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Adapting and Validating a Tool to Guide People with Stage III Non-Small Cell Lung Cancer

Summary

Avalere used a human-centered design approach to adapt a patient-centered tool to help patients prepare to make treatment decisions with their clinicians.

Avalere adapted the Preparation for Shared Decision Making (PFSDM) tool for women with advanced breast cancer to the specific needs of NCSLC patients.

Background

In 2017, Avalere and FasterCures released version 1.0 of the Patient-Perspective Value Framework (PPVF), a value assessment methodology that outlines a set of key considerations that are important to patients when making care decisions. In discussing the usefulness of the PPVF during a focus group with cancer patients, patients expressed the need for a “checklist” to provide a roadmap for their care journeys. In response, Avalere employed a human-centered design process to develop and validate the PFSDM tool for patients with advanced breast cancer. This PFSDM tool helps patients to prepare to make a treatment decision and to communicate their preferences to their providers.

The Human-Centered Design Approach to Adaption

To gain an understanding of patient goals, needs, and care experiences, Avalere employed a human-centered design approach to adapt the validated PFSDM breast cancer tool to the Stage III NSCLC patient population. In particular, Avalere spoke to 14 patients diagnosed with Stage III NSCLC to better understand their care experiences and to elicit feedback on a draft prototype of the tool. Additionally, Avalere interviewed 8 Stage III NSCLC care team members, including 2 medical oncologists, a radiation oncologist, a nurse practitioner and 4 social workers. Based on feedback from patients and providers, Avalere finalized the PFSDM tool prototype.

Validation for Usability and Acceptability

Following development, Avalere conducted 20, one-on-one, semi-structured interviews with adults diagnosed with Stage III NSCLC. Interview questions were designed to elicit feedback on patients’ perceptions of the tool’s acceptability and usability, using 8 themes: understandability, clarity of information, amount of information, suitability for decision making, usefulness, relevance of information, value, and formatting.

After completing all 20 interviews, 2 Avalere staff members transcribed all interviews. Subsequently, 2 interviewers coded the results in NVivo, a qualitative data analysis software, mapping patient feedback to the 8 themes to evaluate the tool’s acceptability and usability.

Overall, the results of the validation study suggest that patients with Stage III NSCLC find the PFSDM tool acceptable and usable. Additionally, findings demonstrate that patients believe the tool will help them prepare to communicate their preferences with their provider when making decisions. Specifically, the majority of patients expressed that the tool would help them to prepare for decision making and that they wish they had this tool at diagnosis.

Notable Quotes from Patient Interviews
Graphic 1. Notable Quotes from Patient Interviews
Graphic 1. Notable Quotes from Patient Interviews

Differences Between the PFSDM Tool for Advanced Breast Cancer and Stage III NSCLC

Based on feedback received from patients and clinicians in the adaptation and validation process, Avalere made key changes to tailor the tool to the Stage III NSCLC patient population. These changes include:

  • Timeline to Expect in Care Planning: There are many differences in treatment options, timing, and the broader care timeline for patients with Stage III NSCLC when compared to patients with advanced breast cancer. As such, Avalere updated the timeline to reflect the care experiences of patients with Stage III NSCLC
  • New Resources Section: Patients expressed a need for a list of resources that they could use to find help throughout their care. In response, Avalere created a new section of the tool, “Resources that May Be Helpful for You,” that lists 15 organizations that offer financial assistance services, clinical trial information, support groups and education, and nutrition information and services
  • Formatting: Avalere increased font size, added color, and darkened font throughout the tool to make sure the tool was attractive and readable for the typical patient with Stage III NSCLC

What’s Next for the PSFDM Tool for Patients with Stage III NSCLC?

Results from the validation of the PFSDM tool will be presented at the National Comprehensive Cancer Network (NCCN) 2020 Annual Conference in March and published in the online version of the Journal of the National Comprehensive Cancer Network.

Additionally, in 2020, Avalere will pilot the PFSDM tool with a provider partner to evaluate the feasibility of implementing the tool in clinical practice. We also plan to continue to refine and test the PFSDM tool in other condition areas and audiences.

To learn more about the PFSDM tool or about opportunities for partnership around the PFSDM tool, connect with us.

Funding for this research was provided by AstraZeneca. Avalere retained full editorial control.

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