Including the blind community in precision medicine research: findings from a national survey and recommendations

PurposeDespite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision (“the blind community”) in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation.MethodsAn online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants.ResultsTwo hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3–6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers.ConclusionRemoving the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.     

Disability inclusion in precision medicine research: a first national survey

PurposeIncluding people with disabilities in precision medicine research (PMR) is key for increasing cohorts’ diversity, improving understanding of population health, and attaining social justice for the United States' largest health disparities group. We conducted a national survey to explore the views of people with disabilities about PMR.MethodsAn online survey was developed in disability-accessible formats. Key questions included views on PMR, willingness to participate and to provide data, perceived barriers to participation and potential remedies, and interest in engagement in the study. Analyses described results for all participants and compared results for key demographic characteristics.ResultsIn total, 1294 participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR; to provide lifestyle, biological, and medical information; and to engage with the study. However, 76% identified a total of 3 to 8 barriers to participation, and most would not provide environmental samples or information from their social media account(s) and activity trackers. Differences were observed across racial, ethnic, and gender groups and are discussed.ConclusionsBarriers to disability inclusion need to be removed, and further research conducted to better understand concerns about PMR and to develop studies that resonate with the interests and needs of this population.     

A qualitative investigation to inform yoga intervention recruitment practices for racial/ethnic minority adolescents in outpatient mental health treatment

ObjectiveYoga is recognized as an effective approach to improving overall physical and mental health; however, there may be perceived barriers to yoga participation, particularly among populations most at risk for mental health issues. We conducted qualitative formative research to help inform recruitment practices for a future study and to specifically understand the barriers and facilitators to engagement in yoga practice among racial/ethnic minority adolescents, as well as adolescents in outpatient mental health treatment.MethodsQualitative data were collected at a community health clinic that serves low income families in southeastern Florida. Using semi structured interviews with racial and ethnic minority adolescents between 12 and 17 years old, participants were asked about beliefs and perceptions about yoga, as well as recommendations on recruiting peers. A thematic analysis approach was used to identify and examine common themes.ResultsTwenty interviews were conducted and eight major themes emerged from the data. Themes were grouped as (1) Facilitators to recruitment and (2) Barriers to recruitment.InterpretationAdvertising free yoga that emphasizes the social, physical, and mental benefits can help assuage negative perceptions of yoga and promote the advantages of yoga among teenagers. Having recruitment materials and modalities that highlight inclusivity of all genders and physical abilities in the yoga classes are also important in facilitating participation. Understanding perceptions of yoga, as well as perceived barriers and facilitators, among racially/ethnically diverse adolescents in outpatient mental health treatment, can assist recruitment efforts, increase yoga intervention participation, and ultimately, improve mental health outcomes for underserved populations.     

Engaging limited English proficient and ethnically diverse low-income women in health research: A randomized trial of a patient navigator intervention

ObjectiveEvaluate a community-based navigator intervention to increase breast cancer patients’ and survivors’ access to information about health research participation opportunities.MethodsIn the context of a Community Based Participatory Research collaboration, we conducted a prospective randomized controlled trial of the Health Research Engagement Intervention with pre- and post-intervention surveys (n = 133). The primary outcome was health research information-seeking behavior. Secondary outcomes were health research knowledge, willingness to participate in health research, and health empowerment. Qualitative interviews (n = 11) elucidated participant perspectives on the intervention.ResultsThere was no statistically significant difference between intervention and control groups’ information-seeking behavior. Knowledge that not all health research studies are about drugs or treatments increased significantly from pre- to post-test among intervention group participants (32% to 48%, p = 0.012), but not in the control group (43% to 30%, p = 0.059); the difference between arms was statistically significant (p = 0.0012). Although survey responses indicated willingness to participate, qualitative interviews identified competing priorities that limited participants’ motivation to seek enrollment information.Conclusions and Practice ImplicationsCommunity-based navigators are a trusted, and therefore promising link between health research and low-income underserved communities. However, systemic barriers in health research infrastructures need to be addressed to include low income, LEP and immigrant populations.     

Ethnic identity and engagement with genome sequencing research

PurposeWe examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results.MethodsA longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African American, or Afro-Caribbean, 40–65 years old (n = 408). Before receiving genomic results, participants completed a survey assessing social and behavioral constructs related to health, genomics, and ethnic identity.ResultsEthnic identity was positively correlated with perceived value of genomic results and expected benefits from genomic research participation. Among participants with stronger ethnic identity, cognitive beliefs (perceived value of results [b = 0.63, 95% confidence interval: 0.29, 0.98, p < 0.001] and expected benefits from genomic research participation [b = 0.32, 95% confidence interval: 0.12, 0.53, p = 0.002]) were associated with intentions to receive results. Among those with weaker ethnic identity, there was no such association.ConclusionIndividuals with stronger ethnic identity seem to attend more to cognitive beliefs such as the value of genomic results when deliberating receipt of results compared with those with weaker ethnic identity. Understanding ethnic identity variation and its influence on genome sequencing perceptions and intentions can inform future research opportunities using ethnic identity to explore specific practical, clinical questions.     

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006)

Background: Overall, people living with HIV/AIDS (PLWHA) are living longer, but compared with the general population, they are at elevated risk for numerous AIDS-defining and non-AIDS-defining cancers. The AIDS Malignancy Consortium (AMC) is dedicated to conducting clinical trials aimed at prevention and treatment of cancers among PLWHA.

Objective: To examine patient-level characteristics and perceptions that influence decision-making regarding AMC treatment trial participation.

Methods: PLWHA diagnosed with cancer or anal high-grade intraepithelial neoplasia who were ≥18 years old and offered participation on a therapeutic AMC clinical trial were eligible. Participants completed a 17-item survey assessing sociodemographic and other factors potentially influencing decision-making regarding trial participation.

Results: The sample of 67 participants was mainly male (n?=?62, 92.5%), non-Hispanic (89.5%) and white (67.2%), with a mean age of 48.3 years. About half of participants were screened for lymphoma studies. Nearly all (98.5%) of the participants learned about AMC clinical trials from a medical provider, most (73.1%) knew little about clinical trials in general, and half decided on trial participation on their own. Altruism was the most frequently cited reason for trial participation. Participant recommendations for improving AMC trial accrual included systems changes to speed access to clinical trials and reduce participant burden.

Conclusions: This formative study highlights the perceived benefits to others, i.e. altruism, as an important factor in trial decision-making, little knowledge about clinical trials in general, and the role of physicians in informing participants about clinical trials. Future research should address knowledge barriers and explore systems- and provider-level factors affecting accrual to AMC trials.     

Development and pilot-testing of a colorectal cancer screening decision aid for individuals with varying health literacy levels

ObjectiveMaking an informed decision about colorectal cancer screening requires health literacy. Our aim was to develop and pilot-test a computer-based decision aid to support informed decision making about whether or not to participate in colorectal cancer screening for individuals with varying health literacy levels in the Netherlands.MethodsFirst, we designed and adapted the decision aid prototype among 25 individuals with low (n = 15) and adequate (n = 10) health literacy. Second, we used a before/after study to assess changes in knowledge, attitude, intention, decisional conflict, deliberation, anxiety and risk perception in an online survey among 81 individuals eligible for colorectal cancer screening with low (n = 35) and adequate (n = 46) health literacy.ResultsThe decision aid was acceptable, comprehensible, reduced decisional conflict, increased deliberation and improved knowledge about colorectal cancer screening, but not about colorectal cancer, among individuals with adequate and low health literacy. Usability was slightly higher for participants with adequate health literacy compared to those with low health literacy.ConclusionThe decision aid is promising in supporting informed decision making about colorectal cancer screening, also among individuals with lower health literacy.Practice implicationsFurther refinement of interactive features, such as videos, animations and the values clarification exercise, is needed to increase the usability of the decision aid.     

“They were just waiting to die”: Somali Bantu and Karen Experiences with Cancer Screening Pre- and Post-Resettlement in Buffalo,NY

BackgroundLittle is known about how pre-resettlement experiences affect refugees’ uptake of cancer screenings. The objective of this study was to characterize Somali Bantu and Karen experiences with cancer and cancer screenings prior to and subsequent to resettlement in Buffalo, NY in order to inform engagement by health providers.MethodsThe study was grounded in a community-based participatory research approach, with data collection and analysis guided by the Health Belief Model and life course framework. Interviews were transcribed, independently coded by two researchers, and analyzed using an immersion-crystallization approach. We conducted 15 semi-structured interviews and six interview-focus group hybrids with Somali Bantu (n = 15) and Karen (n = 15) individuals who were predominantly female (87%).ResultsCancer awareness was more prevalent among Karen compared to Somali Bantu participants. Prior to resettlement, preventative health care, including cancer screening, and treatment were unavailable or inaccessible to participants and a low priority compared with survival and acute health threats. There, Somali Bantu treated cancer-like diseases with traditional medicine (heated objects, poultices), and Karen reported traditional medicine and even late-stage biomedical treatments were ineffective due to extent of progressed, late-stage ulcerated tumors when care was sought. A fatalistic view of cancer was intertwined with faith (Somali Bantu) and associated with untreated, late-stage cancer (Karen). Karen but not Somali Bantu reported individuals living with cancer were stigmatized pre-resettlement due to the unpleasant manifestations of untreated, ulcerated tumors. Now resettled in the U.S., participants reported obtaining cancer screenings was challenged by transportation and communication barriers and facilitated by having insurance and interpretation services. While Somali Bantu women strongly preferred a female provider for screenings, Karen women felt cancer severity outweighed cultural modesty concerns in terms of provider gender.SignificanceOur findings suggest the need for culturally-relevant cancer education that incorporates the life course experiences and addresses logistical barriers in linking individuals with screening, to be complemented by trauma-informed care approaches by healthcare providers.     

Teaching patients how to talk with biomedical providers about their complementary and alternative medicine use

ObjectiveThe goal was to examine the feasibility and impact of a face-to-face communication skills training intervention based on a current public health campaign to encourage patients to talk about complementary and alternative medicine (CAM) with their biomedical health providers.MethodsCurrent CAM users were invited to complete a survey about current/past CAM use and communication with biomedical providers before beginning a communication skills training workshop. In the 6-month period following the training, participants were asked to record information on any CAM conversations with those providers.ResultsOf the 38 participants who received training, 32 finished the entire study. Over half of those participants reported discussing CAM in post-training visits with biomedical providers. Participants initiated the conversation in most cases, and were more likely to disclose CAM use than they were to ask questions about CAM. Participants who talked about CAM were significantly more likely to perceive CAM as relevant to their visit, compared with individuals who did not talk about CAM.ConclusionsParticipants positively evaluated this patient communication workshop. Consistent with previous research, most CAM conversations were patient-initiated.Practice implicationsThese findings reinforce the importance of patient education interventions for improving patient–provider communication in general, and CAM communication specifically.     

Family health history reporting is sensitive to small changes in wording

PurposeFamily health history is often collected through single-item queries that ask patients whether their family members are affected by certain conditions. The specific wording of these queries may influence what individuals report.MethodsParents of Boston Children’s Hospital patients were invited to participate in a Web-based survey about the return of individual genomic research results regarding their children. Participants reported whether 11 types of medical conditions affected them or their family. Randomization determined whether participants were specifically instructed to consider their extended family.ResultsFamily health history was reported by 2,901 participants. Those asked to consider their extended family were more likely to report a positive family history for 8 of 11 medical conditions. The largest differences were observed for cancer (65.1 vs. 45.7%; P < 0.001), cardiovascular conditions (72.5 vs. 56.0%; P < 0.001), and endocrine/hormonal conditions (50.9 vs. 36.7%; P < 0.001).ConclusionsSmall alterations to the way family health history queries are worded can substantially change patient responses. Clinicians and researchers need to be sensitive about patients’ tendencies to omit extended family from health history reporting unless specifically asked to consider them.Genet Med 18 12, 1308–1311.     

Engagement and communication among participants in the ClinSeq Genomic Sequencing Study

PurposeAs clinical genome sequencing expand its reach, understanding how individuals engage with this process are of critical importance. In this study, we aimed to describe internal engagement and its correlates among a ClinSeq cohort of adults consented to genome sequencing and receipt of results.MethodsThis study was framed using the precaution adoption process model (PAPM), in which knowledge predicts engagement and engagement predicts subsequent behaviors. Prior to receipt of sequencing results, 630 participants in the study completed a baseline survey. Engagement was assessed as the frequency with which participants thought about their participation in ClinSeq since enrollment.ResultsResults were consistent with the PAPM: those with higher genomics knowledge reported higher engagement (r = 0.13, P = 0.001) and those who were more engaged reported more frequent communication with their physicians (r = 0.28, P < 0.001) and family members (r = 0.35, P < 0.001) about ClinSeq. Characteristics of those with higher engagement included poorer overall health (r = −0.13, P = 0.002), greater seeking of health information (r = 0.16, P < 0.001), and more recent study enrollment (r = −0.21, P < 0.001).ConclusionThese data support the importance of internal engagement in communication related to genomic sequencing.     

Communicating unexpected pharmacogenomic results to biobank contributors: A focus group study

ObjectivesThe goals of this study were to explore 1) the impact of returning unexpected pharmacogenomic (PGx) results to biobank contributors, and 2) participant views about improving communication.MethodsWe conducted a qualitative focus group study with biobank participants (N = 54) who were notified by mail of an individual research result indicating increased risk for adverse events associated with the common cancer drug 5-fluorouracil (5-FU). We employed a framework approach for analysis.ResultsOur results revealed three themes illustrating participants’ questions and uncertainty, especially regarding how to share results with health providers and family members, and remember them over time. Participants valued results for themselves and others, and for the future of medicine. Risk perception was framed by health identity. “Toxicity narratives,” or familiarity with another’s adverse reaction to chemotherapy, increased the sense of importance participants reported.ConclusionThese focus group results highlight research participant remaining questions and high valuation of PGx results, even when unexpected.Practice implicationsWe identify PGx research participants’ needs for clear clinical translation messaging that attends to health identity, pragmatics of sharing information with family members, and patient perceptions of barriers to transferring research results to a clinical context.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Pancreatic cancer and melanoma related perceptions and behaviors following disclosure of CDKN2A variant status as a research result

PurposeThis study examined whether participants who learned research results related to a germline CDKN2A variant known to be associated with increased risk of pancreatic cancer and malignant melanoma would pursue confirmatory testing and cancer screening, share the genetic information with health care providers and family, and change risk perceptions.MethodsParticipants were pancreas research registry enrollees whose biological sample was tested in a research laboratory for the variant. In total, 133 individuals were invited to learn a genetic research result and participate in a study about the disclosure process. Perceived cancer risk, screening intentions, and behaviors were assessed predisclosure, immediately postdisclosure, and six months postdisclosure.ResultsEighty individuals agreed to participate and 63 completed the study. Immediately postdisclosure, carriers reported greater intentions to undergo pancreatic cancer and melanoma screening (p values ≤0.024). Seventy-three percent of carriers (47.5% noncarriers) intended to seek confirmatory testing within six months and 20% (2.5% noncarriers) followed through. All participants shared results with ≥1 family member. More carriers shared results with their health care provider than noncarriers (p = 0.028).ConclusionRecipients of cancer genetic research results may not follow through with recommended behaviors (confirmatory testing, screening), despite stated intentions. The research result disclosure motivated follow-up behaviors among carriers more than noncarriers.     

Perspectives of diverse Spanish- and English-speaking patients on the clinical use of polygenic risk scores

PurposeAs polygenic risk scores (PRS) emerge as promising tools to inform clinical care, there is a pressing need for patient-centered evidence to guide their implementation, particularly in diverse populations. Here, we conducted in-depth interviews of diverse Spanish- and English-speaking patients to explore their perspectives on clinical PRS.MethodsWe enrolled 30 biobank participants aged 35-50 years through a purposive sampling strategy, ensuring that >75% self-reported as African/African American or Hispanic/Latinx and half were Spanish-speaking. Semistructured interviews in Spanish or English explored attitudes toward PRS, barriers to adoption, and communication preferences. Data were analyzed using an inductive thematic analysis approach.ResultsPerceived utility of clinical PRS focused on the potential for personal health benefits, and most participants stated that high-risk results would prompt physician consultations and health behavior changes. There was little concern among participants about the limited predictive power of PRS for non-European populations. Barriers to uptake of PRS testing and adoption of PRS-related recommendations included socioeconomic factors, insurance status, race, ethnicity, language, and inadequate understanding of PRS. Participants favored in-person PRS result disclosure by their physician.ConclusionFindings provide valuable insight into diverse patients’ attitudes and potential barriers related to clinical PRS, guiding future research and patient-centered clinical implementation.     

Knowledge,motivations, expectations,and traits of an African,African-American,and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort

PurposeRacial minority populations are underrepresented in genomics research. This study enrolled African-descended individuals in a sequencing study and reported their characteristics.MethodsWe purposively recruited 467 individuals self-identified as African, African American, or Afro-Caribbean to the ClinSeq® study and surveyed them about knowledge, motivations, expectations, and traits. Summary statistics were calculated and compared with data from the study’s original cohort, which was primarily White and self-referred.ResultsRecruitment took five years and 83% of enrollees completed the survey. Participants had modest knowledge about benefits and limitations of sequencing (x̅s = 5.1, ranges: 0–10), and less than the original cohort (x̅= 7.5 and 7.7, respectively). Common motivations to enroll were learning information relevant to personal health (49%) or family members’ health (33%), and most had realistic expectations of sequencing. Like the original cohort, they had high levels of optimism, openness, and resilience.ConclusionEarly adopters may have relatively consistent personality traits irrespective of majority/minority status and recruitment methods, but high levels of genomics knowledge are not universal. Research should determine whether recruitment and consent procedures provide adequate education to promote informed choices and realistic expectations, which are vital to ethical research and increasing genomics research participation in underrepresented communities.     

A pilot assessment of parental practices and attitudes regarding risk disclosure and clinical research involving children in Huntington disease families

PurposeTo characterize parental practices of informing children of risk for Huntington disease (HD), and to understand the attitudes of parents concerning childhood participation in HD research.MethodsAn anonymous Internet survey was accessed by individuals of HD families. The survey probed for data regarding individual risk for HD, as well as when or if children had been informed of the disease. Respondents expressed their attitudes concerning childhood participation in HD clinical research.ResultsTwo hundred forty-nine individuals responded (∼80% female), and 84% had never participated in an HD clinical trial. Seventy-five percent of respondents were parents; nearly two thirds of them had provided some information about HD to their children. There was overwhelming support for affected, at-risk, and unaffected adults in terms of HD research participation, but there was a statistically significant disparity by gene status, with gene negative and symptomatic gene positive adults being more inclined to participate than at-risk or asymptomatic/gene positive adults. More than 50% of respondents supported childhood participation, but typically in late adolescence (15–18 years). Gene negative and symptomatic adults were statistically more likely to agree with childhood inclusion than at-risk or asymptomatic/gene positive adults.ConclusionThese results serve as pilot data for further investigations to address childhood participation in HD research. In addition, these findings will inform ongoing studies as to appropriate practices to undertake to include minors.     

A preliminary study of skin bleaching and factors associated with skin bleaching among women living in Zimbabwe

BackgroundSkin bleaching was reported to be commonly practiced among women and Africa was reported to be one of the most affected yet the subject is not given much attention in public health research in Zimbabwe despite the adverse effects of skin bleaching on health.MethodThis study was an exploratory cross-sectional survey to explore skin bleaching, skin bleaching patterns and factors associated with skin bleaching among women living in Zimbabwe. An online self-administered questionnaire was sent out to women on social network i.e. WhatsApp, Facebook, LinkedIn and Twitter.FindingsA total number of 260 respondents, mean age 31.69 (SD, 8.12) years participated in the survey. The prevalence of skin bleaching among the participants was 31.15%. The major reason reported for skin bleaching was to have smooth and healthy skin alongside other factors such as beauty, gaining social favours for example getting married and good jobs. Occupation, complexion and marital status were associated with skin bleaching. The odds of skin bleaching for participants who were employed was 1.45(95% confidence interval [CI],0.32–1.91);p-value 0.02, dark skinned participants 2.56(95% CI, 0.76–2.87);p-value 0.01 and unmarried participants 2.87(95% CI,0.29–3.58);p-value 0.03.ConclusionEvidence from the research suggests skin bleaching might be common among women living in Zimbabwe and possibly poses serious health threats to the women. Skin bleaching seems to be deep rooted in colourism. The colourism seems to be taken advantage of by the cosmetic industry which produce the potentially hazardous products which promise the revered light skin to women but which comes with a price. However, the study provides a base for future studies to explore more on skin bleaching practices among women living in Zimbabwe.     

African Americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research

PurposeTo assess whether reactions to genetic explanations for disparities in lung cancer incidence among family members of African American patients with lung cancer are associated with willingness to participate in clinical genetics research.MethodsData are reported for 67 self-identified African Americans aged 18 to 55 years who completed a telephone survey assessing reactions to explanations (i.e., genetics, toxin exposure, menthol cigarettes, and race-related stress) for lung cancer disparities. Majority were female (70%), current smokers (57%), and patients' biological relatives (70%).ResultsFamily members rated the four explanations similarly, each as believable, fair, and not too worrisome. Participants also indicated a high level of willingness to participate in genetics research (M = 4.1 ± 1.0; scale: 1-5). Endorsements of genetics explanations for disparities as believable and fair, and toxin exposure as believable were associated significantly with willingness to participate in genetics research.ConclusionThese results suggest that strategies to encourage African Americans' participation in genetics research would do well to inform potential participants of how their involvement might be used to better understand important environmental factors that affect health disparities.     

Feasibility of a pancreatic cancer surveillance program from a psychological point of view

PurposeThe success of any surveillance program depends not solely on its technological aspects but also on the commitment of participants to adhere to follow-up investigations, which is influenced by the psychological impact of surveillance. This study investigates the psychological impact of participating in a pancreatic cancer surveillance program.MethodsHigh-risk individuals participating in an endoscopic ultrasonography-magnetic resonance imaging-based pancreatic cancer surveillance program received a questionnaire assessing experiences with endoscopic ultrasonography and magnetic resonance imaging, reasons to participate, psychological distress, and benefits and barriers of surveillance. High-risk individuals were individuals with a strong family history of pancreatic cancer or carriers of pancreatic cancer-prone gene mutations.ResultsSixty-nine participants (85%) completed the questionnaire. Surveillance was reported as “very to extremely uncomfortable” by 15% for magnetic resonance imaging and 14% for endoscopic ultrasonography. Most reported reason to participate was that pancreatic cancer might be detected in a curable stage. Abnormalities were detected in 27 respondents, resulting in surgical resection in one individual and a shorter follow-up interval in five individuals. Surveillance outcomes did not influence cancer worries. Overall, 29% was “often” or “almost always” concerned about developing cancer. Six respondents (9%) had clinical levels of depression and/or anxiety. According to 88% of respondents, advantages of surveillance outweighed disadvantages.ConclusionsAlthough endoscopic ultrasonography is more invasive than magnetic resonance imaging, endoscopic ultrasonography was not perceived as more burdensome. Despite one third of respondents worrying frequently about cancer, this was not related to the surveillance outcomes. Anxiety and depression levels were comparable with the general population norms. Advantages of participation outweighed disadvantages according to the majority of respondents. From a psychological point of view, pancreatic cancer surveillance in high-risk individuals is feasible and justified.