If you have ever filled out a questionnaire asking how well you slept last week, how often you felt anxious or whether pain kept you from your daily activities, you have experience with one of the most important tools used in cancer research. These questionnaires capture parts of the cancer experience that no blood test or scan can measure, from fatigue and mood to overall quality of life, which makes them central to understanding whether a new treatment or support program truly helps people feel better.
Researchers call these tools patient-reported outcomes (PROs) when patients answer the questions themselves. When family members or other caregivers fill them out, either about their own well-being or about the person they care for, the questionnaires are known as caregiver-reported outcomes (CROs). Earlier studies have shown that doctors face several obstacles when using these questionnaires in the clinic, including limited time and funding for collecting response, but much less is known about the challenges scientists encounter when using them in research.
“Prior studies have looked at barriers to using PROs and CROs in clinical care but PROs/CROs are also important for cancer research,” said Dr. Salene Jones, an associate professor in the Public Health Sciences Division at Fred Hutch Cancer Center and the study’s first author. “This work identified barriers to including PROs and CROs in cancer research.”
In this new study, published in the Journal of Cancer Education, Jones and colleagues from several institutions across the country set out to learn how cancer researchers use these questionnaires, what gets in their way and how educational resources could help them use these tools more effectively and equitably.
To answer these questions, the team surveyed members of the Cancer Special Interest Group of the Society of Behavioral Medicine, a professional organization whose members often study the emotional, social and behavioral sides of cancer for patients and their families. In 2023, 49 researchers completed an anonymous online survey about how familiar they were with these questionnaires, how often they used them, which groups of people they considered when choosing them, how they collected responses and which barriers they faced. Most respondents held doctoral degrees, with many working at the professor level.
The results showed that researchers were far more comfortable with patient questionnaires than with caregiver versions, since 69% said they frequently used PROs while only 24% frequently used CROs. Most participants understood the basic qualities that make a questionnaire trustworthy, such as reliability, which reflects how consistent its results are, and validity, which reflects whether it measures what it claims to measure. Far fewer were familiar with more advanced concepts like bias, which describes whether a questionnaire works the same way across different groups of people.
Many researchers said they took language and education level into account when choosing questionnaires, with 70% considering each, while 61% considered race and ethnicity. Characteristics such as income, immigration status, sexual orientation and neurodiversity were considered much less often, even though some of these factors can shape whether people are able to complete a survey online or on a smartphone.
Most researchers collected responses through websites or on paper, while fewer relied on smartphone apps or automated phone systems, with not a single participant reporting the use of text messages. The most common barriers, each reported by about a quarter of respondents, were the time questionnaires take, which can burden both the study participants who complete them and the researchers who administer them, and the licensing fees researchers must pay to use many questionnaires. Researchers also noted that some study participants were uncomfortable with technology or lacked reliable internet access, while others pointed out that no suitable questionnaire existed for the topic or population they wanted to study. “Unsurprisingly, time was a key barrier to using PROs and CROs,” Jones said.
Based on these findings, the authors suggest that funding agencies support the creation of questionnaires that are free or inexpensive for researchers to use, similar to the widely used Patient-Reported Outcomes Measurement Information System (PROMIS), a collection of questionnaires developed with support from the National Institutes of Health. They also recommend education that introduces researchers to caregiver questionnaires, deepens their understanding of advanced concepts like bias and offers practical training in newer ways to collect responses, such as text messaging. When asked how they would prefer to learn, 78% of researchers chose webinars, making them the most popular format by a wide margin.
Offering several ways to complete a questionnaire could also help more patients and caregivers take part in research, according to the authors, since text messages may work better for participants with unreliable internet service while touchscreen tablets may help people with certain disabilities.
Jones plans to build on these findings by making questionnaires dramatically shorter. “As I develop PROs and CROs as part of my research, my research will continue to develop ultra-short (2-3 question) PROs and CROs,” she said. “Creating these ultra-short PROs and CROs will reduce burden for study participants but also researchers.” She added that these brief measures could also ease technology barriers by making it possible to collect responses through methods like texting.
The authors note that the survey had a relatively small number of respondents, most of whom were senior faculty members, so the findings may not reflect the experiences of all cancer researchers. Even so, the study offers a practical roadmap for training that could help scientists more fully capture the experiences of patients and the families who care for them.
The paper does not list any funding sources.
Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium Member Dr. Salene Jones contributed to this research.
Jones, S. M. W., Kent, E. E., Caru, M., Arem, H., Kim, Y., Song, L., & Langer, S. L. (2026). Educational Targets for Patient-Reported Outcomes and Caregiver-Reported Outcomes in Psycho-oncology Research. Journal of cancer education: the official journal of the American Association for Cancer Education, 41(4), 676–681.
Science Spotlight writer Darya Moosavi is a postdoctoral research fellow within Johanna Lampe's research group at Fred Hutch. Darya studies the nuanced connections between diet, gut epithelium, and gut microbiome in relation to colorectal cancer using high-dimensional approaches.