A Sustainable Virtual Model for Comprehensive Childhood Cancer Survivorship Care

Life Years Saved

Most people diagnosed with childhood cancer today will survive the disease but remain vulnerable to long-term therapy-related health problems with a risk of early death and morbidity (Gibson & Robison, 2015; Hudson et al., 2021). This risk has been shown to be as high as 18% mortality at 30 years, which is 7 times higher than the general population (Armstrong et al., 2009). Cardiac complications and second malignancies are primary concerns (Leerink et al., 2020). Evidence-based screening has been shown to improve outcomes in survivorship (Ehrhardt et al., 2020; Landier et al., 2018; Yeh et al., 2020). Survivors who regularly participate in follow-up care, including input from pediatric oncology specialists, have better health and educational outcomes. Thus, lifelong survivorship care with late effects screening and education is imperative (Gramatges et al., 2018; Signorelli et al., 2017).

Psychosocial Care/Quality of Life

Cancer therapy has long-term psychosocial impacts (Wiener et al., 2015). Longevity and well-being are supported when mental health sequelae of childhood cancer are addressed (Lown et al., 2015). The 2015 publication Standards for the Psychosocial Care of Children With Cancer and Their Families provides a strong evidence-based recommendation that childhood cancer survivors (CCSs) receive annual screening in the areas of education, vocation, social function, relationship difficulties, risky behaviors, and mental health challenges (Wiener et al., 2015). The success of telehealth support of psychosocial needs in other populations has been demonstrated (McLoone et al., 2020; Phelan et al., 2023), but a gap in the literature exists regarding virtual psychosocial care in the context of interdisciplinary survivorship care.

Access to Care

Poor outcomes related to access to survivorship care include barriers, such as transportation and distance to the clinic, major life changes, lower socioeconomic status, lower educational level, lack of insurance coverage, work or school conflicts, and lack of time (Gramatges et al., 2018). Financial toxicity is also experienced both during therapy and for years afterward (Kelada et al., 2020). The transition from pediatrics to adult care may result in poor communication between providers, gaps in care, and decreased awareness and access to screening (Casillas et al., 2015; Hudson et al., 2021). Follow-up care in a cancer survivorship clinic may address some of these barriers, improve adherence to long-term follow-up guidelines, and reduce the need for emergency medical care (Gramatges et al., 2018).

Virtual Models

Postpandemic, a substantial shift took place in the number of survivorship-related consultations through alternative methods such as virtual visits, telephone calls, and email. Capacity, access to care, and proximity to an academic center were factors in the shift (Phelan et al., 2023; van den Oever et al., 2022). Other distance-delivered models in CCS have included support groups, cognitive behavioral therapy, skills training with an interventionist, family group sessions, and nurse-led telehealth visits (McLoone et al., 2020). High provider and patient satisfaction with virtual screening has been reported, including the desire for virtual visits to remain an ongoing option (Kenney et al., 2021; Pham et al., 2020; van den Oever et al., 2022). Technology for virtual visits has been reported to increase health system capacity and improve access to care, especially for survivors living in remote areas (Pham et al., 2020; van den Oever et al., 2022).

Limitations of virtual visits include lack of physical examination, technology disparities, difficulty organizing off-site testing, and inconsistent training (Kenney et al., 2021; Pham et al., 2020; van den Oever et al., 2022). In addition, the impact of social determinants of health, how best to incorporate cultural compassion, and privacy/security concerns need further investigation (Pham et al., 2020). Other knowledge gaps exist regarding access for patients with low socioeconomic status and outcomes of virtual survivorship care (van den Oever et al., 2022).

When the COVID-19 pandemic halted in-person care, programs pivoted to find creative solutions to keep CCSs engaged and meet their needs. Many institutions found a way to transition to virtual care for the medical provider visit, but the literature is less clear about how psychosocial care was addressed. Given the complex needs of CCS, bundling care into an interdisciplinary clinic is common, but challenging when shifting to the virtual world. The infrastructure for managing a patient-friendly, complex, interdisciplinary virtual clinic did not exist. Building one required a process that could accomplish the following: successful assessment and survivorship education in a virtual setting; a method to keep traffic flowing with short wait times between providers; real-time communication between team members during a fast-paced interdisciplinary virtual clinic; a system that considered the needs of collaborators and included user-friendly technology; and a patient-centered experience. After an extensive literature search, we did not find a comparable program, so we report here the process to create and sustain virtual survivorship clinics. Our aim is to provide an example for institutions which may be considering the addition of a virtual option to their current model.

Context

As the only public academic health center in a large rural state, our pediatric hematology/oncology program has a wide catchment area, including a three-state region. Our survivorship program monitors survivors of childhood/adolescent/young adult cancer or bone marrow transplant who completed treatment at least 2 years prior. Limited adult transition services exist, so patients of all ages are followed in our clinic. Prior to the COVID-19 pandemic, we had two in-person clinic types: (a) weekly at our main hospital campus and (b) monthly at an outreach clinic approximately 60 miles south of our main campus. Team members included physician or advanced practice provider, neuropsychologist, social worker, educational specialist/teacher, dentist, registered nurse, dietician, and research associate. Each patient sees a provider in each applicable discipline to optimize anticipatory guidance, with visits adjusted according to patient needs. We used an iterative process to develop and implement virtual childhood cancer survivorship care (Figure 1).

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Figure 1

Implementation Process

Virtual Survivorship Care Elements

To design this new clinic model, the team identified which disciplines were needed for each patient, often 5–6 team members per patient. A team member in the appropriate specialty was slotted time with the patient. We deliberately prioritized simplicity for patients by having them log into one virtual visit. The providers (from remote work locations) rotated through the virtual room while the patient stayed in the same encounter for over 3–4 hr (Table 1).

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Table 1

Elements of a Survivorship Virtual Clinic Model

Preparation	Clinic visit	Follow-up
A month prior to the visit, an extensive chart review and creation (or update) of treatment summary and current problem list by an experienced pediatric hematology oncology survivorship nurse.	Interval history including assessment of physical complaints, psychosocial health, insurance needs, transition needs, dental health, neurocognitive symptoms, and academic functioning.	Provide an electronic copy of screening plan to patient and primary care provider.
Screening tests recommended by the current evidence-based guidelines were identified, and orders placed by nurse practitioner.	Preventative care needs, such as immunization status, nutrition, and exercise are discussed.	A detailed letter to primary care provider of findings and follow-up plan.
Recommendations communicated to the family and attempts made to have the labs/tests done either at our facility or a local facility ahead of the visit.	A limited physical examination and a plan for labs/tests or review of results if completed prior to the visit.	Any delayed test results retrieved, reviewed, and communicated with patient/family.
Team review meeting the day of the clinic visit, including treatment summary, possible late effects, screening test results, and known health concerns.	Late effects education and review of evidence-based screening plan.	Referrals to subspecialists as appropriate and survivorship follow-up interval determined.
Confirmation of the treatment summary with the patient/family with revisions as needed.	If applicable, a research associate provides specific information about ongoing clinical trials or results.

We purposefully left the frequency and type of visits open. As COVID-19 restrictions lessened, we began to assess the frequency of virtual visits versus in-person visits on a case-by-case basis. Although we have received positive verbal patient feedback regarding this model, we have not yet determined the optimal interval of virtual visits. We plan to collect outcomes and patient experience data for evidence to inform any standard of virtual clinic frequency.

Collaborators

To launch a virtual interdisciplinary clinic, support from various collaborators was necessary. The technology needed for clinical requirements was discussed with the information technology group. Electronic health record (EHR) procedures for hosting and documenting telehealth visits were established. We sought support from the electronic medical record patient portal (MyChart) team and the telehealth department to understand the patient experience. Additionally, we consulted with the billing and insurance departments.

Operationally, it was imperative to have input from the clinic scheduling team and medical assistants. The schedulers created templates for the virtual interdisciplinary clinics, and medical assistants completed the previsit check-in process. We ensured that we provided high-quality language interpretation for patients and families with limited English proficiency. We worked with our institution's language services department to learn the process for adding a third-party interpreter to the virtual visit. Finally, we consulted with our institution's legal department to ensure that our plan for virtual interdisciplinary clinics conformed to institutional and privacy policies.

Communication and Visit Planning

Accurate and real-time communication was a necessity to keep our virtual interdisciplinary clinic running smoothly. Our preclinic team meeting was accomplished via an online platform (Webex). During the visit, we used Microsoft Teams software to track the providers (virtual whiteboard) and real-time communication among team members during the clinic (chat function). The whiteboard entries documented the in/out times and the Zoom link with the designated time (Figure 2). All communication during virtual clinics was saved for future access.

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Figure 2

Example Clinic Flow

To ensure patient privacy, we used a two-step authentication (Duo Mobile) for all devices not connected to the hospital network. MyChart and Zoom visits through EHR are encrypted to meet Health Insurance Portability and Accountability Act (HIPAA) regulations and safeguard protected health information. Microsoft Teams is both HIPAA and Family Education Rights and Privacy Act compliant. Through the utilization of a private channel and chat, we limited access to protected health information to only those staff members involved in the clinic.

Clinic Flow

The survivorship program coordinator or clinic medical assistant called the patient 15 min prior to the visit to make sure their technology was working and orient them to the planned flow of the visit. In the EHR, the virtual visit tab included a questionnaire and medication list the patient was asked to review prior to their visit. The patient then launched a virtual visit through MyChart, which connects to Zoom technology. The EHR notification turned green when the patient arrived, and the first provider launched the Zoom virtual visit through the patient's EHR encounter. Then the Zoom meeting link was shared in the Microsoft Teams timeslot planner. We used color-coded web-based spreadsheets, accessible to all team members.

Evaluation

In assessing this model, we defined feasibility as whether or not the model could accomplish virtual, interdisciplinary survivorship care and was reproducible over time. We measured this by comparing the total number of virtual visits accomplished per year to the prepandemic baseline of 205 in-person visits per year. We defined reproducibility by the total number of completed visits. To evaluate process change outcomes, we utilized consensus of efficiency, difficulties, and successes through informal feedback from staff, providers, and patients. Adjustments were made accordingly in real time. To determine long-term potential, we evaluated the number of successful visits and an informal survey of provider experience. Three years into the process change, eight providers who had previously participated in the clinic (excluding the primary authors of this article) were surveyed utilizing a Likert scale. No validated tool was found that fit our circumstances, so an informal questionnaire was developed.

Limitations

Limitations of our process change assessment include a lack of rigor in our evaluation tools. Although the survey lacked formal psychometric data such as reliability and validity measures, the findings provide insights for future improvements and research. Thus far we have only used attended visits as a surrogate of success. We have not yet performed a formal survey of patient experience or outcomes.

Limitations of the virtual model included abbreviated physical and dental examinations, limited ability to assess nonverbal cues, lack of personal connection, and privacy concerns in some patients’ homes. Though we did ask, we could not always see who else was in the room or within earshot. System challenges included unstable internet connections at the patient’s location, distracted patients completing the visit while running errands in the car, and noises/distractions in the home environment.

Next Steps

Future steps include study of how this model affects access to care, quality of clinical care, clinical outcomes, and satisfaction of patients and providers. Understanding the patient experience with rigorous outcome measures will be key to informing the next steps. Ultimately, we aim to one day determine how the model of virtual visits saves life years through adherence to evidence-based childhood cancer survivorship guidelines.