research to Support Medical Product Labeling: Report of the ISPOR PRO Good Research Practices for the Assessment of Children and Adolescents Task Force

Louis S. Matza et al.

VALUE IN HEALTH (2013)

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Review Hematology

First- and Second-Line Systemic Treatment of Acute Graft-versus-Host Disease: Recommendations of the American Society of Blood and Marrow Transplantation

Paul J. Martin et al.

BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION (2012)

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Review Biophysics

Predictors of health-related quality of life in patients treated with auto- and allo-SCT for hematological malignancies

A. M. J. Braamse et al.

BONE MARROW TRANSPLANTATION (2012)

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Article Biophysics

Differences in mothers' and fathers' health-related quality of life after pediatric SCT: a longitudinal study

M. Barrera et al.

BONE MARROW TRANSPLANTATION (2012)

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Article Biophysics

A prospective evaluation of patients' health-related quality of life during auto-SCT: a 3-year follow-up

U. Frodin et al.

BONE MARROW TRANSPLANTATION (2011)

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Review Hematology

Health-related quality of life following haematopoietic cell transplantation: patient education, evaluation and intervention

Joseph Pidala et al.

BRITISH JOURNAL OF HAEMATOLOGY (2010)

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Article Health Care Sciences & Services

The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008

David Cella et al.

JOURNAL OF CLINICAL EPIDEMIOLOGY (2010)

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Article Hematology

Defining the Intensity of Conditioning Regimens: Working Definitions

Andrea Bacigalupo et al.

BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION (2009)

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Article Biophysics

Health-related quality of life in adult survivors after paediatric allo-SCT

C. M. Lof et al.

BONE MARROW TRANSPLANTATION (2009)

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Review Medicine, General & Internal

Graft-versus-host disease

James L. M. Ferrara et al.

LANCET (2009)

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Review Oncology

Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature

Catherine E. Mosher et al.

PSYCHO-ONCOLOGY (2009)

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Review Oncology

The prognostic significance of patient-reported outcomes in cancer clinical trials

Carolyn C. Gotay et al.

JOURNAL OF CLINICAL ONCOLOGY (2008)

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Article Oncology

How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the Quality-of-Life Questionnaire C30

EK Fromme et al.

JOURNAL OF CLINICAL ONCOLOGY (2004)

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Article Biophysics

Acute health-related quality of life in children undergoing stem cell transplant: I. Descriptive outcomes

S Phipps et al.

BONE MARROW TRANSPLANTATION (2002)

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Article Biophysics

Statement of current majority practices in graft-versus-host disease prophylaxis and treatment in children

C Peters et al.

BONE MARROW TRANSPLANTATION (2000)

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Integration of Daily Patient-Reported Outcome Measures in Pediatric Stem Cell Transplantation

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