Breast Cancer Survivors’ Satisfaction and Information Recall of Telehealth Survivorship Care Plan Appointments During the COVID-19 Pandemic

Breast cancer is the leading type of cancer in women (Iacoviello et al., 2021) and has a survival rate of nearly 90% at the five-year mark following cancer treatment (Runowicz et al., 2015). Although a person is considered a cancer survivor from the time of diagnosis until the end of life (Doyle, 2008), survivors of cancer have unique physical, psychological, and social needs after active treatment has ended. To address these needs, the Institute of Medicine and National Research Council of the National Academies (Nekhlyudov et al., 2017) recommend that oncology providers create a survivorship care plan (SCP) for cancer survivors and their primary care provider after completion of treatment to ensure that proper surveillance and psychosocial needs are met (Jacobs & Shulman, 2017). The SCP should include a customized list of the patient’s providers, a summary of treatments received (e.g., surgery, radiation therapy, chemotherapy, endocrine therapy), a recommended follow-up schedule (e.g., clinic visits, surveillance tests), healthy lifestyle recommendations (e.g., exercise, nutrition, supplements), and education on detecting signs of possible recurrence (Nekhlyudov et al., 2017). When the patient receives the SCP, the provider should also offer additional resources as needed, such as referrals for social work, a dietitian, physical therapy (e.g., lymphedema clinic), acupuncture, and support groups.

SCPs have traditionally been delivered via in-person visits, which have shifted to telehealth because of the COVID-19 pandemic. Telehealth provides an opportunity for nurse practitioners (NPs) to continue their survivorship clinics virtually by providing services, offering education, and managing symptoms while avoiding direct physical contact (Larson et al., 2019), decreasing risk of infection for staff and patients. Although telehealth has been available for many years, the COVID-19 pandemic rapidly increased its use, with a 154% increase in telehealth appointments across the United States from January 2020 to March 2020 when compared to the same time period in 2019 (Koonin et al., 2020). To protect vulnerable patients with breast cancer, many oncology providers have used telecommunication, such as telephone, video, and secure messaging (email) visits, to meet with patients (Segelov et al., 2020). A review of the existing literature on how COVID-19 has affected cancer care noted the transition to telehealth and highlighted the need to examine its effects on patients’ physical, psychosocial, and financial well-being (Dietz et al., 2020). Although telehealth provides many benefits, it raises challenges associated with access to or difficulty using technology, along with performing certain examinations traditionally conducted in person (Leite et al., 2020). Telehealth has also been implemented in a fragmented way for many healthcare centers because of the waves of urgency throughout the COVID-19 pandemic.

Studies suggest that telehealth is generally easy to use, convenient, cost-effective, and associated with positive patient outcomes (Kruse et al., 2017). However, there are mixed findings regarding the effect of telehealth on quality of care for cancer survivors specifically. A recent systematic review and meta-analysis concluded that telehealth has a statistically significant impact on quality-of-life scores compared to usual care among patients with cancer (Larson et al., 2019). Despite the potential benefits, Mayer et al. (2012) surveyed 218 breast cancer survivors about survivorship visit preferences and found that patients viewed virtual options to be more stressful and likely to increase cancer-related worry than in-person visits. However, these preferences were hypothetical rather than a result of actual experiences with telehealth visits. In contrast, several recent evaluations of telehealth in cancer care have identified high levels of patient satisfaction. One study (Sprague & Holschuh, 2019) was on telehealth SCP visits among breast cancer survivors, and another study (Shirke et al., 2020) was on individuals with multiple cancer types in a single radiation oncology clinic. Both studies found that around half of the participants preferred telehealth to in-person visits, citing reduced costs associated with co-pays, transportation, and time off work as key factors for preferring telehealth (Hamilton et al., 2019; Washington et al., 2017). Further supporting the effectiveness of telehealth survivorship care, a pilot study comparing visit satisfaction and recall of diet and exercise guidelines with telehealth versus in-person visits found no significant differences in these outcomes between survivors (Sprague & Holschuh, 2019). However, preliminary work by Zendel et al. (2021) in a noncancer setting identified memory deficits for information among individuals who received telehealth visits compared to those whose visits were in-person.

Although much of the available evidence suggests that telehealth can be an effective mode of SCP delivery, survivorship clinics should evaluate the impact of telehealth on their patients with respect to key outcomes to ensure changes in the mode of delivery do not negatively affect the quality of these visits (Kruse et al., 2017; Orlando et al., 2019). Previous studies on the association between telehealth and satisfaction (Mayer et al., 2012; Sprague & Holschuh, 2019) suggest that older adults may be less likely to prefer or participate in telehealth visits (Darcourt et al., 2021; Kruse et al., 2017). This hesitancy coupled with mixed findings on the effects of telehealth and recall of virtually delivered information (Sprague & Holschuh, 2019; Zendel et al., 2021) support the need to further evaluate the effectiveness of telehealth programs.

Theoretical Framework

The need to examine the changes to care delivery and its outcomes is supported by Donabedian’s (2005) framework for quality of care. Donabedian’s (2005) definition of quality of care is based on the following three interrelated elements: structure, process, and outcome. As Ameh et al. (2017) explained, “Good structure should promote good process and good process should in turn promote good outcome” (p. 258). According to Donabedian’s (2005) framework, structure is defined as context, accessibility, availability, and quality of resources. In terms of virtual care, structure includes factors like patients’ access to telehealth (internet and devices) and providers’ availability to give care through telehealth. Process is the delivery of healthcare services by providers. For example, in-person providers’ breast examinations become patient-conducted breast examinations in telehealth settings. Outcomes are results of healthcare services and how they affect the individual and organization. In the context of telehealth, this could include patient and provider satisfaction and comfort with technology, and patient recall of important information delivered during the visit. Donabedian’s (2005) framework posits that structure influences process, which influences outcomes. COVID-19 has changed the structure of survivorship care by shifting care delivery from in-person to virtual; therefore, it is important to examine how these changes ultimately affect the quality of care.

Although ample evidence supports telehealth as an effective means of survivorship care delivery, it constitutes a major shift to the structure and processes of current care. Evaluating outcomes after changes to care delivery is critical for continuous quality improvement. Such evaluation may be particularly relevant when care delivery is changed suddenly because of external forces (e.g., pandemic-related restrictions), rather than as a planned quality improvement effort. Therefore, the purpose of this study was to describe outcomes in a real-world survivorship clinic setting, after the transition from in-person to telehealth survivorship care visits at three Kaiser Permanente Northern California (KPNC) breast cancer survivorship clinics during the COVID-19 pandemic. KPNC is an integrated healthcare system serving more than 4.5 million patients across 21 hospitals and more than 200 outpatient facilities, with nearly a decade of experience in telehealth. Early experience during the pandemic at KPNC showed a rapid increase in telehealth’s aspects of oncology care, making this system ideal for evaluating telehealth in cancer survivorship (Neeman et al., 2020).

The objectives of this quality improvement initiative were to describe survivors’ satisfaction with telehealth visits and information recall, examine the relationship between telehealth visit satisfaction and age, and describe survivors’ comfort with performing breast self-examinations (BSEs).

Methods

Design, Setting, and Participants

This project used a descriptive correlational design and was reviewed by the research determination committee for the KPNC region, which determined that it did not meet the regulatory definition of research involving human subjects. As a quality improvement study that did not meet the definition of human subjects research, it was not supervised by the institutional review board.

Three northern California–based survivorship clinics ran by NPs participated in the study. The three clinic sites were part of the same larger healthcare system and were comparable in size and patient population. All NPs were advanced oncology certified nurse practitioners with more than 15 years of experience in oncology.

Participants consisted of a convenience sample of female breast cancer survivors who had a telephone or video appointment in one of the three participating clinics between August 15, 2020, and December 15, 2020. Eligible participants included all breast cancer survivors, stages 0–III, who completed treatment and participated in a telehealth survivorship care appointment to review their SCP with the NP. Eligible participants were invited to complete a survey at the end of their virtual visit. Those who had their visit more than four weeks prior to the project’s start were contacted via telephone by the researcher and invited to participate. Professional translators were used to complete the survey by telephone for survivors who spoke a language other than English.

Telehealth Survivorship Visits

Virtual survivorship visits via telephone or video were led by NPs and lasted about 40 minutes. The primary purpose of the visit was to review survivors’ SCP. All SCP visits are scheduled to occur within four weeks of the survivor’s last treatment. The SCP template was created by Kaiser Permanente in accordance with Accountable Care Organizations 2015 requirements (Jacobsen et al., 2018) and was standardized across all three clinics. The template pulls information from the patient’s electronic health record, such as the patient’s care team and treatment summary, and includes a follow-up care plan, healthy lifestyle recommendations, possible effects from their cancer treatments, and a list of resources. The visits are standardized across clinics, with NPs trained to review each element on the SCP at each visit. The survivorship NP prepares the SCP and sends it to the patient via Kaiser Permanente’s secure messaging system prior to their appointment. Prior to the COVID-19 pandemic, these visits were delivered in person and included a provider-conducted breast examination by the NP. With the shift to telehealth, survivors were asked to conduct BSEs.

Measures

The electronic patient survey was created by the project team and consisted of 20 questions about patient demographic information, satisfaction, telehealth preferences, and information recall.

Participant demographic information collected included age category (younger than 40 years, 41–55 years, 56–65 years, 66–75 years, and older than 75 years), and preferred language.

Visit satisfaction was measured with five questions adapted from the Visit-Specific Satisfaction Instrument, using a five-point Likert-type scale ranging from 0 (poor) to 5 (excellent) to measure survivors’ satisfaction with their oncology visit (RAND Health Care, 2018). The survey included questions on five elements related to visit satisfaction, including convenience of the appointment, time spent with the NP, technical skills (e.g., thoroughness, carefulness, competence) of the NP, personal manner (e.g., courtesy, respect, sensitivity, friendliness) of the NP, and overall satisfaction with the virtual visit.

The survey also included seven questions about telehealth preferences, such as whether survivors prefer telephone or video visits and open-ended questions as to why, if they like receiving information via secure email, and if they are comfortable doing their survivorship visit via telehealth.

An additional seven questions were related to information recall from the survivorship visit and covered each category in the standardized SCP that was reviewed by the NP. Categories included cancer stage and type, follow-up plan, healthy lifestyle recommendations, available resources, review of past treatments, and side effect management, if applicable. For each category, survivors could select one of the following responses: did not remember discussing; it was discussed, but not enough information was provided; discussed with the right level of information; or discussed and too much information was provided. Participants were then asked to rank each category discussed during their survivorship visit from the most- to least-useful information.

Participants could respond “yes” or “no” for whether they were comfortable performing a BSE, with patients categorized as either comfortable or not comfortable performing a BSE. This question was included because one of the major changes to the SCP visit with the shift to telehealth was no longer having a breast examination conducted by the NP during the in-person visit.

Data Analysis

All analyses were conducted using Intellectus Statistics. Descriptive statistics (e.g., frequencies, proportions) were tabulated for all variables. Spearman correlations were used to examine whether each individual aspect of visit satisfaction (convenience, time spent with NP, technical skills of NP, and personal manner of NP) was associated with overall visit satisfaction. Researchers also used Spearman correlations to examine if there was an association between age group and overall satisfaction. In addition, chi-square tests to examine whether comfort with BSE and overall visit satisfaction differed among survivors aged 65 years or older compared to those who were younger. In all analyses, statistical significance was determined using a p value < 0.05.

Results

Sample Characteristics

A total of 100 survivors who completed telehealth SCP visits agreed to participate in the survey, of which 62 completed the survey. Per inclusion criteria, all participants were women. Of the 62 survivors who completed questionnaires, 59 were English-speaking, 2 were Spanish-speaking, and 1 spoke Tagalog. Three were aged 40 years or younger, 14 were aged from 41 to 55 years, 20 were aged from 56 to 65 years, 19 were aged from 66 to 75 years, and 6 were aged 75 years or older. Most participants completed the survey soon after their telehealth SCP visit (45 completed it within four weeks, 12 between four weeks and three months, and 5 later than three months) (see Table 1).

Visit Satisfaction

Overall visit satisfaction was high, with 59 survivors rating the visit as excellent or very good. Most survivors also rated each individual element of visit satisfaction as excellent or very good. The lowest-rated element was convenience of the telehealth visit, with 56 survivors rating it as excellent or very good, and the highest-rated element was personal manner of the NP, with 61 rating it as excellent or very good (see Table 2).

A significant positive correlation was observed between each individual element of visit satisfaction and overall satisfaction, including time spent with the NP, personal manner of the NP, convenience of the telehealth visit, and technical skills of the NP. All effect sizes had a correlation coefficient between 0.6 and 0.78, indicating a large effect size and suggesting that as each of these factors increase, satisfaction tends to increase.

A Spearman correlation analysis was conducted between age group and overall satisfaction. There were no significant correlations between any pairs of variables (not shown in tables), suggesting satisfaction with telehealth is similar across all age groups.

Telehealth Preferences

Most survivors reported they were comfortable using telehealth (n = 49) and liked getting their electronic health record via email (n = 51). Only 20 patients agreed that receiving an SCP via email would be acceptable in lieu of a video or telephone appointment.

Half of the respondents said they preferred telephone visits, and the remaining said they did not. Forty-two respondents said they preferred video visits, and 19 did not prefer video visits. Survivors who preferred telephone visits reported it was because these visits were more convenient, they lacked computer access, or they preferred in-person visits despite COVID-19. The commonly reported reasons for preferring video appointments were related to the appointment feeling more personal because of face-to-face interactions, it is easier than going in person, and perceiving that communication via video is equal to in-person. Data were not collected on how many participated in telephone versus video appointments.

Information Recall and Importance

Most survivors were able to recall information discussed at their visits (see Table 3). Across the information recall items, two to seven patients could not remember discussing an item, with resources and the importance of breast examinations being the topics commonly forgotten. Most survivors felt that the right level of information was provided for most items, 40 participants indicated satisfaction of discussion regarding long-term side effects and 45 participants indicated satisfaction of discussion about follow-up plans. Most survivors identified the follow-up plan and cancer stage and type as the most useful categories of information covered during the visit, and topics ranked as least important were healthy lifestyle recommendations, review of treatments, and long-term side effects.

Comfort With Breast Self-Examinations

Overall, 49 survivors reported they were comfortable with doing BSEs, and 13 stated they were not comfortable. Among patients aged 66 years or older, 19 reported feeling comfortable conducting BSEs, along with 30 patients aged 65 years or younger. However, these differences were not statistically significant (c2[1] = 0.32, p = 0.571) (not shown in tables).

Discussion

Consistent with Donabedian’s (2005) healthcare quality model, researchers anticipated that changes in the structure and processes of care (e.g., the shift from in-person to telehealth visits), could affect patient outcomes. This study found that changing the delivery of survivorship visits from in-person to telehealth resulted in high patient satisfaction and good recall of visit information.

Overall satisfaction with SCP visits via telehealth was high, with most survivors rating their experience as excellent. This finding is consistent with previous work comparing telehealth to in-person SCP visits, which found satisfaction to be similar in both care methods (Sprague & Holschuh, 2019). Several factors associated with higher satisfaction included perceived convenience, time spent with the NP, technical skills of the NP, and personal manner of the NP.

Previous work by Darcourt et al. (2021) showed older adults with cancer were significantly less likely to participate in telehealth visits; however, the current study found no association between age and satisfaction with visits. This finding could challenge the idea that older populations are more resistant to telehealth. However, another reason for these disparate findings could be that older adults who dislike virtual options elected to skip their SCP visit rather than participate in telehealth.

Most participants in this study appeared to retain the information given during their SCP meeting and felt the right amount of information was provided. Sprague and Holschuh (2019) found similar results showing no statistically significant differences in information recall between cancer survivors receiving their SCP by telephone versus an in-person appointment.

Just more than half of survivors in the current study ranked the follow-up plan as the most useful information discussed during their survivorship visit. Survivors are anxious to know what comes after active treatment and when they enter the surveillance period, which is discussed and reviewed during the SCP visit. The second most helpful discussion was cancer stage and type, which 20 patients identified as the most useful information discussed. This finding reinforces the need to review important information with patients on more than one occasion. A great deal of time is spent with patients explaining their cancer diagnosis and treatment options, which may take several discussions for a patient to fully understand (Klevos et al., 2017). Patients initially learn about their cancer stage and type from their oncologist at the initial consultation, but patient anxiety and fears may prevent comprehension. Continued education and reassurance can help ease anxiety (Klevos et al., 2017). Therefore, it is not surprising that patients still want to hear about their cancer stage and type, even at the end of treatment.

The topic ranked lowest in importance was healthy lifestyle recommendations, with only one participant ranking it as most important. Healthy lifestyle actions, such as adequate sleep, exercise, and good nutrition (Klevos et al., 2017), are vital to health promotion and help decrease the likelihood of recurrence and secondary cancers. For example, research has shown that patients with breast cancer who gain weight during or after their treatment are at higher risk for breast cancer–related death (Hamer & Warner, 2017). Diets high in saturated fats, processed meats, red meats, and processed grains may also be associated with higher breast cancer mortality (Hamer & Warner, 2017) and should be avoided. Patients with cancer are motivated to seek information about diet and physical activity to improve their response to treatment and survival (Watson & Mckinstry, 2009), but there are few studies that examine diet and exercise behaviors in cancer survivors after the completion of their treatment. DeNysschen et al. (2014) conducted a secondary analysis of patients with breast cancer who participated in a randomized controlled trial of healthy lifestyle behaviors based on the 2012 guidelines set by the American Cancer Society (Runowicz et al., 2015). Findings suggested that during cancer treatment and directly after, participants were highly motivated, but six months later, most participants reverted to their prediagnosis behaviors (DeNysschen et al., 2014). With previous work showing that lifestyle modifications are key to maintaining good health in cancer survivors and the current study’s finding that most participants do not view information about lifestyle modification as very important, further research is needed for understanding how specific breast cancer populations prioritize different elements of their survivorship care.

The current study found that most patients are comfortable doing BSEs (n = 49), which is a drastic change from the provider-conducted breast examinations during in-person visits. It is important to identify which patients are uncomfortable doing breast examinations themselves and provide education on how to properly conduct a BSE. Patients who are uncomfortable doing BSEs may prefer in-person examinations versus telehealth, and may need more education on how to do a BSE.

More than half of the participants strongly agreed that they liked getting information from their providers through secure email and were comfortable doing survivorship visits through telehealth (19 preferred telephone visits, and 43 preferred video visits). Only five participants strongly preferred email visits instead of telephone or video. Participants overwhelmingly preferred having a dialog with their provider and felt video was more personable and lead to the participants trusting their provider more.

Limitations

This study had several limitations. Because this was a quality improvement project, the main objective was to evaluate the results of telehealth implementation at the institution, rather than to produce generalizable results. Although 62% of the surveys sent were completed, the overall sample size was small. It is possible that those who chose to not respond to the survey were less satisfied with telehealth than those who did. Two weeks into the start of data collection, the NP running one survivorship clinic retired; therefore, only five surveys were completed from that clinic. Survey questions regarding patient recall from their survivorship visit were designed to reflect the content of the institution’s SCP template, with no reliability or validity testing done. Fifty-nine patients reported English was their preferred language, which may limit the findings’ applicability in more diverse clinics. Cancer stage and exact age were not captured; these variables could affect satisfaction and recall. Recall errors could affect the accuracy of the information collected and the findings, depending on how soon after the participants completed the survey following their SCP visit. In addition, data were not collected for survivors completing their visits via telephone versus video, which may have made a difference in satisfaction and recall.

Implications for Research

The COVID-19 pandemic has shifted healthcare delivery from face-to-face visits to telehealth. Telehealth can provide safe and appropriate care to patients with cancer, while minimizing exposure to COVID-19 (Paterson et al., 2020). Once patients with cancer have started active treatment, many traditional in-person visits can be moved to telehealth, such as supportive care, symptom management, and triage support (Neeman et al., 2020). There are multiple published articles on the effectiveness of telehealth for cancer care, but few exist on patients’ satisfaction with telehealth in the survivorship setting. Further research on telehealth satisfaction should be done for the feasibility of telehealth to continue postpandemic.

More longitudinal studies are needed to examine how cancer survivorship can contribute to monitoring and encouraging healthy lifestyle behaviors. For example, conducting qualitative interviews with cancer survivors to identify why they do not value healthy lifestyle recommendations may help to identify promising new approaches to encourage cancer survivors to make healthy lifestyle choices.

More in-depth studies comparing patient satisfaction with telephone versus video appointments would be beneficial to changing the way SCPs are delivered to patients after completing treatment for breast cancer. Telehealth can potentially extend well beyond SCP visits and be applied to all patients with cancer undergoing on-and-off treatment. As the availability of telehealth services expands, studies should be performed to examine reluctance to use telehealth by providers and patients. Barriers to using telehealth, such as lack of proper equipment, mistrust, and lack of knowledge, should also be studied.

Implications for Nursing

Telehealth allows nurses to safely and conveniently provide education and survivorship care to cancer survivors during the COVID-19 pandemic. Patients have shown they are satisfied with their SCP telehealth visits, which could potentially continue well after the pandemic. With the emergence of the Coronavirus Aid, Relief, and Economic Security Act, or CARES Act, in March 2020, Medicaid and Medicare now include telehealth as a covered benefit and waive all co-pays (Koonin et al., 2020). Evidence has shown that telehealth in cancer care reduces travel burden, provides timely interventions to discuss side effects, initiates interventions, and provides education and support while keeping the patient safely at home (Paterson et al., 2020). As a result of this study’s findings, the authors’ institution now schedules all initial survivorship visits as a telehealth visit unless the patient requests an in-person visit.

NPs are in a strong position to promote healthy lifestyle behaviors through the survivorship program. Patients with breast cancer are monitored regularly post-treatment; therefore, telehealth survivorship care is an excellent platform to promote healthy behaviors after treatment. Results from this survey indicate that patients do not value information on healthy lifestyle recommendations, despite its importance. NPs can incorporate healthy lifestyle programs into the SCP and be on the forefront to encourage long-term adherence. NPs are also in the position to teach patients how to properly do a BSE, promoting self-monitoring behavior. 

Conclusion

This project examined the effects of telehealth on patient satisfaction and information recall for breast cancer survivors during COVID-19. It found high levels of patient satisfaction and satisfactory information recall via NP-led telehealth SCP visits. Telehealth may provide a long-lasting solution for patients with cancer and may be adopted long-term for cancer survivorship. High comfort rate for patients doing their own breast examinations may lead to more emphasis on BSEs rather than routine provider breast examinations. More research on NP-led survivorship programs via telehealth should be performed to support the role of the NP in cancer survivorship care. 

The authors gratefully acknowledge the work of Elaine Jang, NP, at Kaiser Dublin who performed telehealth survivorship care visits and referred her patients to this study.

About the Author(s)

Stacey L. Teicher, DNP, MSN, PNP, AOCNP^®, BSN, RN, is a nurse practitioner in the cancer survivorship clinic at Kaiser Permanente Northern California, both in San Jose, CA; Robin L. Whitney, PhD, RN, is an assistant professor in the Valley Foundation School of Nursing at San Jose State University and a clinician at Kaiser Permanente Northern California in San Jose, CA; and Raymond Liu, MD, is a medical oncologist at Kaiser Permanente in San Francisco, CA, and an adjunct investigator at the Division of Research at Kaiser Permanente Northern California in Oakland. No financial relationships to disclose. Teicher and Whitney contributed to the conceptualization and design and provided the analysis. Teicher completed the data collection and provided statistical support. All authors contributed to the manuscript preparation. Teicher can be reached at stacey.l.teicher@sjsu.edu, with copy to ONFEditor@ons.org. (Submitted May 2021. Accepted October 22, 2021.)