Researchers explored how people aged 16 to 25 years old with inflammatory arthritis evaluate the risks and benefits of treatment. They especially wanted to focus on the patientsâ€™ assessments of biologic therapies.
Young adults with arthritis struggle to balance disease activity control with the burdens of treatments, suggests findings published in Arthritis Care & Research.
Researchers from the University of York in England interviewed 44 patients, “trusted others,” and health professionals in order to explore how people aged 16 to 25 years old with inflammatory arthritis evaluate the risks and benefits of treatment. The researchers especially wanted to focus on the patients’ assessments of biologic therapies. They also included audio recordings of four biologic therapy related consultations and four focus groups in their analysis.
The researchers concluded that above all, young arthritis patients strive to have a “normal” life. They added that the young people saw treatment as a threat to their normal life as well as a way for achieving a normal life. Treatment changes were ongoing complex evaluations in the discussions that the study authors observed. Topics during these discussions included administrations, associated restrictions, anticipated effects and side effects. Those who disseminated information included experts such as professionals and other patients and others with personal experience.
“Young people value treatment that helps them to live a ‘normal’ life,” the study authors wrote. “There is more to this than controlling disease. The emotional, social and vocational consequences of treatment can be profound and lasting: opportunities to discuss their effects should be provided early and regularly.”
The researchers added that those with previous treatment used that as an important reference point. When the young patients were up against unfamiliar territory, they made short term decisions. The “trusted others” included in the interview and the healthcare professionals expressed concern that young people focused primarily on short term outcomes.
“Whilst making every effort to ensure understanding of the long term clinical consequences of taking or not taking medication, the wider impacts of treatment should not be dismissed,” the study authors concluded. “Only through understanding young people’s values, preferences and concerns can a sustainable balance between disease control and treatment burden be achieved.”
Above all, the researchers commented in a press release that young arthritis patients need to find a balance between disease control and treatment burden.
“Young people can have severe arthritis, warranting aggressive treatment, but may find such regimens a struggle to sustain,” lead author Ruth Hart said in the statement. “Encouraging them to talk about the difficulties they may encounter, as well as the more positive outcomes of treatment, is essential if they are to make decisions they can see through.”