首页 | 官方网站   微博 | 高级检索  
相似文献
 共查询到20条相似文献,搜索用时 23 毫秒
1.
2.
    
Abstract

Limited research is available on parental decision-making regarding their children’s participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child’s previous cancer experience. It is highly impacted by the quality of physicians’ communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians’ training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.  相似文献   

3.
4.
5.
    
Uneven strides in research and care have led to discrepancies in childhood cancer outcomes between high and low income countries (LICs). Collaborative research may help improve outcomes in LICs by generating knowledge for local scientific communities, augmenting knowledge translation, and fostering context-specific evaluation of treatment protocols. However, the risks of such research have received little attention. This paper investigates the relationship between pediatric oncology research in LICs and four core issues in the ethics literature: standard of care, trial benefits, ethics review, and informed consent. Our aims are to highlight the importance of this field and the need for further inquiry.  相似文献   

6.
7.
8.
    
Enrollment of patients in sickle cell intervention trials has been challenging due to difficulty in obtaining consent from a legal guardian and lack of collaboration between emergency medicine and hematology. We utilized education and preconsent in a pediatric multisite sickle cell intervention trial to overcome these challenges. Overall, 48 patients were enrolled after being preconsented. Variable Institutional Review Board policies related to preconsent validity and its allowable duration decreased the advantages of preconsent at some sites. The utility of preconsent for future intervention trials largely depends on local Institutional Review Board policies. Preeducation may also benefit the consent process, regardless of site differences.  相似文献   

9.
In medical practice, patients are frequently in a passive role with respect to consenting to medical measures. The basic threshold element of informed consent is medical competence to be controlled by individual self-criticism. The elements of information, such as disclosure and understanding, have to be adapted to the individual situation in order to achieve voluntariness and active autonomous authorization. In the paediatric age group, disclosure of information has to be guided by the age-dependent ability of understanding, leading to voluntariness and consent. Since force cannot be totally avoided in the management of children, parental information and consent should be as precise and conclusive as possible. The interaction between the paediatrician on the one hand, and the children and their parents on the other, is discussed.  相似文献   

10.
??Primary immunodeficiencies??PIDs?? are a type of rare disease characterized by a defect in the components of host immune system??the majority of which are monogenic diseases. Molecular diagnosis is important to the precision management of PIDs. Traditional Sanger sequencing and next-generation sequencing??NGS?? are the major tools. Although the former one is the gold standard of checking single target gene and of confirming NGS results??NGS is also in increasing demand in clinical practice. Both of them have pros and cons??and are complementary to each other. A 4-step approach strategy comprising Sanger sequencing and NGS is proposed for the molecular diagnosis of PIDs by the author. Some suggestions for the NGS application are also provided.  相似文献   

11.
    
Retinoblastoma is an ocular tumor that occurs in young children, in either heritable or sporadic manner. The relative rarity of retinoblastoma, and the need for expensive equipment, anesthesia, and pediatric ophthalmologic expertise, are barriers for effective treatment in developing countries. Also, with an average age‐adjusted incidence of two to five cases per million children, patient number limits development of local expertise in countries with small populations. Lebanon is a small country with a population of approximately 4.5 million. In 2012, a comprehensive retinoblastoma program was formalized at the Children's Cancer Institute (CCI) at the American University of Beirut Medical Center, and resources were allocated for efficient interdisciplinary coordination to attract patients from neighboring countries such as Syria and Iraq, where such specialized therapy is also lacking. Through this program, care was coordinated across hospitals and borders such that patients would receive scheduled chemotherapy at their institution, and monthly retinal examinations and focal laser therapy at the CCI in Lebanon. Our results show the feasibility of successful collaboration across borders, with excellent patient and physician adherence to treatment plans. This was accompanied by an increase in patient referrals, which enables continued expertise development. However, the majority of patients presented with advanced intraocular disease, necessitating enucleation in 90% of eyes in unilateral cases, and more than 50% of eyes in bilateral cases. Future efforts need to focus on expanding the program that reaches to additional hospitals in both countries, and promoting early diagnosis, for further improvement of globe salvage rates.  相似文献   

12.
    
The pediatric hematology and oncology (PHO) workforce landscape has been evolving over the past decades, with concern for waning interest in the subspecialty. We aimed to evaluate the impact of the initial PHO job search on fellow stress and anxiety, in addition to perceptions of the job search experience and potential areas of improvement. An anonymous survey consisting of demographics, emotional health impacts such as stress and anxiety, and job search experiences was developed and distributed to program leadership at all 74 PHO fellowship programs. At least one representative from 49 (66%) programs responded. Faculty were less likely than fellows to perceive that fellows are struggling to find jobs (p = .0198). However, faculty were more likely than fellows to perceive that fellows are either “extremely stressed” or “stressed” due to job search (p = .0003). By June 2021, 30 of 44 (68%) candidates had been offered a position, and 80% of those had accepted. There were no significant associations between fellow stress level and job offering, proximity to their ideal goals, or change in career type. Common barriers to the job search included geographic constraints and partner employment. Respondents identified centralized job listings, formal training on career development strategies, introduction to various career paths, and more transparency about the search as needed interventions. The perception of difficulty and stress regarding the job search is endorsed by most, identifying a need for more interventions to improve the experience. These data also highlight unmet mentorship and educational needs among PHO fellows in preparing for the job search.  相似文献   

13.
14.
15.
16.
    
Currently, there are several different scales that grade chemotherapy‐induced ototoxicity. This report highlights how the implications of the conclusions drawn from each scale differ and compare these prior scales to a more functionally based scale developed at Children's Hospital Boston. Additionally, this report introduces the concept of “ear‐age,” akin to the age at which one would expect the observed decrease in hearing as a consequence of normative aging (but documented in a child or young adult following chemotherapy). Pediatr Blood Cancer 2012; 59: 947–949. © 2012 Wiley Periodicals, Inc.  相似文献   

17.
One of the most difficult ethical dilemmas in paediatric practice is parental refusal to consent to life-saving treatment for their children. The ethical principles in such situations are complex. Although the 'best interests' of the child are of primary concern, these must be understood widely, as including all and not just medical interests. Though ultimately the courts must decide on a course of action where refusal is continued, we believe that in non-emergency cases consultation with a properly constituted multidisciplinary group will be of assistance. A national group of this kind has been recommended for New Zealand. This will ensure that all aspects of the cases are considered and can lessen the sense of 'parent versus medical profession' opposition. If this does not lead to a resolution, the opinion of the courts may be of assistance. Following a brief discussion of important ethical considerations, this article outlines a suggested constitution for an advisory committee and a set of guidelines for clinicians faced with parental refusal of treatment for their children.  相似文献   

18.
Before World War II no real subspecialization occurred in Norwegian pediatrics. In the early 1950s hematology and oncology were adopted as fields of special interest by a Jew Norwegian pediatricians. Gradually an increasing expansion has taken place, particularly in pediatric oncology, in parallel with the great advances in cancer treatment.  相似文献   

19.
20.
    
Paediatric research is essential for improving health outcomes of children. Waiting for adult studies before conducting paediatric studies will prolong the denial of effective treatment for children. If we rely on information from adult studies rather than conducting studies with children, we risk causing harm to children. In this paper, we identify and examine ethical issues unique to conducting research with children. These include the function and the value of a child's assent and the criteria that should guide a proxy in making decisions about a child's involvement in research, offering payment to children for research participation and acceptable levels of risk for paediatric research. Justice demands that children not be denied the benefits of research, and it is the role of the paediatric medical community to advocate not only for more research for children but also to ensure that the research conducted is of the highest quality.  相似文献   

设为首页 | 免责声明 | 关于勤云 | 加入收藏

Copyright©北京勤云科技发展有限公司    京ICP备09084417号

京公网安备 11010802026262号