| 1. |
- Feijen, Elizabeth A M, et al.
(author)
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Late cardiac events after childhood cancer : Methodological aspects of the pan-european study pancaresurfup
- 2016
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In: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 11:9
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Journal article (peer-reviewed)abstract
- Background and Aim Childhood cancer survivors are at high risk of long-term adverse effects of cancer and its treatment, including cardiac events. The pan-European PanCareSurFup study determined the incidence and risk factors for cardiac events among childhood cancer survivors. The aim of this article is to describe the methodology of the cardiac cohort and nested case-control study within PanCareSurFup. Methods Eight data providers in Europe participating in PanCareSurFup identified and validated symptomatic cardiac events in their cohorts of childhood cancer survivors. Data onsymptomatic heart failure, ischemia, pericarditis, valvular disease and arrhythmia were collected and graded according to the Criteria for Adverse Events. Detailed treatment data, data on potential confounders, lifestyle related risk factors and general health problems were collected. Results The PanCareSurFup cardiac cohort consisted of 59,915 5-year childhood cancer survivors with malignancies diagnosed between 1940 and 2009 and classified according to the International Classification of Childhood Cancer 3. Different strategies were used to identify cardiac events such as record linkage to population/ hospital or regional based databases, and patient-And general practitioner-based questionnaires. Conclusion The cardiac study of the European collaborative research project PanCareSurFup will provide the largest cohort of 5-year childhood cancer survivors with systematically ascertained and validated data on symptomatic cardiac events. The result of this study can provide information to minimize the burden of cardiac events in childhood cancer survivors by tailoring the follow-up of childhood cancer survivors at high risk of cardiac adverse events, transferring this knowledge into evidence-based clinical practice guidelines and providing a platformfor future research studies in childhood cancer patients.
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| 2. |
- Irestorm, Elin, et al.
(author)
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Fatigue trajectories during pediatric ALL therapy are associated with fatigue after treatment: a national longitudinal cohort study
- 2023
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 1433-7339 .- 0941-4355. ; 31:1, s. 1-9
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Journal article (peer-reviewed)abstract
- Objective: Fatigue is one of the most prevalent and distressing symptoms reported by survivors of childhood cancer. There is currently a lack of longitudinal studies on cancer-related fatigue, and especially on the relationship between the course of fatigue during treatment and fatigue at follow-up. The purpose of the current study was therefore to investigate if the course of fatigue during treatment, treatment intensity, serious adverse events, sex, or age at diagnosis are associated with cancer-related fatigue after treatment.Methods: Participants were 92 children and adolescents diagnosed with acute lymphoblastic leukemia (mean age at diagnosis was 6.26 years). Fatigue was measured with PedsQL multidimensional fatigue scale proxy reports 5 months after diagnosis,12 months after diagnosis, 24 months after diagnosis, and at follow-up 12 months after end of treatment. The effect of patient and treatment characteristics on fatigue reported at follow-up was tested through logistic regression analyses.Results: The course of fatigue during treatment signifcantly predicted fatigue reported at follow-up for general fatigue (p=.038, OR=9.20), sleep/rest fatigue (p=.011, OR=15.48), and cognitive fatigue (pConclusions The fndings demonstrate that fatigue reported during treatment can predict fatigue at follow-up. These results stress the need for longitudinal assessments. Healthcare professionals need to be aware that pediatric patients who are fatigued during treatment need to receive additional attention and timely interventions since cancer-related fatigue will not resolve by itself in the frst year after end of treatment.
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| 3. |
- Jong, Miek C., 1968-, et al.
(author)
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Development of an evidence-based decision aid on complementary and alternative medicine (CAM) and pain for parents of children with cancer
- 2020
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 28, s. 2415-2429
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Journal article (peer-reviewed)abstract
- Purpose: To develop an evidence-based decision aid for parents of children with cancer and to help guide them in the use ofcomplementary and alternative medicine (CAM) for cancer care.Methods: This study had a mixed research design. The needs of parents were investigated by survey and focus group. Asystematic review and meta-analysis were performed on the effectiveness of CAM using Grading of RecommendationsAssessment, Development and Evaluation (GRADE). Clinical experts were interviewed and a decision aid on CAM treatmentfor pain was developed.Results: Parents emphasized the importance of reliable information on CAM, focusing primarily on communication and a broadspectrum of complaints related to cancer treatment. The decision aid on CAM for pain included five modalities based on 11randomized control trials (RCTs): hypnotherapy, mind-body techniques, massage, healing touch, and music therapy. Metaanalysis could be performed on hypnotherapy, which significantly reduced cancer-related procedural pain compared withstandard care (MD, − 1.37; 95% CI, − 1.60, − 1.15; P < 0.00001) and attention control (MD, − 1.13; 95% CI, − 1.34, − 0.94;P < 0.00001), and massage, demonstrating no effect on pain compared with standard care (MD, − 0.77; 95% CI, − 1.82, 0.28;P = 0.15). Research evidence and supplementary information from clinical practice and patient were incorporated in a websitebased decision aid.Conclusions: An evidence-based decision aid was developed to support parents of children with cancer in making decisions aboutCAM for pain management. Next steps will be to expand the website to include additional childhood cancer-related complaintsand to evaluate its use in practice
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| 4. |
- Loeffen, Erik A. H., et al.
(author)
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Reducing pain and distress related to needle procedures in children with cancer : A clinical practice guideline
- 2020
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In: European Journal of Cancer. - : Elsevier BV. - 0959-8049 .- 1879-0852. ; 131, s. 53-67
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Research review (peer-reviewed)abstract
- Background: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress.Methods: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents.Results: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures.Conclusion: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families.
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| 5. |
- Loeffen, Erik A. H., et al.
(author)
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Reducing pain in children with cancer : Methodology for the development of a clinical practice guideline
- 2019
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In: Pediatric Blood & Cancer. - : Wiley. - 1545-5009 .- 1545-5017. ; 66:6
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Journal article (peer-reviewed)abstract
- Although pain is one of the most prevalent and bothersome symptoms children with cancer experience, evidence-based guidance regarding assessment and management is lacking. With 44 international, multidisciplinary healthcare professionals and nine patient representatives, we aimed to develop a clinical practice guideline (following GRADE methodology), addressing assessment and pharmacological, psychological, and physical management of tumor-, treatment-, and procedure-related pain in children with cancer. In this paper, we present our thorough methodology for this development, including the challenges we faced and how we approached these. This lays the foundation for our clinical practice guideline, for which there is a high clinical demand.
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| 6. |
- Mulder, Renée L., et al.
(author)
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Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer : recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group
- 2021
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In: The Lancet Oncology. - 1470-2045 .- 1474-5488. ; 22:2, s. 68-80
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Research review (peer-reviewed)abstract
- Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.
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