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PURPOSE: We evaluated DECIDE, an online pretest decision-support tool for diagnostic genomic testing, in nongenetics specialty clinics where there are no genetic counselors (GCs). METHODS: Families of children offered genomic testing were eligible to participate. Fifty-six parents/guardians completed DECIDE at home, at their convenience. DECIDE includes an integrated knowledge quiz and decisional conflict screen. Six months later, parents were offered follow-up questionnaires and interviews about their experiences. RESULTS: Forty parents (71%) had sufficient knowledge and no decisional conflict surrounding their testing decision, but 6 of this group had residual questions. These 6, plus 16 with decisional conflict or insufficient knowledge, saw a GC. At follow-up, little-to-no decisional regret and few negative emotions were identified in any parents. Most chose testing and described their decision as easy, yet stressful, and described many motivations for sequencing. Parents appreciated the simple comprehensive information DECIDE provided and the ability to view it in a low-stress environment. CONCLUSION: DECIDE provides adequate decision-support to enable most parents to make value-consistent choices about genetic testing for their child. Parents reported that DECIDE helped to clarify motivations for pursuing (or declining) testing. DECIDE is a timely, well-tested, and accessible tool in clinical settings without GCs.
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BACKGROUND: SCN8A-related disorders are a group of variable conditions caused by pathogenic variations in SCN8A. Online Mendelian Inheritance in Man (OMIM) terms them as developmental and epileptic encephalopathy 13, benign familial infantile seizures 5 or cognitive impairment with or without cerebellar ataxia. METHODS: In this study, we describe clinical and genetic results on eight individuals from six families with SCN8A pathogenic variants identified via exome sequencing. RESULTS: Clinical findings ranged from normal development with well-controlled epilepsy to significant developmental delay with treatment-resistant epilepsy. Three novel and three reported variants were observed in SCN8A. Electrophysiological analysis in transfected cells revealed a loss-of-function variant in Patient 4. CONCLUSIONS: This work expands the clinical and genotypic spectrum of SCN8A-related disorders and provides electrophysiological results on a novel loss-of-function SCN8A variant.
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Dysfonctionnement cognitif , Épilepsie généralisée , Épilepsie , Humains , Épilepsie/génétique , Génotype , Phénotype , Mutation/génétique , Canal sodique voltage-dépendant NAV1.6/génétiqueRÉSUMÉ
OBJECTIVES: Although hemispheric surgeries are among the most effective procedures for drug-resistant epilepsy (DRE) in the pediatric population, there is a large variability in seizure outcomes at the group level. A recently developed HOPS score provides individualized estimation of likelihood of seizure freedom to complement clinical judgement. The objective of this study was to develop a freely accessible online calculator that accurately predicts the probability of seizure freedom for any patient at 1-, 2-, and 5-years post-hemispherectomy. METHODS: Retrospective data of all pediatric patients with DRE and seizure outcome data from the original Hemispherectomy Outcome Prediction Scale (HOPS) study were included. The primary outcome of interest was time-to-seizure recurrence. A multivariate Cox proportional-hazards regression model was developed to predict the likelihood of post-hemispheric surgery seizure freedom at three time points (1-, 2- and 5- years) based on a combination of variables identified by clinical judgment and inferential statistics predictive of the primary outcome. The final model from this study was encoded in a publicly accessible online calculator on the International Network for Epilepsy Surgery and Treatment (iNEST) website (https://hops-calculator.com/). RESULTS: The selected variables for inclusion in the final model included the five original HOPS variables (age at seizure onset, etiologic substrate, seizure semiology, prior non-hemispheric resective surgery, and contralateral fluorodeoxyglucose-positron emission tomography [FDG-PET] hypometabolism) and three additional variables (age at surgery, history of infantile spasms, and magnetic resonance imaging [MRI] lesion). Predictors of shorter time-to-seizure recurrence included younger age at seizure onset, prior resective surgery, generalized seizure semiology, FDG-PET hypometabolism contralateral to the side of surgery, contralateral MRI lesion, non-lesional MRI, non-stroke etiologies, and a history of infantile spasms. The area under the curve (AUC) of the final model was 73.0%. SIGNIFICANCE: Online calculators are useful, cost-free tools that can assist physicians in risk estimation and inform joint decision-making processes with patients and families, potentially leading to greater satisfaction. Although the HOPS data was validated in the original analysis, the authors encourage external validation of this new calculator.
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Épilepsie pharmacorésistante , Épilepsie , Hémisphérectomie , Spasmes infantiles , Enfant , Humains , Hémisphérectomie/méthodes , Spasmes infantiles/chirurgie , Études rétrospectives , Fluorodésoxyglucose F18 , Résultat thérapeutique , Épilepsie/imagerie diagnostique , Épilepsie/chirurgie , Crises épileptiques/diagnostic , Crises épileptiques/étiologie , Crises épileptiques/chirurgie , Épilepsie pharmacorésistante/imagerie diagnostique , Épilepsie pharmacorésistante/chirurgie , Imagerie par résonance magnétique , ÉlectroencéphalographieRÉSUMÉ
INTRODUCTION: Economic hardship (EH) can negatively influence cancer outcomes. Little is known about the factors that are associated with higher levels of EH among patients with breast cancer (BC). This paper describes EH in women with early-stage BC prior to or at their first chemotherapy treatment (baseline) and explores whether there are differences by race, area deprivation, stress, symptom distress, and social support. PATIENTS AND METHODS: A descriptive comparative/correlational design was employed using baseline data of a multisite, longitudinal, multimethod study comparing the symptom experience and management prior to prescribed chemotherapy for women with early-stage BC. Participants completed measures for EH, perceived stress, symptom distress, and social support. Race was measured by self-report. Area deprivation indices (ADI) measuring neighborhood economic factors were calculated from publicly available websites. RESULTS: Participants (N = 248; age = 52.9 ± 12.3 years) were 62% White and 38% Black, 54% partnered, and 98% insured. Compared to White patients, Black patients reported higher (worse) EH (1.2 ± 3.0 vs. -0.7 ± 2.4), lived in areas of greater deprivation (80.1 ± 2.1 vs. 50.5 ± 23.5),and were more likely to report inadequate household income (Black: 30.5%; White: 11.1%). Adjusting for race and age, being Black (P< .001), living in an area of greater deprivation (P = .049), higher perceived stress (P = .008), lower perceived appraisal (P = .040), and less tangible support (P < .001) contributed to greater EH. Worse symptom distress trended toward greater EH (P = .07). CONCLUSIONS: This study emphasizes the importance of incorporating baseline holistic assessment to identify patients most likely to experience EH during early-stage BC treatment.
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Tumeurs du sein , Stress financier , Adulte , Sujet âgé , Femelle , Humains , Adulte d'âge moyen , , Tumeurs du sein/traitement médicamenteux , Soutien social , BlancRÉSUMÉ
Over the course of the COVID-19 pandemic, school students suffered from a reduction in opportunities to connect with higher education institutions, meet scientific role models in person, discuss scientific career options, and carry out hands-on practical laboratory activities. Current Chemistry Investigators (CCI) is a successful electrochemistry-based STEM career intervention program, developed and evaluated through a co-creation process with teachers and students. The goals of CCI are 2-fold: first, to provide school students with career advice through tangible scientific role models and, second, to provide real-world context for the fundamentals of electrochemistry through hands-on activities. Herein, the development of a novel electro-analytical workshop from concept through to delivery with over a thousand students having taken part to date is reported. Students are tasked with solving why a battery malfunctioned through quantitative and qualitative analyses of an electrolyte using conductivity meters. Student feedback is also gathered anonymously through the use of a classroom response system (also known as "clickers"). Together with feedback from teachers, a robust evaluation is presented to measure the impact of providing tangible scientific role models and the usefulness of the workshop.
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OBJECTIVE: Lennox-Gastaut syndrome (LGS) is a severe form of epileptic encephalopathy, presenting during the first years of life, and is very resistant to treatment. Once medical therapy has failed, palliative surgeries such as vagus nerve stimulation (VNS) or corpus callosotomy (CC) are considered. Although CC is more effective than VNS as the primary neurosurgical treatment for LGS-associated drop attacks, there are limited data regarding the added value of CC following VNS. This study aimed to assess the effectiveness of CC preceded by VNS. METHODS: This multinational, multicenter retrospective study focuses on LGS children who underwent CC before the age of 18 years, following prior VNS, which failed to achieve satisfactory seizure control. Collected data included epilepsy characteristics, surgical details, epilepsy outcomes, and complications. The primary outcome of this study was a 50% reduction in drop attacks. RESULTS: A total of 127 cases were reviewed (80 males). The median age at epilepsy onset was 6 months (interquartile range [IQR] = 3.12-22.75). The median age at VNS surgery was 7 years (IQR = 4-10), and CC was performed at a median age of 11 years (IQR = 8.76-15). The dominant seizure type was drop attacks (tonic or atonic) in 102 patients. Eighty-six patients underwent a single-stage complete CC, and 41 an anterior callosotomy. Ten patients who did not initially have a complete CC underwent a second surgery for completion of CC due to seizure persistence. Overall, there was at least a 50% reduction in drop attacks and other seizures in 83% and 60%, respectively. Permanent morbidity occurred in 1.5%, with no mortality. SIGNIFICANCE: CC is vital in seizure control in children with LGS in whom VNS has failed. Surgical risks are low. A complete CC has a tendency toward better effectiveness than anterior CC for some seizure types.
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Épilepsie , Syndrome de Lennox-Gastaut , Stimulation du nerf vague , Enfant , Mâle , Humains , Nourrisson , Enfant d'âge préscolaire , Adolescent , Syndrome de Lennox-Gastaut/chirurgie , Études rétrospectives , Corps calleux/chirurgie , Crises épileptiques/thérapie , Syncope , Résultat thérapeutique , Nerf vagueRÉSUMÉ
OBJECTIVE: This longitudinal cohort study aimed to identify trajectories of parent well-being over the first 2 years after their child's evaluation for candidacy for epilepsy surgery, and to identify the baseline clinical and demographic characteristics associated with these trajectories. Parent well-being was based on parent depressive and anxiety symptoms and family resources (i.e., family mastery and social support). METHODS: Parents of 259 children with drug-resistant epilepsy (105 of whom eventually had surgery) were recruited from eight epilepsy centers across Canada at the time of their evaluation for epilepsy surgery candidacy. Participants were assessed at baseline and 6-month, 1-year, and 2-year follow-up. The trajectories of parents' depressive symptoms, anxiety symptoms, and family resources were jointly estimated using multigroup latent class growth models. RESULTS: The analyses identified three trajectories: an optimal-stable group with no/minimal depressive or anxiety symptoms, and high family resources that remained stable over time; a mild-decreasing-plateau group with mild depressive and anxiety symptoms that decreased over time then plateaued, and intermediate family resources that remained stable; and a moderate-decreasing group with moderate depressive and anxiety symptoms that decreased slightly, and low family resources that remained stable over time. Parents of children with higher health-related quality of life, fathers, and parents who had higher household income were more likely to have better trajectories of well-being. Treatment type was not associated with the trajectory groups, but parents whose children were seizure-free at the time of the last follow-up were more likely to have better trajectories (optimal-stable or mild-decreasing-plateau trajectories). SIGNIFICANCE: This study documented distinct trajectories of parent well-being, from the time of the child's evaluation for epilepsy surgery. Parents who present with anxiety and depressive symptoms and low family resources do not do well over time. They should be identified and offered supportive services early in their child's epilepsy treatment history.
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Épilepsie pharmacorésistante , Épilepsie , Enfant , Humains , Études longitudinales , Qualité de vie , Parents , Épilepsie pharmacorésistante/chirurgie , Épilepsie/diagnostic , DépressionRÉSUMÉ
PURPOSE: Seizure freedom is an important predictor of health-related quality of life (HRQOL) after pediatric epilepsy surgery. This study aimed to identify the pre-operative predictors of HRQOL 2 years after epilepsy surgery in children with drug-resistant epilepsy. METHODS: This multicenter prospective cohort study assessed pre-operative predictors including child (demographics and clinical variables), caregiver (including caregiver depressive and anxiety symptoms) and family characteristics. HRQOL was assessed using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55 pre-operatively and 2-years after surgery. Univariable linear regression analyses were done to identify significant preoperative predictors of HRQOL 2-years after surgery, followed by multivariable regression. RESULTS: Ninety-five children underwent surgery, mean age was 11.4 (SD=4.2) years, and 59 (62%) were male. Mean QOLCE scores were 57.4 (95%CI: 53.8, 61.0) pre-operatively and 65.6 (95%CI: 62.0, 69.1) after surgery. Univariable regression showed fewer anti-seizure medications (ß=-6.1 [95%CI: -11.2, -1.0], p = 0.019), older age at seizure onset (ß=1.6 [95%CI: 0.8, 2.4], p<0.001), higher pre-operative HRQOL (ß=0.7 [95%CI: 0.5, 0.8], p<0.001), higher family resources (ß=0.6 [95%CI: 0.3, 0.9], p<0.001), better family relationships (ß=1.7 [95%CI: 0.3, 3.1], p = 0.017) and lower family demands (ß=-0.9 [95%CI: -1.5, -0.4], p<0.001) were associated with higher HRQOL after surgery. Caregiver characteristics did not predict HRQOL after surgery (p>0.05). Multivariable regression showed older age at seizure onset (ß=4.6 [95%CI: 1.6, 7.6], p = 0.003) and higher pre-operative HRQOL (ß=10.2 [95%CI: 6.8, 13.6], p<0.001) were associated with higher HRQOL after surgery. CONCLUSION: This study underscores the importance of optimizing pre-operative HRQOL to maximize HRQOL outcome after pediatric epilepsy surgery.
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Background: SCN8A-related disorders are a group of variable conditions caused by pathogenic variations in SCN8A. Online Mendelian Inheritance in Man (OMIM) terms them as developmental and epileptic encephalopathy 13, benign familial infantile seizures 5 or cognitive impairment with or without cerebellar ataxia. Methods: In this study, we describe clinical and genetic results on eight individuals from six families with SCN8A pathogenic variants identified via exome sequencing. Results: Clinical findings ranged from normal development with well-controlled epilepsy to significant developmental delay with treatment-resistant epilepsy. Three novel and three reported variants were observed in SCN8A. Electrophysiological analysis in transfected cells revealed a loss-of-function variant in Patient 4. Conclusions: This work expands the clinical and genotypic spectrum of SCN8A-related disorders and provides electrophysiological results on a novel loss-of-function SCN8A variant.
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OBJECTIVES: The purpose of this longitudinal cohort study was to examine the variables that influence health-related quality of life (HRQOL) after epilepsy surgery in children. We examined whether treatment type (surgical vs medical therapy) and seizure control are related to other variables that have been shown to influence HRQOL, namely depressive symptoms in children with epilepsy or their parents, and the availability of family resources. METHODS: In total, 265 children with drug-resistant epilepsy were recruited from eight epilepsy centers across Canada at the time of their evaluation for candidacy for epilepsy surgery and were assessed at baseline, 6-month, 1-year, and 2-year follow-up. Parents completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) and measures of family resources and depression; children completed depression inventories. Causal mediation analyses using natural effect models were used to evaluate the extent to which the relationship between treatment and HRQOL was explained by seizure control, child and parent depressive symptoms, and family resources. RESULTS: Overall, 111 children underwent surgery and 154 were treated with medical therapy only. The HRQOL scores of surgical patients were 3.4 points higher (95% confidence interval [CI]: -0.2, 7.0) relative to medical patients at the 2-year follow-up after adjusting for baseline covariates, with 66% of the effect of surgery attributed to seizure control. Child or parent depressive symptoms and family resources had negligible mediation effects between treatment and HRQOL. The effect of seizure control on HRQOL was not mediated by child or parent depressive symptoms, or by family resources. SIGNIFICANCE: The findings demonstrate that seizure control is on the causal pathway between epilepsy surgery and improved HRQOL in children with drug-resistant epilepsy. However, child and parent depressive symptoms and family resources were not significant mediators. The results highlight the importance of achieving seizure control to improve HRQOL.
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Épilepsie pharmacorésistante , Épilepsie , Enfant , Humains , Qualité de vie , Études longitudinales , Épilepsie/traitement médicamenteux , Épilepsie/chirurgie , Épilepsie/diagnostic , Études de cohortes , Épilepsie pharmacorésistante/chirurgie , Enquêtes et questionnaires , Crises épileptiquesRÉSUMÉ
Importance: Health-related quality of life (HRQOL) is regarded as a key outcome for evaluating treatment efficacy. However, it is uncertain how HRQOL evolves after epilepsy surgery compared with medical therapy, such as whether it continues to improve over time, improves and then remains stable, or deteriorates after a period of time. Objective: To assess trajectory of HRQOL over 2 years in children with drug-resistant epilepsy (DRE) treated with surgery compared with medical therapy. Design, Setting, and Participants: Prospective cohort study assessing HRQOL longitudinally over 2 years. Participants were children recruited from 8 epilepsy centers in Canada from 2014 to 2019 with suspected DRE aged 4 to 18 years who were evaluated for surgery. Data were analyzed from May 2014 to December 2021. Exposures: Epilepsy surgery or medical therapy. Main Outcomes and Measures: HRQOL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55. HRQOL and seizure frequency were assessed at baseline, 6-month, 1-year, and 2-year follow-ups. Clinical, parent, and family characteristics were assessed at baseline. A linear mixed model was used to evaluate HRQOL over time, adjusting for baseline clinical, parent, and family characteristics. Results: There were 111 surgical and 154 medical patients (mean [SD] age at baseline was 11.0 [4.1] years; 118 [45%] were female). At baseline, HRQOL was similar among surgical and medical patients. HRQOL of surgical patients was 3.0 (95% CI, -0.7 to 6.8) points higher at 6-month, 4.9 (95% CI, 0.7 to 9.1) points higher at 1-year, and 5.1 (95% CI, 0.7 to 9.5) points higher at 2-year follow-ups compared with medical patients. Surgical patients experienced greater improvements in social functioning relative to medical patients, but not for cognitive, emotional, and physical functioning. At 2-year follow-up, 72% of surgical patients were seizure-free, compared with 33% of medical patients. Seizure-free patients reported higher HRQOL than those who were not. Conclusions and Relevance: This study provided evidence on the association between epilepsy surgery and children's HRQOL, with improvement in HRQOL occurring within the first year and remaining stable 2 years after surgery. By demonstrating that surgery improved seizure freedom and HRQOL, which has downstream effects such as better educational attainment, reduced health care resource utilization, and health care cost, these findings suggest that the high costs of surgery are justified, and that improved access to epilepsy surgery is necessary.
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Épilepsie pharmacorésistante , Épilepsie , Enfant , Humains , Femelle , Mâle , Qualité de vie/psychologie , Études prospectives , Épilepsie/chirurgie , Résultat thérapeutique , Épilepsie pharmacorésistante/chirurgieRÉSUMÉ
OBJECTIVE: Describe available data on birth defects and pregnancy loss in women with systemic lupus erythematosus (SLE) exposed to belimumab. METHODS: Data collected from belimumab clinical trials, the Belimumab Pregnancy Registry (BPR), and postmarketing/spontaneous reports up to 8 March 2020 were described. Belimumab exposure timing, concomitant medications and potential confounding factors were summarised descriptively. RESULTS: Among 319 pregnancies with known outcomes (excluding elective terminations), 223 ended in live births from which birth defects were identified in 4/72 (5.6%) in belimumab-exposed pregnancies and 0/9 placebo-exposed pregnancies across 18 clinical trials, 10/46 (21.7%) belimumab-exposed pregnancies in the BPR prospective cohort (enrolled prior to pregnancy outcome) and 0/4 belimumab-exposed pregnancies in the BPR retrospective cohort (enrolled after pregnancy outcome), and 1/92 (1.1%) in belimumab-exposed pregnancies from postmarketing/spontaneous reports. There was no consistent pattern of birth defects across datasets. Out of pregnancies with known outcomes (excluding elective terminations), pregnancy loss occurred in 31.8% (35/110) of belimumab-exposed women and 43.8% (7/16) of placebo-exposed women in clinical trials; 4.2% (2/48) of women in the BPR prospective cohort and 50% (4/8) in the BPR retrospective cohort; and 31.4% (43/137) of belimumab-exposed women from postmarketing/spontaneous reports. All belimumab-exposed women in clinical trials and the BPR received concomitant medications and had confounding factors and/or missing data. CONCLUSIONS: Observations reported here add to limited data published on pregnancy outcomes following belimumab exposure. Low numbers of exposed pregnancies, presence of confounding factors/other biases, and incomplete information preclude informed recommendations regarding risk of birth defects and pregnancy loss with belimumab use.
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Avortement spontané , Lupus érythémateux disséminé , Femelle , Humains , Grossesse , Immunosuppresseurs/usage thérapeutique , Lupus érythémateux disséminé/traitement médicamenteux , Issue de la grossesse , Études prospectives , Enregistrements , Études rétrospectives , Résultat thérapeutique , Essais cliniques comme sujetRÉSUMÉ
INTRODUCTION: Frailty has been proven to lead to higher morbidity and mortality rates in surgical patients, independent of age. The modified Frailty Index (mFI) is a validated means of assessing for frailty. AIM OF STUDY: The aim of this study is to ascertain if the mFI correlates with clinician experience in turning down patients for abdominal aortic aneurysm (AAA) surgery and/or AAA surveillance. METHODS: A contemporaneously recorded database of all AAA patients treated during 2017 at a large University Hospital was reviewed. Patients were categorised into the following groups; continued surveillance, turned down for surveillance, patient declined surveillance, patient offered surgery, patient turned down for surgery and patient declined surgery. RESULTS: One hundred and forty two patients were included. Twenty-eight patients <5.5 cm were turned down for surveillance with a mFI of 0.27. Forty-one patients <5.5 cm continued with surveillance, with a mFI of 0.09 (p < 0.0001). Eighteen patients >5.5 cm were turned down for surgical intervention with a median mFI of 0.36. Forty-two patients were offered surgical intervention had a median mFI of 0.09 (p < 0.0001). CONCLUSION: Frailty is associated with higher morbidity and mortality amongst frail patient cohorts. mFI is a valid and easy to use tool to predict perioperative outcomes in AAA intervention. It correlates well with senior, experienced clinicians' decision-making in relation to who should and who should not undergo elective AAA surgery and those patients who should have ongoing aneurysm surveillance.
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Anévrysme de l'aorte abdominale , Procédures endovasculaires , Fragilité , Humains , Fragilité/diagnostic , Fragilité/complications , Facteurs de risque , Reproductibilité des résultats , Anévrysme de l'aorte abdominale/chirurgie , Procédures endovasculaires/effets indésirables , Études rétrospectives , Complications postopératoires/étiologie , Résultat thérapeutique , Appréciation des risquesRÉSUMÉ
PURPOSE: Women being treated with chemotherapy for breast cancer experience menopausal symptoms that vary in presentation and impact on quality of life. The clinical visit before each chemotherapy cycle provides an important opportunity to allow patients to dialogue with their medical oncology healthcare providers about these symptoms and identify strategies for self-management. The objective of this study was to characterize patient and provider interactions regarding the menopausal symptom experience and management in the context of breast cancer treatment. METHODS: Thematic analysis was employed to analyze 61 transcripts from clinical encounters of women receiving chemotherapy treatment for breast cancer. Transcripts were chosen based on their inclusion of menopausal symptom discussion. RESULTS: Themes were separated into three distinct categories: patient, clinician, and dyadic themes. The overarching theme was goal discordance in the clinical visit, which was reflected in the following themes: unexpected and unprepared; distressed, disrupted and disturbed; clinical insensitivity; missed opportunity for management and empathy; and use of humor and colloquial language. Overall, women were unprepared for the menopausal symptom experience, and clinicians did not often provide management, interventions, or empathetic responses. CONCLUSION: There is a need to develop more astute assessment and communication regarding menopausal symptoms during the clinical visit. Possible interventions include a more holistic assessment, algorithms to facilitate the clinician's attention and response to menopausal symptoms, and treatment of symptoms.
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Tumeurs du sein , Humains , Femelle , Tumeurs du sein/traitement médicamenteux , Qualité de vie , Communication , Oncologie médicale , Soins ambulatoires , MénopauseRÉSUMÉ
Background Identity formation is a dynamic process and key developmental task that begins in adolescence. During this time, children look to adults as role models and mentors. These adults can have a significant impact on adolescents' decisions of appropriate or inappropriate behaviors, potentially causing a positive or negative change. Little research has been performed to identify these role models and understand how they affect the development of physical and mental health of children. Objective The goal of this study is to see if there is a relationship between identified role models, mentors, and/or heroes and adolescents' interest in education, participation in risky behavior, confidence level, happiness, safety, violence-related behaviors, and physical activity. Methods In this study, 198 children aged 11-18 years were identified on the scheduling platforms at various Hershey Medical Center sites to take a 10-minute survey via RedCap. The survey identified their role model, mentor, and/or hero and followed up with outcome questions from validated tools. Results The results show that 140 participants (70.7%) identified having a role model compared to 88 (44.4%) having mentors and 61 (30.8%) having heroes, and family members were the most identified figures for each category. There were significant differences between identified categories of role models, mentors, and heroes, and interest in education, happiness, risky behavior, and safety, while no significant differences were found for violence-related behavior, physical activity, and confidence level. Adolescents with family heroes had safer behavior (2.39 ± 0.70) than those with celebrity heroes (3.16 ±1.86, p=0.0277), and those with peer heroes (11.3 ± 2.31) had more risky behavior than those with celebrity heroes (9.16 ± 1.98, p=0.0347). However, children with adult peer heroes had a higher interest in education (2.00 ± 0) compared to those with celebrities (3.79 ± 1.03, p=0.0246) or public figures (3.78 ± 1.09, p=0.0333) as their heroes. Additionally, those with family (3.48 ± 1.05) or adult peers (3.32 ± 1.38) as their mentors had a higher interest in education compared to those with same-age peer mentors (5.80 ± 1.30, p=<0.0001). Adolescents with family mentors also had higher happiness scores (3.25 ± 0.33) than those with same-age peer mentors (2.59 ± 1.47, p=0.0358) and also engaged in safer behavior (2.52 ± 0.80) compared to all other categories (3.03 ±1.59, 0.0462). Conclusion These results point to the idea that who adolescents choose to look up to has effects on various aspects of their life that could affect both their physical and mental health status, with family members having the most impact. Further research could explore differences between which family members are chosen as role models, mentors, and heroes and what effect they might have on adolescent development.
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This study investigated the experiences of 25 caregivers of children with early-onset, treatment-resistant epilepsy who pursued whole exome sequencing to determine the impact of the test results on their child's treatment. Caregivers who consented to be recontacted were recruited from a previous study investigating the diagnostic yield of whole exome sequencing. A semistructured interview addressed questions based on one of 2 study phases. The first phase discussed the decision-making process for genetic testing (15 interviews), which revealed 4 major themes: (1) prognosis, (2) engagement, (3) concerns, and (4) autonomy. The second phase discussed the impact of genetic testing on treatment (10 interviews), which revealed 3 major themes: (1) testing features, (2) emotional impact, and (3) treatment outcomes. Overall, parents pursued genetic testing to obtain a clear prognosis, inform treatment decisions, engage with other families, and exercise autonomy. Caregivers felt that early testing is warranted to inform their child's diagnostic odyssey.
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Épilepsie , Parents , Aidants , Enfant , Épilepsie/diagnostic , Épilepsie/génétique , Épilepsie/psychologie , Dépistage génétique/méthodes , Humains , Parents/psychologie ,RÉSUMÉ
Gardening has the potential to improve health by providing access to nature, vegetables, and physical activity. However, scarce research exists on the health impacts of gardening on racial and ethnic minority urban populations in the United States. This study used qualitative interviews to examine the perceived physical and mental health effects of gardening in a primarily African American sample of 28 gardeners. Prominent physical health impacts attributed to gardening included providing an enjoyable source of activity, management of chronic diseases, and improved physical functioning. Participants also reported that gardening improved their mood, relieved stress, was an important part of their spirituality, contributed to their personal growth, and provided an opportunity for helping others. These findings suggest that gardening may improve physical and mental health among diverse groups.
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Jardinage , Santé mentale , Ethnies , Humains , Minorités , Population urbaineRÉSUMÉ
OBJECTIVE: Novel and minimally invasive neurotechnologies offer the potential to reduce the burden of epilepsy while avoiding the risks of conventional resective surgery. Few neurotechnologies have been tested in randomized controlled trials with pediatric populations, leaving clinicians to face decisions about whether to recommend these treatments with insufficient evidence about the relevant risks and benefits. This study specifically explores the preferences of clinicians for treating pediatric drug-resistant epilepsy (DRE) with novel neurotechnologies. METHODS: A discrete-choice experiment (DCE) was designed to elicit the preferences of clinicians with experience in treating children with DRE using novel neurotechnological interventions. The preferences for six key attributes used when making treatment decisions (chances of clinically significant improvement in seizures, major and minor risks from intervention, availability of evidence, financial burden for the family, and access to the intervention) were estimated using a conditional logit model. The estimates from this model were then used to predict the adoption of existing novel neurotechnological interventions. RESULTS: Sixty-eight clinicians completed the survey: 33 neurosurgeons, 28 neurologists, and 7 other clinicians. Most clinicians were working in the United States (74%), and the remainder (26%) in Canada. All attributes, apart from the nearest location with access to the intervention, influenced preferences significantly. The chance of clinically significant improvement in seizures was the most positive influence on clinician preferences, but low-quality evidence and a higher risk of major complications could offset these preferences. Of the existing neurotechnological interventions, vagus nerve stimulation was predicted to have the highest likelihood of adoption; deep brain stimulation had the lowest likelihood of adoption. SIGNIFICANCE: The preferences of clinicians are drive primarily by the likelihood of achieving seizure freedom for their patients, but preferences for an intervention are largely eradicated if only low quality of evidence supporting the intervention is available. Until better evidence supporting the use of potentially effective, novel neurotechnologies becomes available, clinicians are likely to prefer more established treatments.