Interview participant characteristics

A total of 102 individuals were contacted for recruitment, with fifty-four individuals responding and consenting to interview. The incompletion cohort consisted of 20 individuals: ten who had not completed the tool at time of interview, and ten who had completed the tool prior to interview following their incomplete attempt(s). Of those who had not completed the assessment at time of interview, two individuals later completed it. Thirty-three interviewed participants met time and/or accuracy cohort criteria: 12 only for time, 14 only for accuracy, and seven met both. Interviewee characteristics are presented in Table 1 (per-cohort characteristics in Additional file 3). Similar barriers and facilitators were described in each cohort, so results are presented collectively, with differences between cohorts indicated where appropriate. Only five participants from DH were successfully recruited (Table 1), so site-specific analyses were not performed.

Table 1 Interviewee characteristicsParticipant experiences

Participants described several barriers and facilitators to tool use, with most shared across all cohorts. The two most common themes were needing to acquire family history data from other family members and challenges accessing family history. Participants also discussed language accessibility for those who spoke English as a second language, literacy accessibility, and tool design elements.

Gathering family history

The most frequent reason for stopping the assessment, spending more time on the assessment, and/or misreporting information on the assessment compared to genetic counselor-collected information was needing to ask more knowledgeable relatives for family history information. An interviewee explained:

“I think I had to text my mom to ask her if her sister, my aunt, had that. I was waiting for a text back…So it was just a timeframe of waiting for information.” (Time; Interviewee 29).

Many participants who identified this barrier suggested or endorsed a solution in which recruitment materials and the tool provide a prominent notification encouraging family history gathering in advance and indicating the level of detail needed (Table 2).

Table 2 Barriers to using the risk assessment tool and suggested solutions

The ability to gather family history from family members was also frequently cited both as a barrier to, and facilitator of, patient-facing family history assessment. Some individuals noted that their ability to complete the assessment hinged on the fact that they were able to obtain family history from their family members. However, most individuals identified this as a barrier, citing inability to obtain some part of family history due to death, estrangement, and/or geographical or language barriers between the participant and their family:

“You know, and…my mom [died]…so there’s a lot of things that my mom didn’t share with me about, you know, my grandmother’s history. And…my mom grew up without a dad, so I don’t know a lot about…my grandpa.” (Accuracy, Interviewee 48)

Family dynamics – including intrafamilial communication norms and cultural beliefs – sometimes influenced a participant’s ability to access family history information. Participants in the incompletion and time cohorts also frequently noted their desire to provide a higher level of accuracy than their knowledge would permit:

“I’m like, I am botching this up and I’m not giving accurate information. I’m just guessing at this point…So I think that’s probably when I was like this is worthless. Let me give this up.” (Incompletion, Interviewee 15)

By contrast, many individuals in the accuracy cohort indicated some level of comfort with providing best guesses, though many stated they would have sought accurate information in advance had they known the level of detail needed (e.g., specific type of cancer, age of diagnosis).

Participants suggested that having “I don’t know” or “not sure” options would alleviate distress around lack of access and reduce inaccuracy and guesswork. Some participants also suggested or endorsed starting with the module on limited family history knowledge for all individuals and using these responses to skip questions regarding relatives about whom they had no information (Table 2).

Electronic tool accessibility

Most individuals felt that the CHARM study family history assessment was predominantly straightforward and easy to understand, and that the tool’s use of lay and medical terms was helpful. However, terminology was noted as a barrier for many, especially among those in the accuracy cohort, who sometimes reported misunderstanding certain cancer types (i.e., reproductive cancers; whether metastatic cancer sites should be reported). Several participants suggested or endorsed addition of further literacy aids and specifying that questions were asking where cancer started and not where cancer spread (Table 2).

Language was also often noted as a barrier. For several participants, English was not their primary language or was not the primary language of their family. A few participants identified Spanish as their native language during the interview and had not realized they could have used a Spanish-language version. These participants suggested greater user interface visibility of the Spanish option and adding the option to toggle individual questions between Spanish and English (Table 2). One participant noted that if the Spanish option was more visible, they would have felt more respected by the study.

Most participants said the assessment took an expected or shorter-than-expected amount of time to complete. However, some participants in the incompletion and time cohorts shared that interruptions, lack of time, and/or the length or detail of the tool sometimes caused them to stop or take more time on the tool. Some suggested providing explicit and clear notifications of the need to find a quiet place to complete the assessment and the amount of time the tool would take (Table 2).

Electronic application functions

Most participants noted that the assessment was easy to use and navigation was smooth and intuitive. Participants used a wide variety of devices, and most indicated that the design and layout functioned well on their device:

“It loaded fine and it wasn’t squished or anything. It was great…. it was just very clearly laid out. And I like when there’s not a million questions on every screen. So that was well done.” (Incompletion; Interviewee 4)

Participants noted missing functions that would have helped them overcome barriers (Table 2). The most frequently desired functions were allowing participants to save their place and return without starting over and a back button so they could revisit and alter previous answers. A few interviewees also suggested adding a progress bar approximating how many questions remained. Finally, participants with incomplete attempts suggested or endorsed automated messages reminding them to return.

Acceptability of study tool compared to clinician-collected family history

We assessed whether interviewees – who all experienced barriers to assessment – viewed the study tool as an acceptable alternative to clinician-collected family history by asking about experiences with family history collection in clinical care and preferences between the study tool versus a clinician.

Experiences with the electronic tool vs. clinician-collected family history

When participants compared experiences using a patient-facing assessment to experiences of clinician-collected family history, two major themes emerged: experiences of 1) respect and/or relationship and 2) family history collection approaches.

Regarding experiences of respect and relationships, some participants indicated ease of speaking with clinicians due to trust in the medical profession, while others indicated that trust depends on the individual clinician, with some making them feel heard and others being dismissive. Some participants highlighted past experiences of feeling disrespected by clinicians, such as being ridiculed for being concerned about family history or being told family eating habits caused cancer in their relatives because of the patient’s weight. One participant compared their experiences within clinical care at one study site to those in a care system designed for Native Americans, where they felt their family cancer history concerns were more validated and respected.

“But when I had the experience of just requesting and getting denied for the mammogram through my PCP [at primary study site], then I kind of felt unheard or like my concerns at this point don't matter...I'm just like [at the Native American health service organization, they are] not really like just giving everybody what they want, but [are] listening to them and doing it by ... a case by case [basis].” (Accuracy, Interviewee 54)

This participant also compared their experience with the study tool to their experience within the care system designed for Native Americans, indicating that the tool felt similarly respectful because it led to appropriate follow-up.

Most participants recalled discussing family history with a clinician at some point. While some participants noted a clinician’s ability to probe and explain concepts or have a ‘back-and-forth’ with the patient, clinicians were more commonly described as inattentive to detail or as treating the family history as unimportant:

“Like it doesn’t have an impact. Like it hasn’t…They haven’t said, oh okay. Well, we might want to talk about, you know…[chuckles]…keeping that on our radar or anything like that. It’s just like, okay, I’ll make a note.” (Accuracy, Interviewee 52)

By contrast, the assessment used in CHARM was typically described as more comprehensive and as allowing participants to spend more time carefully answering questions than they could in a clinical visit. A few participants noted patient-facing assessments offer privacy for topics that were uncomfortable for them (e.g., deaths, gynecologic cancers).

Preferences between the electronic tool and clinician-collected family history

Fifty-three percent (N = 28) of interviewees stated a preference for the CHARM tool over clinician-collected family history, while 15% (N = 8) stated a clinician preference, 13% (N = 7) stated that they did not have a preference, and 23% (N = 12) did not clearly commit. Preference distributions were similar across cohorts, with the highest preference for the clinician (26%, 5/19 respondents) in the time cohort, and among those in the incompletion cohort who had not completed the assessment (20%, 2/10).

A few participants who indicated a clinician preference noted that clinicians could interactively explain concepts, reducing their mental burden and increasing understanding. Others noted the ability of clinicians to tailor questions to their health, concern that online forms would not impact their care, personal comfort with face-to-face interactions, and/or a dislike of reading.

Common reasons for study tool preference included the opportunity to gather more accurate family history from relatives, the convenience and privacy offered, and the tool’s self-paced nature. Interviewees reported not feeling rushed when using the tool and/or being able to provide more detail, compared to limited time during a doctor’s appointment.

“There was more detail on the [tool]. And I could go at my own pace. And you know, a doctor’s appointment is rushed. So usually I just pinpoint like, you know grandparents, siblings, parents…because I know…there’s not a lot of time for the appointment. It feels so rushed. Yeah, time is limited.” (Accuracy, Interviewee 47)

Those who did not indicate a clear preference or stated they had no preference provided several reasons, including that preferences may depend on circumstances (e.g., patient-clinician relationship) or that both approaches had benefits and drawbacks. Benefits and drawbacks provided were similar to those cited by those with explicit preferences.