Preference of Young Adult Cancer Survivors for In-Person Versus Telemedicine Cancer Survivorship Visits

Abstract

Young adult (YA) cancer survivors face barriers to follow-up care, which can be exacerbated by living in a rural location. Telemedicine may mitigate these barriers, but little is known about the preferences of YA survivors for telemedicine or in-person survivorship visits. We surveyed 57 YA cancer survivors in a rural state to assess their preference for survivorship visits. Forty-six percent of respondents preferred an in-person visit while 16% preferred telemedicine. The remaining 39% reported “it depends” or were undecided. In-person visits were preferred when stratified by rural versus urban location. This work can be used to inform survivorship delivery systems.

Introduction

Young adult (YA) cancer survivors have higher morbidity and mortality rates than their peers. This rate is attributed to comorbidities secondary to cancer and cancer treatment.¹ Most adults who were diagnosed with cancer under the age of 18 have at least one chronic health condition: almost 20% have a severe or a life-threatening condition by their mid-20s and over 95% have a life-threatening condition by age 45.^1,2 Due to the risk of significant chronic health conditions, primary and secondary preventive health measures are critically important for these individuals. Preventive health measures include risk-based cancer screening, early detection of long-term adverse effects of treatment, and education regarding the health impact of lifestyle behaviors. Cancer survivorship clinics offer these services to reduce the severity of late effects and improve the long-term health of cancer survivors.³

Despite the increased risk for chronic health conditions, most YA cancer survivors do not attend a survivorship clinic.⁴ Proposed barriers to attendance include lack of transportation, competing life responsibilities, cost of care, inadequate health insurance, and lack of clarity regarding the importance of survivorship care.^4–6 These barriers may be of greatest concern among YAs living in rural areas.³ YA cancer survivors who live in rural areas have a higher health mortality rate than their urban counterparts, and this difference may be increasing over time. Disparities among individuals living in rural areas that may contribute to this increased mortality rate include fewer support services and resources, fewer providers, lack of adequate patient and provider communication, and barriers to access, such as lack of public transportation, time and distance to services, and being under insured.^7–9

Telemedicine may be a means of reducing health care disparities among individuals living in rural locations and minimizing barriers to care for YA cancer survivors.^10–13 For individuals with internet access and a compatible device, telemedicine solves transportation barriers and limits the time needed for medical follow-up. In the setting of the COVID-19 pandemic, access to care by telemedicine expanded rapidly and was integrated into many medical practices, including cancer survivorship clinics.¹⁴ Subsequently, many YA cancer survivors living in either urban or rural areas had access to survivorship clinics via telemedicine, though this rapid increase in access to telemedicine occurred with little supporting evidence and implementation guidelines.¹⁵ Despite limited telemedicine guidelines for this population, YA cancer survivors and providers find telemedicine both feasible and acceptable.^13,15,16

Less is known about YA patient preference for a telemedicine versus an in-person survivorship clinic visit, and if this preference relates to their urban or rural location. To better understand YA cancer survivors' preference for the type of survivorship visit, we surveyed long-term YA cancer survivors residing in Maine. Although 60% of the population lives in urban areas, Maine is considered the most rural state in the nation.¹⁷ Responses were categorized according to the rurality of the county of residence.

Methods

Following Institutional Review Board approval, we identified 262 YAs aged 18–39 years old who were seen at a regional pediatric oncology clinic or associated cancer survivorship clinic located in an urban area in Maine. All individuals had a history of cancer that was diagnosed at any age. Individuals with active cancer (either recurrence or second malignancy), who were no longer living in Maine, deceased, or lacking documentation of health care within our institution's electronic medical record within the last 3 years were excluded. One hundred seventy-two individuals met the inclusion criteria following the chart review and were included in the study.

Survey questions included demographics, county of residence, access to the internet, cancer diagnosis, and year in which cancer treatment was completed. Specific survey questions regarding telemedicine included experience with telehealth visits with other medical providers and preference for telemedicine versus in-person visits for survivorship care. Response options included: “I prefer a telehealth visit,” “I prefer an in-person visit,” “It depends on my current situation,” and “I don't know.” Individuals who stated that their preference for survivorship visit type depended on the current situation were given the opportunity to explain with a free-response field.

In 2021, a cover letter and paper survey were mailed to eligible participants. Respondents either mailed the survey back using a self-addressed stamped envelope or entered their responses directly into the online REDCap^® database via a QR code included in the letter.

Stratification of telemedicine preference was based on sex, age, cancer type, and county of residence. The descriptive statistical methods included counts and percentages of patient characteristics. Counties of residence were labeled “urban” or “rural,” as defined by the Health Resources and Services Administration (HRSA).^18,19 For open-text responses, we performed a qualitative descriptive analysis to summarize the different responses.

Results

We had 57 responses (33.3%, 57/172) to this survey. Eighty-four percent of these individuals (42/50) had been diagnosed with cancer under the age of 18 years. One hundred percent of respondents reported having internet access, and 98% reported having a device with a webcam. Forty-eight respondents (86%) reported having a prior telemedicine visit with a provider of any medical specialty. Of these individuals, 22 (45.9%) had a telemedicine survivorship visit, 11 (22.9%) had a telemedicine appointment with their primary care provider, and 14 (29.2%) had a telemedicine visit with a subspecialist. Of the 54 individuals who reported their county of residence, 35 (64.8%) resided in an urban county and 19 (35.2%) resided in a rural county. The demographic profiles and survey results are displayed in Table 1.

Table 1.

Cancer Survivorship Visit Preference by Demographics and Geography

	All visits	Telehealth	In-person	Depends	Not sure
Cancer survivorship visit preference	N (%)	N (%)	N (%)	N (%)	N (%)
Total	57	9 (15.8)	26 (45.6)	16 (28.1)	6 (10.5)
Sex
Male	26 (45.6)	4 (15.4)	15 (57.5)	5 (19.2)	2 (7.7)
Female	31 (54.4)	5 (16.1)	11 (35.5)	11 (35.5)	4 (12.9)
Age
18–24	25 (43.9)	3 (12)	12 (48.0)	9 (36.0)	1 (4.0)
25–29	17 (29.8)	4 (23.5)	7 (41.2)	3 (17.6)	3 (17.6)
30–34	9 (15.8)	2 (22.2)	3 (33.3)	3 (33.3)	1 (11.1)
35–39	5 (14.0)	0	3 (60.0)	1 (20.0)	1 (20.0)
Cancer diagnosis
Leukemia	26 (45.6)	3 (11.5)	6 (23.1)	12 (46.2)	5 (19.2)
Lymphoma	19 (33.3)	3 (15.8)	12 (63.2)	3 (15.8)	1 (5.3)
Solid tumor	12 (21.1)	3 (25.0)	8 (66.6)	1 (8.3)
Years from diagnosis
0–5	4 (7.0)	0	4 (100)	0
6–10	13 (22.8)	5 (38.5)	4 (30.8)	4 (30.8)
>10	34 (59.6)	2 (5.9)	16 (47.1)	10 (29.4)	6 (17.6)
Unknown	6 (10.5)	2 (33.3)	2 (33.3)	2 (33.3)
Geography
Urban	35 (61.4)	6 (17.1)	18 (51.3)	8 (22.9)	3 (8.6)
Rural	19 (33.3)	3 (15.8)	7 (36.8)	6 (31.6)	3 (15.8)
Did not specify	3 (5.3)		1 (33.3)	2 (66.6)

Almost half of the respondents preferred in-person survivorship visits (46%) to telemedicine survivorship visits (16%). Twenty-eight percent reported “it depends” and 11% reported “not sure.” Subgroup analysis revealed that the preference for in-person survivorship persisted across categories, regardless of sex, cancer diagnosis, or location (rural vs. urban). The exception to this preference was the subgroup of individuals 6 to 10 years from diagnosis: 38% (5/13) preferred a telemedicine visit, while 30% (4/13) preferred an in-person visit. While not preferred by the majority of respondents, telemedicine was considered to be of value to 43% of all respondents, with 15% of YA preferring telemedicine and over 28% reporting that their preference “depended upon the situation.”

There were 15 open responses regarding the preference type “it depends”: 7 from urban areas of residence and 8 from rural areas of residence. Themes regarding the advantages of telemedicine appointments were primarily based on time and the physical inability to attend an in-person visit because of limited transportation or attending school in a different location (i.e., out of state). The responses were categorized as follows: no true preference (N = 3), circumstances such as travel time (N = 2), scheduling (N = 3), transportation (N = 1), location or school making in-person visits difficult (N = 3), incidence of COVID-19 (N = 2), and presence of clinical concerns (N = 1).

Discussion

Despite the accessibility and convenience of telemedicine, YA cancer survivors preferred an in-person survivorship visit over a telemedicine survivorship visit, regardless of rural or urban location. The limitations of telemedicine visits may account for this preference, although we did not specifically query telemedicine concerns in the survey. A telemedicine visit poses challenges, such as a limited opportunity for a physical exam and the potential for privacy concerns.²⁰ We speculate that YAs with a history of a life-threatening medical diagnosis may place greater value on these two visit characteristics. These findings are similar to those of prior studies suggesting that <20% of older adult cancer survivors reported that telemedicine was sufficient for their health care needs.²¹ Further investigation is needed to better understand cancer survivors' preference for survivorship care to better meet their health care needs.

The mixed results of this survey support a hybrid survivorship clinic that offers both in-person and telemedicine visits. Although YAs living in both rural and urban areas preferred in-person survivorship visits, respondents found value in telehealth visits. Over 40% of the respondents either preferred a telehealth visit or stated that their preference depended on the situation. Of these open responses, 10 of 16 were related to time or transportation. Although telemedicine has the potential to ameliorate barriers of time and transportation, it is important to note that telemedicine may not be helpful for individuals who lack the resources to access virtual care or have a lower level of digital literacy.

In addition to considerations regarding implementation, these results may also inform policies regarding insurance and malpractice coverage for telemedicine visits. Both health insurance and physician malpractice insurance are primarily limited to where the patient is physically located at the time of the visit. Therefore, YAs who attend college out of state or who work temporarily out of state do not have access to their health care teams. The standard of care used by most State Boards of Licensure requires that a physician or advanced practice practitioner has a medical license in the state in which the patient is located at the time of the encounter. Travelers or college students can be seen across state lines if the provider has an active license in that state. However, in most circumstances, interactions across state lines are severely restricted by the lack of coverage of medical malpractice insurance carriers. Because of varying levels of malpractice risk from one state to another, health care systems prohibit their providers from providing services to patients who are physically located in a different state.²¹ Standardizing state law at the level of malpractice risk with increasing consistency across state lines may facilitate telemedicine coverage for YAs with chronic medical conditions or unique health care needs.

Telemedicine policy is an area ripe for legislative advocacy. Expanding telemedicine access for YAs with chronic medical conditions across state lines may improve access to care.²⁰ Further research and legislative advocacy are necessary to build upon this work to better inform telemedicine policies.

There are several key limitations to the interpretation of these results. This survey population had been seen at a single pediatric oncology practice or its associated survivorship clinic which is open to cancer survivors of all ages, subjecting this study to selection bias. Because the majority of responders were diagnosed with cancer when under 18 years of age, these results may not be generalizable to individuals who were diagnosed with cancer during young adulthood. Additionally, this study had a small sample size, limited information about gender, and a lack of data regarding race, ethnicity, and insurance coverage. The reported data may not be representative of other areas of the United States. The definition of “rurality” was an oversimplification of the concept of rurality; rurality is a multidimensional concept that includes not only geographic location but also the social, cultural, and economic norms of that location.²² Because we did not compare the rurality of all survey recipients to the rurality of survey respondents, these results may not be representative of the percentage of YAs living in urban versus rural communities in Maine.

Conclusion

In conclusion, in our regional study, YA cancer survivors preferred an in-person visit over a telemedicine visit, regardless of rural or urban location. Although YA preferred in-person visits, YA valued telemedicine options for survivorship visits. YA cancer survivors may benefit from a hybrid cancer survivorship clinic that offers both telemedicine and in-person visits. Further research is necessary to expand on these initial findings to better understand and address the needs of YA cancer survivors.

Footnotes

Acknowledgment

The authors would like to acknowledge the helpful input of Liz Scharnetzki, PhD, in the discussions around preparing this manuscript.

Authors' Contributions

L.B.: conceptualization (equal); investigation (lead); methodology (equal); writing—original draft (lead); writing—review and editing (equal). T.J.: validation (lead); writing—review and editing (supporting). A.H.: data curation (supporting); formal analysis (lead). C.H.: conceptualization (supporting); investigation (supporting); writing—review and editing (supporting). S.A.S.: conceptualization (equal); data curation (lead); investigation (supporting); methodology (equal); visualization (lead); writing—original draft (supporting); writing—review and editing (equal).

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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