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1.
J Clin Endocrinol Metab ; 109(3): e1225-e1237, 2024 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-37843393

RESUMO

PURPOSE: In this 6-year study we identified factors associated with spontaneous vertebral body reshaping in glucocorticoid (GC)-treated children with leukemia, rheumatic disorders, and nephrotic syndrome. METHODS: Subjects were 79 children (mean age 7.4 years) who had vertebral fracture (VF) evaluation on lateral spine radiographs at least 1 year after VF detection. VF were graded using the modified Genant semiquantitative method and fracture burden for individuals was quantified using the spinal deformity index (SDI; sum of grades from T4 to L4). RESULTS: Sixty-five children (82.3%) underwent complete vertebral body reshaping (median time from VF detection to complete reshaping 1.3 years by Cox proportional hazard modeling). Of 237 VF, the majority (83.1%) ultimately reshaped, with 87.2% reshaping in the thoracic region vs 70.7% in the lumbar region (P = .004). Cox models showed that (1) every g/m2 increase in GC exposure in the first year after VF detection was associated with a 19% decline in the probability of reshaping; (2) each unit increase in the SDI at the time of VF detection was associated with a 19% decline in the probability of reshaping [hazard ratio (HR) = 0.81; 95% confidence interval (CI) = 0.71, 0.92; P = .001]; (3) each additional VF present at the time of VF detection reduced reshaping by 25% (HR = 0.75; 95% CI = 0.62, 0.90; P = .002); and (4) each higher grade of VF severity decreased reshaping by 65% (HR = 0.35; 95% CI = 0.21, 0.57; P < .001). CONCLUSION: After experiencing a VF, children with higher GC exposure, higher SDI, more severe fractures, or lumbar VF were at increased risk for persistent vertebral deformity.


Assuntos
Fraturas Ósseas , Fraturas por Osteoporose , Fraturas da Coluna Vertebral , Criança , Humanos , Glucocorticoides/efeitos adversos , Corpo Vertebral , Densidade Óssea , Fraturas Ósseas/induzido quimicamente , Fraturas da Coluna Vertebral/etiologia , Fraturas da Coluna Vertebral/induzido quimicamente , Fraturas por Osteoporose/induzido quimicamente
2.
Pediatr Blood Cancer ; 70(12): e30708, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37794575

RESUMO

BACKGROUND: The intent of this study is to characterize indications for pediatric palliative-intent proton radiation therapy (PIPRT). PROCEDURE: We retrospectively reviewed patients 21 years and younger who received PIPRT. We defined PIPRT as radiotherapy (RT) aimed to improve cancer-related symptoms/provide durable local control in the non-curative setting. Mixed proton/photon plans were included. Adjacent re-irradiation (reRT) was defined as a reRT volume within the incidental dose cloud of a prior RT target, whereas direct reRT was defined as in-field overlap with prior RT target. Acute toxicity during RT until first inspection visit was graded according to the Common Terminology Criteria for Adverse Events. The Kaplan-Meier method, measured from last PIPRT fraction, was used to assess progression-free survival (PFS) and overall survival (OS). RESULTS: Eighteen patients underwent PIPRT between 2014 and 2020. Median age at treatment start was 10 years [2-21]. Median follow-up was 8.2 months [0-48]. Treatment sites included: brain/spine [10], abdomen/pelvis [3], thorax [3], and head/neck [2]. Indications for palliation included: durable tumor control [18], neurologic symptoms [4], pain [3], airway compromise [2], and great vessel compression [1]. Indications for protons included: reRT [15] (three adjacent, 12 direct), craniospinal irradiation [4], reduction of dose to normal tissues [3]. Sixteen experienced grade (G) 1-2 toxicity; two G3. There were no reports of radionecrosis. Median PFS was 5.3 months [95% confidence interval (CI): 2.7-16.3]. Median OS was 8.3 months [95% CI: 5.5-26.3]. CONCLUSIONS: The most common indication for PIPRT was reRT to provide durable tumor control. PIPRT appears to be safe, with no cases of high-grade toxicity.


Assuntos
Neoplasias , Terapia com Prótons , Reirradiação , Humanos , Criança , Reirradiação/efeitos adversos , Reirradiação/métodos , Terapia com Prótons/efeitos adversos , Terapia com Prótons/métodos , Estudos Retrospectivos , Prótons , Dosagem Radioterapêutica , Neoplasias/radioterapia , Neoplasias/etiologia , Recidiva Local de Neoplasia/patologia
3.
J Pediatr Endocrinol Metab ; 36(10): 978-982, 2023 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-37403553

RESUMO

OBJECTIVES: Severe and very severe hypertriglyceridemia although rare within the pediatric population occur more often among oncology patients, secondary to chemotherapeutic agents. Currently there exists minimal literature to guide management of severe hypertriglyceridemia among pediatric patients. Very-low-fat dietary restriction should be considered over nil per os (NPO) for initial management of severe hypertriglyceridemia in stable pediatric patients. Pediatricians caring for oncology patients must consider chylomicronemia as a potential etiology for presenting symptoms. Pediatric severe hypertriglyceridemia management guidelines are needed as pediatricians must currently rely on anecdotal experiences for management decisions. CASE PRESENTATION: Three children receiving treatment for acute lymphoblastic leukemia required hospitalization for very severe hypertriglyceridemia. Management varied among the cases but included: NPO or very-low-fat diet, insulin, intravenous fluids, fibrates, and omega-3 fatty acids. CONCLUSIONS: These cases suggest that pediatric severe hypertriglyceridemia management, in the absence of pancreatitis should allow a very-low-fat diet initially rather than NPO followed by pharmacologic therapies.


Assuntos
Hipertrigliceridemia , Pancreatite , Leucemia-Linfoma Linfoblástico de Células Precursoras , Humanos , Criança , Hipertrigliceridemia/complicações , Hipertrigliceridemia/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Pancreatite/terapia , Pancreatite/complicações , Insulina/uso terapêutico , Ácidos Fíbricos/uso terapêutico , Triglicerídeos
4.
J Bone Miner Res ; 38(8): 1104-1115, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37326443

RESUMO

Osteonecrosis (ON) is a serious complication of childhood acute lymphoblastic leukemia. We determined the prevalence of osteonecrotic lesions in our patient population by a one-time multisite magnetic resonance imaging (MRI) more than 1 year following leukemia therapy. MRI findings were evaluated in relationship to clinical factors (including longitudinal changes in bone mineral density [BMD]). Eighty-six children enrolled in the Steroid Associated Osteoporosis in the Pediatric Population (STOPP) study were evaluated for ON at 3.1 ± 1.3 years following therapy. Thirty children had a total of 150 confirmed ON lesions (35%). Lumbar spine (LS) BMD Z-scores (mean ± SD) were low at diagnosis and similar between patients with and without ON (-1.09 ± 1.53 versus -1.27 ± 1.25, p = 0.549). LS BMD Z-scores declined from baseline to 12 months in children with ON (-0.31 ± 1.02) but not in those without (0.13 ± 0.82, p = 0.035); the hip BMD Z-scores from baseline to 24 months declined in both groups, but to a greater extent in those with ON (-1.77 ± 1.22) compared to those without (-1.03 ± 1.07, p = 0.045). At the time of the MRI, mean total hip and total body (TB) BMD Z-scores were lower in children with ON (hip -0.98 ± 0.95 versus -0.28 ± 1.06, p = 0.010; TB -1.36 ± 1.10 versus -0.48 ± 1.50, p = 0.018). Pain occurred in 11/30 (37%) with ON versus 20/56 (36%) without, p = 0.841. In multivariable models, older age at diagnosis (odds ratio [OR] 1.57; 95% confidence interval [CI], 1.15-2.13; p = 0.004), and hip BMD Z-score at MRI (OR 2.23; 95% CI, 1.02-4.87; p = 0.046) were independently associated with ON. Overall, one-third of children demonstrated ON after leukemia therapy. Those with ON had greater reductions in spine and hip BMD Z-scores in the first 1 and 2 years of therapy, respectively. Older age and lower hip BMD Z-scores at MRI were significantly associated with prevalent, off-therapy ON. These data assist in identifying children at risk of ON. © 2023 The Authors. Journal of Bone and Mineral Research published by Wiley Periodicals LLC on behalf of American Society for Bone and Mineral Research (ASBMR).


Assuntos
Leucemia , Osteonecrose , Osteoporose , Humanos , Criança , Densidade Óssea , Vértebras Lombares , Osteonecrose/induzido quimicamente , Osteonecrose/diagnóstico por imagem , Absorciometria de Fóton/métodos
5.
Can J Cardiol ; 38(8): 1168-1179, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35961755

RESUMO

Atherosclerosis begins in youth and is directly linked with the presence and severity of cardiovascular risk factors, including dyslipidemia. Thus, the timely identification and management of dyslipidemia in childhood might slow atherosclerotic progression and decrease the risk of cardiovascular disease in adulthood. This is particularly true for children with genetic disorders resulting in marked dyslipidemia, including familial hypercholesterolemia, which remains frequently undiagnosed. Universal and cascade screening strategies can effectively identify cases of pediatric dyslipidemia. In the clinical evaluation of children with dyslipidemia, evaluating for secondary causes of dyslipidemia, including medications and systemic disorders is essential. The first line therapy generally centres around lifestyle modifications, with dietary changes specific to the dyslipidemia phenotype. Indications for medication depend on the severity of dyslipidemia and an individualized assessment of cardiovascular risk. Despite an expanding evidence base supporting the detection and timely management of pediatric dyslipidemia, numerous knowledge gaps remain, including a sufficient evidence base to support more widespread screening, thresholds for initiation of pharmacotherapy, and treatment targets. Further studies on the most appropriate age for statin initiation and long-term safety studies of statin use in youth are also required. The most pressing matter, however, is the development of knowledge translation strategies to improve the screening and detection of lipid disorders in Canadian youth.


Assuntos
Cardiologia , Doenças Cardiovasculares , Dislipidemias , Inibidores de Hidroximetilglutaril-CoA Redutases , Hiperlipoproteinemia Tipo II , Canadá , Doenças Cardiovasculares/diagnóstico , Doenças Cardiovasculares/tratamento farmacológico , Doenças Cardiovasculares/prevenção & controle , Dislipidemias/diagnóstico , Dislipidemias/tratamento farmacológico , Humanos , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Hiperlipoproteinemia Tipo II/tratamento farmacológico
6.
Adv Radiat Oncol ; 7(4): 100929, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35280349

RESUMO

Purpose: Managing pediatric patients requiring daily general anesthesia (GA) for radiation therapy (RT) in the setting of COVID-19 is complex, owing to the aerosolizing nature of GA procedures, the risk of cardiopulmonary complications for infected patients, and the treatment of immunocompromised oncology patients in a busy, densely populated radiation oncology clinic. Methods and Materials: We developed an institutional protocol to define procedures for COVID-19 testing and protection of patients, caregivers, and staff, hypothesizing that this protocol would allow patients requiring GA to be safely treated, minimizing COVID-19 transmission risk to both patients and staff, and at the same time maintaining pre-COVID-19 patient volumes. All patients underwent COVID-19 testing before their first treatment and thrice weekly during treatment. For patients who tested positive for COVID-19, RT was delivered in the last end-of-day treatment appointment. A negative pressure room was used for GA induction and recovery, and separate physician/nurse teams were designated for in-room versus out-of-room patient management. Results: Seventy-eight pediatric patients received RT under GA, versus 69 over the same prior year timeframe, and 2 patients received 2 courses of RT under GA, for a total of 80 courses. The mean age was 4.9 years (range, 0.5-19.0 years) and 41 of 78 (52.6%) were male. Two patients (2.6%) received 2 courses of RT under GA, establishing a total of 80 courses. The mean number of treatment fractions was 22.2 (range, 1-40). Two of 78 patients (2.6%) tested positive for COVID-19; both were asymptomatic. Both patients completed treatment as prescribed. Neither patient developed cardiopulmonary symptoms complicating anesthesia, and neither patient experienced grade 3+ acute radiation toxicity. Conclusions: With careful multidisciplinary planning to mitigate COVID-19 risk, pediatric RT with GA was carried out for a large patient volume without widespread infection and without increased toxic effects from either GA or RT.

7.
Clin Diabetes Endocrinol ; 7(1): 11, 2021 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-34134784

RESUMO

BACKGROUND: Central Diabetes Insipidus (CDI) results from decreased production of antidiuretic hormone (ADH) leading to an inability to concentrate urine. CDI is treated with desmopressin (DDAVP). Rarely reported in the literature, opioids and non-steroidal anti-inflammatories (NSAIDs) can induce hyponatremia in individuals treated for CDI. CASE PRESENTATION: A 10-year-old boy with septo-optic dysplasia and CDI was treated with DDAVP 1.6 mg orally TID maintaining normal sodium levels. Post admission for a femur fracture, he was discharged on ibuprofen and hydromorphone. Sodium was 136 mmol/l two days before discharge. He returned to the ED after having a seizure at home. He was euvolemic and mildly lethargic. Sodium was low at 108 mmol/l. DDAVP and hydromorphone were held and he was fluid restricted, but the sodium remained low. Sodium began to rise when Ibuprofen was stopped. Intermittent small doses of DDAVP were given to facilitate gradual correction of hyponatremia. At discharge, sodium had normalized. CONCLUSION: Hyponatremia has occasionally been described as a side effect of opioids and rarely of NSAIDs in patients with CDI. Stimulation of the thirst centre may play a role with opioids while a decrease in urine output may be the mechanism with NSAIDs.

8.
J Bone Miner Res ; 36(7): 1255-1268, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33784410

RESUMO

Vertebral fractures are clinically important sequelae of a wide array of pediatric diseases. In this study, we examined the accuracy of case-finding strategies for detecting incident vertebral fractures (IVF) over 2 years in glucocorticoid-treated children (n = 343) with leukemia, rheumatic disorders, or nephrotic syndrome. Two clinical situations were addressed: the prevalent vertebral fracture (PVF) scenario (when baseline PVF status was known), which assessed the utility of PVF and low lumbar spine bone mineral density (LS BMD; Z-score <-1.4), and the non-PVF scenario (when PVF status was unknown), which evaluated low LS BMD and back pain. LS BMD was measured by dual-energy X-ray absorptiometry, vertebral fractures were quantified on spine radiographs using the modified Genant semiquantitative method, and back pain was assessed by patient report. Forty-four patients (12.8%) had IVF. In the PVF scenario, both low LS BMD and PVF were significant predictors of IVF. Using PVF to determine which patients should have radiographs, 11% would undergo radiography (95% confidence interval [CI] 8-15) with 46% of IVF (95% CI 30-61) detected. Sensitivity would be higher with a strategy of PVF or low LS BMD at baseline (73%; 95% CI 57-85) but would require radiographs in 37% of children (95% CI 32-42). In the non-PVF scenario, the strategy of low LS BMD and back pain produced the highest specificity of any non-PVF model at 87% (95% CI 83-91), the greatest overall accuracy at 82% (95% CI 78-86), and the lowest radiography rate at 17% (95% CI 14-22). Low LS BMD or back pain in the non-PVF scenario produced the highest sensitivity at 82% (95% CI 67-92), but required radiographs in 65% (95% CI 60-70). These results provide guidance for targeting spine radiography in children at risk for IVF. © 2021 American Society for Bone and Mineral Research (ASBMR).


Assuntos
Fraturas da Coluna Vertebral , Absorciometria de Fóton , Dor nas Costas , Densidade Óssea , Criança , Humanos , Vértebras Lombares/diagnóstico por imagem , Fraturas da Coluna Vertebral/diagnóstico por imagem , Fraturas da Coluna Vertebral/epidemiologia
9.
J Bone Miner Res ; 35(3): 460-468, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31742768

RESUMO

Due to concerns about cumulative radiation exposure in the pediatric population, it is not standard practice to perform spine radiographs in most conditions that predispose to vertebral fracture (VF). In this study we examined the accuracy of two clinical predictors, back pain and lumbar spine bone mineral density (LS BMD), to derive four case-finding paradigms for detection of prevalent VF (PVF). Subjects were 400 children at risk for PVF (leukemia 186, rheumatic disorders 135, nephrotic syndrome 79). Back pain was assessed by patient report, LS BMD was measured by dual-energy X-ray absorptiometry, and PVF were quantified on spine radiographs using the modified Genant semiquantitative method. Forty-four patients (11.0%) had PVF. Logistic regression analysis between LS BMD and PVF produced an odds ratio (OR) of 1.9 (95% confidence interval [CI], 1.5 to 2.5) per reduction in Z-score unit, an area under the receiver operating characteristic curve of 0.70 (95% CI, 0.60 to 0.79), and an optimal BMD Z-score cutoff of -1.6. Case identification using either low BMD alone (Z-score < -1.6) or back pain alone gave similar results for sensitivity (55%, 52%, respectively), specificity (78%, 81%, respectively), positive predictive value (PPV; 24%, 25%, respectively), and negative predictive value (NPV; 93%, 93%, respectively). The paradigm using low BMD plus back pain produced lower sensitivity (32%), higher specificity (96%), higher PPV (47%), and similar NPV (92%). The approach using low BMD or back pain had the highest sensitivity (75%), lowest specificity (64%), lowest PPV (20%), and highest NPV (95%). All paradigms had increased sensitivities for higher fracture grades. Our results show that BMD and back pain history can be used to identify children with the highest risk of PVF so that radiography can be used judiciously. The specific paradigm to be applied will depend on the expected PVF rate and the clinical approach to the use of radiography. © 2019 American Society for Bone and Mineral Research.


Assuntos
Fraturas da Coluna Vertebral , Absorciometria de Fóton , Dor nas Costas , Densidade Óssea , Criança , Humanos , Vértebras Lombares/diagnóstico por imagem , Fraturas da Coluna Vertebral/diagnóstico por imagem , Fraturas da Coluna Vertebral/epidemiologia
10.
Patient Educ Couns ; 103(1): 15-32, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31451363

RESUMO

OBJECTIVE: To examine and identify the scope of research addressing health information overload in consumers. METHODS: In accordance with a published protocol, six electronic databases (PubMed, CINAHL, ERIC, PsycINFO, Embase, and Scopus), reference lists of included articles, and grey literature (Google Advanced Search and WorldCat) were searched. Articles in English were included, without any limit on the date of publication. RESULTS: Of the 69 records included for final analysis, 22 studies specifically examined health information overload, whereas the remainder peripherally discussed the concept alongside other concepts. The 22 studies focused on one or more of the following: 1) ways to measure health information overload (multi-item/single-item scales); 2) predictors of health information overload - these included low education level, health literacy, and socioeconomic status; and 3) interventions to address information overload, such as videotaped consultations or written materials. Cancer information overload was a popular topic amongst studies that focused on information overload. CONCLUSION: Based on the identified studies, there is a clear need for future studies that investigate health information overload in consumers with chronic medical conditions other than cancer. PRACTICE IMPLICATIONS: This review is the initial step in facilitating future efforts to create health information that do not overload consumers.


Assuntos
Letramento em Saúde , Doença Crônica , Escolaridade , Humanos
11.
Comput Inform Nurs ; 37(7): 373-385, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31135468

RESUMO

Innovative, patient-centered mHealth interventions have the potential to help with the burden of chronic conditions. This review aims to describe the development of consumer mHealth interventions for chronic condition self-management. A scoping review methodology was used to search medical databases for eligible reports, published between January 1, 2010, and December 31, 2017, that provided information on consumer mHealth interventions for respiratory disease, cancer, diabetes, and cardiovascular disease. Twenty-one reports were included, representing the development of 14 mHealth interventions. Most were developed collaboratively, using user-centered and participatory design processes. Predesign work involved a thorough needs assessment, and redesign processes were described as iterative, engaging with usability testing and design improvements. Tensions from competing priorities between patients and healthcare professionals were uncovered, with the intention to develop a useful product for the patient while ensuring clinical relevance. This review provides clear evidence that consumer mHealth interventions are developed inconsistently even when engaging with participatory or user-centered design principles, sometimes without direct involvement of patients themselves. Further, the incomplete description of the development processes presents challenges to furthering the knowledge base as healthcare professionals need timely access to quality information on mHealth products in order to recommend safe, effective consumer mHealth interventions.


Assuntos
Doença Crônica/terapia , Aplicativos Móveis , Avaliação das Necessidades , Autocuidado , Telemedicina , Assistência Ambulatorial , Acessibilidade aos Serviços de Saúde , Humanos , Interface Usuário-Computador
12.
J Clin Endocrinol Metab ; 104(2): 213-222, 2019 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-30247635

RESUMO

Objective: To assess the effect of vertebral fractures (VF) and glucocorticoid (GC) exposure on height deficits in children during treatment of acute lymphoblastic leukemia (ALL). Methods: Children with ALL treated without cranial radiation therapy (n = 160; median age, 5.1 years; 58.1% male) were followed prospectively for 6 years. Spinal deformity index (SDI) was used to quantify VF status. Results: Baseline height z score ± SD was 0.3 ± 1.2. It fell by 0.5 ± 0.4 in the first 6 months for boys and by 0.4 ± 0.4 in the first 12 months for girls (P < 0.01 for both) and then subsequently recovered. The prevalence of VF peaked at 1 year (17.6%). Among those with VF, median SDI rose from 2 [interquartile range (IQR): 1, 7] at baseline to 8 (IQR: 1, 8) at 1 year. A mixed model for repeated measures showed that height z score declined by 0.13 (95% CI: 0.02 to 0.24; P = 0.02) for each 5-unit increase in SDI during the previous 12 months. Every 10 mg/m2 increase in average daily GC dose (prednisone equivalent) in the previous 12 months was associated with a height z score decrement of 0.26 (95% CI: 0.20 to 0.32; P < 0.01). Conclusions: GC likely plays a major role in the observed height decline during therapy for ALL. Because only a minority of children had VF, fractures could not have contributed significantly to the height deficit in the entire cohort but may have been important among the subset with VF.


Assuntos
Glucocorticoides/efeitos adversos , Transtornos do Crescimento/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Fraturas da Coluna Vertebral/complicações , Adolescente , Antropometria/métodos , Estatura/efeitos dos fármacos , Densidade Óssea/efeitos dos fármacos , Criança , Pré-Escolar , Esquema de Medicação , Feminino , Seguimentos , Glucocorticoides/administração & dosagem , Glucocorticoides/uso terapêutico , Transtornos do Crescimento/fisiopatologia , Humanos , Lactente , Masculino , Estudos Prospectivos , Fatores de Risco , Fatores Sexuais
13.
CMAJ Open ; 6(3): E372-E383, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30201821

RESUMO

BACKGROUND: Country-specific data on outcomes of treatment with recombinant human growth hormone are lacking. We present such data for children treated with growth hormone in Canada. METHODS: We describe characteristics and outcomes of 850 children (mean age at baseline 8.5 yr) treated with growth hormone constituting the Canadian cohort of the multinational phase IV prospective observational Genetics and Neuroendocrinology of Short-stature International Study (GeNeSIS). The diagnosis associated with short stature was as determined by the investigator. Auxological data were evaluated yearly until near-adult height. Adverse events were assessed in all growth-hormone-treated patients. RESULTS: The diagnosis ascribed as the cause of short stature was growth hormone deficiency in 526 children (61.9%), predominantly organic rather than idiopathic, particularly congenital pituitary abnormalities and intracranial tumours. All diagnostic groups with sufficient patients for analysis had increased height velocity standard deviation score (SDS) and height SDS during growth hormone treatment. For patients who reached near-adult height (n = 293), the mean height SDS was within the normal range for about 80% of patients with organic growth hormone deficiency (n = 131) or idiopathic growth hormone deficiency (n = 50), 50% of patients with idiopathic short stature (n = 10) and 46% of patients with Turner syndrome (n = 79). Eleven deaths were reported, 7 in patients with organic growth hormone deficiency. Serious adverse events considered related to growth hormone treatment (n = 19) were isolated except for medulloblastoma recurrence (n = 2) and adenoidal hypertrophy (n = 2). INTERPRETATION: Growth hormone treatment was effective and had a good safety profile in Canadian children. Growth hormone dosages were lower than in the US and global GeNeSIS cohorts, and a greater proportion of treated Canadian children had organic growth hormone deficiency. STUDY REGISTRATION: ClinicalTrials.gov, no. NCT01088412.

14.
J Bone Miner Res ; 33(8): 1435-1443, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29786884

RESUMO

Osteoporotic fractures are a significant cause of morbidity in acute lymphoblastic leukemia (ALL). Our objective was to determine the incidence and predictors of fractures and recovery from osteoporosis in pediatric ALL over 6 years following glucocorticoid initiation. Vertebral fractures (VF) and vertebral body reshaping were assessed on annual spine radiographs, low-trauma non-VF were recorded at regular intervals and spine bone mineral density (BMD) was captured every 6 months for 4 years and then annually. A total of 186 children with ALL were enrolled (median age 5.3 years; range, 1.3 to 17.0 years). The cumulative fracture incidence was 32.5% for VF and 23.0% for non-VF; 39.0% of children with VF were asymptomatic. No fractures occurred in the sixth year and 71.3% of incident fractures occurred in the first 2 years. Baseline VF, cumulative glucocorticoid dose, and baseline lumbar spine (LS) BMD Z-score predicted both VF and non-VF. Vertebral body reshaping following VF was incomplete or absent in 22.7% of children. Those with residual vertebral deformity following VF were older compared to those without (median age 8.0 years at baseline [interquartile range {IQR}, 5.5 to 9.4] versus 4.8 years [IQR, 3.6 to 6.2], p = 0.04) and had more severe vertebral collapse (median maximum spinal deformity index 3.5 [IQR, 1.0 to 8.0] versus 0.5 [IQR, 0.0 to 1.0], p = 0.01). VF and low LS BMD Z-score at baseline as well as glucocorticoid exposure predicted incident VF and non-VF. Nearly 25% of children had persistent vertebral deformity following VF, more frequent in older children, and in those with more severe collapse. These results suggest the need for trials addressing interventions in the first 2 years of chemotherapy, targeting older children and children with more severe vertebral collapse, because these children are at greatest risk for incident VF and subsequent residual vertebral deformity. © 2018 American Society for Bone and Mineral Research.


Assuntos
Osso e Ossos/patologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/patologia , Criança , Pré-Escolar , Feminino , Fraturas Ósseas/complicações , Fraturas Ósseas/epidemiologia , Humanos , Incidência , Masculino , Análise Multivariada , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Prevalência , Modelos de Riscos Proporcionais , Estudos Prospectivos , Fraturas da Coluna Vertebral/diagnóstico por imagem , Fraturas da Coluna Vertebral/epidemiologia , Coluna Vertebral/diagnóstico por imagem , Coluna Vertebral/patologia
15.
Stud Health Technol Inform ; 215: 52-66, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26249184

RESUMO

This chapter explores how Techno-Anthropology can contribute to more explicitly professional and ethically responsible reflections on the socio-technical practices involved in meaningfully engaging patients in health informatics research. The chapter draws on insights from health informatics research projects focused on chronic disease and self-management conducted in Tasmania during the last 10 years. Through these projects the paper explores three topics of relevance to 'meaningful engagement' with patients: (i) Patient Self-Management and Chronic Disease (ii) Patients as Users in Health Informatics research, and, (iii) Evaluations of outcomes in Health and Health Informatics Interventions. Techno-Anthropological reflections are then discussed through the concepts of liminality, polyphony and power. This chapter argues that beyond its contribution to methodology, an important role for Techno-Anthropology in patient centred health informatics research may be its capacity to support new ways of conceptualising and critically reflecting on the construction and mediation of patients' needs, values and perspectives.


Assuntos
Antropologia Cultural , Doença Crônica/terapia , Aplicações da Informática Médica , Participação do Paciente , Assistência Centrada no Paciente , Pesquisa , Autocuidado , Humanos , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Tasmânia
16.
J Clin Endocrinol Metab ; 100(9): 3408-17, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26171800

RESUMO

OBJECTIVES: The purpose of this article was to determine the incidence and predictors of vertebral fractures (VF) during the 4 years after diagnosis in pediatric acute lymphoblastic leukemia (ALL). PATIENTS AND METHODS: Children were enrolled within 30 days of chemotherapy initiation, with incident VF assessed annually on lateral spine radiographs according to the Genant method. Extended Cox models were used to assess the association between incident VF and clinical predictors. RESULTS: A total of 186 children with ALL completed the baseline evaluation (median age, 5.3 years; interquartile range, 3.4-9.7 years; 58% boys). The VF incidence rate was 8.7 per 100 person-years, with a 4-year cumulative incidence of 26.4%. The highest annual incidence occurred at 12 months (16.1%; 95% confidence interval [CI], 11.2-22.7), falling to 2.9% at 4 years (95% CI, 1.1-7.3). Half of the children with incident VF had a moderate or severe VF, and 39% of those with incident VF were asymptomatic. Every 10 mg/m(2) increase in average daily glucocorticoid dose (prednisone equivalents) was associated with a 5.9-fold increased VF risk (95% CI, 3.0-11.8; P < .01). Other predictors of increased VF risk included VF at diagnosis, younger age, and lower spine bone mineral density Z-scores at baseline and each annual assessment. CONCLUSIONS: One quarter of children with ALL developed incident VF in the 4 years after diagnosis; most of the VF burden was in the first year. Over one third of children with incident VF were asymptomatic. Discrete clinical predictors of a VF were evident early in the patient's clinical course, including a VF at diagnosis.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Fraturas da Coluna Vertebral/epidemiologia , Antineoplásicos/uso terapêutico , Densidade Óssea , Criança , Pré-Escolar , Feminino , Humanos , Incidência , Estudos Longitudinais , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico
17.
Stud Health Technol Inform ; 208: 319-23, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25676995

RESUMO

This paper presents findings from the implementation of an online symptom monitoring diary that was part of a broader project aimed to support self-management of cystic fibrosis and the development of an online community of practice (CoP). The findings challenge conventional perspectives on how value is acquired by patients and their families from electronic tools designed to provide them with support. Additionally, the findings highlight complex relationships between user needs and subsequent tool use that challenge approaches to the measurement of value from ehealth projects.


Assuntos
Fibrose Cística/terapia , Internet , Aplicações da Informática Médica , Educação de Pacientes como Assunto , Autocuidado , Adolescente , Feminino , Humanos , Masculino , Projetos Piloto , Apoio Social , Tasmânia
18.
J Clin Endocrinol Metab ; 100(3): 1018-27, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25494661

RESUMO

OBJECTIVES: Our objectives were to assess the magnitude of the disparity in lumbar spine bone mineral density (LSBMD) Z-scores generated by different reference databases and to evaluate whether the relationship between LSBMD Z-scores and vertebral fractures (VF) varies by choice of database. PATIENTS AND DESIGN: Children with leukemia underwent LSBMD by cross-calibrated dual-energy x-ray absorptiometry, with Z-scores generated according to Hologic and Lunar databases. VF were assessed by the Genant method on spine radiographs. Logistic regression was used to assess the association between fractures and LSBMD Z-scores. Net reclassification improvement and area under the receiver operating characteristic curve were calculated to assess the predictive accuracy of LSBMD Z-scores for VF. RESULTS: For the 186 children from 0 to 18 years of age, 6 different age ranges were studied. The Z-scores generated for the 0 to 18 group were highly correlated (r ≥ 0.90), but the proportion of children with LSBMD Z-scores ≤-2.0 among those with VF varied substantially (from 38-66%). Odds ratios (OR) for the association between LSBMD Z-score and VF were similar regardless of database (OR = 1.92, 95% confidence interval 1.44, 2.56 to OR = 2.70, 95% confidence interval 1.70, 4.28). Area under the receiver operating characteristic curve and net reclassification improvement ranged from 0.71 to 0.75 and -0.15 to 0.07, respectively. CONCLUSIONS: Although the use of a LSBMD Z-score threshold as part of the definition of osteoporosis in a child with VF does not appear valid, the study of relationships between BMD and VF is valid regardless of the BMD database that is used.


Assuntos
Absorciometria de Fóton/normas , Densidade Óssea , Bases de Dados Factuais , Fraturas da Coluna Vertebral/epidemiologia , Adolescente , Criança , Pré-Escolar , Comportamento de Escolha , Feminino , Humanos , Lactente , Recém-Nascido , Vértebras Lombares/diagnóstico por imagem , Vértebras Lombares/lesões , Masculino , Prevalência , Curva ROC , Valores de Referência , Projetos de Pesquisa , Fraturas da Coluna Vertebral/diagnóstico por imagem
19.
Pain Res Manag ; 19(4): 198-204, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24809068

RESUMO

BACKGROUND: Published reports of substantial rates of moderate to severe pediatric inpatient pain tend to overlook lower-intensity pain that may be clinically significant. OBJECTIVE: To document the prevalence of clinically significant pain in pediatric inpatients by considering the pain threshold at which each child desires intervention, and to assess sources of pain, pain assessment and intervention, and relationships among demographic and medical variables to reported pain. METHODS: Inpatients or their parents on four hospital units during four nonconsecutive days were eligible for inclusion. Interviews (76 parents; 31 patients) captured experiences of 107 inpatients (three weeks to 18 years of age) including current, worst and usual pain, pain treatment thresholds, sources of pain and help received during the previous 24 h. A chart review provided data regarding demographic and medical variables, and pain assessment and management. RESULTS: In total, 94% of patients experienced pain. The prevalence of clinically significant pain was 8% (current), 62% (worst) and 24% (usual). Current and worst pain was primarily procedural, and usual pain was primarily disease related. On average, patients had 4.03 documented pain assessments over 24 h. Caregiver responses (eg, reassurance) and nonpharmacological interventions were frequently reported (>90%) but infrequently documented (<50%); 66% of patients received pharmacological interventions. Younger patients received fewer pain assessments and opioids. Patients with clinically significant usual pain were more likely to have undergone surgery, and receive more pain assessments and interventions. CONCLUSIONS: While recent studies suggest reduced pain in pediatric inpatients, the present findings reveal a continued high frequency of undertreated pain. High rates of procedural pain are preventable and should be targeted given the underutilization of pain management strategies.


Assuntos
Criança Hospitalizada/estatística & dados numéricos , Manejo da Dor , Medição da Dor/estatística & dados numéricos , Dor , Adolescente , Cuidadores/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Entrevista Psicológica , Masculino , Dor/diagnóstico , Dor/epidemiologia , Dor/prevenção & controle , Prevalência
20.
Artigo em Inglês | MEDLINE | ID: mdl-26594649

RESUMO

OBJECTIVE: Prevalence of total knee replacement (TKR) is large and growing but functional outcomes are variable. Physical therapy (PT) is integral to functional recovery following TKR but little is known about the quantity or content of PT delivered. Purposes of this study were to describe the amount and exercise content of PT provided in the terminal episode of PT care following TKR and to examine factors associated with utilization and content. METHODS: Subjects included participants in a clinical trial of behavioral interventions for patients undergoing primary unilateral TKR who had completed the 6-month study evaluation. PT records were requested from 142 consecutive participants who had completed their post-TKR rehabilitation, 102 in/out patient care, and 40 in homecare. Information on utilization and exercises was extracted from a retrospective review of the PT records. RESULTS: We received 90 (88%) outpatient and 27 (68%) homecare PT records. Records showed variability in timing, amount and content of PT. Patients receiving outpatient PT had more visits and remained in PT longer (p<0.001). Exercises known in the TKR literature were utilized more frequently in the outpatient setting (p=0.001) than in home care. Records from both settings had limited documentation of strengthening progression. CONCLUSIONS: The study reveals considerable variability in timing, utilization and exercise content of PT following TKR and suggests sub-optimal exercise for strengthening. While methods we employed document variability, improved systematic PT documentation and in-depth research are needed to identify optimal timing, utilization and content of PT following TKR.

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