Children's Oncology Group's 2013 blueprint for research: Behavioral science

Noll, Robert B.; Patel, Sunita K.; Embry, Leanne; Hardy, Kristina K.; Pelletier, Wendy; Annett, Robert D.; Patenaude, Andrea Farkas; Lown, E. Anne; Sands, Stephen A.; Barakat, Lamia P.

doi:10.1002/pbc.24421

Cited by 38 publications

(33 citation statements)

References 67 publications

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“…According to the Children's Oncology Group's 2013 blueprint for research, over the next 5 years, the field of nursing and psychosocial science needs to translate empirical supported research into practice [3,23]. As most studies in this review are descriptive or comparative [32], this is not an easy task for clinical staff.…”

Section: Discussionmentioning

confidence: 99%

“…Early work focused on symptom relief, related to the side effects of chemotherapy, and pain management related to invasive medical procedures. As survival rates improved, the focus has shifted to descriptive studies examining the psychosocial impact on children and their families during and after treatment [3].…”

Section: Introductionmentioning

confidence: 99%

“…Over the next five years, according to the Children's Oncology Group's 2013 blueprint for research, the field of nursing and psychosocial science needs to translate empirical research into practice [3,23]. This requires that research is solid and based clinically relevant issues, and that staff use research to continue to evolve knowledge within paediatric oncology caring [28].…”

Section: Introductionmentioning

confidence: 99%

“…The prioritized care recommendations were formed into five categories: Medical care, Communication, Education and training, General quality measures, and Structural facilities of care. Caring issues were sparsely included in those recommendations, even though several authors have pointed out the need for structured psychosocial care [3,[21][22] and quality nursing care [23] as well as benefits of such interventions [24]. Patenaude and Kupst [9] reviewed research on psychosocial paediatric oncology research, and found that in the past 30 years paediatric oncology care has gone through changes from avoidance of communication about cancer to an emphasis on straightforward discussion of the illness and prognosis.…”

Section: Introductionmentioning

confidence: 99%

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A literature Review of the Results from Nursing and Psychosocial Research within Swedish Pediatric Oncology

Enskär

Knutsson²,

Huus³

et al. 2013

J Nurs Care

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A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology. Nursing & Care, 3(6) Journal of AbstractThe body of research-based knowledge in paediatric caring science has been increasing leading to dramatic improvements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', in recently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. This was done through a review of 137 published articles about paediatric oncology related to caring science in Sweden. The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone coming into contact with the child. The cancer also causes distress related to all aspects of life including physical, psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease and treatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and external support, and the identity of the person reporting the data. Health promoting aspects frequently reported are: family togetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotional support, information and family participation in care. The hospital staff has to be aware of the psychosocial issues experienced by children with cancer and their families, and they have to acknowledge the value of formal interventions, reporting benefits for children, families, and themselves.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A literature Review of the Results from Nursing and Psychosocial Research within Swedish Pediatric Oncology

Enskär

Knutsson²,

Huus³

et al. 2013

J Nurs Care

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“…This evaluation tool takes approximately 1 h to administer and is overseen by a psychologist. To date, several pediatric brain tumor trials including ACNS0331, ACNS0831 and ACNS1123 have incorporated ALTE07C1 as either a primary or secondary outcome [51]. The most notable barrier to ALTE07C1 compliance is the requirement of a psychologist for test administration.…”

Section: Neurocognitive Outcomesmentioning

confidence: 99%

Clinical trials in pediatric neuro-oncology: what is missing and how we can improve

2016

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Brain tumors are the most common solid tumor in childhood, yet outcomes vary dramatically. High-grade gliomas have dismal outcomes with poor survival. By contrast, low-grade gliomas, have high survival rates, but children suffer from morbidity of tumor burden and therapy-associated side effects. In this article, we discuss how current trial designs often miss the opportunity to include end points beyond tumor response and thus fail to offer complete assessments of therapeutic approaches. Quality of life, neurocognitive function and neurofunctional deficits need to be considered when assessing overall success of a therapy. Herein, we identify specific end points that should be included in the interpretation of clinical trial results and accordingly, offer a more comprehensive approach to treatment decision-making. • As a whole, treatment for pediatric brain tumors has greatly improved survival; however, patients can suffer from a myriad of treatment-related morbidities.• In particular, pediatric patients with low-grade tumors frequently go on to survive their tumor, but carry substantial burden related to prior treatments.• Quality of life (QoL), decreased neurocognitive ability and neurofunctional impairments are notable concerns for long-term survivors of pediatric brain tumors and these domains should be assessed when determining treatment strategies.• Historically, clinical trials have not adequately assessed QoL, neurocognition and neurofunctioning. These parameters deserve more attention and should be included as primary or secondary end points of clinical trials.• The Pediatric Quality of Life scales have been validated in the pediatric population and can effectively assess QoL in pediatric brain tumor patients.• Validated neurocognitive assessments such as CogState and the NIH Toolbox can play an important role in the evaluation of neurocognition in pediatric brain tumor patients.• Long-term motor, vision and hearing impairments may occur as a result of tumor and treatment in pediatric brain tumor patients and should be included in pediatric brain tumor clinical trial outcomes. BackgroundIn the USA, the number of adult survivors of pediatric brain tumors has been steadily increasing over recent years. The average 5-year survival rate for all-comers of pediatric brain cancers has risen to approximately 73% [1]. However, there is a broad range of survivorship depending on tumor type. Pure germinomas and pilocytic astrocytomas have 5-year survival rates greater than 90%; however, for diffuse intrinsic pontine glioma and other high-grade gliomas, outcomes remain extremely poor [2][3][4][5]. The main clinical trial objective for brain tumors with poor prognoses is to improve survival; however, quality of life (QoL) remains an important aspect for these children -especially if median survival is relatively short. Though, the current article is not focusing on explicit recommendations for highly aggressive tumors, QoL measures should still be addressed in trials for this group given the conceivably higher impor...

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Implementing the psychosocial standards in pediatric cancer: Current staffing and services available

Scialla

Canter

Chen

et al. 2017

Pediatric Blood & Cancer

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Background Fifteen evidence-based Standards for Psychosocial Care for Children with Cancer and their Families were published in 20151. The Standards cover a broad range of topics and circumstances and require qualified multidisciplinary staff to be implemented. This paper presents data on the availability of psychosocial staff and existing practices at pediatric oncology programs in the United States, providing data that can be used to advocate for expanded services and prepare for implementation of the Standards. Procedure Up to three healthcare professionals from 144 programs (72% response rate) participated in an online survey conducted June – December 2016. There were 99 pediatric oncologists with clinical leadership responsibility (Medical Director/Clinical Director), 132 psychosocial leaders in pediatric oncology (Director of Psychosocial Services/Manager/most senior staff member), and 58 administrators in pediatric oncology (Administrative Director/Business Administrator/Director of Operations). The primary outcomes were number and type of psychosocial staff, psychosocial practices, and identified challenges in the delivery of psychosocial care. Results Over 90% of programs have social workers and child life specialists who provide care to children with cancer and their families. Fewer programs have psychologists (60%), neuropsychologists (31%) or psychiatrists (19%). Challenges in psychosocial care are primarily based on pragmatic issues related to funding and reimbursement. Conclusion Most participating pediatric oncology programs appear to have at least the basic level of staffing necessary to implement of some of the Standards. However, the lack of a more comprehensive multidisciplinary team is a likely barrier in the implementation of the full set of Standards.

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Children's Oncology Group's 2013 blueprint for research: Behavioral science

Cited by 38 publications

References 67 publications

A literature Review of the Results from Nursing and Psychosocial Research within Swedish Pediatric Oncology

A literature Review of the Results from Nursing and Psychosocial Research within Swedish Pediatric Oncology

Clinical trials in pediatric neuro-oncology: what is missing and how we can improve

Implementing the psychosocial standards in pediatric cancer: Current staffing and services available

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