PATIENT AND CAREGIVER PERSPECTIVES AND EXPECTATIONS OF PLAIN LANGUAGE SUMMARIES (PLS)
Author(s)
Emily Ruzich, PhD1, Beatriz Antolin Fontes, PhD2, Montserrat Casamayor, PhD3, Charlotte Carey, MPhil4;
1IQVIA, Patient Centered Solutions, Boston, MA, USA, 2IQVIA, Patient Centered Solutions, Basel, Switzerland, 3IQVIA, Patient Centered Solutions, Barcelona, Spain, 4IQVIA, Patient Centered Solutions, Reading, United Kingdom
1IQVIA, Patient Centered Solutions, Boston, MA, USA, 2IQVIA, Patient Centered Solutions, Basel, Switzerland, 3IQVIA, Patient Centered Solutions, Barcelona, Spain, 4IQVIA, Patient Centered Solutions, Reading, United Kingdom
OBJECTIVES: There is growing emphasis on making scientific research and clinical trial results more accessible to patients and lay audiences. This study assessed the awareness, preferences, and expectations of patients and caregivers regarding plain language summaries (PLS) of clinical and real-world studies and explored how to better design and deliver them.
METHODS: Patients and caregivers aged 18+ living in the US and UK were recruited via social media to complete an online survey.
RESULTS: A total of 51 participants (41 patients, 10 caregivers) from the UK (n=21) and US (n=30) completed the survey in early 2025. The sample was diverse in age, gender, race/ethnicity, education, income, and medical conditions. Most participants knew that medical research results are published in journals (n=37; 73%) and that PLS are written for the public (n=33; 65%). A majority were interested in reading PLS (n=44; 86%) and had already searched online for study results (n=36; 71%). Respondents would use PLS to better understand their condition, support discussions with doctors/family, and guide lifestyle changes. Desired content included trial results, quality of life impacts, treatment benefits vs. risks, and trial population characteristics. Many expected a doctor or scientist to lead summary development. Of those who searched online (n=36), half found information easy to locate (n=18; 50%), while 19% (n=7) found it difficult. PLS on medical journal and pharmaceutical company websites were hardest to understand; patient association websites were easiest. Barriers for poor understanding included technical language, excessively lengthy text, and lack of visuals. Preferred formats were written text (n=40; 78%), pictures/graphs (n=37; 73%), and short videos (n=24; 47%). Most found PLS moderately (n=18; 35%) or very useful (n=12; 23.5%).
CONCLUSIONS: Patients and caregivers actively seek treatment information. To improve PLS, their perspectives must be integrated into development, ensuring content is accessible, useful, and supports informed decision-making.
METHODS: Patients and caregivers aged 18+ living in the US and UK were recruited via social media to complete an online survey.
RESULTS: A total of 51 participants (41 patients, 10 caregivers) from the UK (n=21) and US (n=30) completed the survey in early 2025. The sample was diverse in age, gender, race/ethnicity, education, income, and medical conditions. Most participants knew that medical research results are published in journals (n=37; 73%) and that PLS are written for the public (n=33; 65%). A majority were interested in reading PLS (n=44; 86%) and had already searched online for study results (n=36; 71%). Respondents would use PLS to better understand their condition, support discussions with doctors/family, and guide lifestyle changes. Desired content included trial results, quality of life impacts, treatment benefits vs. risks, and trial population characteristics. Many expected a doctor or scientist to lead summary development. Of those who searched online (n=36), half found information easy to locate (n=18; 50%), while 19% (n=7) found it difficult. PLS on medical journal and pharmaceutical company websites were hardest to understand; patient association websites were easiest. Barriers for poor understanding included technical language, excessively lengthy text, and lack of visuals. Preferred formats were written text (n=40; 78%), pictures/graphs (n=37; 73%), and short videos (n=24; 47%). Most found PLS moderately (n=18; 35%) or very useful (n=12; 23.5%).
CONCLUSIONS: Patients and caregivers actively seek treatment information. To improve PLS, their perspectives must be integrated into development, ensuring content is accessible, useful, and supports informed decision-making.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR114
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
No Additional Disease & Conditions/Specialized Treatment Areas