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1.
Appl Clin Inform ; 15(3): 437-445, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38839064

RESUMEN

BACKGROUND: Clinical informatics (CI) has reshaped how medical information is shared, evaluated, and utilized in health care delivery. The widespread integration of electronic health records (EHRs) mandates proficiency among physicians and practitioners, yet medical trainees face a scarcity of opportunities for CI education. OBJECTIVES: We developed a CI rotation at a tertiary pediatric care center to teach categorical pediatric, pediatric-neurology, and medicine-pediatric residents foundational CI knowledge and applicable EHR skills. METHODS: Created in 2017 and redesigned in 2020, a CI rotation aimed to provide foundational CI knowledge, promote longitudinal learning, and encourage real-world application of CI skills/tools. Led by a team of five physician informaticist faculty, the curriculum offers personalized rotation schedules and individual sessions with faculty for each trainee. Trainees were tasked with completing an informatics project, knowledge assessment, and self-efficacy perception survey before and after rotation. Paired t-test analyses were used to compare pre- and postcurriculum perception survey. RESULTS: Thirty-one residents have completed the elective with their projects contributing to diverse areas such as medical education, division-specific initiatives, documentation improvement, regulatory compliance, and operating plan goals. The mean knowledge assessment percentage score increased from 77% (11.6) to 92% (10.6; p ≤ 0.05). Residents' perception surveys demonstrated improved understanding and confidence across various informatics concepts and tools (p ≤ 0.05). CONCLUSION: Medical trainees are increasingly interested in CI education and find it valuable. Our medical education curriculum was successful at increasing residents' understanding, self-efficacy, and confidence in utilizing CI concepts and EHR tools. Future data are needed to assess the impact such curricula have on graduates' proficiency and efficiency in the use of CI tools in the clinical workplace.


Asunto(s)
Curriculum , Informática Médica , Pediatría , Informática Médica/educación , Humanos , Pediatría/educación , Personal de Salud/educación , Registros Electrónicos de Salud , Internado y Residencia
2.
J Exp Psychol Gen ; 2024 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-38695800

RESUMEN

Our prior experiences shape the way that we prioritize information from the environment for further processing, analysis, and action. We show in three experiments that this process of attentional prioritization is critically modulated by the degree of uncertainty in these previous experiences. Participants completed a visual search task in which they made a saccade to a target to earn a monetary reward. The color of a color-singleton distractor in the search array signaled the reward outcome(s) that were available, with different degrees of variance (uncertainty). Participants were never required to look at the colored distractor, and doing so would slow their response to the target. Nevertheless, across all experiments, participants were more likely to look at distractors associated with high outcome variance versus low outcome variance. This pattern was observed when all distractors had equal expected value (Experiment 1), when the difference in variance was opposed by a difference in expected value (i.e., the high-variance distractor had a low expected value, and vice versa: Experiment 2), and when high- and low-variance distractors were paired with the maximum-value outcome on an equal proportion of trials (Experiment 3). Our findings demonstrate that experience of prediction error plays a fundamental role in guiding "attentional exploration," wherein priority is driven by the potential for a stimulus to reduce future uncertainty through a process of learning, as opposed to maximizing current information gain. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

3.
Hosp Pediatr ; 14(6): 455-462, 2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38770572

RESUMEN

BACKGROUND AND OBJECTIVES: Teen access to sexual health care is essential. The 21st Century Cures Act mandates that most electronic health information be shared with patients; no standard exists for how to meet this mandate for teens and their proxy caregivers. Our confidential shared teen sexual history (SexHx) section, which is not note-based, allows clinicians to easily find information, promotes clinical decision support, and protects privacy. Nevertheless, significant variability existed in SexHx section usage, SexHx documentation, and teen note-sharing practices. For teens (aged 12-17) admitted to the Pediatric Hospital Medicine service, we aim to increase the use of the SexHx section by 10% and increase History and Physical notes (H&Ps) shared with teens by 5% over 12 months. METHODS: Quality improvement methodology and tools were used to conduct a barrier analysis and implement a series of interventions, which included education, training, and electronic health record clinical decision support. Statistical process control charts were used to examine the impact of the interventions. RESULTS: At baseline, from April to July 2021, sexual activity was documented or reviewed in the SexHx section for 56% of teen patients. Over the intervention period, the center line shifted to 72%. At baseline, 76% of teen H&Ps were shared with patients. The percentage of H&Ps shared revealed a center-line shift to 81% throughout the intervention period. CONCLUSIONS: The shared teen SexHx section is an innovative tool for capturing sensitive patient history discretely. We demonstrated increased and sustained SexHx section use and H&P note-sharing in this quality improvement initiative.


Asunto(s)
Registros Electrónicos de Salud , Anamnesis , Mejoramiento de la Calidad , Conducta Sexual , Humanos , Adolescente , Anamnesis/métodos , Femenino , Masculino , Niño , Documentación/normas , Salud Sexual , Confidencialidad , Hospitales Pediátricos
4.
Healthc (Amst) ; 12(1): 100733, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38194745

RESUMEN

Electronic health records (EHRs) have provided physicians with user-friendly self-service reporting tools to extract patient data from the EHR. Despite such benefits, physician training on how to use these tools has been limited. At our institution, physicians were faced with prolonged wait time for EHR data extraction requests and were unaware of self-service reporting tool availability in the EHR. Our goal was to develop an EHR data reporting curriculum for physicians and staff and examine the effectiveness of such training. In 2019, physician informaticists developed two interactive sessions to train physicians and staff on self-service reporting tools (Epic® SlicerDicer and Reporting Workbench (RWB)) available in our tertiary children's hospital EHR. We assessed participants' knowledge, confidence, and tool utilization before, after, and 3-months post training via survey. Training sessions occurred between April and August 2021. Thirty-six participants completed the study, with 25 surveys collected immediately post and 22 surveys collected at 3-months post training. Data literacy knowledge pre-test average score improved from 62% to 93% (p < 0.05) immediately post-session and 74% at 3-months post assessment (p = 0.05). Regular tool utilization increased from 29% (RWB) and 34% (SlicerDicer) pre-session to 56% and 44% at 3-months post, respectively. Participants reported increased confidence in performing SlicerDicer model selection, criteria selection, and data visualization as well as RWB report navigation, report creation, report visualization, and describing report's benefits/limitations. Ultimately, physician and staff self-service reporting tools training were effective in increasing data literacy knowledge, tool utilization, and confidence.


Asunto(s)
Registros Electrónicos de Salud , Médicos , Humanos , Niño , Encuestas y Cuestionarios , Curriculum , Autoinforme
5.
Nat Med ; 29(8): 1922-1929, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37474660

RESUMEN

Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs. Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited. In this Review, we evaluate the impact of PPIE in the 'Therapies for Long COVID in non-hospitalised individuals' (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. We identify areas of good practice and reflect on areas for improvement. Using these insights and the results of a survey, we synthesize two checklists of considerations for PPIE, and we propose that research teams use these checklists to optimize the impact of PPIE for both patients and researchers in future studies.


Asunto(s)
COVID-19 , Síndrome Post Agudo de COVID-19 , Humanos , COVID-19/epidemiología , Lista de Verificación , Participación del Paciente , Pacientes
7.
Res Involv Engagem ; 9(1): 18, 2023 Mar 30.
Artículo en Inglés | MEDLINE | ID: mdl-36997975

RESUMEN

BACKGROUND: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID. METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies. RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform. CONCLUSION: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.


The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people's health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.

8.
Appl Clin Inform ; 13(5): 1033-1039, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-36044925

RESUMEN

OBJECTIVE: The authors describe a novel solution to the challenges of lengthy notes and poor note readability by creating an unobtrusive clinical decision support tool named "disappearing help text." METHODS: We designed this tool in Pediatric Hospital Medicine (PHM) note templates to provide in-line decision support on best documentation practices, note bloat reduction, billing compliance, and provider workflow enhancement. RESULTS: After template changes that utilized disappearing help text, we reduced the percent of notes utilizing any laboratory SmartLink from 90.2 to 15.3% for admission notes (p <0.001), 92.6 to 17.8% for progress notes (p <0.001), and 14 to 7.2% for discharge summaries (p <0.001). In admission and progress notes, this correlated with a significant reduction in the median note length as a proxy of note bloat reduction, with a 18.7% character count reduction in progress notes (p <0.001) and a 6.4% reduction in admission notes (p <0.001). PHM coding queries decreased from an average of 42 per month to 36 per month, and there was no change in PHM attending billing compliance audit performance. DISCUSSION: Note template changes that utilized disappearing help text significantly reduced the length of both progress and admission notes, a proxy for note bloat reduction, without negatively impacting coding query frequency or internal billing audit performance. One factor that likely contributed to this reduction in note length is the reduced usage of laboratory SmartLinks prompted by disappearing help text. CONCLUSION: We present the use of in-line disappearing help text embedded into note templates as a clinical decision support tool to improve note readability, educate trainees on note documentation, and protect confidential teen information. Help text implementation correlated with a reduction in the automatic insertion of laboratories into notes and a decrease in note character count.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas , Envío de Mensajes de Texto , Niño , Humanos , Adolescente , Registros Electrónicos de Salud , Documentación , Flujo de Trabajo
9.
J Gerontol B Psychol Sci Soc Sci ; 77(10): 1820-1830, 2022 10 06.
Artículo en Inglés | MEDLINE | ID: mdl-35421224

RESUMEN

OBJECTIVES: Prior research has documented age differences in risky decisions and indicates that they are susceptible to gain versus loss framing. However, previous studies focused on "decisions from description" that explicitly spell out the probabilities involved. The present study expands this literature by examining the effects of framing on age differences in the Balloon Analogue Risk Task (BART), a widely used and ecologically valid measure of experience-based risky decision making that involves pumping a virtual balloon. METHODS: In a preregistered study, younger (aged 18-30, n = 129) and older adults (aged 60 and older, n = 125) were randomly assigned to either a gain version of the BART, where pumping the balloon added monetary gains, or a loss version, where pumping the balloon avoided monetary losses. RESULTS: We found a significant age by frame interaction on risk-taking: in the loss frame, older adults pumped more frequently and experienced more popped balloons than younger adults, whereas in the gain frame no significant age differences were found. Total performance on the BART did not vary by age or frame. Supplementary analyses indicated that age differences in pumping rates were most pronounced at the beginning of the BART and leveled off in subsequent trials. Controlling for age differences in motivation, personality, and cognition did not account for age differences in risk-taking. DISCUSSION: In combination, findings suggest that age differences in risk-taking on the BART are more pronounced when the task context emphasizes avoiding losses rather than achieving gains.


Asunto(s)
Toma de Decisiones , Asunción de Riesgos , Anciano , Cognición , Humanos , Persona de Mediana Edad , Personalidad , Probabilidad
10.
Pediatr Qual Saf ; 6(4): e440, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34345753

RESUMEN

INTRODUCTION: Discharge communication is critical for the continuity of patient care. However, discharge summaries are often not available in time for follow-up visits, and the content is inconsistent. We aimed to decrease the average time to discharge summary completion by 25%, reduce deficiencies (information errors) by 50%, and increase discharge summary template use to >80% in 6 months. METHODS: A pediatric interprofessional team used quality improvement methods to identify barriers and implement interventions, including discharge summary completion time expectation, electronic health record discharge summary template changes addressing gaps, and training. Notable changes to the template included embedded writing tips to guide writers and specific template choices for common diagnoses to standardize content. The primary outcome measure was the mean discharge summary completion time. Secondary measures were the percentage of discharge summaries with deficiencies and the rate of template use. RESULTS: After interventions, the mean discharge summary completion time decreased by 70% (from 71.5 to 21.8 hours). Discharge summary deficiencies decreased 44% (from 4.5% to 2.5%), and template use increased from 62% to 97%. CONCLUSION: Quality improvement methods and a newly designed electronic health record-discharge summary template were used to dramatically improve discharge summary timeliness and standardize content to streamline continuity of care.

11.
Proc Hum Factors Ergon Soc Annu Meet ; 61(1): 1141-1144, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29158662

RESUMEN

For older adults, managing medications can be a burden and could lead to medication non-adherence. To decrease risks associated with medication non-adherence, healthcare providers may recommend medication reminder apps as an assistive tool. However, these apps are often not designed with consideration of older adults' needs, capabilities, and limitations. To identify whether available apps are suitable for older adults, we conducted an in-depth cognitive walkthrough and a heuristic evaluation of the most commonly downloaded medication reminder app. Findings revealed three main issues: 1) difficulty in navigation, 2) poor visibility, and 3) a lack of transparency. We also selected the top five downloaded medication reminder apps and categorized user reviews to assess app functionality and usability problems. The results of our analysis provide guidance for app design for older adult users to provide effective tools for managing medications and supporting patient/user health.

12.
J Pediatr Adolesc Gynecol ; 29(6): 599-603, 2016 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-27184535

RESUMEN

STUDY OBJECTIVE: Alkylating agents are implicated in premature ovarian insufficiency. To optimize counseling regarding future ovarian function in survivors of adolescent cancer, we describe anti-Müllerian hormone (AMH) levels in female adolescents at diagnosis, during, and shortly after completion of chemotherapy. DESIGN, SETTING, PARTICIPANTS, INTERVENTIONS, AND MAIN OUTCOME MEASURES: This was a prospective single-institution study. Participants were a mixed population of newly diagnosed postmenarchal female adolescents with malignancy. AMH was performed at diagnosis (T1), 6 months from diagnosis (T2), at end of therapy or 12 months [T3, whichever came first], 1 year after the end of therapy or 24 months from diagnosis [T4, whichever came first], and 18 months from the time of diagnosis (T5). All patients had baseline pelvic ultrasound examinations. Presence of menses and hot flashes were recorded at each time point. RESULTS: Sixteen participants with a median age at diagnosis of 14.3 years (range 12-17 years) were followed for 18.2 months (range, 14-24 months). Oncology diagnoses included leukemia, lymphoma, and sarcoma. Ten patients (62.5%) received alkylating agents with a median cumulative dose of 3041 mg/m2 (range, 2639-6478 mg/m2) of cyclophosphamide. Almost half (n = 7; 44%) experienced amenorrhea during treatment with resumption of menses in 6 of 7 patients (85%). Fifteen of 16 (94%) participants showed a decline in mean AMH levels by 6 months (T2) from diagnosis (15.8 IU/mL at T1 vs 6.5 IU/mL at T2; P = .003) and 12 of 15 (80%) showed at least some recovery of AMH (mean AMH at T4 = 13.2 IU/mL compared with 6.5 IU/mL at T2; P = .02). There was no difference in the mean decline nor recovery of AMH in those who did, vs did not receive cyclophosphamide. CONCLUSION: To our knowledge, this is the largest series to date in adolescents showing that AMH is uniformly suppressed during cancer therapy and short-term recovery occurs in just more than half of the patients by 18-24 months. The contribution of short-term AMH measurements in predicting long-term ovarian function remains to be defined. Long-term follow-up with serial AMH levels is required to help predict those at risk for premature ovarian insufficiency.


Asunto(s)
Hormona Antimülleriana/uso terapéutico , Antineoplásicos Alquilantes/efectos adversos , Ciclofosfamida/efectos adversos , Neoplasias/tratamiento farmacológico , Insuficiencia Ovárica Primaria/prevención & control , Adolescente , Adulto , Amenorrea/inducido químicamente , Niño , Estudios de Factibilidad , Femenino , Humanos , Proyectos Piloto , Insuficiencia Ovárica Primaria/inducido químicamente , Estudios Prospectivos , Sobrevivientes
13.
J Cancer Surviv ; 8(4): 548-54, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24810980

RESUMEN

PURPOSE: Anti-Müllerian hormone (AMH) is an indicator of oocyte reserve in healthy females. The role of AMH testing in oncology remains investigational, although its sensitivity and stability over the menstrual cycle make it an attractive screening test for fertility assessment among female cancer survivors. We measured AMH level in survivors of childhood cancer and evaluated its association with treatment and patient factors. METHODS: Participants were adult female survivors of childhood malignancy treated with chemotherapy. Serum AMH was measured at a random day of the menstrual cycle. Multivariate analysis was used to evaluate the association between AMH level, alkylating agent exposure using the cyclophosphamide equivalent dose (CED), and other covariates. RESULTS: Sixty-six females with a median attained age of 23.3 years were eligible for analysis. Median AMH was 25.5 pM (range 0.5-108.0), at a median time of 11.5 years (range 1.4-25.1) since cancer diagnosis. Twenty-three patients (34.8%) had low AMH, including a significant proportion that reported normal menstrual cycles. Compared to ALL survivors, sarcoma survivors had significantly lower AMH levels. Among alkylating agents evaluated, procarbazine had the greatest adverse effect on AMH. In multivariate analysis, higher CED (p = 0.001), older age at diagnosis (p < 0.001), and use of oral contraceptive pills (p = 0.04) remained significantly associated with lower AMH. CONCLUSIONS: Random AMH can reveal evidence of oocyte depletion among female survivors reporting normal cycles, although low AMH should be interpreted cautiously among those taking oral contraception. Age at exposure and CED can aid identification of those more likely to have low AMH, although CED may underestimate the effect of procarbazine on oocyte reserve. IMPLICATIONS FOR CANCER SURVIVORS: Measurement of AMH can reveal apparent depletion of ovarian reserve in female childhood cancer survivors reporting normal menstrual cycles. Sarcoma survivors and those exposed to procarbazine may benefit from targeted AMH evaluation in an outpatient setting, and thereby allow appropriate fertility counseling before the onset of premature ovarian failure. The cyclophosphamide equivalent dose may facilitate comparison of the potential effect of different regimens on fertility.


Asunto(s)
Hormona Antimülleriana/uso terapéutico , Adolescente , Adulto , Hormona Antimülleriana/administración & dosificación , Estudios Transversales , Femenino , Humanos , Neoplasias/mortalidad , Neoplasias/terapia , Reserva Ovárica , Sobrevivientes , Adulto Joven
14.
Med Teach ; 35(8): e1340-64, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23848374

RESUMEN

BACKGROUND: Traditionally, clinical learning for medical students consists of short-term and opportunistic encounters with primarily acute-care patients, supervised by an array of clinician preceptors. In response to educational concerns, some medical schools have developed longitudinal placements rather than short-term rotations. Many of these longitudinal placements are also integrated across the core clinical disciplines, are commonly termed longitudinal integrated clerkships (LICs) and often situated in rural locations. This review aimed to explore, analyse and synthesise evidence relating to the effectiveness of longitudinal placements, for medical students in particular to determine which aspects are most critical to successful outcomes. METHOD: Extensive search of the literature resulted in 1679 papers and abstracts being considered, with 53 papers ultimately being included for review. The review group coded these 53 papers according to standard BEME review guidelines. Specific information extracted included: data relating to effectiveness, the location of the study, number of students involved, format, length and description of placement, the learning outcomes, research design, the impact level for evaluation and the main evaluation methods and findings. We applied a realist approach to consider what works well for whom and under what circumstances. FINDINGS: The early LICs were all community-based immersion programs, situated in general practice and predominantly in rural settings. More recent LIC innovations were situated in tertiary-level specialist ambulatory care in urban settings. Not all placements were integrated across medical disciplines but were longitudinal in relation to location, patient base and/or supervision. Twenty-four papers focussed on one of four programs from different viewpoints. Most evaluations were student opinion (survey, interview, focus group) and/or student assessment results. Placements varied from one half day per week for six months through to full time immersion for more than 12 months. The predominant mechanism relating to factors influencing effectiveness was continuity of one or more of: patient care, supervision and mentorship, peer group and location. The success of LICs and participation satisfaction depended on the preparation of both students and clinical supervisors, and the level of support each received from their academic institutions. CONCLUSION: Longitudinal placements, including longitudinal integrated placements, are gaining in popularity as an alternative to traditional block rotations. Although relatively few established LICs currently exist, medical schools may look for ways to incorporate some of the principles of LICs more generally in their clinical education programmes. Further research is required to ascertain the optimum length of time for placements depending on the defined learning outcomes and timing within the programme, which students are most likely to benefit and the effects of context such as location and type of integration.


Asunto(s)
Prácticas Clínicas/organización & administración , Educación de Pregrado en Medicina/organización & administración , Actitud del Personal de Salud , Conducta , Selección de Profesión , Prácticas Clínicas/normas , Competencia Clínica , Educación de Pregrado en Medicina/normas , Evaluación Educacional , Conocimientos, Actitudes y Práctica en Salud , Humanos , Aprendizaje , Mentores , Grupo Paritario , Evaluación de Programas y Proyectos de Salud , Características de la Residencia , Factores de Tiempo
15.
Neuro Oncol ; 15(3): 391-400, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-23295772

RESUMEN

BACKGROUND: Optimal management of optic pathway/hypothalamic glioma (OPHG) remains an ongoing challenge. Little is known about the natural history, management strategies, and outcomes in adolescents. Carboplatin-based chemotherapy is a useful modality in younger children, delaying radiation to their immature brains. National trials have focused on younger children and excluded adolescents from studies evaluating the role of chemotherapy. METHODS: This retrospective study describes clinical characteristics, treatment regimens, and outcomes in adolescents (aged ≥ 10 years) with OPHG (diagnosis during 1990-2006). Progression-free survival was compared with that in a cohort of younger children (aged <10 years). RESULTS: Thirty-three adolescents (19 females, 6 with neurofibromatosis type 1) with OPHG were identified within 2 Canadian pediatric oncology institutions. The majority presented with visual symptoms (82%). More than 55% (18 of 33) involved the posterior tract and/or hypothalamus (modified Dodge classification 3/4). Seventeen were initially observed; 8 remained progression free. Of the 25 of 33 adolescents who required active treatment, 9 (36%) needed second-line therapy. The progression-free survival for any first active treatment at age <10 years (52 of 102) or ≥ 10 years (25 of 33) was similar (46.9 vs 46.8 months; P = .60). In those who received chemotherapy as first-line treatment or after prior nonchemotherapy treatment failure, the progression-free survival trend was superior (62.9 vs 38.9 months) in those aged ≥ 10 years although not statistically significant (P = .16). CONCLUSIONS: Chemotherapy is a valuable treatment modality for the achievement of disease control even in adolescents; their progression-free survival compares favorably with that in younger children. We propose that chemotherapy be considered as a first-line modality in adolescents, avoiding potential radiation-associated morbidities.


Asunto(s)
Antineoplásicos/uso terapéutico , Neoplasias Hipotalámicas/tratamiento farmacológico , Glioma del Nervio Óptico/tratamiento farmacológico , Adolescente , Factores de Edad , Niño , Preescolar , Terapia Combinada , Femenino , Estudios de Seguimiento , Humanos , Neoplasias Hipotalámicas/mortalidad , Neoplasias Hipotalámicas/patología , Lactante , Recién Nacido , Masculino , Clasificación del Tumor , Glioma del Nervio Óptico/mortalidad , Glioma del Nervio Óptico/patología , Pronóstico , Estudios Retrospectivos , Tasa de Supervivencia , Factores de Tiempo
16.
Pediatr Blood Cancer ; 57(1): 97-104, 2011 Jul 15.
Artículo en Inglés | MEDLINE | ID: mdl-21328524

RESUMEN

OBJECTIVES: To assess the quality and content of Internet information about cancer from the perspectives of adolescents with cancer (AWC), their parents and healthcare professionals (HCP). METHODS: Key words relevant to pediatric cancer were searched across 6 search engines. Quality of information was appraised using the DISCERN tool. Website content completeness, accuracy, readability, cultural sensitivity, and desirability were assessed. RESULTS: Only 29 websites had DISCERN scores above 50 (indicating fair quality; mean 55.76 ± 8.23, range 42.50-70.5). The majority of sites targeted parents and only four (14%) were specific to AWC. Overall completeness of the sites was rated 11.46 out of 20 (± 3.60; range 4-17.5) and accuracy was rated 4/4, indicating high accuracy with moderate completeness. The average SMOG score was 11.87 (± 2.51, range 7.7-18.67) and the Flesch Reading Ease score was 57.44 (± 16.94, range 9.1-92.4) indicating that the material was too difficult to read. The average cultural sensitivity scores for the Format, Written message and Visual material scales were 3.08/4 (± 0.53, range 2-4), 3.48/4 (± 0.41, range 2.6-4) and 2.84/4 (± 1.03, range 0-4) indicating the websites were adequately culturally sensitive. On Average, websites had 4/21 features from the desirability checklist, indicating the sites had low desirability. CONCLUSION: Given the paucity of high quality Internet health information at an appropriate reading level for AWC there is a critical need for HCP's to develop Internet programs to meet their unique needs.


Asunto(s)
Internet , Neoplasias , Educación del Paciente como Asunto/métodos , Programas Informáticos , Adolescente , Femenino , Humanos , Masculino
17.
Pediatrics ; 126(4): e851-8, 2010 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-20876178

RESUMEN

OBJECTIVE: Our aim was to estimate the cumulative effective doses (CEDs) from radiologic procedures for a cohort of pediatric oncology patients. METHODS: A retrospective cohort study of the imaging histories of 150 pediatric oncology patients (30 each in 5 subgroups, that is, leukemia, lymphomas, brain tumors, neuroblastomas, and assorted solid tumors) for 5 years after diagnosis was performed. All procedures involving ionizing radiation were recorded, including radiography, computed tomography (CT), nuclear medicine (NM) studies, fluoroscopy, and interventional procedures. CED estimates were calculated. RESULTS: Individual CED estimates ranged from <1 mSv to 642 mSv, with a median of 61 mSv. CT and NM were the greatest contributors; CT constituted 30% of procedures but 52% of the total CED, and NM constituted 20% and 46%, respectively. There was considerable variability between tumor subgroups. CED estimates were highest in the neuroblastoma (median: 213 mSv [range: 36-489 mSv]) and lymphoma (median: 191 mSv [range: 10-642 mSv]) groups and lowest in the leukemia group (median: 5 mSv [range: 0.2-57 mSv]). CONCLUSIONS: CEDs from diagnostic and interventional imaging for pediatric oncology patients vary considerably according to diagnoses, individual clinical courses, and imaging modalities used. Increased awareness may promote strategies to reduce the radiation burden to this population.


Asunto(s)
Neoplasias/diagnóstico por imagen , Neoplasias/radioterapia , Dosis de Radiación , Adolescente , Niño , Preescolar , Femenino , Fluoroscopía , Humanos , Lactante , Recién Nacido , Leucemia/diagnóstico por imagen , Leucemia/radioterapia , Linfoma/diagnóstico por imagen , Linfoma/radioterapia , Masculino , Neuroblastoma/diagnóstico por imagen , Neuroblastoma/radioterapia , Radiografía Intervencional , Cintigrafía , Tomografía Computarizada por Rayos X
18.
Pediatr Blood Cancer ; 55(7): 1356-61, 2010 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-20730881

RESUMEN

BACKGROUND: Childhood cancer survivors have identified fertility preservation as a major concern. Sperm banking is an established fertility preservation option in pubertal males. We sought to describe current practices in Canadian pediatric oncology programs, and to identify perceived barriers to sperm banking for male adolescents. PROCEDURE: A questionnaire was developed to (1) describe current sperm banking practices and facilities; (2) report on the utilization of sperm banking; and (3) identify barriers to sperm banking and possible solutions to improve current practices. A healthcare professional with an interest in fertility preservation within each institution was approached to participate in the study. RESULTS: Fifteen of 16 institutions participated, 2 have fertility preservation teams. Only one has written guidelines or adolescent focused educational material. Over 2 years, 50/262 (19%) adolescents in 12 institutions successfully banked a specimen. In 11 of these, additional information was available: of 85/172 (49%) adolescents offered the option to bank, 38/85 (45%) subsequently attempted. Reported barriers to sperm banking included the pressure to start therapy and restricted banking hours. Formal education of healthcare providers in fertility preservation practices, provision of financial support for families, and an adolescent focused approach were identified as important initiatives to improve sperm banking. CONCLUSIONS: There is a disparity in current sperm banking practices in Canada and at present, <25% of eligible male adolescents attempt to bank sperm. The development of a fertility preservation team, adolescent-specific guidelines, adolescent friendly sperm banking units, financial support, and improving knowledge translation among professionals and patients may improve the rates of banking.


Asunto(s)
Servicios de Salud del Adolescente , Instituciones Oncológicas , Fertilidad , Neoplasias/terapia , Bancos de Esperma/estadística & datos numéricos , Adolescente , Canadá , Costos y Análisis de Costo , Recolección de Datos , Accesibilidad a los Servicios de Salud , Humanos , Masculino , Bancos de Esperma/economía
19.
Pediatr Blood Cancer ; 55(3): 407-13, 2010 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-20658609

RESUMEN

BACKGROUND: Despite concerns regarding ionizing radiation exposures from diagnostic imaging procedures in pediatric patients, many are deemed unavoidable or even mandated by treatment protocols. A prior review at our institution found patients with lymphoma had a higher median cumulative radiation exposure (191 mSv) versus other oncology subgroups (61 mSv). PURPOSE: Estimations of cumulative diagnostic radiation exposures were tabulated for 5 years from the first diagnostic scan for 30 consecutive lymphoma patients diagnosed in 2001. Each individual imaging procedure was reviewed and classified as protocol mandated or discretionary (for disease surveillance, good patient care or radiologist request). RESULTS: Almost all patients (28/29) received chemotherapy; one had surgery only. Individual cumulative radiation exposures ranged from 10 to 642 mSv. Over 5 years, 690 procedures were performed; 303 (44%) X-rays, 203 (29%) CTs, 157 (23%) radionucleotide, and 27 (4%) interventional procedures. Of these, 238 (34%) were protocol required and 452 (66%) discretionary (224 as part of good patient care for a co-morbid illness and 228 for evaluation of possible disease progression/surveillance). A total of 86/217 (40%) studies (including 43 CTs and 38 radionucleotide scans) were performed when the recurrence risk was low (>2 years off therapy). CONCLUSIONS: The majority of ionizing radiation procedures in this lymphoma cohort were discretionary. Given the excellent outcome of this group and the long-term risks; rational use of discretionary surveillance procedures is necessary. Guidelines for the appropriate use of surveillance imaging based on probability of risk recurrence must be developed in order to minimize ionizing radiation exposure.


Asunto(s)
Linfoma/diagnóstico por imagen , Monitoreo de Radiación , Niño , Preescolar , Humanos , Lactante , Dosis de Radiación , Radiación Ionizante , Radiografía/estadística & datos numéricos , Cintigrafía/estadística & datos numéricos
20.
J Pediatr Hematol Oncol ; 31(9): 702-4, 2009 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-19684523
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