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The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis

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Abstract

Purpose

To examine the associations among caregiver perceived economic hardship, psychological distress, children’s disease activity, and health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA).

Methods

Caregivers of 182 children with JIA (ages 2–18) attending the rheumatology clinics at the Montreal Children’s Hospital and the British Columbia’s Children Hospital completed a series of questionnaires on perceived financial hardship, caregiver psychological distress, and children’s HRQOL at baseline, 6 and 12 months. Clinical information such as disease activity was obtained from medical charts. Statistical models were used to look at the significance of several factors of interest while controlling for possible confounders.

Results

Higher caregiver perceived economic hardship [(β = 0.03, 95% CI = 0.005, 0.06), P = 0.02], psychological distress [(β = 0.02, 95% CI = 0.006, 0.03), P = 0.004], and higher children’s disease activity [(β = 0.11, 95% CI = 0.07, 0.15), P < 0.0001] were associated with worse children’s HRQOL.

Conclusions

Findings suggest that caregiver financial hardship and psychological distress as well as children’s disease activity may impact children’s HRQOL. By providing psychological help to parents, offering information regarding financial resources in the community and by ensuring disease control, especially when the disease is severe, health providers may improve children’s health outcomes.

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Abbreviations

AJC:

Active joint count

EHQ:

Economic Hardship Questionnaire

GSI:

Global Severity Index

HRQOL:

Health-related quality of life

JIA:

Juvenile idiopathic arthritis

JAQQ:

Juvenile Arthritis Quality of Life Questionnaire

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Acknowledgments

This research was funded by grants from the Canadian Institutes of Health Research and the Canadian Arthritis Network. Dr. Karine Toupin April was supported by a graduate training award from the Canadian Arthritis Network, The Arthritis Society, and the Canadian Institutes of Health Research. Ms. Sabrina Cavallo was supported by a graduate training award from the Canadian Arthritis Network and The Arthritis Society. Dr. Debbie Ehrmann Feldman is supported by the Fonds de la recherche en santé de Québec (FRSQ). We would like to thank Dr. Mirella De Civita for her assistance in drafting the manuscript as well as Michele Gibbon for patient recruitment and data management; and the caregivers and children who agreed to participate in this study.

Conflict of interest

None.

Author information

Correspondence to Karine Toupin April.

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Toupin April, K., Cavallo, S., Ehrmann Feldman, D. et al. The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis. Qual Life Res 21, 1185–1191 (2012) doi:10.1007/s11136-011-0033-2

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Keywords

  • Juvenile idiopathic arthritis
  • Quality of life
  • Psychological adaptation
  • Longitudinal study