Dataset Information

"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

ABSTRACT: Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

SUBMITTER: Pol SJ

PROVIDER: S-EPMC6924656 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

Pol Sarah J SJ Snyder Jeremy J Anthony Samantha J SJ

PloS one 20191220 12

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 live ...[more]

PMID: 31860656

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Project description:BackgroundTransplantation for foreign nationals (non-citizens and non-residents) (FNs) in Canada is a complex issue. Currently, there are no Canadian guidelines for the provision of organ transplantation for FNs, and no empirical data on this issue or on transplant professionals' practices are available.ObjectiveThis project aimed to gather empirical data on transplant professionals' perspectives and practices regarding transplantation for FNs.DesignSurvey research design.SettingA Web-based survey of members of the Canadian Society of Transplantation (CST).ParticipantsAll members of the CST were invited to participate between April and June 2016.MeasurementsMultiple-choice questions were developed to capture participants' attitudes toward different fictitious clinical scenarios in which an FN needed a transplant, their experiences with FNs, their attitude toward FNs in need of transplantation, their knowledge about relevant institutional and organ donation organization (ODO) policies, and their perspectives on a quota. There were two questions with a five-point Likert scale to measure respondents' agreement with statements related to possible policy options and arguments for and against transplantation for FNs. There was one open-ended question about the content of transplant programs' policies on transplantation for FNs.MethodsDescriptive statistical analysis were performed.ResultsA total of 87 transplant professionals completed the survey. Over the 4-year period from 2012 to 2016, 47.1% of respondents dealt with at least one situation of listing or performing a transplant for an FN. Only 19.5% of respondents reported that their transplant program had a policy about transplantation for FNs and 59.7% did not know if their ODO had such a policy. When asked about policy options, 47.5% disagreed with a policy of no transplantation for FNs and 41.4% agreed with offering transplantation for FNs in some circumstances (including life-saving and non-life-saving organs). Study participants agreed that transplantation should not be offered to FNs traveling to Canada specifically for transplantation, that FNs should not be transplanted with organs not suitable for Canadian citizens and that there should not be a transplantation quota for FNs. Participants also seem to be more inclined to offer transplantation of life-saving organs, particularly for children.LimitationsThe major limitation of this study is the low response rate of transplant professionals to this survey.ConclusionThis is the first study to describe Canadian transplant professionals' perspectives on transplantation for FNs. The findings of this study will be of interest for future policy development on access to transplantation for FNs. Further studies are needed to gather various key stakeholders' perspectives on this issue, as well as to analyze the legal and ethical issues and the economics, to develop future policies.

Project description:BackgroundA diagnosis of cancer is associated with significant physical, psychological and financial burden. Including costs of cancer is an important component of shared decision making. Doctors bear a responsibility towards educating patients about the financial aspects of care. Multiple organisations have advocated for price transparency and implementing Informed Financial Consent in the clinic. However, few studies have evaluated the perspectives of oncologists on the current state of this discussion.AimsThe aim of this study is to determine the views and perspectives of medical oncologists regarding communication of costs and financial burden in patients with cancer.MethodsWe conducted a prospective cross-sectional online survey via REDCap. The survey was distributed to medical oncologists and advanced trainees currently registered with Medical Oncology Group of Australia (MOGA). Data was collected using the online survey comprising socio-demographic characteristics, discussion of costs and financial burden, and facilitators and barriers to these discussions.Results547 members of MOGA were invited to participate in the study, and 106 of 547 MOGA members (19%) completed the survey. Most oncologists (66%) felt that it was their responsibility to discuss costs of care, however a majority of oncologists (59.3%) reported discussing costs with less than half of their patients. Only 25% of oncologists discussed financial concerns with more than half of their patients, and most oncologists were unfamiliar with cancer-related financial burden. Most Oncologists with greater clinical experience and those working in private practice were more likely to discuss costs with a majority of their patients.ConclusionsCertain characteristics of medical oncologists and their practices were associated with reported prevalence of discussing costs of care and financial burden with their patients. In the context of rising costs of cancer care, interventions targeting modifiable factors such as raising oncologist awareness of costs of care and financial burden, screening for financial toxicity and availability of costs information in an easily accessible manner, may help increase the frequency of patient-doctor discussions about costs of care, contributing to informed decision-making and higher-quality cancer care.

Project description:ImportanceDespite major differences in their health care systems, medical crowdfunding is increasingly used to finance personal health care costs in Canada, the UK, and the US. However, little is known about the campaigns designed to raise monetary donations for medical expenses, the individuals who turn to crowdfunding, and their fundraising intent.ObjectiveTo examine the demographic characteristics of medical crowdfunding beneficiaries, campaign characteristics, and their association with funding success in Canada, the UK, and the US.Design, setting, and participantsThis cross-sectional study extracted and manually reviewed data from GoFundMe campaigns discoverable between February 2018 and March 2019. All available campaigns on each country domain's GoFundMe medical discovery webpage that benefitted a unique patient(s) were included from Canada, the UK, and the US. Data analysis was performed from March to December 2019.ExposuresCampaign and beneficiary characteristics.Main outcomes and measuresLog-transformed amount raised in US dollars.ResultsThis study examined 3396 campaigns including 1091 in Canada, 1082 in the UK, and 1223 in the US. Campaigns in the US (median [IQR], $38 204 [$31 200 to $52 123]) raised more funds than campaigns in Canada ($12 662 [$9377 to $19 251]) and the UK ($6285 [$4028 to $12 348]). In the overall cohort per campaign, Black individuals raised 11.5% less (95% CI, -19.0% to -3.2%; P = .006) than non-Black individuals, and male individuals raised 5.9% more (95% CI, 2.2% to 9.7%; P = .002) than female individuals. Female (39.4% of campaigns vs 50.8% of US population; difference, 11.3%; 95% CI, 8.6% to 14.1%; P < .001) and Black (5.3% of campaigns vs 13.4% of US population; difference, 8.1%; 95% CI, 6.8% to 9.3%; P < .001) beneficiaries were underrepresented among US campaigns. Campaigns primarily for routine treatment expenses were approximately 3 times more common in the US (77.9% [272 of 349 campaigns]) than in Canada (21.9% [55 of 251 campaigns]; difference, 56.0%; 95% CI, 49.3-62.7%; P < .001) or the UK (26.6% [127 of 478 campaigns]; difference, 51.4%; 95% CI, 45.5%-57.3%; P < .001). However, campaigns for routine care were less successful overall. Approved, inaccessible care and experimental care raised 35.7% (95% CI, 25.6% to 46.7%; P < .001) and 20.9% (95% CI, 13.3% to 29.1%; P < .001), respectively, more per campaign than routine care. Campaigns primarily for alternative treatment expenses (16.1% [174 of 1079 campaigns]) were nearly 4-fold more common for cancer (23.5% [144 of 614 campaigns]) vs noncancer (6.5% [30 of 465 campaigns]) diagnoses.Conclusions and relevanceImportant differences were observed in the reasons individuals turn to medical crowdfunding in the 3 countries examined that suggest racial and gender disparities in fundraising success. More work is needed to understand the underpinnings of these findings and their implications on health care provision in the countries examined.

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"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

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"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

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