scholarly journals Willingness to Pay for Cancer Genetic Testing in a Tertiary Healthcare Centre

2021 ◽  
Vol 20 (3) ◽  
Author(s):  
Aizuddin AN ◽  
Syed Rusli SAS ◽  
Ramdzan AR ◽  
Syed Omar SA ◽  
Mahmud Z ◽  
...  

INTRODUCTION: Increasing use of predictive genetic testing to address hereditary cancer risk has been commonly assessed by cost sharing practices. Little is known about how demographics, knowledge, attitude and practices may influence these individuals’ willingness to pay for cancer genetic testing. The objective of this research was to determine factors associated with willingness to pay for cancer genetic testing. MATERIALS AND METHODS: A self-administered questionnaire was distributed to 175 respondents in the oncology and day care unit in one of tertiary healthcare centre. The respondents comprised cancer patients, their family members and the community. RESULTS: A total of 117 (66.9%) participants were willing to pay for cancer genetic testing. Ninety three (79.5%) of respondents were willing to pay from their own pocket with a mean of MYR1201.77 (SD976.72) and 95 (54.3%) respondents were willing to pay, shared with insurance. There were significant associations between willingness to pay with status of respondent as patients or family members or community, gender, race, educational level, income, knowledge and attitude. CONCLUSION: This is the first study to evaluate factors associated with willingness to pay not only among cancer patients but also their family members and the community. These findings reveal that majority of respondents believe there is valuable personal benefit based on genetic risk information and they are willing to pay for it.

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 74s-74s
Author(s):  
I. Boukovinas ◽  
G. Lypas ◽  
M. Liontos ◽  
C. Andreadis ◽  
C. Papandreou ◽  
...  

Background: State health insurance authorities in Greece do not reimburse genetic testing for cancer predisposition. The Hellenic Society of Medical Oncology has launched and carries out a national program covering genetic testing for BRCA1/2 mutations detection, with the financial support of pharmaceutical industry. Aim: This analysis evaluates how, during this program, access to genetic testing transformed the oncologists' therapeutic approach toward their ovarian cancer patients and how the results impacted treatment decisions concerning PARP inhibitors. Adoption of testing by healthy relatives and timing of testing in the disease continuum were also evaluated. Methods: Adult patients with high-grade epithelial ovarian carcinoma, irrespectively of family history or age at diagnosis were eligible for this program. Genetic counseling was recommended before testing, and both were offered at no financial cost. First degree family members of pathogenic mutation carriers were also offered free counseling and testing. Results: From March 2015 through January 2018, 708 patients were enrolled and tested. One hundred and forty seven (20.7%) mutation carriers were identified, 102 (14.4%) in BRCA1 and 45 (6.3%) in BRCA2 gene. Testing was more often pursued at initial diagnosis (61%) than at recurrence (39%), as recorded for 409 patients with available relevant information. During the 1st year of the program, average monthly tests performed were 25.1, while during the 3rd year this number increased to 34.3 tests per month. Among patients who tested positive for deleterious BRCA1/2 mutations, relapse was reported in 58 patients, 94.8% of which (n= 55) received treatment with the PARP inhibitor olaparib as per its indication. Family members of 21 patients (14.3%), out of the 147 who tested positive, received genetic counseling and testing for the mutation identified in the context of the program. Conclusion: Free access to genetic testing for BRCA1/2 for ovarian cancer patients and genetic consultation facilitates testing uptake, affects common clinical practice & has major impact on patients and their families. Still, diffusion of genetic information and broader testing of family members require further efforts by the oncological community.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 231-231
Author(s):  
Molly Mendenhall ◽  
Andrew Guinigundo ◽  
Elizabeth Burneka ◽  
Hannah Kolish ◽  
Sarah Mancini ◽  
...  

231 Background: Despite consensus driven recommendations, data suggests significant non-compliance in breast cancer genetic screening and testing. In the US nearly 300,000 patients are diagnosed with breast cancer annually, of whom approximately one-third are estimated to be BRCA-testing eligible by NCCN guidelines. Of this cohort of patients eligible for testing, it is estimated that again only one-third are ultimately being referred for genetic counseling and testing. Ideally, every patient who is guideline-eligible for testing should be tested, if they consent. The purpose of this project was to integrate and universally apply NCCN genetic breast cancer testing guidelines, building off current OCM processes, to all new breast and/or metastatic breast cancer patients within a large multi-site community oncology practice setting. Methods: Providers utilized directed EHR templates in the setting of an initial diagnosis visit or a treatment planning “OCM visit”. Discreet data fields were created in the EHR to streamline, prompt, and automate this process. Following provider education and uniform physician pre-approval, appropriate patients were reflexively referred to the genetics team for further evaluation and BRCA testing. Adherence to the plan was maintained and measured using data analytic reports and chart audits. Results: OHC’s pre-project eligible patient testing rate (2018) was found to be 20%. Between 1/2019 to 1/2021 1,203 new breast and/or metastatic breast cancer patients were seen and deemed eligible for inclusion, fully 1,200 were screened using NCCN guidelines (99%). Of those screened, 631 patients met the NCCN testing criteria (52.5%). 585 of the 631 were referred to a genetic specialist (92.7%), of those 449 patients were tested (76.7%), 136 patients refused (30%). 22 patients were found to have a BRCA 1 or 2 mutation (5.3%). An additional “halo” effect on other cancer diagnoses was also observed. Screening newly diagnosed breast cancer and metastatic breast cancer patients resulted in a 163% increase in genetic referrals aside from those with breast cancer. Conclusions: Our results suggest a significant overall improvement in breast cancer genetic testing rates. Implemented methods of provider education and awareness of NCCN guidelines imbedded within provider notes, together with discreet data fields in the EHR, proved to be highly effective at screening appropriate patients and ordering subsequent genetic testing; ensuring nearly 100% compliance with current NCCN guidelines for genetic testing. The workflow also resulted in a favorable increase in genetic referrals and testing across other cancers. The patient refusal rate for testing merits further investigation. This structured workflow with reflex genetics referral was effective, scalable, and financially viable to overall genetic and practice growth.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 1577-1577
Author(s):  
Edward Esplin ◽  
Shan Yang ◽  
Scott T. Michalski ◽  
Karen Ouyang ◽  
Jennifer Fulbright ◽  
...  

1577 Background: Somatic mutation analysis by next-generation sequencing (NGS) is an expanding clinical assessment offered to cancer patients. Studies report that 4–12% of patients have a positive tumor mutation profiling (TMP) result in a known cancer predisposition gene also identified in their germline, which has potential implications for the patient’s acute treatment, ongoing surveillance, and the screening of family members. We report a series of patients with TMP coupled with germline genetic testing and include yield of pathogenic germline mutations, discordance between germline and TMP findings, and potential clinical impact. Methods: Our study used de-identified data from 182 consecutive patients who underwent TMP followed by germline testing with an NGS-based hereditary cancer gene panel. Results: 50/182 cases (27%) had one or more likely pathogenic or pathogenic (LP/P) germline variants, which is higher than previous reports. Among these 50, 28 (56%) met guidelines for germline testing by personal or family history criteria, 10 (20%) met recently established NCCN criteria for germline testing of patients with BRCA1/2 tumor variants, and 12 (24%) had TMP results that suggested a germline mutation but did not meet any guidelines for germline testing. We identified 52 LP/P germline variants in BRCA2 (17), BRCA1 (7), PALB2 (6), MUTYH (5), CHEK2 (2), and 15 other genes, all with established guidelines that would impact the clinical management of patients and their family members. In 9/50 cases, germline testing revealed variants that were absent in TMP results and provided new information with clinical implications for patients and their families, including variants in BRCA1 and CHEK2. Conclusions: In TMP patients, 50 of 182 had a medically actionable germline mutation with established management guidelines. Among these 50, 12 (24%) met neither current personal or family criteria nor the latest NCCN guidelines for germline testing in patients with TMP. Also striking were nine patients whose germline LP/P mutations were absent in TMP results. These data suggest that indications for germline testing of cancer patients must be expanded to avoid missing important germline findings in patients undergoing TMP.


Author(s):  
Azimatun Noor Aizuddin ◽  
Abdul Rahman Ramdzan ◽  
Sharifah Azween Syed Omar ◽  
Zuria Mahmud ◽  
Zarina A. Latiff ◽  
...  

With the increasing number of cancer cases worldwide, genetic testing for familiar cancers seems inevitable, yet little is known on population interest and the monetary value for cancer genetic risk information. The current study aimed to determine the willingness to undergo and pay for cancer genetic testing among the Malaysian population. A self-administered questionnaire was distributed to cancer patients and their family members in the oncology and daycare units in several government hospitals. Of 641 respondents (354 patients, 287 family members), 267 (41.7%) were willing to undergo cancer genetic testing. The median that respondents were willing to pay was USD 48.31 (MYR 200.00) IQR USD 96.91 (MYR 400), while 143 (22.3%) respondents were willing to pay a shared cost with the insurance company. Regression analysis identified independent positive predictors of willingness to pay as respondent’s status as a family member, high education level, and willingness to undergo cancer genetic testing in general, while in patients, female gender and high level of education were identified as independent positive predictors. Generally, the population needs more information to undergo and pay for cancer genetic testing. This will increase the utilization of the services offered, and with cost-sharing practices with the provider, it can be implemented population-wide.


2022 ◽  
Author(s):  
Kerstin Clasen ◽  
Cihan Gani ◽  
Christopher Schroeder ◽  
Olaf Riess ◽  
Daniel Zips ◽  
...  

Purpose: Willingness-to-pay (WTP) analyses can support allocation processes considering the patients preferences in personalized medicine. However, genetic testing especially might imply ethical concerns that have to be considered. Methods: A WTP questionnaire was designed to compare preferences for imaging and genetic testing in cancer patients and to evaluate potential ethical concerns. Results: Comparing the options of imaging and genetics showed comparable WTP values. Ethical concerns about genetic testing seemed to be minor. Treatment success was the top priority irrespective of the diagnostic modality. In general, the majority of patients considered personalized medicine to be beneficial. Conclusion: Most patients valued personalized approaches and rated the benefits of precision medicine of overriding importance irrespective of modality or ethical concerns.


2020 ◽  
Vol 16 (32) ◽  
pp. 2635-2643
Author(s):  
Samantha L Freije ◽  
Jordan A Holmes ◽  
Saleh Rachidi ◽  
Susannah G Ellsworth ◽  
Richard C Zellars ◽  
...  

Aim: To identify demographic predictors of patients who miss oncology follow-up, considering that missed follow-up has not been well studies in cancer patients. Methods: Patients with solid tumors diagnosed from 2007 to 2016 were analyzed (n = 16,080). Univariate and multivariable logistic regression models were constructed to examine predictors of missed follow-up. Results: Our study revealed that 21.2% of patients missed ≥1 follow-up appointment. African–American race (odds ratio [OR] 1.33; 95% CI: 1.17–1.51), Medicaid insurance (OR 1.59; 1.36–1.87), no insurance (OR 1.66; 1.32–2.10) and rural residence (OR 1.78; 1.49–2.13) were associated with missed follow-up. Conclusion: Many cancer patients miss follow-up, and inadequate follow-up may influence cancer outcomes. Further research is needed on how to address disparities in follow-up care in high-risk patients.


2021 ◽  
Vol 61 (3) ◽  
pp. 681-682
Author(s):  
Gwenyth Day ◽  
Marilyn Swinton ◽  
Danielle Bear ◽  
Peter Phung ◽  
Allegra Bell ◽  
...  

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