Factors Influencing Patient Preferences for Telehealth Cancer Genetic Counseling During the COVID-19 Pandemic

PURPOSE:

With onset of the COVID-19 pandemic, telehealth became the primary modality for health care appointments. This study examined patient experiences with and preferences for telehealth at a cancer genetic counseling clinic throughout the first 6 months of the pandemic (March-August 2020).

METHODS:

An anonymous survey assessed patient demographics; usage and prior experience with technology; emotional responses, technical experiences, and satisfaction with the telehealth appointment (via the Genetic Counseling Satisfaction Scale and Visit-Specific Satisfaction Questionnaire); preference for future telehealth; and recommendation of telehealth to others.

RESULTS:

Among 380 respondents, most were highly satisfied with the telehealth appointment (with 65.6% and 66.4% of participants completing the Genetic Counseling Satisfaction Scale and Visit-Specific Satisfaction Questionnaire, respectively). Multivariable analyses indicated several notable findings. Adjusting for relevant covariates, participants with less education felt significantly more concerned about telehealth than those with highest educational attainment. Participants age 40-69 years were generally more comfortable, relieved, and grateful that their appointment was scheduled as telehealth than were those older than 70 years. Women were marginally more relieved and grateful for telehealth appointments than men. As the pandemic progressed, significantly more participants were highly satisfied with their telehealth appointment and participants trended toward having greater preferences for future telehealth use. Most participants (78.6%) would recommend telehealth to others, although 50.8% preferred future in-person appointments.

CONCLUSION:

As the pandemic progressed, patients expressed increasing preferences for and satisfaction with telehealth. Service delivery models that incorporate individual patient preferences should be developed with special consideration to factors such as age, sex, and education level.

INTRODUCTION

Although genetic counseling traditionally relies on in-person appointments, alternative service delivery models such as telehealth (use of visual and audio technology to provide health care services remotely) have been explored for over 20 years.^1-3 Advantages of telehealth include improved patient access,⁴ comparable levels of diagnostic accuracy compared with in-person appointments,^5,6 and increased efficiency and convenience.⁷

Telehealth has been more commonly explored in the cancer genetics setting,⁸ perhaps because of evidence of high patient satisfaction with this model.^7,9-11 Nonetheless, when given the choice, patients historically have preferred in-person consultations^6,12 and in-person appointments remain the primary service modality in the genetics community.¹³ However, with onset of the COVID-19 pandemic in early 2020, health care institutions were forced to quickly consider and adopt alternative service delivery models. In New York state (NYS), all nonessential employees were required to work remotely as of March 22, 2020.¹⁴ At Memorial Sloan Kettering Cancer Center (MSK) in New York City (NYC), cancer genetic counseling services were rapidly converted to video or telephone and telehealth appointments remained the primary service modality throughout the year.

Initial data regarding acceptability of telehealth during the COVID-19 pandemic suggest high patient satisfaction,¹⁵ even more so than with in-person appointments.¹⁶ Furthermore, several genetics programs have reported challenges and successes of transitioning to telehealth from the institutional perspective.^17-21 However, there are no known studies assessing patient experiences with the dramatic transition to telehealth in the genetics setting engendered by the pandemic.

As the COVID-19 pandemic evolved, it remained unknown if differences in telehealth acceptability existed between patients undergoing a genetics evaluation during the initial stages of the pandemic and several months into its progression. As the COVID-19 pandemic eroded professional and personal normalcy, factors such as age, sex, and education level could potentially influence individuals' telehealth experiences. This study sought to capture patient experiences with and preferences for telehealth at the MSK cancer genetic counseling clinic throughout the first 6 months of the COVID-19 pandemic, from March 2020 through August 2020.

METHODS

Participants

Study participants completed an anonymous REDCap (Research Electronic Data Capture)²² survey designed by the study team (K.E.B., E.E.S.-M., and C.E.B.). Eligible participants included patients seen for a new visit appointment to undergo pretest or post-test (eg, to interpret results) genetic counseling via video and/or telephone at MSK from March 22, 2020, to August 31, 2020. Appointments were scheduled during regular business hours and consisted of meeting with a genetic counselor, with or without an attending physician, via a secure video platform or telephone. Although the default appointment modality was video, audio appointments could occur because of technical difficulties or patient preference. Eligibility was determined through review of a clinic appointment tracking system. Patients under age 18 years, non–English-speaking patients, and patients without a MyMSK portal account (secure electronic communication platform) were excluded. Eligible patients were sent a survey invitation through their MyMSK portal account. Because of timing of study approval by the Institutional Review Board, patients with appointments between March 22 and July 2 were sent the survey invitation on July 10, whereas patients with appointments after July 2 were sent the invitation approximately 1 week after their appointment. The MSK Institutional Review Board deemed this work exempt research; therefore, all participants confirmed agreement with their voluntary willingness to participate by completing the survey.

Measures

Demographics were reported by participants: age, sex, cancer history (yes or no), educational level, and month of the genetics telehealth appointment.

Device usage was assessed by any reported use of the following device(s) to access Internet at home: (1) tablet, (2) smartphone, (3) laptop or computer, and (4) other devices. These items were analyzed as individual variables. A composite score reflecting overall usage was created by summing all instances of device endorsement.

Prior experience with video technology was measured using two items assessing whether participants had ever used a video meeting for (1) work and/or personal use and (2) health care appointments (responses: 0 = no, 1 = rarely [1 time a month], 2 = occasionally [2-4 times a month], and 3 = often [> 5 times a month]).

Emotional responses to telehealth were measured using six items. Participants indicated their level of agreement with the following statements: I felt [concerned/disappointed/frustrated/comfortable/relieved/grateful] when I received notification that my appointment was scheduled as a telehealth visit (responses: 1 = strongly disagree and 5 = strongly agree).

Technical experience with telehealth was measured via four items, including (1) concern before the appointment about technology not working properly, (2) concern before the appointment about quality of care, (3) ease of use of technology during the appointment, and (4) satisfaction with quality of audio or visual during the appointment (responses: 1 = strongly disagree and 5 = strongly agree).

Satisfaction with the appointment was measured via two validated scales: the Genetic Counseling Satisfaction Scale (GCSS)²³ and Visit-Specific Satisfaction Questionnaire (VSQ).²⁴ The total scores for GCSS and VSQ represent a sum of responses to individual items (with mean imputation used in cases of < 20% missing data). The GCSS contained six items (responses: 1 = strongly disagree and 5 = strongly agree), with a highest possible score of 30 (Cronbach's α = .92). The VSQ contained eight items (responses: 1 = poor and 5 = excellent) with a highest possible score of 40 (α = .84). The VSQ was previously revised to assess genetic counseling appointments.⁹ We further modified items to accommodate the telehealth setting by replacing convenience of the location of the office with convenience of the appointment from home.

Preference for future telehealth use was assessed by the question: In the future, if both in-person medical appointments or telehealth medical appointments are available, which would you prefer? (responses: 1 = in-person; 2 = in-person, but would consider telehealth; 3 = no preference; 4 = telehealth, but would consider in-person; and 5 = telehealth).

Recommendation of telehealth to family and/or friends was assessed with the statement: I would recommend telehealth to my family and/or friends if they needed a genetic counseling appointment (responses: 1 = strongly disagree and 5 = strongly agree).

Analyses

Data were analyzed using IBM SPSS, version 26. Descriptive statistics were computed for all variables. The distribution of responses on the GCSS and VSQ in the current study was negatively skewed, with a sizable proportion of participants indicating complete satisfaction. To correct the skew, we dichotomized responses to both variables to allow for comparisons of participants who were less satisfied (ie, the bottom third of the overall distribution of responses; GCSS scores ≤ 25 and VSQ scores ≤ 30) with the majority who were highly satisfied (ie, the upper two thirds of the overall distribution of responses).

Bivariate associations were examined among demographics, device usage, and prior experience with video technology with participant telehealth outcomes including emotional responses, technical experience, satisfaction, preference for future use, and recommendation to family and/or friends. We used multivariable linear regression to assess the relationships between predictors that emerged as significant (P ≤ .05) in bivariate analyses and an outcome of interest.

RESULTS

Participant Characteristics

A total of 1,327 eligible patients seen in the MSK Clinical Genetics Service between March 22, 2020, and August 31, 2020, were sent a survey invitation, with 380 responses received (response rate = 28.6%). Most participants were age 50-69 years (57.1%), were female (77.6%), had a cancer history (84.5%), and obtained an educational level of a college degree or higher (75.3%). Most participants regularly used a smartphone (79.7%) or laptop or computer (74.2%) to access the Internet at home. Most participants (63.4%) used video technology for work and/or personal use multiple times per month, but not for health care appointments (68.9% never or rarely used video technology; Table 1).

TABLE 1.

Participant Characteristics and Prior Exposure to Technology (N = 380)

Emotional Responses to Appointment Scheduled as Telehealth

Most participants endorsed positive emotional responses (ie, response of agree or strongly agree), including feeling comfortable (n = 263, 70.3%), relieved (n = 200, 53.6%), or grateful (n = 200, 53.3%) when learning that their appointment was scheduled as telehealth. Most did not endorse (ie, response of disagree or strongly disagree) feeling concerned (n = 251, 66.9%), disappointed (n = 257, 68.9%), or frustrated (n = 275, 73.3%; Table 2).

TABLE 2.

Telehealth Outcomes

Bivariate analyses indicated significant associations between education with feeling concerned and frustrated; age with feeling concerned, disappointed, comfortable, relieved, and grateful; sex with feeling relieved and grateful; prior use of video technology for work and/or personal use with all six emotions; and prior use of video technology for health care appointments with feeling concerned, disappointed, frustrated, and comfortable. The results of the final multivariable regression analyses of these variables are shown in Table 3. A multivariable model indicated that only education and prior use of video technology for work and/or personal use were significantly associated with feeling concerned upon learning about the scheduled telehealth visit, such that those with an associate degree or lesser education were more concerned than those with PhD, law, or medical degrees and those who more frequently used video for work and/or personal use were less concerned than those who used it less frequently. Separate multivariable models indicated that those who more frequently used video technology for work and/or personal use were also significantly less disappointed and frustrated, and more comfortable, grateful, and relieved, than those who used it less frequently. In general, those age 40-69 years were more comfortable, grateful, and relieved than those older than age 70 years. Women also reported feeling marginally more grateful and relieved than men.

TABLE 3.

Multivariable Regression Analyses Examining Demographics and Prior Exposure to Technology as Correlates of Telehealth Outcomes

Technical Experience with Telehealth

Among participants, 30.4% (n = 114) endorsed being concerned about technology not working properly before their appointment and 22.1% (n = 83) endorsed being concerned about quality of care before their appointment. Additionally, 78.1% (n = 293) of participants endorsed the technology as easy to use during the appointment and 75.5% (n = 281) endorsed being satisfied with audio and/or visual quality during the visit (Table 2).

Bivariate analyses indicated significant associations between education with concern about technology not working, appointment month with concerns about quality of care, prior use of video technology for work and/or personal use with concerns about technology not working and about quality of care, and prior use of video technology for health care appointments with concerns about technology not working and about quality of care. The final multivariable model (Table 3) indicated that participants with associate degrees had greater concerns about technology not working than those with the highest educational attainment and those who used video technology more frequently were less concerned than those who used it less. Furthermore, a multivariable model indicated that participants who used video technology more frequently were less concerned about the quality of care than those who used it less frequently. None of the examined variables were significantly associated with participants' reports of the ease of using technology or their satisfaction with audio and/or visual quality during the appointment.

Satisfaction

Most participants were highly satisfied with the telehealth appointment (M [SD] for GCSS = 26.27 [4.35] and VSQ = 32.91 [6.22]). Bivariate analyses indicated that only the month of the appointment was associated with satisfaction. As time progressed, greater proportions of participants reported being highly satisfied with the appointment as assessed by the GCSS (linear-by-linear association χ² = 7.68; P < .01; Fig 1A). A similar, marginally significant trend was observed for month and VSQ scores (P = .07).

FIG 1.

Levels of patient satisfaction with and preference for telehealth. (A) As time progressed, a significantly greater proportion of participants reported high satisfaction with the genetic counseling appointment as assessed by the Genetic Counseling Satisfaction Scale (bivariate analysis: χ² = 7.68, P < 0.01) and a similar, marginally significant trend was observed for time and satisfaction as assessed by the Visit-Specific Satisfaction Questionnaire (χ² = 3.23; P = .07). (B) As time progressed, participants also trended toward reporting a greater preference for future telehealth use (β = .10; P = .056).

Preference for Future Telehealth Use

Nearly equal numbers of participants had clear preferences for either in-person (18.8%) or telehealth (18.0%) medical appointments in the future. Thirty-two percent of participants preferred in-person appointments in the future but would consider telehealth appointments, 19.4% preferred telehealth but would consider in-person appointments, and 11.8% had no preference (Table 2).

Bivariate analyses indicated a marginally significant association between appointment month and preference for future telehealth use. Participants who completed a telehealth appointment during a later month trended toward having a greater preference for future telehealth use (β = .10, P = .056; Fig 1B).

Recommendation of Telehealth to Family and/or Friends

Most participants (78.6%) would recommend telehealth to family and/or friends undergoing a genetic counseling appointment (Table 2). Bivariate analyses indicated that none of the examined variables were associated with willingness to recommend telehealth to others.

DISCUSSION

This study evaluated experiences and preferences of patients undergoing a telehealth clinical genetics evaluation throughout a six-month period of the COVID-19 pandemic. Notably, the results demonstrated increasing satisfaction and a marginal preference for telehealth as the pandemic progressed.

Overall, patients expressed a positive emotional response when the appointment was scheduled as a telehealth visit, although those age 40-69 years were generally more comfortable, grateful, and relieved than those over age 70 years. Telehealth may provide greater convenience and flexibility for middle-aged individuals who may work during the day and/or have childcare responsibilities. Additionally, women were marginally more relieved and grateful than men for telehealth scheduling. Recent studies indicate that housework and childcare responsibilities have fallen disproportionately onto women during the COVID-19 pandemic,²⁵ causing negative personal and professional impacts on working women.^26-28 The present findings potentially reflect the unequal distribution of household responsibilities between women and men, which has been exacerbated by the pandemic, and suggest that telehealth may serve a need in this population during and perhaps even after the pandemic. Level of education was another disparity identified in the emotional response to telehealth. Those with less education were significantly more concerned about telehealth before their appointment than participants with highest educational attainment. However, these concerns seemed to dissipate during the appointment, as there were no associations between education and reported ease of use or satisfaction with the technology. These socioeconomic factors may be serving as a proxy for health literacy and numeracy, which have been associated with increased telehealth acceptability and usability.²⁹ This study did not consider other contributors to socioeconomic status, such as race or employment. Research is needed to further explore how socioeconomic factors affect patient experiences with telehealth during the COVID-19 pandemic.

MSK genetic counseling appointments remained entirely remote throughout the summer, even as restrictions in NYC were lifted,³⁰ creating an opportunity to assess patient perceptions of telehealth at different timepoints throughout the pandemic. Participants who underwent genetic counseling later in the pandemic were more satisfied and had a marginally greater preference for using telehealth in the future. These important findings suggest that as the pandemic progressed, patients adapted to telehealth technology and even preferred it as a service modality. Participants who more frequently used a video platform for work and/or personal meetings also had more positive emotional responses to the telehealth scheduling. As virtual meetings became the standard interaction method in 2020, perhaps patients became more comfortable with this platform and more willing to use it for health care. Additionally, as time progressed, challenges associated with the initiation of a new technology might have been addressed among both patients and providers, leading to improved communication, efficiency, and a more successful appointment later in the year. It is possible that other emotional variables might have influenced patient perspectives throughout the pandemic. Given that NYC experienced the highest diagnosis and death rates during March-April,³¹ patients might have felt stressed, anxious, or fearful during this challenging period, which could have influenced their overall life experiences, including this telehealth experience, as multiple studies have demonstrated that the COVID-19 pandemic has had a significant impact on public mental health.³²

Despite the high acceptability of and satisfaction with telehealth during the pandemic, approximately 50% of participants still preferred in-person future medical appointments. Given that the study measure assessed preferences about telehealth for medical appointments in general, we cannot be certain that these preferences also apply to future genetic counseling appointments specifically. However, this finding is consistent with studies conducted prepandemic, which found that patients preferred in-person genetic counseling appointments,^6,12 despite a lack of significant associations found between telehealth or in-person genetic counseling with knowledge gained, service satisfaction, anxiety, or perceived provider empathy.³³ Interestingly, we observed a trend toward a preference for telehealth as the pandemic progressed, suggesting a potentially greater future demand for telehealth services. Institutions and health care providers should be prepared to offer alternative service delivery options not only to meet patient preferences but also to increase access for patients undergoing cancer genetic counseling and address the increasing demand for genetic services.^3,34

The retrospective study design is a limitation. Patients who completed a telehealth appointment during the first 3 months of the pandemic were sent survey invitations in July, whereas patients who completed the appointment in the last 3 months were sent invitations approximately 1 week after the appointment date, potentially allowing for more accurate responses. Furthermore, all patients were asked to reflect on feelings they had before the appointment, potentially introducing a recall bias. Additionally, patients who responded to this electronic survey all had online portal accounts and therefore may be more comfortable with technology overall. Most patients who underwent a genetic counseling appointment in this timeframe did not complete the survey. The anonymous nature of the survey precluded our ability to compare survey responders with nonresponders, and it is also possible that patients who were less satisfied with telehealth declined to complete the survey. Additionally, many study measures were newly developed and may benefit from future refinement and evaluation. For example, items did not ask participants to specify whether their visit occurred by telephone or video, yet differences in satisfaction and preference may exist between these two modalities. Future studies are needed to examine these differences more closely. Finally, most participants were female and highly educated and data were unavailable about participant race or ethnicity; thus, findings may not be generalizable to different populations.

Multiple studies have examined satisfaction with telehealth in various medical settings since the onset of the COVID-19 pandemic, most of which reported high provider and patient satisfaction.^15,16,35,36 Only one known study to date has examined the preferences of genetics providers, which demonstrated that genetic counselors in NYS were satisfied with the use of video or telephone modalities during this pandemic.³⁷ Similar to patient preferences identified in this study, most genetic counselors wanted to continue telehealth services after the pandemic resolves although two thirds of those participants would prefer that the majority of their consultations be in person. Therefore, the preferences of both genetics providers and patients in NYS are aligned, demonstrating that telehealth should remain a future option, but in-person appointments still serve a need. Additional research and policy are needed to ensure that issues related to licensure, reimbursement, and other provider and patient needs are resolved so that telehealth can remain a sustainable modality for those who wish to use it.

To our knowledge, this is the first known study to report on patient experiences with telehealth genetic counseling during the COVID-19 pandemic. Findings illustrate that as the pandemic progressed, patients expressed less concern regarding the quality of telehealth care and an increasing preference for and satisfaction with telehealth. As institutions consider postpandemic service options, models that incorporate individual patient preferences should be developed with special consideration to factors such as age, sex, and education level.

AUTHOR CONTRIBUTIONS

Conception and design: Kelsey E. Breen, Corinna E. Bertelsen, Margaret Sheehan, Megan Harlan Fleischut, Kenneth Offit, Zsofia K. Stadler, Erin E. Salo-Mullen, Jada G. Hamilton

Financial support: Zsofia K. Stadler

Administrative support: David Wylie, Kenneth Offit, Zsofia K. Stadler

Provision of study materials or patients: Margaret Sheehan, Kenneth Offit, Zsofia K. Stadler

Collection and assembly of data: Kelsey E. Breen, David Wylie, Kenneth Offit, Zsofia K. Stadler, Erin E. Salo-Mullen

Data analysis and interpretation: Kelsey E. Breen, Malwina Tuman, Kenneth Offit, Zsofia K. Stadler, Erin E. Salo-Mullen, Jada G. Hamilton

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

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