Cancer patients’ acceptance, understanding, and willingness-to-pay for pharmacogenomic testing

Cuffe, Sinéad; Hon, Henrique; Qiu, Xin; Tobros, Kimberly; Wong, Chung Kwun Amy; Souza, Bradley De; McFarlane, Graham; Masroor, Sohaib; Azad, Abul Kalam; Hasani, Ekta; Rozanec, Natalie; Leighl, Natasha B.; Alibhai, Shabbir M.H.; Xu, Wei; Issa, Amalia M.; Liu, Geoffrey

doi:10.1097/fpc.0000000000000061

Cited by 31 publications

(66 citation statements)

References 31 publications

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“…Despite their high readiness to adopt genomic technologies and desire to be involved in test-related decision-making, self-perceived deficiencies in understanding represent a barrier to test utilisation (Cuffe et al, 2014;Issa, Tufail, Hutchinson, Tenorio, & Baliga, 2009). Despite their high readiness to adopt genomic technologies and desire to be involved in test-related decision-making, self-perceived deficiencies in understanding represent a barrier to test utilisation (Cuffe et al, 2014;Issa, Tufail, Hutchinson, Tenorio, & Baliga, 2009).…”

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confidence: 99%

Advanced cancer patients’ attitudes towards, and experiences with, screening for somatic mutations in tumours: a qualitative study

et al. 2016

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Somatic mutations in key oncogenes in non-small cell lung cancer (NSCLC) and melanoma are important determinants of tumour sensitivity to targeted therapies. Molecular screening for these predictive biomarkers is routinely used to inform treatment decisions; however, little is known about how best to communicate testing and results to patients. This qualitative study aimed to explore advanced cancer patients' attitudes and experiences regarding somatic tumour screening to identify their information and support needs. Sixteen NSCLC and eight melanoma patients who had undergone screening participated in a semi-structured face-to-face or telephone interview exploring their understanding, views, preferences and needs regarding screening. Interviews were audiotaped, transcribed and analysed for thematic patterns. Participants expressed positive views and unequivocal acceptance of screening, and understood its role in guiding treatment selection. They preferred to receive information verbally through simple, non-technical language from their oncologist with additional take-home materials. Patients were interested in learning about their test results, but wanted discussion to be focused on practical matters relevant to treatment. While receiving their screening results was not considered burdensome, information overload and cancer-related distress were identified as barriers to test comprehension. Patients may benefit from information and decision-related tools to better understand genomic information and adequately support psychosocial outcomes.

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confidence: 99%

Advanced cancer patients’ attitudes towards, and experiences with, screening for somatic mutations in tumours: a qualitative study

et al. 2016

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“…In contrast to surveys within the general population, surveys of individuals with specific diseases (or of those at risk for specific diseases) revealed that these individuals are willing to pay for genetic testing that identifies benefit from treatment, changes in treatment or level of risk and is influenced by household income (those with higher income willing to pay more) and understanding of genetic information (Supplementary Online Table) [27,29–31]. Research by Eden et al and Cuffe et al found that prior knowledge or a better understanding of the condition or genetic testing led to higher WTP [27,29].…”

Section: Discussionmentioning

confidence: 99%

“…Research by Eden et al and Cuffe et al found that prior knowledge or a better understanding of the condition or genetic testing led to higher WTP [27,29]. Concern about disease may also play an important role.…”

Section: Discussionmentioning

confidence: 99%

The Price of Whole-Genome Sequencing May be Decreasing, But Who Will be Sequenced?

et al. 2017

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Aim Since whole-genome sequencing (WGS) information can have positive and negative personal utility for individuals, we examined predictors of willingness to pay (WTP) for WGS. Patients & methods We surveyed two independent populations: adult patients (n = 203) and college seniors (n = 980). Ordinal logistic regression models were used to characterize the relationship between predictors and WTP. Results Sex, age, education, income, genomic knowledge and knowing someone who had genetic testing or having had genetic testing done personally were associated with significantly higher WTP for WGS. After controlling for income and education, males were willing to pay more for WGS than females. Conclusion Differences in WTP may impact equity, coverage, affordability and access, and should be anticipated by public dialog about related health policy.

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“…11 The potential psychological impacts, along with concerns regarding family planning, fertility, lifestyle choices and health management, 5,12 indicate individualized management and genetic counseling should remain a priority. 3,10 A large body of research has investigated public [13][14][15][16][17] and patient 1,3,[18][19][20][21][22] perceptions of genetic testing, and reported that despite low levels of understanding, perceived benefits outweigh the risks. Patients' most highly-rated benefits include increased knowledge, better outcomes, and more effective prevention strategies.…”

Section: Introductionmentioning

confidence: 99%

“…[1][2][3] In particular, much attention is focused on personalized or precision medicine, the use of molecular tools to individualize healthcare through genetic testing, whole genome sequencing, exome, or transcriptone sequencing. 2 In childhood cancer care, most survivors are currently given information about their risk of developing long-term side-effects from their cancer or treatment (known as 'late effects') which is not specific to their genetic profile.…”

Section: Introductionmentioning

confidence: 99%

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Georgiou

Wakefield

McGill

et al. 2016

Cancer

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BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society

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Cancer patients’ acceptance, understanding, and willingness-to-pay for pharmacogenomic testing

Cited by 31 publications

References 31 publications

Advanced cancer patients’ attitudes towards, and experiences with, screening for somatic mutations in tumours: a qualitative study

Advanced cancer patients’ attitudes towards, and experiences with, screening for somatic mutations in tumours: a qualitative study

The Price of Whole-Genome Sequencing May be Decreasing, But Who Will be Sequenced?

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

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