Determining research priorities for young people with haematological cancer: A value-weighting approach

Determining research priorities for young people with haematological cancer: A value-weighting approach
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DOI:
10.1016/j.ejca.2010.06.013
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发表时间:
2010-12-01
影响因子:
8.4
通讯作者:
Williamson, Anna
Williamson, Anna
中科院分区:
医学1区
文献类型:
--
作者:
Clinton-McHarg, Tara;Paul, Christine;Williamson, Anna

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血液恶性肿瘤占影响青少年和年轻人(AYAs)的所有癌症的三分之一。供资机构经常面临如何调配资源的困境,以便为这一患者群体提供尽可能大的利益。本研究采用价值加权法来量化利益相关者对如何分配资源以最好地改善AYA患者及其家属的结局的看法。157名参与者(112名医疗保健提供者,研究人员和其他专业人员以及45名患者和护理人员)被邀请完成一项基于网络的价值观-加权问卷,并指出他们将如何分配100个单位的资金在不同的研究方法,地区和population.Results:80名参与者(51%)完成了问卷。战略研究的资金分配比例明显高于决策者驱动的研究。就研究领域而言,临床医学和心理社会研究获得的资金比例最高。在研究人群中,新诊断,复发或完成治疗的AYA获得了最大比例的资金。心理社会研究的重点是确定风险和复原力、制定心理社会措施、将研究转化为实践以及改善治疗中心,其拨款略高于其他项目,但差异并不显著。为了使利益有关者和供资机构的意见更加一致,AYA血液癌症患者及其家属的研究资金可以针对新诊断的患者和复发的患者。临床医学和心理社会护理领域的研究被认为是最有价值的。(C)2010爱思唯尔有限公司保留所有权利。
Introduction: Haematological malignancies account for a third of all cancers affecting adolescents and young adults (AYAs). Funding agencies are regularly faced with the dilemma of how to deploy resources in order to provide the greatest possible benefit to this patient group. This study used a value-weighting approach to quantify the stakeholders' perceptions about how resources should be allocated to best improve outcomes for AYA patients and their families.Methods: One hundred and fifty seven participants (112 health care providers, researchers and other professionals and 45 patients and carers) were invited to complete a web-based value-weighting questionnaire and indicate how they would allocate 100 units of funding among various research approaches, areas and populations.Results: Eighty participants (51%) completed the questionnaire. Strategic research was allocated a significantly higher proportion of funding than investigator-driven research. For research areas, clinical medicine and psychosocial research were allocated the highest proportion of funding. Within research populations, AYAs who were newly diagnosed, relapsed or finished treatment were allocated the largest proportion of funds. Psychosocial research which focussed on identifying risk and resilience, developing psychosocial measures, translating research into practice and improving the treatment centre was allocated funding slightly above other items, however the difference was not significant.Discussion: To improve potential congruence between the views of stakeholders and funding agencies, research funding for AYA haematological cancer patients and their families could be targeted towards newly diagnosed patients and those who have relapsed. Research in the areas of clinical medicine and psychosocial care is perceived to be of utmost value. (C) 2010 Elsevier Ltd. All rights reserved.