1 Introduction

Prior to 2020, the U.S. population was slowly engaging more in the digital health, including electronic health records (EHRs) and patient portals. EHRs have been increasingly integrated into the clinical environment and used by patients over the past several years. Nearly 40% of U.S. adults in 2020 reported using their patient portal at least once over the past 12-months [1]. This usage is compared to 28.2% in 2017 and 27% in 2014 [1]. This, pre-COVID, uptake of digital health was due largely to the implementation of policies that incentivized use by health systems or clinics. As summarized by Johnson and colleagues, the 21st Century Cures Act and federal rulemaking sought to increase the access, exchange, and use of electronic health information by patients and their caregivers [2].

COVID-19 then further advanced virtual care and telehealth use broadly [3, 4]. As well known, COVID-19 required the use of telehealth to safeguard patients and health professionals. Now, since the onset of COVID, in which telehealth was a necessity, policies have further advanced to embrace virtual options for patients and families. For example, Medicare now reimburses for select services, particularly behavioral health services, while states have instituted policies (e.g., licensure) that allow for specific rights within a given jurisdiction [5]. Though still not universal in the U.S. population, access to telehealth has increased.

Oncology was no different than most care disciplines in needing to accommodate practice during COVID-19 and in the years since. With over 1.9 million Americans expected to receive a cancer diagnosis in 2023 [6], understanding and addressing the needs of patients and their caregivers with respect to uptake is essential. In recent years, the American Society of Clinical Oncology (ASCO) provided guidance anticipating increasing use [7]. The physical, psychological, and financial impact of cancer on patients is often profound and extends to adversely impact those who are supporting a patient (i.e., caregivers). Caregivers provide patients with logistical, emotional, and nursing-related support [8,9,10,11]. Thus, telehealth might provide an opportunity to increase access and better engage caregivers and provide them with better support.

By exploring the oncology literature about use of telehealth, we can better understand how such care might be used to support the care experience for patients and their family caregivers. This analysis might be particularly important given the known areas of strain, especially for populations – patients and caregivers alike – vulnerable to poor physical and emotional deficits and glaring disparities. Indeed, access to care, financial toxicity, and career impact are examples of known strains for patients and caregivers and of which there are significant disparities [12]. To date, literature reviews on telehealth use exist but are not specific to the context of the US, do not focus specifically on perceived benefits and limitations of telehealth for cancer patients and their family caregivers, or lack description of review methodology [13,14,15].

The goal of this scoping review was to identify studies pertaining to the use of telehealth among persons with cancer (i.e., cancer patients) and their caregivers to synthesize benefits and limitations with use. Interactions with providers is a necessity when diagnosed with cancer and availability through telehealth is increasing and might offer greater access to ongoing care, but only if barriers and limitations among all patients and caregivers—who are regularly part of care communication [8] – are addressed.

2 Methods and procedures

2.1 Study design

This study was a scoping review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The process involved identifying relevant research articles, screening the articles for eligibility, and synthesizing study data and findings from the articles deemed eligible [16].

2.2 Eligibility criteria

Inclusion criteria for articles included: (1) studies involving use of telehealth/telemedicine (herein after used “telehealth”); (2) findings related to use and experiences among a cancer patient and/or their caregiver; (3) studies conducted in the United States; and (4) studies conducted between March 2020 to July 2023. Articles were excluded if they did not involve telehealth use; cancer patient or caregiver perspective of use of telehealth; or were studies not conducted in the United States or between March 2020 and July 2023. The review was limited to the US due to the specifics of the US healthcare system and varied access to telehealth globally. The focus on US studies allowed for all studies to be conducted generally within a similar context or policy ecosystem. The years for the scoping review were also limited to those from the time point of COVID going forward to manuscript development.

2.3 Procedures

The articles for this scoping literature review were identified by searching the PubMed, EBSCO, and Google Scholar databases. Due to the extensive searching mechanism of Google Scholar, the first 200 articles retrieved were included as identified articles, as previously found to be best practice [17]. The search terms included: (patient OR care recipient) AND (caregiver OR family caregiver OR informal caregiver) AND (telehealth OR telemedicine) AND (oncology OR cancer). The date range filter option was used with each database to include articles published between March 2020 and July 2023 (when the search was conducted). The articles identified using the PubMed, EBSCO, and Google Scholar databases were exported to EndNote into separate libraries, and, using the EndNote functionality, removed duplicate articles.

All articles were screened by title, date, and abstract to assess initial eligibility. Articles that seemed to meet eligibility following the initial screening were reviewed in full-text and excluded if found to be ineligible upon in-depth review. The full-text articles were screened independently by two reviewers. Secondary review included confirmation of article eligibility according to inclusion and exclusion criteria in addition to confirmation of findings abstracted from each article.

2.4 Analysis

Data from each article was abstracted into a data table (see Table 1). Abstracted data includes study purpose, cancer type, study design and measurement, sample descriptions including patient and/or caregiver’s demographics (e.g., age, gender, race, and ethnicity), and primary outcomes related to telehealth use. Article findings were synthesized according to perceived benefits and limitations of telehealth, which were further categorized into themes as described below.

Table 1 Telehealth Perception Studies
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3 Results

The initial article search identified 1,005 articles for initial review. After removing duplicates and conducting the initial screening and full-text review, 39 articles were identified as eligible for this scoping review. Figure 1 outlines the PRISMA article identification process in detail. Most of the eligible articles involved quantitative analyses, including analysis of patient satisfaction surveys and/or patient and healthcare provider surveys [16, 18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36]. Other studies were qualitative, including only interviews or focus groups [37,38,39,40,41,42,43,44,45,46] or involved a mixed-methods approach [27, 47,48,49]. Varied oncologic specialties are represented in the included articles, including breast [24, 27, 39, 43], gynecologic [31, 36, 42], hematologic/oncologic[38, 45, 46], neuro-oncology[25], liver [47], prostate [18], lung [41], and a combination of breast and gynecologic [35]. Additional characteristics are provided in Table 1, including the age, gender and race or ethnicity of the samples when reported. All studies included patient perceptions while three studies included caregiver perceptions. The participants in most studies were predominantly non-Hispanic White and at a proportion higher than the general United States population (58.9%), while six studies [20, 24, 26, 34, 44, 50] had representation of Black participants at the ratio higher than that in the U.S. population (13.6%) [51]. Table 1 outlines the characteristics of each article and outcomes related to telehealth use or perceptions. The results are categorized below according to the patient and/or caregivers’ perceived benefits and limitations of telehealth, along with specific subthemes for benefits and limitations for added detail.

Fig. 1
figure 1

Article identification process

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3.1 Benefits of telehealth

Benefits of telehealth as reported in the studies most often related to a (1) Convenience, (2) Savings, (3) Access to Care, (4) Work or Career, (5) Caregiver Inclusion and Perspective, or (6) Other given the array of perceived benefits. These themes are described below per findings.

3.1.1 Convenience

Across several studies, 28–87.4% of patients perceived telehealth to be “convenient” as measured as a yes or no [21, 26, 34, 38, 39, 44, 46, 49, 50, 52, 53]. However, differences were noted according to sociodemographic factors. For example, when reporting on telehealth cancer genetic counseling during COVID-19, patients with lower education levels, older age (> 70 years of age), and male sex were less relieved or grateful for telehealth visits [53]. Moreover, Darcourt and colleagues reported that, though a high percentage of patients were satisfied with telehealth, the patients who declined participation in video telehealth visits for cancer care during the early months of COVID were significantly older, lived in significantly lower-income areas, and were significantly less likely to have commercial insurance than patients who participated [54].

3.1.2 Savings

The specific savings aspects of telehealth included (1) time savings [18, 21, 23, 31, 34, 35, 38, 41, 42], (2) travel savings [18, 20, 23, 25, 29, 31, 39, 41, 43], and (3) cost savings [18, 26, 38, 42, 43, 46]. For example, in three studies the time, travel, and cost savings were transportation-specific, such as reducing and/or eliminating time spent in a vehicle for in-person appointments [42], reducing mileage traveled by participants [39], and saving money on both parking and gas [38, 42]. Other savings-related benefits included reduced overall time for appointments due to not having clinic wait times that are commonly associated with in-person appointments [42] and savings on co-pays due to the virtual nature of the telehealth appointment [43].

3.1.3 Access to care

Several studies pertained to improved access to care [20, 26, 30, 35, 39, 40]. For example, one study reporting the perception that one could access care sooner via telehealth compared to an in-person appointment [55], while another study reported the benefit of engaging in an accessable manner among patients with disabilites [39]. Two studies reported that telehealth expanded access to other services, such as supportive cancer care services (that otherwise were inconvenient or inefficient to attend) [40] or to other health professionals, like social care professionals [35].

3.1.4 Work or career

Six of the articles included a theme of convenience of telehealth and work schedule [26, 29, 38, 40, 42, 49]. Studies described in five of the six articles specified that not having to take time away or off from work was an advantage of telehealth appointments [26, 29, 38, 40, 49], two studies specifically identifying the decrease in travel/parking time as a means of saving time as related to work impact [29, 38].

3.1.5 Caregiver inclusion and perspective

Two studies noted the benefit of the ability to include family members [43, 55]. Three articles included caregivers in the samples [22, 45, 46]. Two of these studies included the patient and caregivers’ perspective together [22, 46] with one study only having one caregiver included [46], while in the additional, third, study the caregiver perspective was reported upon separately [45]. In this study, the caregivers for pediatric oncology patients reported the impact of the COVID-19 pandemic on their general daily life and children’s medical care, with COVID-19 exposure being the main concern. Caregivers identified telemedicine as a means of allowing continued communication with their children’s healthcare providers without the potential of COVID-19 exposure associated with in-person appointments [45]. An additional study, including the perspectives of both adult survivors of pediatric cancer and their caregivers, explored difficulties and satisfaction with telehealth. Most participants reported that telehealth is an effective way to obtain medical care. When compared to in-person visits, participants reported telehealth visits were better regarding travel time, convenience, and wait time, whereas in-person visits were better regarding connection with the medical provider and provider’s ability to understand the clinical issue [22].

3.1.6 Other

Other reported advantages of telehealth visits include the reduced risk of infection [25, 38, 42, 44, 45, 49, 55], the opportunity to be in a comfortable setting for a visit [43, 50, 55], and a decrease in stress related to amount of distance for in-person visits – especially for rural patients coming from a great distance [39, 46].

3.2 Limitations with telehealth

Several limitations of telehealth were also reported by participants and are categorized as follows: (1) Disruption to Care Experience or Patient-Provider Relationship, (2) Need for Physical Examination, (3) Communication Challenges, and (4) Technology-Related Issues.

3.2.1 Disruption to care experience or patient-provider relationship

Participants noted that the initial transition from in-person to virtual appointments was disruptive to their care and patient-provider relationship due to decreased face-to-face interactions with health professionals [21] and a perceived inability to ask questions that would normally occur during in-person appointments [22]. Some participants agreed that they did not find communicating with a medical provider during a telehealth appointment as satisfactory as compared to in-person [21, 38, 49].

3.2.2 Need for physical examination

Participants also noted the inability of healthcare providers to conduct a physical examination on patients during a telehealth appointment [29, 31, 45, 49, 55]. Specifically for survivors of cancer in one study, 58.8% (n = 110) considered a physical examination critical to detecting recurrence [31]. Additionally, participants in three articles reported missing the physical presence and/or touch of a medical provider that is received during an in-person appointment [21, 38, 40]. In the study conducted by Nguyen-Grozavu and colleagues [43] examining the perspectives of Hispanic breast cancer patients, it was noted that participants found telehealth less effective in building trust as compared to in-person visits. Similarly, a common theme among participants of the included articles was the preference for hybrid oncology care, including both in-person and virtual appointments. Participants reported that it was important to have their initial appointment conducted in-person to establish care and build rapport with their provider [36, 38, 55]. As demonstrated by the participants of the study conducted by Harrington et al. (2023) [55], 55% reported they would not use telehealth to establish care. Additionally, patients reported that appointments focusing on imaging or lab results [20, 37], asking their provider questions [21, 36, 37], and participating in support and/or social groups were more appropriate for telehealth appointments [20, 37].

3.2.3 Communication challenges

Primary challenges were a need for an interpreter [43, 49] or issues related to privacy of communication or confidentiality [26, 49]. One study also noted preferring in-person because of the virtual lacking the important non-verbal communication and interaction [50].

3.2.4 Technology-related issues

Various technology-related issues were noted, including those related to systems [29] such as software malfunction [38], difficulty navigating or using a system [22, 40, 41], difficulty understanding instructions on accessing telemedicine platform and unstable connections or poor Internet [23, 27, 38, 49, 56], and lack of access to equipment, devices, or Internet [26]. Related is also the concern of telehealth literacy [46]. In one study, technology problems were reported to be addressed by moving to audio-only calls [50].

4 Discussion

Cancer remains a significant population health concern. It was expected that over 1.9 million individuals in the U.S. in 2023 were to be informed of a cancer diagnosis, while an increasing number of Americans, 26 million by 2040, are expected to be cancer survivors [6, 57]. People are also living longer with cancer and many 5-year survival rates are higher for a greater number of cancers [57]. Interactions with providers when diagnosed with cancer is a necessity, and access to providers through telehealth is increasing and might improve access and sustainability to ongoing care, but only if barriers and limitations among all patients and caregivers—who are regularly part of care communication [8]—are addressed.

Findings suggest that for patients and caregivers there are both benefit and limitations of utilizing telehealth for oncology care. However, most evidence identified was at the patient-level and highlights a major gap in information about family caregiver perceptions and preferences. Our findings (predominantly patient-based) indicate common benefits across oncology settings, including convenience and time, travel, and cost savings. Findings also suggest that an all-virtual approach in oncology is not feasible nor preferred as hands-on examinations are necessary, including for ongoing survivorship care and prevention. Thus, a hybrid approach is likely best going forward. Ongoing research should continue to explore the preferences and needs of patients, caregivers, clinicians and health systems with respect to the use of telehealth in oncology.

Though limited in the number of studies that engaged caregivers, these findings suggest there are perceived benefit of involvement. Patients report that telehealth increases the ability for the caregiver to be involved. Caregivers are well established as vital to patient care; yet career impact and burden is common and is a significant financial challenge to them [8]. Replacing onsite visits with virtual appointments when feasible is a potential option to improve caregiver engagement more broadly and reduce career and related emotional strain. In 2021 Blue Cross Blue Shield reported the direct and indirect impact of caring as $264 billion and encompassing 51 million Americans [58]. This included work impacts such as disruption in hours or retiring early or quitting [58, 59]. Future research must more intentionally consider the caregiver perspective in understanding experiences of telehealth, particularly as related to employment and career maintenance.

Furthermore, findings for studies that had greater racial and ethnic diversity reported generally similar benefits and concerns among participants compared to studies with a less diverse population. However, differences were evident according to technology-based barriers. Addressing differences in access and overcoming barriers to use is vital given that alarming disparities in cancer outcomes continue to exist by race and ethnicity for certain cancers [60, 61]. Indeed, African American or Black individuals have a disproportionate cancer burden, including the highest mortality and the lowest survival of any racial or ethnic group for most cancers. Black patients continue to be less likely to be diagnosed with stage I disease than White patients for most cancers, with some of the largest disparities for female breast (53% vs 68%) and endometrial (59% vs 73%) [60]. An ACS Survivorship report calls upon evidenced-based strategies and equitable access to available resources to mitigate disparities [57]. If barriers are addressed, telehealth might have the potential to improve access to care and outcomes.

Though non-Hispanic White patients were most prominent racial or ethnic group in the studies, six studies included a high percentage of Black patients. The findings were not specific to race or ethnicity or other sociodemographic variables, but findings for each of these studied showed similar benefit and concerns compared to studies with less diverse populations. This included findings about the appropriate type of service for telehealth (e.g., affirming survivorship care), the use of telephone for appointments, greater convenience and affordability (less indirect costs) [20, 24, 26, 34, 50]. However, in one of these studies with greater racial and ethnic diversity of sample, those with higher household income had higher odds of use of telemedicine than those with lower income [24]. Similarly, in another study high barriers included barriers to the Internet or devices or not wanting to be on video [26]. Moreover, these findings mirror research internationally in which, in one study, the proportion of telehealth visits conducted among Black patients was found to be significantly lower compared with White patients and Black participants were more likely to self-report lack of Internet access [62]. These findings suggests the need to ensure equitable access for such services, including policies that promote access to Internet, or the removal of barriers to use or uncertainty.

In addition to differences according to race and ethnicity, additional differences are also noted, including according to age, income, low health digital literacy, and limited English proficiency [63]. An international study by Loree and colleagues found that older adults (≥ 50 years of age) were less likely to be satisfied with virtual oncology appointments [64]. This review also showed that challenges with telehealth in terms of communication were evident, such as the need for interpreter services. Future research should consider additional challenges for patients who might have other communication-related challenges that were not noted in these studies, such as persons with vision, hearing, or cognitive impairments.

5 Limitations

It is possible that not all eligible articles were included. Articles were only included if they were from the U.S., but it is possible that there is well-documented evidence from other countries regarding telehealth use in oncology. Despite these limitations, this scoping review is an important review to begin to establish understanding of preferences of patients and caregivers for further study and benchmarking. This is especially important given the identified gap in caregivers’ perceptions.

6 Conclusion

This scoping review identified ways that telehealth is beneficial for patients but might also benefit caregivers. These benefits pertain most often to time and cost savings. Concerns most often pertain to limitations as compared to onsite visits and the ability to fully examine patients or engage with them as well as technology-related issues. Future research must specifically assess perceptions among caregivers and assess use as related to disrupting disparities in access and outcomes in oncology.