儿科神经肿瘤服务评估辅助工具的开发：一种用于评估儿科神经肿瘤服务提供能力的评估工具。
Development of the pediatric neuro-oncology services assessment aid: An assessment tool for pediatric neuro-oncology service delivery capacity.
作者信息
Rajagopal Revathi, Diaz Coronado Rosdali, Hamid Syed Ahmer, Navarro Martin Del Campo Regina, Boop Frederick, Bag Asim, Benito Reséndiz Alma Edith, Bhat K Vasudeva, Campos Danny, Chang Kenneth, Cirt Ramona, Dhyani Rahmartani Ludi, Foo Jen Chun, Hoveyan Julieta, Lucas John T, Ngcana Thandeka, Ul Ain Rahat, Omran Nuha, Osorio Diana S, Qureshi Bilal Mazhar, Sabin Noah D, Schandorf Ernestina, Bankah Patrick, Dadzie Mary-Ann, Gbadamos Hafisatu, Sharafeldin Hend, Somathilaka Mahendra, Yang Peiyi, Atteby Jean-Jacques Yao, Zhang Anan, Salman Zeena, Gonzalez Miriam, Friedrich Paola, Rodriguez-Galindo Carlos, Qaddoumi Ibrahim, Moreira Daniel C
机构信息
Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee, USA.
Department of Pediatric and Adolescent Oncology & Hematology, Perth Children's Hospital, Nedlands, Western Australia, Australia.
出版信息
Neurooncol Adv. 2024 Oct 4;6(1):vdae171. doi: 10.1093/noajnl/vdae171. eCollection 2024 Jan-Dec.
BACKGROUND
To enhance the quality of care available for children with central nervous system (CNS) tumors across the world, a systematic evaluation of capacity is needed to identify gaps and prioritize interventions. To that end, we created the pediatric neuro-oncology (PNO) resource assessment aid (PANORAMA) tool.
METHODS
The development of PANORAMA encompassed 3 phases: operationalization, consensus building, and piloting. PANORAMA aimed to capture the elements of the PNO care continuum through domains with weighted assessments reflecting their importance. Responses were ordinally scored to reflect the level of satisfaction. PANORAMA was revised based on feedback at various phases to improve its relevance, usability, and clarity.
RESULTS
The operationalization phase identified 14 domains by using 252 questions. The consensus phase involved 15 experts (6 pediatric oncologists, 3 radiation oncologists, 2 neurosurgeons, 2 radiologists, and 2 pathologists). The consensus phase validated the identified domains, questions, and scoring methodology. The PANORAMA domains included national context, hospital infrastructure, organization and service integration, human resources, financing, laboratory, neurosurgery, diagnostic imaging, pathology, chemotherapy, radiotherapy, supportive care, and patient outcomes. PANORAMA was piloted at 13 institutions in 12 countries, representing diverse patient care contexts. Face validity was assessed by examining the correlation between the estimated score by respondents and calculated PANORAMA scores for each domain ( = 0.67, < .0001).
CONCLUSIONS
PANORAMA was developed through a systematic, collaborative approach, ensuring its relevance to evaluate core elements of PNO service capacity. Distribution of PANORAMA will enable quantitative service evaluations across institutions, facilitating benchmarking and the prioritization of interventions.
背景
为提高全球中枢神经系统（CNS）肿瘤患儿的护理质量，需要进行系统的能力评估，以识别差距并确定干预措施的优先顺序。为此，我们创建了儿科神经肿瘤学（PNO）资源评估辅助工具（PANORAMA）。
方法
PANORAMA的开发包括三个阶段：实施、达成共识和试点。PANORAMA旨在通过加权评估反映其重要性的领域来捕捉PNO护理连续体的要素。对回答进行顺序评分以反映满意度水平。根据不同阶段的反馈对PANORAMA进行修订，以提高其相关性、可用性和清晰度。
结果
实施阶段通过252个问题确定了14个领域。共识阶段有15名专家参与（6名儿科肿瘤学家、3名放射肿瘤学家、2名神经外科医生、2名放射科医生和2名病理学家）。共识阶段验证了确定的领域、问题和评分方法。PANORAMA领域包括国家背景、医院基础设施、组织和服务整合、人力资源、融资、实验室、神经外科、诊断成像、病理学、化疗、放疗、支持性护理和患者结果。PANORAMA在12个国家的13个机构进行了试点，代表了不同的患者护理背景。通过检查受访者估计得分与每个领域计算出的PANORAMA得分之间的相关性来评估表面效度（r = 0.67，P <.0001）。
结论
PANORAMA是通过系统的协作方法开发的，确保其与评估PNO服务能力的核心要素相关。PANORAMA的分发将使跨机构进行定量服务评估成为可能，便于进行基准测试和确定干预措施的优先顺序。
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