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1、205J. Reynolds and S. Olitsky (eds.), Pediatric Retina, DOI: 10.1007/978-3-642-12041-1_9, Springer-Verlag Berlin Heidelberg 20119.1 IntroductionRetinoblastoma is the most common ocular cancer in children occurring in 1/15,000 to 20,000 live births, unchanged over many years 1. Since only infants and
2、 children develop retinoblastoma, the birth rate and infant mortality rate of a country are the basis to esti-mate the number of affected children. India, with the highest birth rate in the world, also has the highest prevalence of retinoblastoma, estimated to be 1,600 new cases each year (Table 9.1
3、). It is in such countries with high numbers of children with retinoblastoma that standardized optimal therapy may be especially valuable. Also, in countries with high numbers of retinoblastoma patients, clinical trials with significant enrollment can be especially important for advancing therapy of
4、 a very rare tumor such as retinoblastoma.Although the potential cure rate and life expectancy of retinoblastoma patients has improved with innovative ther-apies, their implementation varies tremendously between centers. The inconsistent management of small numbers of cases per center makes comparis
5、on of efficacy difficult. Clinical trials are an optimal way to advancing the knowl-edge of effective therapy 2 and formalize treatments into a well thought-out, peer-reviewed, documented, and audited plan. Pediatric oncology has been at the forefront in using formal clinical trials to develop and v
6、alidate novel therapies, so that they may be ultimately formulated into standardized optimal therapies. It is also recognized that children on clinical trials generally have better outcomes than children treated ad hoc. Therefore, both caregivers and patients contribute to advancing treatment and op
7、timizing outcomes by designing and participating in clinical trials.Because retinoblastoma is a rare condition, clinical tri-als require international collaboration to achieve signifi-cant enrollment, and are often expensive and challenging to initiate and conduct. The success of such trials require
8、s a standardized language surrounding the various steps of management. Clinical Care Good Practice Guidelines and more detailed, locally adaptable, Standard Operating Procedures (SOPs) may capture some of the benefits of clinical trials, without actually expending the huge costs required for interna
9、tional collaboration and the conduct of multicenter trials. Indeed, these may be effective tools to aid the collaboration and participation of diverse mul-tidisciplinary teams from different institutions, including caregivers, patients and parents. Although meaningful advances in treatment outcomes
10、still depend ultimately on clinical trial validation of novel research, standard-ization of care through Guidelines and SOPs can do much to facilitate prospective and retrospective clinical evaluations. Guidelines for care of children and families affected by retinoblastoma have been published by th
11、e Canadian Retinoblastoma Society and are available on the Internet http:/pubservices.nrc-cnrc.ca/rp-ps/inDe-tail.jsp?jcode=cjo&lang=eng&vol=44&is=S2.We describe here, a framework for Retinoblastoma Good Practice Guidelines in the form of a series of SOPs. These SOPs are designed to cover the comple
12、xity of the elements of care for patients and families affected by A Language for Retinoblastoma: Guidelines and Standard Operating ProceduresAlejandra Valenzuela, Helen S.L. Chan, Elise Hon, and Brenda L. Gallie A. ValenzuelaNew Orleans, Mississipi, USA e-mail: E. Hon Departments of Ophthalmology &
13、 Visual Science, University of Toronto, Toronto, ON, Canada e-mail: H.S.L. Chan Departments of Pediatrics, Division of Hematology/Oncology, Hospital for Sick Children, University of Toronto, Toronto, ON, Canada e-mail: B.L. Gallie (*) Princess Margaret Hospital, University of Toronto, 610 University
14、 Avenue, Toronto, ON M5G 2M9, Canada e-mail: 9206A. Valenzuela et al.retinoblastoma. By formalizing SOPs, patient care will be organized and simplified, so that retinoblastoma man-agement is improved in many aspects. Multidisciplinary teamwork will be facilitated. Clinicians, trainees, auxil-iary ca
15、regivers, and the families will perceive and under-stand the treatment options clearly. Each individual childs “menu of care” will include selected SOPs at cer-tain times during the course of treatment. Therefore, the overall process can be viewed as a “language for retino-blastoma,” with each of th
16、e SOPs constituting the “words” of different “sentences,” in the narrative describing the childs and the familys experience with retinoblastoma.SOPs also provide a standard of care in ocular oncol-ogy, allowing the assessment of the efficacy and perfor-mance of the team. Each SOP specifies the objectives, scope, applicability, team member responsibilities, clin-ical significance, and consequences if the SOP is not followed, specimen collection guidelines, required materials, and analysis of the
