Quality of life for Youth with Chronic Health Conditions as they Move through Adolescence: Findings from a Longitudinal Study

This is a guest post submitted by Dr. Janette McDougall, Researcher at the Thames Valley Children's Centre, Adjunct Professor in the Faculty of Health Sciences at Western University, and Adjunct Scientist at Bloorview Research Institute.


In March 2015, CAPHC presented a Webinar titled, Quality of Life for Youth with Chronic Conditions: Learning from Youths’ and Parents’ Perspectives. This webinar presented the qualitative and cross-sectional findings of a study examining the factors related to quality of life for youth with chronic conditions. This research is funded by the Canadian Institutes of Health Research (#100985-1).

Longitudinal results for this study are now available!

The study includes 439 youth, aged 11 to 17 years who were recruited from eight Ontario Association for Children’s Rehabilitation Services (OACRS) centres. Both the youth and a parent (or primary caregiver) completed a study questionnaire at four time points over a three-year period.

Attached to this blog is a poster presented at the 2016 CAPHC Conference in Halifax this October that presents the longitudinal results. Also attached is a link to a published article that presents in detail the purpose, methods, and findings of the longitudinal study.

Longitudinal study findings indicate that key areas where service providers and policy makers can focus their efforts in order to optimize QOL for youth with chronic health conditions as they develop throughout adolescence include:

  • Youths’ physical health, including pain prevention and treatment;
  • Youths’ emotional well-being, including a sense of purpose and meaning in life;
  • Family support for youth and overall family functioning;
  • Youths’ school productivity/engagement and self-determination in terms of goal orientation;
  • Physical and social barriers in the school and community environments; and
  • Availability of ongoing supports and resources at home, school, and in the community and during important transitions.

To view the original CAPHC webinar about this study that includes qualitative and cross- sectional results, click here.

To view the poster presented at the 2016 CAPHC Conference, click here.

To access the published article that presents the longitudinal findings of this ‘Quality of Life’ study, please go to: McDougall, J., DeWit, D.J., Nichols, M., Miller, L., & Wright, F.V. (2016). Three-year trajectories of global perceived quality of life for youth with chronic health conditions. Quality of Life Research, 25(12), 3157-3171. Open Access. Freely available at: http://link.springer.com/article/10.1007/s11136-016- 1353-z

For additional materials about the study, please go to the study webpage: http://www.tvcc.on.ca/qol

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