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Guiding Patients on Care Journeys

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In a recent webinar, experts from Avalere and the National Patient Advocate Foundation discussed the value of shared decision-making (SDM) and preparing patients and families for navigating their care journeys.

The webinar featured:

  • Josh Seidman, Managing Director, Center for Healthcare Transformation
  • Courtney Ramus, Consultant I, Center for Healthcare Transformation
  • Gwen Darien, Executive Vice President, Patient Advocacy and Engagement, Patient Advocate Foundation

Topics included:

  • The diversity of patients and caregivers, and approaches to addressing them
  • SDM trends
  • The “Development Process for Preparation for Shared Decision-Making” (PFSDM) tool
  • The intended audience and uses of PFSDM tool
  • The value of tools and resources like the PFSDM tool among patients

Process of PFSDM Tool Development and Testing

In 2016, Avalere launched the Patient-Perspective Value Framework with FasterCures to address current gaps in the design of value frameworks. In gathering feedback for the initial framework, cancer patients expressed the need for a tool to help prepare for treatment-related decision-making during a focus group. It became clear in these discussions that patients needed a roadmap to help guide them on their care management journeys. Avalere then took a human-centered design approach to create the PFSDM tool in advanced breast cancer. To develop the tool, Avalere first held a group interview in partnership with CancerCare to identify patient preferences related to decision-making and develop sections of the tool. Next, Avalere held a series of one-on-one in-depth interviews with patients diagnosed with advanced breast cancer, oncologists, and social workers to further develop the tool. Following interviews, Avalere finalized the PFSDM tool prototype. Lastly, Avalere validated the tool for acceptability and usability with 30 additional women diagnosed with advanced breast cancer.

Overview, Aims, and Future Uses of the PFDSM Tool

The tool is intended to be shared with patients shortly after diagnosis, ahead of their first treatment-planning visit. This allows patients to better prepare for visits during which they will discuss preferences and treatment options with their oncologist. The tool aims to prepare patients for treatment planning visits shortly after diagnosis, increase consideration of patient preferences during clinical decision-making, and help patients and families better understand and prepare for their care experiences. The tool has 5 sections:

  • What to expect: Intended to support advanced breast cancer patients understand the broad phases of their care experience and key decision points
  • Personal goals: Intended to support patients in thinking through their personal preferences (goals, expectations, needs) ahead of their treatment planning visits
  • Questions: Intended to support patients in sharing their care-related preferences with their care teams ahead of their treatment planning visits
  • Checklist: Intended to guide patient–clinician conversations during the treatment planning visit based on the patient and family’s preferences
  • Resources: Intended to provide patients with national resources to access financial assistance, support groups, nutrition services, and clinical trial information

In 2019, Avalere adapted and validated the PFSDM tool for Stage III non-small-cell lung cancer (NSCLC) using a similar human-centered design approach. Avalere will be testing the feasibility of implementing the PFSDM tool for Stage III NSCLC into the clinical workflow later this year. Notably, the adapted tool incorporates changes to make the content more clinically relevant for Stage III NSCLC patients, such as a tailored timeline of what to expect in their care experience.

The Value of Tools and Resources for Patients

Gwen Darien provided insights based on both her role leading advocacy efforts for the National Patient Advocate Foundation and her own experience as a 3-time cancer survivor. She highlighted the challenges of preparing for what might happen following a cancer diagnosis. The PFSDM tool has the potential to benefit patients like those served by the Patient Advocate Foundation, whose mission is to help cancer patients address barriers to care including costs, coverage, and transportation. Tools like the PFSDM help patients understand different possible treatment outcomes, because—as Gwen Darien put it—“during cancer treatment we know what should happen but not always what might happen.”

Accounting for the Whole Patient in Treatment Planning

The webinar also addressed the importance of taking the whole patient—including financial status and upcoming events—into consideration when planning for treatment. For example, patients often face challenges in finding reliable transportation and covering the cost of parking during treatment.

Panelists also discussed how the COVID-19 pandemic is affecting patients. In oncology, treatment may be delayed or administered at home and patients may be attending treatment visits alone due to policies banning visitors from entering treatment facilities. Patients are also currently facing the challenge of being immuno-compromised while also socially isolated.

Additional Considerations

The panelists also fielded questions from attendees. They confirmed that Avalere validated the PFSDM tools among a diverse group of patients with advanced breast cancer and Stage III NSCLC. The panelists also discussed adapting the tool for additional condition areas, such as chronic diseases, and the potential long-term impacts resulting from recent changes in care delivery.

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