Optimizing Patient-Provider Communication in Patients With Amyloidosis Using a Virtual Platform

J Clin Pathways. 2022;8(7):36-41. doi:10.25270/jcp.2022.10.01

Received: November 2021; Accepted: August 2022

Amyloidosis is a group of rare diseases characterized by insoluble, extracellular protein (amyloid) deposition in various organs leading to organ dysfunction and failure. A total of 36 amyloidogenic proteins have been identified; 17 of these may go on to cause systemic amyloidosis.¹ The types of amyloidosis vary greatly in clinical presentation, phenotype, and treatment depending on the underlying precursor protein. Due to the multiple types of amyloidosis and the complexity of this multi-system disease, accurate diagnosis, including typing of the precursor protein, is imperative to offer correct treatments.^2,3

However, the health care climate does not always allow for the extensive evaluation these patients require. Lousada et al noted in an initial survey of 533 participants, 37% had no established diagnosis 1 year after the initial onset of symptoms.⁴ Current research proves allocation of physicians’ time is a significant concern in health care, where increasing time pressures in the health care system leads to reduced direct face time with patients during clinic visits.⁵ The limited time and attention is perceived to impact patients’ quality of care and provider professional satisfaction as a result.⁶

In a bid to improve clinical outcomes and experience for all members of the health care continuum, the use of virtual care has continued to grow. Moreover, the global impact of the COVID-19 pandemic has only bolstered the use of virtual care further. Using telehealth appointments and virtual software platforms, technology has been critical in allowing providers to continue to deliver high-quality equitable care, while reducing risk of exposure for both patients and providers. The pandemic has acted as a catalyst in leveraging and employing approachable technology to improve our clinical setting on a much larger scale.⁷

The Amyloidosis Appointment Companion (Companion) is a secure, user-friendly website application specifically for amyloidosis patients and their treating physicians. Companion was designed and created by Patient Discovery Solutions in conjunction with the Amyloidosis Research Consortium, a nonprofit organization focused on accelerating the development of novel treatments and developing tools to capture and better understand the experiences of patients living with amyloidosis. This application allows patients to self-report on any changes in their condition, personal goals of care, and challenges they may be facing during the management of their chronic disease. These patient-identified medical and nonmedical issues are then collated and shared with their health care providers ahead of any upcoming appointments.

The Boston University Amyloidosis Center evaluates and treats all types of amyloidosis in its multidisciplinary clinic at Boston Medical Center. To evaluate the feasibility of using Companion in a clinical setting, Boston University Amyloidosis Center integrated the health care application into the clinical workflow for amyloidosis patients with both telehealth and in-person appointments. Investigating the utility of the virtual platform and its impact on communication of real-world needs, goals, and preferences was measured via patient engagement and provider satisfaction.

Patient Population

All patients with amyloidosis at the Boston University Amyloidosis Center were invited to use Companion over the 16-month period between January 2020 and May 2021. If applicable, caregivers were also invited to use Companion on the patient’s behalf. No additional inclusion or exclusion criteria were used.

Amyloidosis Appointment Companion Application

Companion guides the patient through a series of personalized, interactive questions; the answers of which are collated to produce a PDF document for both patient and provider. The interactive survey covers a range of appointment-related topics, including areas focused on the patient’s goals of care, treatment satisfaction and preferences, current quality of life, and any specific discussion topics the patient would like to address. To measure patient-reported quality of life, Companion was designed to include activities adapted from the 5-level EQ-5D instrument.

The majority of patients, both new and returning to the Amyloidosis Center at Boston University, come as consults often seen on an annual basis. To support this, the application also covered more administrative appointment topics, allowing patients to report and reconcile additional medications; vital signs entry including weight, blood pressure, and heart rate readings; and laboratory results. When Boston University Amyloidosis Center began utilizing virtual appointments in response to the COVID-19 pandemic, additional telehealth-related features were included in Companion. Patients were provided with additional education on the new appointment setup and were prompted to prepare for their upcoming virtual visit (eg, ensuring patients had access to a device with a working video camera and microphone, a good internet connection, and the necessary application installed ready for use).

Boston University Amyloidosis Center Clinical Workflow

Clinicians at the Boston University Amyloidosis Center were able to integrate Companion into the appointment scheduling workflow and use of the application was treated as an aspect of the team’s standard of care approach. The care team introduced the application as part of their appointment reminder letter, sent to patients 6 weeks prior to their appointment. The letter included a link for the patients to access Companion and sign up for themselves. Prior to upcoming appointments, patients were encouraged to use Companion in their own time to prepare for their visit and were able to amend or update their Companion at any time during the 6-week period. Once completed, a patient’s one-page summary PDF was securely emailed to the center and distributed to the three providers responsible for seeing all amyloidosis patients. These documents were entered into their physical charts and findings summarized in their notes for other members of the multidisciplinary team at Boston University Amyloidosis Center. Providers were then able to prepare and select information in the patient’s summary as it pertains to their specialty.

Analysis of Provider Satisfaction

A survey was distributed to the Hematologist-Oncologist, whose role includes Director of the Center, and the two Advanced Practice Providers (APPs). The two APPs were responsible for seeing every visiting patient and were involved in incorporating all Companion information into patients’ clinic notes for other providers. The survey used the Likert rating scale to measure acceptability, feasibility, and impact of Companion during their clinic visits; responses were collected from all three providers.

Analysis of Patient Engagement

Companion activities and questions were created to include preconfigured answers for the patient to select, as well as open-text fields to allow patients to capture specific and personal content. Patients’ free-form answers were categorized, and all responses were aggregated across patients and analyzed descriptively. Figures were produced using Microsoft Excel, Microsoft 365 (Microsoft, Redmond, WA).

Demographics

A total of 287 users signed up to the application between January 2020 and May 2021, 83% of whom completed their Companion at least once (n = 238). For the purpose of this study, all subsequent analyses focused on users who had at least one complete Companion. After the addition of telehealth-specific features in April 2020, 23% of patients (n = 51) had at least one telehealth appointment. Characteristics of the study population using the application comprised primarily of patients (n = 228) as opposed to their caregivers. Of the 238 users, median (interquartile range [IQR]) age was 69 (62–75) years. Median (IQR) time since symptom onset was 5 (2–10) years with median (IQR) time since diagnosis at 4 (2–7) years. The patient population covered a range of disease subtypes (Figure 1). In all, 21% of patients confirmed they had an undistinguished disease subtype, including “Other” (n = 11) and “Type hasn’t been confirmed” (n = 40).

Patient Utilization

Patients were able to access Companion via their desktop, mobile, or tablet device. Distinct visits to the platform were defined by both initial signup and unique return logins. Device type used by patients shows 69% of total distinct visits (n = 536) were through desktop, 27% (n = 209) were mobile, and 5% (n = 36) were tablet. Over the 16-month time period, patients returned to Companion, where the median (IQR) login was three (2–5.25) per user.

Patient Engagement

Each patient spent an average 19 minutes with each use of the application (mean minutes per login, SD = 19.06±15.44). The Table describes the average time spent on each distinct group of activities presented in the application’s interactive survey.

Patient-Reported Data

As part of their interactive survey, patients prioritized a list of topics they wished to discuss with their care team (Figure 2). Across the patient cohort, the most common topics included “Understanding my treatment options” (n = 115, 48%), “Learning more about my disease” (n = 105, 44%), “I’m concerned that my disease is progressing” (n = 88, 37%), and “Being able to perform my daily activities” (n = 77, 32%).

When reporting on their quality of life, 58% of patients reported slight to moderate levels of pain or discomfort (n = 137), 55% reported slight to moderate levels of anxiety or depression (n = 130), 46% reported slight to moderate problems performing their usual activities (n = 110), and 42% reported slight to moderate problems with mobility (n = 99), whereas only 16% reported slight to moderate problems caring for themselves (n = 38).

Patients were provided with an open-text field to capture their goals of care. In all, 38% of patients reported goals associated with their daily activities and maintaining their quality of life (n = 91); 32% reported goals linked to their symptoms and side effects (n = 76). Analysis also showed 20% of patients wished to understand available treatment options (n = 47) and 7% wished to learn more about their disease (n = 17) (Figure 3). Short-term or isolated goals, such as decreasing specific symptoms or discussing any new treatment options, were listed by 63% of patients (n = 149).

Provider Satisfaction

In response to the provider survey, all providers strongly agreed that the application helped facilitate better communication between themselves and patients during clinic visits. All surveyed providers also strongly agreed that they would recommend the use of Companion to their patients prior to clinic visits, if available. In addition, providers all agreed the application saved time during appointments, specifically by expediting medication reconciliation, and helped patients to prioritize and organize their goals and overall agenda for their clinic visits.

Patients with amyloidosis and other hematologic malignancies experience a distinct set of complexities, often leaving patients feeling overwhelmed by their treatment, symptoms, and management of care. The symptomatic impact of amyloidosis on a patient’s quality of life includes reduced physical and social functioning, as well as patient-reported frustration, anxiety, and depression.⁸ The combination of challenges faced by patients with amyloidosis may be exacerbated by identified barriers in patient-centered communication in the hematologic malignancy setting.⁹ LeBlanc et al reported that these barriers include insufficient information exchange, treatment goal misalignment, and discordant role preferences in treatment decision-making. The use of a digital advocate application, such as Companion, could provide both patient and provider with the opportunity to better communicate the unique challenges that surround this group of complex diseases, allowing for improved collaboration and shared decision-making. Real-world use of the Companion application at Boston University Amyloidosis Center has revealed key benefits for both amyloidosis patients and their providers.

Once invited to use the Companion application, patients could spend as much time as required to complete all activities as part of the interactive survey. With a user-friendly, concise series of activities, patients were able to highlight any concerns, questions, and goals they wished to discuss at upcoming appointments. Results suggest patients were able to consolidate this information at ease, spending typically 19 minutes on the application at any one time.

Allocation of time during patients’ visits to primary care physicians has shown topics are often competing for discussion, with only 5 minutes spent on even a major topic in a visit.¹⁰ These time constraints act as a systemic factor that affects the provider-patient relationship as there is less time to explain reasoning, understand one another, and engender the patient’s trust.¹¹ Previous studies, including a meta-analysis, indicate patients reported improved health outcomes including symptom control, higher quality of life, and increased treatment satisfaction when they had higher trust in their health care providers.¹² By preparing discussion topics and providing patients with an opportunity to communicate specific goals of care, treatment queries, or areas of concern ahead of time, Companion allowed both parties to understand where to focus their limited time during an appointment. Appointment efficiency was further enhanced by patients answering Companion activities specifically focused on more administrative topics. Completing these activities—including vitals entry, recent laboratory results, and medication reconciliation—outside the clinic visit minimized valuable patient-clinician time spent on administrative tasks.

Beyond patient engagement with the application, patient-reported data captured via Companion provided valuable insights into the distinct set of challenges and preferences experienced by patients with rare diseases, such as amyloidosis. An aggregated view of common discussion topics, goals of care, and quality of life demonstrates both the symptomatic impact of this condition along with a need to improve information exchange. Data collected from this population suggests patients are typically interested in addressing and discussing potential treatment options, learning more about their disease and its progression, and maintaining their quality of life.

Results showed that all providers at Boston University Amyloidosis Center strongly agreed that the use of Companion helped facilitate better communication and increased efficacy, allowing providers more time to focus on a patient’s communicated topics and goals. Survey results also demonstrated all providers strongly agreed they would recommend the use of Companion prior to clinic visits with their patients if it were available. This notable level of acceptance within the clinical setting demonstrates the clear benefit this application can have in strengthening the collaboration between patient and provider.

Improving on patient-centered communication has only been highlighted as a critical aspect of care in the outbreak of COVID-19. The catalytic effect of the pandemic has created a dynamic where the utility of telehealth appointments and software applications has become critical. For patients using Companion, the application offered a chance to prepare for their upcoming telehealth appointment while continuing to communicate their own specific questions, needs, or concerns.

The size of the clinical setting used in this investigation, a large amyloidosis clinic, provided a relatively large population of engaged patients for a rare disease. In addition, the center’s approach to multidisciplinary care meant patients’ summary PDFs could be shared across disciplines; between nurse practitioners, registered nurses, and clinicians; and across multiple specialties. However, this study has potential limitations. Current utilization of Companion still required manual data entry of patient responses by the APPs into the EMR. Future use of the application as standard of care will include integration with the EMR to allow direct transfer of data and ultimately minimize provider burden. The application was only evaluated within a single clinic. The chosen institution serves as an international referral center for the treatment and research of amyloidosis. As a result, this may not be generalizable to other amyloidosis centers or all patient populations.

The inherent shortcomings of any single-center study are, however, improved by the sample size in this implementation (n = 238). Further investigation across treatment centers, or even utilizing the Companion model to serve other disease populations, could help identify translatable benefits of the application. In addition, observing a patient population longitudinally will aid in a deeper understanding of ongoing utility and feasibility of the application, as well as continuing to understand the real-world needs, goals, and preferences of that given population.

The utilization of Companion optimized patient-provider communication and ultimately patient care in an amyloidosis clinic. A significantly high percentage of patients completed their Companion and providers at the Boston University Amyloidosis Center reported the application facilitated better communication. Proven feasibility and acceptability indicate the benefit this application can make in understanding a host of individual patient needs, including their own values, expectations of treatment, and goals of care. Capturing these needs across this rare disease population also provided an invaluable understanding of patients’ perception and management of care. The patient-reported data shared with clinicians directly impacted clinic visits and ultimately improved collaboration and patient-centered communication. More broadly, Companion and its design could be utilized across other disease specialties, in an effort to communicate the specific needs, goals, and preferences between patient populations and their providers.

Authors: Arabella Sykes, BSc¹; Sabrina Rebello, MPH; Isabelle Lousada, MA; Kristen Hsu, BSc; Jason Shore, MBA¹; Vaishali Sanchorawala, MD; Lisa Mendelson, MSN¹; Adam Sodowick, BA¹

Address Correspondence to: Arabella Sykes, BSc

Patient Discovery Solutions

800 Boylston Street 16th FL PMB 100

Boston, MA 02119

Email: bella@patientdiscovery.com

Affiliations: ¹Patient Discovery Solutions, Boston, MA

Disclosures: Arabella Sykes, Jason Shore, and Adam Sodowick are employees and own stock with Patient Discovery Solutions. Lisa Mendelson is an advisor for Patient Discovery Solutions. Vaishali Sanchorawala is an advisory board member for AbbVie, Caelum, Janssen, Proclara, Protego, Regeneron; has received research grants from Celgene, Karyopharm, Millennium-Takeda, Oncopeptide, Prothena, Sorrento; and is a consultant for Pfizer. All other authors report no relevant financial relationships.