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1.
J Pediatr Gastroenterol Nutr ; 78(4): 862-870, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38426724

RESUMO

OBJECTIVES: The impact of disease burden extends beyond pediatric inflammatory bowel disease (IBD) patients to include their parents. Previous studies, predating the biologic era, have highlighted parental concerns about potential side effects associated with IBD medications. However, there is a notable gap in the literature regarding parents' perceptions of clinical studies involving pediatric IBD patients. This study aims to explore the specific concerns troubling parents of children with IBD, identifying factors influencing these concerns, and assesses parental willingness to allow their child's participation in clinical studies. METHODS: Utilizing social media, we disseminated an anonymous questionnaire to parents of pediatric IBD patients. The questionnaire encompassed queries about parental willingness for their child to partake in clinical studies, aspects of the disease deemed bothersome, and the sense of coherence scale (SOC). RESULTS: Responses were obtained from 101 parents, with a mean age of 46.4, of whom 82.2% were female. Concerns about potential future side effects of their child's medications surpassed worries about disease symptoms (80.04% vs. 73.47%). Linear regression analysis revealed that parents with lower SOC scores, limited medical care accessibility, and a higher age of the child at diagnosis, exhibited heightened concerns about the future impact of the disease on their child (p = 0.016, 0.003, and 0.045, respectively). While a majority rejected participation in studies involving new medications (54.5%), there was greater agreement for studies on nutritional therapies (84.2%) and complementary medicine (91.1%). Classification tree analysis indicated that women were more inclined to permit their child's participation in studies focusing on complementary medicine (adjusted p = 0.002). CONCLUSION: Parents of IBD patients express greater apprehension about potential side effects from IBD medications and display reluctance toward their child participating in clinical studies related to medications.


Assuntos
Terapias Complementares , Doenças Inflamatórias Intestinais , Criança , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Pais , Inquéritos e Questionários , Efeitos Psicossociais da Doença
2.
Neurol Genet ; 9(5): e200097, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37646004

RESUMO

Objectives: Deficiency of adenosine deaminase 2 (DADA2) is a rare, recessively inherited autoinflammatory disease with a wide clinical spectrum of manifestations, including strokes and vasculitis. Methods: We report a case of a patient with DADA2 who presented with neurologic manifestations. Results: A 42-year-old woman with a known diagnosis of polyarteritis nodosa experienced several episodes of TIAs. Neuroimaging revealed 2 aneurysms in unusual locations. Her young age, ethnic origin, absent of cardiovascular risk factors, and skin involvement raised the suspicion of DADA2. Genetic testing confirmed the diagnosis, and a directed treatment with anti-TNF was initiated. Discussion: DADA2, although thought to be rare, needs to be borne in mind when evaluating patients with a combination of neurologic and systemic symptoms, as early diagnosis and treatment are imperative in preventing permanent disability.

3.
Toxicon ; 206: 51-54, 2022 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-34954132

RESUMO

INTRODUCTION: The most common venomous snake in Israel, both in geographic spread and in number of snakebite incidents, is Daboia (Vipera) palaestinae. The clinical presentation of D. palaestinae envenomation varies and includes both local and systemic symptoms. Studies conducted on D. palaestinae revealed different amounts of venom in the snakes' glands in different seasons, however little is known regarding the potential impact of this finding on the clinical presentation after D. palaestinae bites during different seasons. OBJECTIVE: To evaluate whether there is a difference in the severity of the clinical presentation of D. palaetinae bites in different seasons. MATERIAL AND METHODS: A retrospective chart review study including all patients diagnosed with D. palaestinae bites treated at Shamir Medical Center from 2006 through 2020. Patients were divided into two groups: early bite season - spring and early summer, and late bite season - late summer and autumn. Variables examined included demographic features, admission details and treatment administrated. RESULTS: One hundred and seven D. palaestinae bite victims were included, forty-five were bitten during the early season and sixty-two during the late season. Four patients in the early season (8.9%) and one patient (1.6%) in the late season presented with decreased level of consciousness, and four patients, all from the early season group, required mechanical ventilation (p < 0.05) Vasopressors were used in six patients (13.3%) during the early season and two (3.2%) during the late season; (p = 0.06). There were no other differences between the groups, except for a lowest platelet count during hospitalization (mean 161.5 ± 51 K/µl during early season and 196.9 ± 77 K/µl during late season (p < 0.01). CONCLUSIONS: D. palaestinae bite victims more often present as critically ill patients during the spring and early summer compared to late summer and autumn. Hospitals should be prepared with appropriate staff training and medications for treating such patients, especially during the early season. However, in general, D. palaestinae bites are as dangerous during the late season as they are during the early season, and all snake bite victims should be treated with a high index of suspicion regardless of the season.


Assuntos
Mordeduras de Serpentes , Antivenenos/uso terapêutico , Humanos , Estudos Retrospectivos , Estações do Ano , Mordeduras de Serpentes/tratamento farmacológico , Mordeduras de Serpentes/epidemiologia , Venenos de Víboras/toxicidade
4.
Early Hum Dev ; 137: 104827, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31374456

RESUMO

AIMS: To determine the impact on families (IOF) of former preterm infants (gestational age < 32 weeks) after posthemorrhagic hydrocephalus requiring shunt (PHH-S), and to identify risk factors of family dysfunction. STUDY DESIGN: 38 preterm infants with PHH-S were matched for gestational age, birthweight, and gender with preterm infants with normal cranial ultrasonography. IOF questionnaire was administered at 5.7 ±â€¯2 years (higher IOF score indicates worse impact). RESULTS: Families of PHH-S children exhibited significantly worse IOF compared to controls in financial (9.2 ±â€¯2.2 vs 5.9 ±â€¯1.4), family-personal (26.6 ±â€¯5.2 vs 20.2 ±â€¯2.8), and disruptive social (21.4 ±â€¯4.9 vs 16.7 ±â€¯3.1) domains (P < 0.001). Multivariate regression incorporating neonatal risk factors revealed an independent effect of parenchymal brain involvement (ß:0.4, P:0.002) and neonatal seizures (ß:0.3, p:0.007) on total IOF. Neurosensory morbidity was significantly higher in the PHH-S group, including cerebral palsy (81.6%), epilepsy (47.4%), problems with vision (63.2%), feeding (39.5%) and hearing (18.4%), chronic health problems (44.7%) and hospital admissions in the last 6 months (44.7%). Worse IOF scores of PHH-S families were associated with socioeconomic status and neurodevelopmental morbidities: cerebral palsy severity, feeding problems, number of neurosurgeries, low cognitive, personal-social, and adaptive scores (P < 0.05). Multivariate analysis indicated an independent contribution from cerebral palsy severity (ß:0.5, p:0.002) and socioeconomic status (ß:-0.4, P: 0.01). CONCLUSIONS: Families of preterm children after PHH-S exhibit significantly worse IOF scores compared to families of preterm peers. Worse IOF is associated with severe hemorrhage, neurodevelopmental morbidities and socioeconomic status. A family centered intervention is warranted after PHH-S.


Assuntos
Hemorragia Cerebral/epidemiologia , Paralisia Cerebral/epidemiologia , Relações Familiares , Hidrocefalia/epidemiologia , Doenças do Prematuro/epidemiologia , Recém-Nascido Prematuro/crescimento & desenvolvimento , Adulto , Pré-Escolar , Feminino , Humanos , Hidrocefalia/cirurgia , Recém-Nascido , Recém-Nascido Prematuro/psicologia , Doenças do Prematuro/psicologia , Masculino , Classe Social , Derivação Ventriculoperitoneal
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