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1.
Pediatr Blood Cancer ; 71(4): e30845, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38192171

ABSTRACT

BACKGROUND: Anti-GD2 antibodies are key components of treatment for high-risk neuroblastoma; however, they cause neuropathic pain. Yoga therapy may help reduce pain and distress associated with anti-GD2 therapy. PROCEDURE: Children 3 years of age or older with neuroblastoma participated in individualized yoga therapy while receiving the anti-GD2 antibody dinutuximab (DIN). Yoga therapy was deemed feasible if patients participated during 60% or more of DIN admissions. Patients and caregivers assessed pain/distress before and after yoga therapy with a distress thermometer (DT) and Wong-Baker FACES pain rating scale and completed questionnaires regarding satisfaction with yoga therapy. Therapy was deemed efficacious if there was a ≥1 point pain score change and reduction in distress after yoga. RESULTS: Eighteen patients were enrolled; 52 encounters (admissions for DIN) were evaluable. Ten of 18 were female, three of 18 were Hispanic, and 10/18 were White. Median age at enrollment was 5.5 years (range: 3-11). Yoga therapy was feasible in 39/52 (75%) encounters. Significant reductions in caregiver-reported pain and distress and reductions in patient-reported pain and distress after yoga therapy were reported. Twelve of 18 caregivers completed questionnaires: seven agreed/strongly agreed that yoga was valuable, and nine agreed/strongly agreed to continued participation in yoga. Thirty-four of 36 clinicians reported that they would recommend yoga therapy for other patients receiving DIN. CONCLUSIONS: Yoga therapy was feasible during DIN therapy and may be effective in reducing DIN-associated pain and distress. Future studies are needed to evaluate changes in opioid usage with the addition of yoga therapy during anti-GD2 antibody therapy.


Subject(s)
Neuralgia , Neuroblastoma , Yoga , Child , Humans , Female , Child, Preschool , Male , Neuroblastoma/drug therapy , Antibodies, Monoclonal/adverse effects , Neuralgia/chemically induced
3.
Nurs Res ; 73(2): 166-171, 2024.
Article in English | MEDLINE | ID: mdl-38112626

ABSTRACT

BACKGROUND: Intervention fidelity is a critical element of randomized controlled trials, yet reporting of intervention fidelity among attention control arms is limited. Lack of fidelity to attention control procedures can affect study outcomes by either overestimating or underestimating the efficacy of the intervention under examination. OBJECTIVES: This brief report describes the approach researchers took to promote fidelity to the attention control arm of a pediatric palliative care randomized controlled trial funded by the National Institutes of Health. METHODS: The Informational Meetings for Planning and Coordinating Treatment trial aims to determine the efficacy of a communication intervention that uses care team dyads (i.e., physicians partnered with nurses or advanced practice providers) to engage parents of children with cancer who have a poor prognosis in structured conversations about prognostic information, goals of care, and care planning. The intervention is compared with an attention control arm, which provides parents with structured conversations on common pediatric cancer education topics, such as talking to their child about their cancer, clinical trials, cancer treatment, side effects, and so forth. National Institutes of Health guidelines for assessing and implementing strategies to promote intervention fidelity were used to design (a) the attention control arm of a randomized controlled trial, (b) related attention control arm training, and (c) quality assurance monitoring. RESULTS: Attention control study procedures were designed to mirror that of the intervention arm (i.e., same number, frequency, and time spent in study visits). Cluster randomization was used to allocate care team dyads to one arm of the randomized controlled trial. Care team dyads assigned to the attention control arm participated in online training sessions to learn attention control procedures, the different roles of research team members, and quality assurance methods. Fidelity to attention control procedures is assessed by both the interveners themselves and a quality assurance team. DISCUSSION: Study design, training, and delivery are all critical to attention control fidelity. Baseline training often needs to be supplemented with booster training when time gaps occur between study start-up and implementation. Quality assurance procedures are essential to determine whether interveners consistently deliver attention control procedures correctly.


Subject(s)
Communication , Parents , Humans , Child , Palliative Care , Research Design , Randomized Controlled Trials as Topic
4.
BMJ Case Rep ; 15(8)2022 Aug 29.
Article in English | MEDLINE | ID: mdl-36038153

ABSTRACT

In this report, we describe the case of an adolescent male with an unusual case of fusion-negative, paratesticular alveolar rhabdomyosarcoma who presented with spontaneous tumour lysis syndrome and diffuse bony metastases throughout the axial and appendicular skeleton with additional significant bone marrow involvement. Both spontaneous tumour lysis syndrome and diffuse bony metastases are extremely unusual for rhabdomyosarcoma. On the backbone of standard vincristine, dactinomycin and cyclophosphamide (VAC) chemotherapy, the only local control was orchiectomy at 15 weeks, with no radiation administered due to the initially diffuse nature of the disease and rapid response to chemotherapy. Following 43 weeks of VAC, a year-long maintenance phase with pazopanib was given which was well tolerated. The patient remains in remission now 4 years after completion of therapy.


Subject(s)
Bone Marrow Diseases , Bone Neoplasms , Genital Neoplasms, Male , Rhabdomyosarcoma, Embryonal , Rhabdomyosarcoma , Tumor Lysis Syndrome , Adolescent , Antineoplastic Combined Chemotherapy Protocols , Bone Marrow Diseases/chemically induced , Bone Neoplasms/drug therapy , Bone Neoplasms/secondary , Cyclophosphamide , Dactinomycin/therapeutic use , Genital Neoplasms, Male/drug therapy , Humans , Male , Rhabdomyosarcoma/drug therapy , Rhabdomyosarcoma/pathology , Rhabdomyosarcoma, Embryonal/drug therapy , Tumor Lysis Syndrome/etiology , Vincristine
5.
J Pediatr Hematol Oncol ; 44(5): 230-236, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35041359

ABSTRACT

OBJECTIVE: We sought to describe palliative care services available to children with cancer along with pediatric oncologists' current and ideal practices of palliative care involvement in children with cancer. DESIGN: A novel survey tool was administered via REDCap to attending pediatric oncologists in the United States. The survey remained open from June to September 2020. RESULTS: A total of 265 survey responses were evaluated. Most respondents endorsed that palliative care should "always" be consulted for the following scenarios: new diagnosis of advanced/metastatic disease (53%), uncontrolled symptoms (65%), bone marrow transplant (55%), and relapsed/refractory disease (73%). For those same scenarios, the majority noted the current practice was to "sometimes" or "usually" consult. Most respondents (92.6%) felt that palliative care should be consulted more frequently than they were currently being consulted. CONCLUSIONS: Compared with the current practice for various pediatric oncology departments, palliative care was not consulted as often as oncologists desired. While barriers to palliative care consultation are outlined in the literature, exploration of how to address them as well as identification of barriers specific to oncologists who are in favor of palliative care consultation are not well-described. Further research exploring these specific barriers is necessary to understand the disconnect between oncologists' attitudes and palliative care consultation.


Subject(s)
Neoplasms , Oncologists , Attitude of Health Personnel , Child , Humans , Neoplasms/therapy , Palliative Care , Referral and Consultation , United States
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