What matters to young people and parents during chronic pain treatment?

Details

Earlier studies had established a core outcome set for pediatric chronic pain clinical trials. This study sought to identify which outcomes young people and parents considered important to measure during treatment for chronic musculoskeletal pain. To the authors’ knowledge, it was the first study to explore which outcomes could be used to tailor interventions in a clinical setting.

Researchers recruited 21 young people aged 11–18 and 21 parents from two UK hospital sites. They took part in semi-structured interviews that included drawing a timeline of their treatment. Participants identified positive and negative outcomes that showed how effective they perceived treatment to be.

Informed by Q methodology, researchers developed the young people’s and parents’ words and phrases into 101 statements. These were mapped onto the core outcome set and formed a Q set representing wide-ranging opinions about important outcomes. The approach identified additional statements about parent and family functioning that are not routinely considered.

Treatment experience and adverse effects were highlighted as important outcomes, although they are not routinely prioritized in clinical research. Parents prioritized outcomes related to the treatment experience, whereas young people prioritized their overall well-being. Their focus changed during treatment, with some outcomes considered relevant only at a particular time point.

The study established a range of outcomes important to young people and parents during treatment for chronic musculoskeletal pain. It highlighted their different preferences and changing focus, and the need for clinical guidance on which outcome domains to measure throughout treatment to gauge effectiveness and optimally tailor interventions.