背景:小儿实体瘤的治疗通常是激烈的和多学科的,并且会给家庭带来巨大的经济负担。评估这些负担,被称为治疗的财务毒性,可能很难。以Wilms肿瘤为例,我们评估了众筹活动,试图更好地了解与儿科实体瘤治疗相关的经济和后勤挑战的影响,并确定与该方法成功筹款相关的特征.
方法:我们使用了一种网络抓取算法来识别GoFundMe.com上针对美国Wilms肿瘤儿科患者的众筹活动。我们进行了横断面分析,以描述寻求众筹支持癌症治疗的患者和家庭。在使用网络抓取算法提取信息提取后,每个筹款活动都由两名独立的审核员核实和检查,以评估人口统计,定性,疾病,和治疗变量。成功的筹款人,定义为那些达到既定财务目标的人,与不成功的活动进行比较,以确定与成功的众筹活动相关的变量。
结果:我们确定了603名患有Wilms肿瘤的儿童以及相关的众筹活动。平均年龄为4岁。大多数人居住在双亲家庭(68.5%)。在35.5%的筹款活动中,患者提到了兄弟姐妹。虽然众筹的动机各不相同,家庭所承受的困难包括失业(52.2%),其他儿童需要照顾儿童(9.8%),护理的直接费用[共同支付,保险,制药,自付护理费用,等。](80.9%),与寻求护理相关的间接成本[交通,停车,住宿,失去的机会成本,等。](56.2%),以及需要搬迁以追求复杂的癌症护理(6.8%)。该队列中的疾病特征仅限于家庭的自我报告。然而,筹款人提到了疾病的特征,包括肿瘤分期(47.6%),尺寸(11.4%),阳性淋巴结状态(9.6%),转移性疾病(3.6%),病理学(11.8%),升级(4.6%),和疾病复发(8.6%)。没有单独检查的人口统计,支持,疾病,或困难相关因素在成功和不成功的众筹活动之间差异显著(所有P>0.05)。然而,成功的竞选活动要求更少的钱(成功11,783.25美元,失败22,442.2美元,<0.001),收到更多的钱(成功16,409.5美元,未成功7427.4美元,P<0.001),并征集了更多的捐赠者人数(成功170.3对不成功86.3,P<0.001)。
结论:儿童接受多模式癌症护理的家庭有很大的费用和负担,可以使用众筹来支持他们的费用。仔细考虑与小儿实体瘤治疗相关的财务和后勤菌株,包括对众筹网站的全面分析,可能支持对非临床负担的更好理解,支持治疗关系和患者预后。
Treatment for pediatric solid tumors is often intense and multidisciplinary and can create a substantial financial burden for families. Assessing these burdens, termed the financial toxicity of treatment, can be difficult. Using Wilms tumor as an example, we evaluated crowdfunding campaigns in an attempt to better understand the impact of economic and logistic challenges associated with pediatric solid tumor care and identify features associated with successful
fundraising with this method.
We used a webscraping algorithm to identify crowdfunding campaigns on GoFundMe.com for pediatric patients with Wilms tumor in the United States. We conducted a cross-sectional analysis to describe the patients and families seeking crowdfunding support for cancer care. After fundraizing information was extracted using the webscraping algorithm, each fundraiser was verified and examined by two independent reviewers to assess demographic, qualitative, disease, and treatment variables. Successful fundraisers, defined as those meeting stated financial goals, were compared to unsuccessful campaigns to identify variables associated with successful crowdfunding campaigns.
We identified 603 children with Wilms tumor and an associated crowdfunding campaign. The median age was 4 y. The majority lived in two-parent households (68.5%). Patients mentioned siblings in 35.5% of fundraisers. While motivations for crowdfunding varied, hardships endured by families included loss of employment (52.2%), need for childcare for other children (9.8%), direct costs of care [co-payments, insurance, pharmaceuticals, out-of-pocket care costs, etc.] (80.9%), indirect costs associated with seeking care [transportation, parking, lodging, lost opportunity cost, etc.] (56.2%), and need for relocation to pursue complex cancer care (6.8%). Disease characteristics in this cohort were limited to self-reports by families. However, fundraisers mentioned disease characteristics, including tumor stage (47.6%), size (11.4%), positive nodal status (9.6%), metastatic disease (3.6%), pathology (11.8%), upstaging (4.6%), and disease recurrence (8.6%). No individually examined demographic, support, disease, or hardship-related factors varied significantly between successful and unsuccessful crowdfunding campaigns (all P > 0.05). However, successful campaigns requested less money ($11,783.25 successful versus $22,442.2 unsuccessful, <0.001), received more money ($16,409.5 successful vs 7427.4 unsuccessful, P < 0.001), and solicited larger donor numbers (170.3 successful versus 86.3 unsuccessful, P < 0.001).
Families whose children undergo multimodal cancer care have significant expenses and burdens and can use crowdfunding to support their costs. Careful consideration of the financial and logistic strains associated with pediatric solid tumor treatment, including thorough analysis of crowdfunding sites, may support better understanding of nonclinical burdens, supporting therapeutic relationships and patient outcomes.