ATLANTA — Young adults with chronic illnesses are not being asked the right questions on surveys of patient-reported outcome measures, warns an international focus group.
Younger adults saw the outcomes on daily functioning as outdated, said Erika Mosor, MSc, from the Center for Medical Statistics, Informatics, and Intelligent Systems at the Medical University of Vienna, who is president-elect of the Austrian Society of Health Professionals in Rheumatology.
“One younger man who was part of the focus group said: ‘I think it’s just an old-people’s questionnaire. Maybe we have kind of an old people’s body, but with this, you are really confronted with that’,” she said here at the American College of Rheumatology 2019 Annual Meeting.
“Little is known about young people’s perspectives on patient-reported outcome measures,” she said. “We wanted to investigate whether aspects important to young people with inflammatory arthritis are sufficiently covered by the patient-reported outcome measures that are widely used in clinical practice and research, and to identify concepts that are missing.”
In 2017, a program to understand the perspective of young patients was launched by the European League Against Rheumatism (EULAR) task force on patient-reported outcome measures for young people with inflammatory arthritis.
The task force conducted 12 focus groups in four countries — Austria, Croatia, Italy, and the Netherlands — with 53 patients who had rheumatologist-diagnosed inflammatory arthritis and were 18 to 35 years of age.
The researchers identified a number of areas where patient-reported outcome measures from young patients could be improved.
For starters, young people often did not understand the purpose of the measures or how they can be used to improve clinical outcomes, Mosor said.
“One woman said: ‘Honestly, I have often thought that we are asked to fill all those questionnaires out to keep us quiet and prevent us from freaking out in the clinic’,” Mosor reported. And patients generally believed that doctors did not have time to review the patient reports or discuss them.
I am much more concerned about what my life will look like than whether or not I have pain.
Also, questionnaires do not ask about issues relevant to people in their 20s or 30s, like career planning, caring for children or parents, loss of friends, and challenges the disease presents for a social life, romantic life, and sex.
“One female respondent told us: ‘They never ask whether I worry about the future, or about starting a family, or that sort of thing, but I am much more concerned about what my life will look like than whether or not I have pain’,” Mosor said.
Some respondents told the task force that they purposely rate their pain, fatigue, and other symptoms either lower to avoid interventions or higher to be taken more seriously.
“The scales were not useful to them,” Mosor said. “And this might have severe implications for their individual treatment” if they’ve purposely misrated outcomes.
The method of collection, too, was a turn-off for younger patients, the task force found.
“Some of the young people suggested using technology for data acquisition, so they could see their results over time,” Mosor said. And they also suggested a better way to monitor their disease — something like a pain diary — to have a better overview of how their disease plays out in their daily lives.
A Critical Age Group
This age group — 18 to 35 years — is a critical one, said Andrea Ring, senior director of juvenile arthritis and young adults at the Arthritis Foundation.
“And breaking it down even further, that 18 to 25 group has particularly special issues,” she said. “How do you handle going to college or getting your first job? How do you transfer from your pediatric rheumatologist to your adult rheumatologist?”
The Arthritis Foundation has resources that can help, such as programs on college campuses to connect patients with arthritis and a mentoring program that pairs more experienced young adult patients with arthritis with those in their late teens. However, when it comes to the systemic clinical collection of patient-reported outcome measures, the foundation’s role is small; it is working on measures for children but not for young adults.
“It’s important to set these patients up for success across all areas of their lives,” Ring said.
The takeaways from the task force are important for that reason, Mosor said. The researchers are now launching a bigger focus group and have already enrolled more than 1000 young adults.
“We need to involve young people with inflammatory arthritis in the development of new patient-reported outcome measures and the adaptation of existing measures to ensure that important concepts are included,” she said. “Even though it might be challenging, we need to keep patient-reported measures up to date. And let us not be too generic. People are different, and we might not capture all meaningful things for treatment, rehabilitation, and support without talking to each other about them.”
American College of Rheumatology (ACR) 2019 Annual Meeting. Presented November 10, 2019.