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1.
Article En | MEDLINE | ID: mdl-38526577

Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.

2.
J Adolesc Young Adult Oncol ; 12(3): 425-432, 2023 Jun.
Article En | MEDLINE | ID: mdl-36000974

Parents of adolescents with cancer (AWC) provide critical support throughout the cancer journey and could offer key insights into support needs. This prospective study aimed to obtain parent perspectives on peer support needs of AWC. Ten individual parents (9 mothers and 1 father) completed a survey and a semistructured interview. Four themes were identified: cancer journey challenges; emotions, reactions, and coping; personal support preferences; and AWC's support needs. Parents recognized that AWC require various support, but lacked insight into their specific peer support desires. Next step interventions should focus on peer support for AWC, while also incorporating peer support for parents.


Neoplasms , Pediatrics , Humans , Child , Adolescent , Prospective Studies , Parents/psychology , Counseling , Neoplasms/therapy
3.
J Adolesc Young Adult Oncol ; 11(4): 433-438, 2022 08.
Article En | MEDLINE | ID: mdl-34591689

Adolescents with cancer (AWC) in pediatrics may not have adequate opportunities for peer support. This mixed methods study aimed to characterize peer support needs of AWC during or shortly after treatment. Ten AWC with median age 16.5 (range 14-18) years completed a survey and semistructured interview. Three themes were apparent: cancer journey difficulties, current support system, and peer support perspectives. Participants felt incompletely understood by existing supports, lacked connection with other AWC, and craved experiential information. Peer support interventions should be flexible, facilitate various interactions, and include social media. The next step is to implement and evaluate an intervention.


Neoplasms , Social Media , Adolescent , Canada , Child , Emotions , Humans , Neoplasms/therapy , Social Support , Surveys and Questionnaires
5.
J Neurooncol ; 147(3): 731-736, 2020 May.
Article En | MEDLINE | ID: mdl-32285309

PURPOSE: Mammalian target of rapamycin inhibitors (mTORi) are known to effectively reduce the size of subependymal giant cell astrocytomas (SEGAs), which are benign brain lesions associated with Tuberous Sclerosis Complex (TSC) that commonly cause obstructive hydrocephalus (OH). This retrospective case series reviews an institutional experience of the effect of mTORi on OH in patients with TSC-related SEGA. METHODS: Thirteen of 16 identified patients with TSC-related SEGA treated with mTORi from October 2007 to December 2018 were included. Serial magnetic resonance imaging (MRI) and clinical charts were reviewed to correlate symptoms and signs of increased intracranial pressure (iICP) with ventriculomegaly on MRI. A proposed ventriculomegaly scale was used: none (< 7 mm), mild (7-10 mm), moderate (11-30 mm), and severe (> 30 mm). OH was defined as moderate or severe ventriculomegaly, based on the largest measurement. RESULTS: Patients' median age at start of mTORi was 13 (6-17) years and five (38%) patients were female. Eight patients had OH at the time of mTORi initiation, five of whom were asymptomatic. Six patients had improvement of hydrocephalus on serial MRI imaging with mTORi therapy, while seven patients had no change based on the ventriculomegaly scale used. All three patients who presented with symptoms of iICP and had OH also had papilledema. None had worsening of hydrocephalus or required shunt placement. Out of five patients with symptoms of iICP, four avoided surgery. CONCLUSION: Most patients had asymptomatic OH at the time of diagnosis, and ventricular enlargement was not correlated with iICP symptoms. mTORi was successful for treatment of OH from TSC-related SEGA, even in the setting of acute symptoms of iICP.


Astrocytoma/complications , Brain Neoplasms/complications , Hydrocephalus/complications , Hydrocephalus/drug therapy , Protein Kinase Inhibitors/therapeutic use , TOR Serine-Threonine Kinases/antagonists & inhibitors , Tuberous Sclerosis/complications , Adolescent , Child , Female , Humans , Male , Retrospective Studies , Treatment Outcome
6.
J Pediatr ; 194: 253-256, 2018 03.
Article En | MEDLINE | ID: mdl-29221696

Physicians from 6 non-oncology pediatric subspecialties were surveyed about fertility preservation (FP) to assess education/service needs. Almost all (96%; 25 of 26) reported having patients at risk of infertility; however, only 58% (15 of 26) had discussed FP with patients' families. Most subspecialists (92%; 23 of 25) would like access to an FP program. Our data support exploring the expansion of FP programs beyond oncology.


Fertility Preservation/statistics & numerical data , Health Knowledge, Attitudes, Practice , Practice Patterns, Physicians'/statistics & numerical data , Humans , Medical Oncology , Needs Assessment/statistics & numerical data , Pediatrics/statistics & numerical data , Physicians , Pilot Projects , Surveys and Questionnaires
7.
Pediatr Blood Cancer ; 62(10): 1754-60, 2015 Oct.
Article En | MEDLINE | ID: mdl-25929843

BACKGROUND: Tuberous sclerosis complex (TSC) is an autosomal dominant multisystem disease usually diagnosed in childhood. Subependymal giant cell astrocytomas (SEGA) are benign brain lesions occurring in up to 20% of patients with TSC. Treatment with mTOR inhibitors has been proven effective in inducing SEGA shrinkage, but discontinuation results in re-growth. Evidence suggests that mTOR inhibition seems a disease-modifying treatment for TSC beyond inducing SEGA shrinkage; however concerns remain regarding negative long-term effects. METHODS: Through this retrospective case series, an attempt was made to determine the minimal mTOR inhibitor dose needed to maintain radiological response of SEGA in six pediatric patients treated at The Hospital for Sick Children since 2007. This study reviews medication doses and blood levels as related to SEGA size on MRIs at 3-month intervals. Blood levels were monitored every 3 months and 2 weeks after dose adjustment. Total dose reduction by 25% was considered after SEGA shrinkage was maintained on two consecutive MRIs. RESULTS: All patients demonstrated SEGA shrinkage greater than 50% when treated with mTOR inhibition at therapeutic doses (4-5 mg/m(2)). When sirolimus doses were weaned in two patients by 50%, SEGAs regrew by 84% and 32%. In two patients, responses have been maintained with 30% decrease in sirolimus dose. One patient underwent SEGA resection and one remains on therapeutic dose. CONCLUSIONS: Therapeutic dose of mTOR inhibitor is effective in shrinking TSC-related SEGAs. Doses less than 2.5 mg/m(2) were insufficient to maintain response in this limited series.


Antineoplastic Agents/administration & dosage , Astrocytoma/drug therapy , Astrocytoma/pathology , TOR Serine-Threonine Kinases/antagonists & inhibitors , Tuberous Sclerosis/complications , Adolescent , Age of Onset , Astrocytoma/etiology , Child , Child, Preschool , Dose-Response Relationship, Drug , Female , Humans , Infant , Male , Neoplasm Recurrence, Local/drug therapy , Neoplasm Recurrence, Local/pathology , Retrospective Studies
8.
BMC Pediatr ; 14: 227, 2014 Sep 10.
Article En | MEDLINE | ID: mdl-25208720

BACKGROUND: Infective endocarditis is a rare diagnosis in pediatrics. Group A beta-hemolytic Streptococcus pyogenes is known to cause a range of type and severity of infections in childhood. However, S. pyogenes is a rarely described cause of endocarditis in children. This paper presents two cases of S. pyogenes endocarditis and the largest and most up-to-date review of cases previously reported in the literature. CASE PRESENTATION: Here we describe two pediatric cases of S. pyogenes endocarditis with associated toxic shock. Case 1 was a previously well Caucasian 6-year-old female who presented with sepsis. Case 2 was an 8-month-old South Asian female who presented with sepsis and pneumonia. We present a review of the literature since the beginning of the antibiotic era of this unusual cause of bacterial endocarditis in children. CONCLUSION: In addition to the two cases presented here, a total of 13 children have been reported since 1940 with endocarditis caused by S. pyogenes for which clinical details are available. Although few cases exist, literature review reveals a high mortality rate (27%) and the majority of patients who recovered had residual morbidities. We emphasize the importance of considering a diagnosis of endocarditis in cases of S. pyogenes sepsis or toxic shock in order to ensure early diagnosis and timely treatment, which are necessary for good outcomes. This information is relevant to both general and subspecialty pediatricians, especially emergency room and infectious disease physicians.


Endocarditis, Bacterial/diagnosis , Shock, Septic/diagnosis , Streptococcal Infections/diagnosis , Streptococcus pyogenes/isolation & purification , Child , Endocarditis, Bacterial/complications , Female , Humans , Infant , Shock, Septic/complications
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