Being as Normal as Possible: How Young People Ages 16-25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis

Hart, Ruth I., McDonagh, Janet E., Thompson, Ben, Foster, Helen E., Kay, Lesley, Myers, Andrea and Rapley, Tim (2016) Being as Normal as Possible: How Young People Ages 16-25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis. Arthritis Care & Research, 68 (9). pp. 1288-1294. ISSN 2151-464X

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Abstract

Objective: To explore how young people (ages 16–25 years) with inflammatory arthritis evaluate the risks and benefits of treatment, particularly treatment with biologic therapies.

Methods: This qualitative study involved in-depth interviews (n = 44) with young people, trusted others (e.g., parents), and health professionals; audio-recordings (n = 4) of biologic therapy–related consultations; and focus groups (n = 4). Analysis used techniques from grounded theory (open and focused coding, constant comparison, memoing, and mapping).

Results: Young people aspired to live what they perceived as a “normal” life. They saw treatment as presenting both an opportunity for and a threat to achieving this. Treatment changes were therefore subject to complex and ongoing evaluation, covering administration, associated restrictions, anticipated effects, and side effects. Information sources included expert opinion (of professionals and other patients) and personal experience. Previous treatments provided important reference points. Faced with uncertain outcomes, young people made provisional decisions. Both trusted others and health professionals expressed concern that young people were too focused on short-term outcomes.

Conclusion: Young people value treatment that helps them to live a “normal” life. There is more to this than controlling disease. The emotional, social, and vocational consequences of treatment can be profound and lasting: opportunities to discuss the effects of treatment should be provided early and regularly. While making every effort to ensure understanding of the long-term clinical consequences of taking or not taking medication, the wider impact of treatment should not be dismissed. Only through understanding young people's values, preferences, and concerns can a sustainable balance between disease control and treatment burden be achieved.

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