Abstract
Introduction: The growing emphasis on patient-centered care, along with the rise of open-access publications and online platforms, has increased patient demand for education about their medical conditions. In this context, patient-friendly language summaries of fundamental cancer clinical trials may be valuable resources for patients to learn more about their disease and treatment options.
Methods: We surveyed patients diagnosed with non-small cell lung cancer (NSCLC) to assess the availability and need for easy-to-understand resources related to treatment decision-making and side effect profiles. Patients were also provided an example patient-friendly language summary and asked for feedback.
Results: One hundred fourteen patients responded to the survey; most were female (85.1%) with a median age of 60 years. Most were treated at academic medical centers (57.9%) and had stage 4 disease (74.6%) at the time of the survey. At diagnosis, 94.7% searched online for information, and only 24.6% reported receiving patient-friendly resources with information from their oncology provider. While most participants (92.1%) reported that their oncology provider explained the treatment regimen in an understandable way, only 51.8% recalled receiving an explanation of the data supporting the treatment plan selection. Additionally, only 66.7% remembered discussing the management of potential toxicities. Nearly all respondents (94.7%) found the patient-friendly language summary helpful, with 91.2% noting it enhanced their understanding of the treatment goal and 88.6% reporting improved retention of the most common potential side effects.
Conclusions: Most patients with lung cancer reported a lack of patient-friendly resources. Most patients, caregivers, and family members utilized online resources to learn more about their disease and treatments at the time of diagnosis. Most participants reported interest in having their oncology provider explaining the data supporting the recommended treatment plan. Patient-friendly language summaries of fundamental cancer clinical trials could effectively address this need, as demonstrated by the positive patient feedback in this study. Larger prospective studies are needed to validate these findings.
DOI
https://doi.org/10.52519/ACEQI.25.1.2.a3
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Recommended Citation
Brazel D, Desai A, Abu Rous F, Feldman J, Singhi E. Exploring Patient Perspectives on the Availability and Demand for Patient-Friendly Resources in Non-Small Cell Lung Cancer. Advances in Cancer Education and Quality Improvement. 2025; 1(2). doi: https://doi.org/10.52519/ACEQI.25.1.2.a3.
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