Participation in a clinical trial for a child with cancer is burdensome for a minority of children

Geest, Ivana M.M. van der; Heuvel‐Eibrink, Marry M. van den; Zwaan, C. Michel; Pieters, Rob; Passchier, Jan; Darlington, Anne‐Sophie

doi:10.1111/apa.13405

Cited by 7 publications

(4 citation statements)

References 33 publications

(51 reference statements)

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“…This is in agreement with the results of a previous study by van der Geest et al, who investigated participation in clinical trials of children with incurable cancers. They demonstrated that less than one-third of the patients participate in a clinical trial [17], which might be explained by (i) the ethical dilemma’s health care professionals face regarding mandatory parts of the trials, i.e. biopsies with no direct benefit for the patient; (ii) the travel distance to a study center, resulting in parents declining participation in the trial; and (iii) cultural differences.…”

Section: Discussionmentioning

confidence: 99%

Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?

et al. 2019

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Introduction Diffuse intrinsic pontine glioma (DIPG) is a rare clinically, neuro-radiologically, and molecularly defined malignancy of the brainstem with a median overall survival of approximately 11 months. Our aim is to evaluate the current tendency for its treatment in Europe in order to develop (inter)national consensus guidelines. Methods Healthcare professionals specialized in DIPG were asked to fill in an online survey with questions regarding usual treatment strategies at diagnosis and at disease progression in their countries and/or their centers, respectively. Results Seventy-four healthcare professionals responded to the survey, of which 87.8% were pediatric oncologists. Only 13.5% of the respondents biopsy all of their patients, 41.9% biopsy their patients infrequently. More than half of the respondents (54.1%) treated their patients with radiotherapy only at diagnosis, whereas 44.6% preferred radiotherapy combined with chemotherapy. When the disease progresses, treatment strategies became even more diverse, and the tendency for no treatment increased from 1.4% at diagnosis to 77.0% after second progression. 36.5% of the healthcare professionals treat children younger than 3 years differently than older children at diagnosis. This percentage decreased, when the disease progresses. Most of the participants (51.4%) included less than 25% of their patients in clinical trials. Conclusion This survey demonstrates a large heterogeneity of treatment regimens, especially at disease progression. We emphasize the need for international consensus guidelines for the treatment of DIPG, possible by more collaborative clinical trials.

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Section: Discussionmentioning

confidence: 99%

Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?

et al. 2019

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“…Most patients wanted to participate in research to help other children, but also thought that the treatments they were receiving were the best options for their diseases, rather than seeing them as part of the studies [ 13 ]. Several end-of-life studies in adolescent oncology patients have also shown that parents and children alike choose to participate in research studies due to a desire to help others and prevent the experience of similar suffering [ 14 , 15 ]. In fact, when surveying caregivers of patients who had died as a result of their oncologic processes, none of the caregivers rescinded their consent to participate in research studies [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

“…Several end-of-life studies in adolescent oncology patients have also shown that parents and children alike choose to participate in research studies due to a desire to help others and prevent the experience of similar suffering [ 14 , 15 ]. In fact, when surveying caregivers of patients who had died as a result of their oncologic processes, none of the caregivers rescinded their consent to participate in research studies [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

Caregiver Perspectives on Patient Participation in Biological Pediatric Cancer Research

et al. 2022

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Adolescent cancer patients and their caregivers have demonstrated willingness to participate in invasive biological sampling, either for their own potential benefit or for research purposes. However, many malignancies occur primarily in prepubescent patients and there are no similar studies in this population. Our study objective was to assess the willingness of caregivers to consent to research studies involving invasive biological sampling in children ≤ 13 years of age. Participants completed a survey assessing their willingness to allow various procedures both with and without clinical benefit to their children. Most respondents were willing to allow additional blood draws regardless of potential benefit to their children (95.6% were willing when there would be benefits and 95.6% were willing when there would not). Although the overall willingness was lower with other hypothetical procedures, the majority of respondents were still willing to allow additional biopsies for research purposes. Caregivers of young children with cancer will allow their children to undergo additional invasive procedures for research purposes. This willingness decreased with more invasive procedures without potential direct benefit, but interest remained in more than half of participants. Caregivers for young patients with cancer should be approached for participation in future biological/correlative studies.

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“…31 There are also an increasing number of early-phase clinical trials available in the context of refractory or relapsed disease. 32 While these studies may hold out the hope for a cure through the use of innovative and personalised therapies, 33,34 outcome is uncertain and participation may lead to increased burden through hospitalisations or side effects. 35 This is also the case when CYP undergo haematopoietic stem cell transplant.…”

Section: Why Is Paediatric Palliative Care Important To Children and ...mentioning

confidence: 99%

Embracing paediatric palliative care in paediatric oncology from diagnosis onwards

Lacerda

Martínez

Dumont

et al. 2023

Pediatric Blood & Cancer

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Paediatric palliative care aims to support children and young people with life‐limiting or life‐threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, whatever the outcome may be. Through improved communication and advance care planning, it enables user‐centred care, where concerns about quality of life, preferences and values are given the same relevance as cutting‐edge therapy. Challenges to the integration of palliative care within paediatric oncology include raising awareness and providing education, whilst searching for the best care model and adapting to an ever‐changing therapeutic scenario.

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Participation in a clinical trial for a child with cancer is burdensome for a minority of children

Abstract: Performing clinical trials, even in a vulnerable population, such as children with cancer at the end of life, may not always lead to increased burden. None of the parents would in future, given the same circumstances, decline participation in a clinical trial.

Cited by 7 publications

References 33 publications

Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?

Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?

Caregiver Perspectives on Patient Participation in Biological Pediatric Cancer Research

Embracing paediatric palliative care in paediatric oncology from diagnosis onwards

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