Andrea Johnson​, PhD
University of Toronto

Approximately 20% of children and adolescents diagnosed with cancer will not survive their disease. This means that a significant number of children and adolescents will live with advanced cancer and likely use pediatric palliative care (PPC) services (healthcare for children and adolescents living with serious illness). I have been a clinician in PPC for the past ten years and have been confronted by the complexity of caring for children and adolescents living with cancer that is difficult to cure. Part of this complexity is that we do not yet understand what is most meaningful to children and adolescents as they move towards the end of their life. This impacts their care, as their needs and experiences are not well defined nor even understood.

The goal of PPC is to alleviate holistic suffering and to enhance quality of life (QOL) of the child or adolescent and their family. (For more information on PPC, click here.) However, there is sparse data on the domains of QOL for children and adolescents living with advanced cancer, and so little is known about what QOL means to this population, and thus what might improve it.

Within our research, we wanted to generate an initial understanding of aspects of QOL specifically relevant to children and adolescents living with advanced cancer. To do this, we conducted a review of articles that included the direct voices of children and adolescents with advanced cancer. We extracted their narratives and then generated themes of QOL that were represented by these narratives. We found six main themes:

  1. Feeling supported and wanting to support others
  2. Re-establishing normal
  3. Suffering and emotional distress
  4. Assuming new perspectives
  5. Maintaining autonomy
  6. Awareness of time

These themes were different than those traditionally applied to the QOL experiences of children and adolescents with cancer, which can be found here. They offer a new way to begin thinking about the distinct dimensions of QOL specific to this population.

QOL is a complex term that is difficult to define and measure. Its use has been criticized by a lack of attention to its conceptual underpinnings and its non-specific and non-consensual global definition. This research is unique with its focus on using the voices of children and adolescents with advanced cancer to understand what is meaningful to them about their QOL, as their voices have not always been privileged in either research or clinical practice. Often, parents and health care professionals are asked to inform and define what aspects of children’s and adolescents’ lives might be most meaningful and significant when faced with advanced cancer. This approach, although well-intentioned, compromises the accuracy of defining and then assessing the unique QOL experiences of this group.

Our research highlights the idea that existing themes of QOL typically applied to children and adolescents with cancer may not be contextually relevant when their cancer is advanced. Although a variety of instruments have been used with children and adolescents with cancer to measure their QOL, there have not been any designed for use specifically with children and adolescents living with advanced cancer nor that have integrated their voices throughout all phases of development. Our research offers an important initial step in beginning to conceptualize their unique QOL experiences, which can then inform the development of a valid way to measure QOL information directly from children and adolescents living with advanced cancer. An accurate way to understand and measure their QOL, informed by their voices and perspectives, can contribute to advancing and refining PPC delivery for children and adolescents living with advanced cancer.

Abstract will be presented in Thursday Poster Session II​ on Thursday, 19 October, 3:20 pm – 4:00 pm. 

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

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