Exploring Prevalence and Management of Anxiety in Children and Adolescents with Cancer or Undergoing Hematopoietic Stem Cell Transplantation

Cure rates for childhood cancer are on the rise, and with these improvements, focus has expanded from treatment of disease to improvement of health-related quality of life (HRQoL) for children and adolescents with cancer. Anxiety is one symptom that can be a normal response for children and adolescents diagnosed with cancer, but if prolonged or leading to excessive distress, anxiety can negatively impact an individual’s psychosocial well-being. As focus shifts towards improvement of quality of life (QoL), researchers and clinicians require a better understanding of how anxiety is experienced and managed in this population. The overall objectives of this dissertation were to identify and describe instruments for measurement of anxiety in children and adolescents with cancer or undergoing hematopoietic stem cell transplantation (HSCT), to estimate the burden of anxiety and to describe guideline recommendations for assessing and managing anxiety in this population. The three papers comprising this dissertation established several key findings, including: (1) identification of 4 instruments (3 multi-item, 1 single-item) for assessing anxiety that are reliable and valid among paediatric cancer or HSCT patients and thus may be used for measurement of anxiety in this population; (2) between 13.0% and 28.6% of children and adolescents meet or exceed thresholds for severe anxiety depending on the anxiety measurement instrument used, and thus careful consideration should be given to the instrument selected for measurement to ensure it accurately measures the anxiety construct of interest; and (3) guidelines used by clinicians to manage cancer provide little to no guidance on assessing or managing anxiety in this population. Overall, given the inconsistency in measurement of anxiety by available instruments, along with a lack of guidelines, further research is needed to develop and implement instruments and processes that address anxiety in this population, which may improve HRQoL. This research has also established the groundwork for a program of research focused on standardized screening and intervention practices, implementation of said practices and evaluation of intervention effectiveness for anxiety in children with cancer and children who have undergone HSCT.Ph.D