Background/Purpose: Juvenile Dermatomyositis (JDM) is a rare, autoimmune inflammatory condition primarily affecting the muscles and skin. With a mean age of onset of 7 years of age, and research suggesting that 70-80% of young people will have ongoing treatment into adulthood, a significant proportion of children and young people will live with chronic disease for over 10 years of their childhood. Whilst it is acknowledged from studies asking carers that children and young people with JDM suffer from a significant impairment in their health related quality of life, there is no current published research asking young people what their psychosocial needs are and how we can improve their coping with this condition, even after disease remission.

Methods: We surveyed all 246 8-19 year old young people with JDM in the United Kingdom through the Juvenile Dermatomyositis Cohort and Biomarker Study and Repository (JDCBS). Young people were asked to complete measures which have proved significant from previous qualitative interviews, these included perception of uncertainty, quality of life, benefit, burden, and emotional distress, with the opportunity to answer qualitative questions with commentary.

Results: There were no differences in demographics or disease characteristics between the 123 responders and the 119 non responders. 40% of patients scored over the recommended cut-off for emotional distress, which suggested that they should be referred for further psychological assessment. Quality of life scores were lower in children with JDM compared with scores for healthy UK norms. JDM physical and psychosocial summary scores: (75.64 + 24.47 and 76.89 + 18.55) healthy physical and psychosocial summary scores: (88.51 +11.62 and 81.58 + 11.84). Regression analysis indicated that children with increased feelings of uncertainty about their disease and increased perception of burden had lower quality of life in all domains (P value < 0.001). Furthermore, uncertainty and burden were correlated (r= 0.64 P = < 0.001), but equally significant and therefore independently related to quality of life, however burden was more closely related to quality of life after adjusting for other factors. Importantly there was no evidence that quality of life varied by gender, age or years since diagnosis, and no relationship between benefit and quality of life or emotional distress was observed.

Conclusion: This study found that perception of uncertainty and feeling a burden in children and young people with JDM were significantly related to reporting a lower quality of life and higher emotional distress, and 40% of the UK cohort of JDM patients scored over the recommended threshold for emotional distress. These findings can be used by clinicians and allied health professionals to consider the impact of uncertainty and perception of being a burden on children and young people with JDM, and consider ways to lessen this uncertainty. From the qualitative comments, we have ideas about improving psychosocial support for the future, such as the creation of a book for teachers about JDM to improve their education experience.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/assessing-psychosocial-needs-in-juvenile-dermatomyositis-patients-across-the-united-kingdom/