Due to significant cancer treatment advancements in the last 50 years, there is a growing population of childhood cancer survivors. Yet, both the cancer itself and life-saving treatments place survivors at increased risk for a range of negative mental and physical health outcomes, referred to as late effects. Chronic pain is a particularly common and distressing late effect that can have significant impacts on daily functioning, mental health, and quality of life; however, pain remains undertreated both during treatment and into survivorship.

The purpose of this study is to better understand the pain experiences of adult survivors of childhood cancer living with chronic pain. Specifically, we want to gain a better understanding of survivors’ experiences with pain over time, the physical and psychosocial impacts of their pain, and their experiences accessing pain care within health care systems.

Participants will include 25 adult survivors of childhood cancer recruited from Canada and the U.S. Eligibility criteria include: 1) a diagnosis of cancer before the age of 18; 2) being at least 5 years post-diagnosis; 3) no current cancer treatment or evidence of active cancer; 4) current chronic pain (pain lasting 3 months or more); 5) ability to speak and read English; and 6) ability to participate in an online Zoom-based interview.

After completing an online eligibility screening, eligible participants will complete a brief online survey (10-15 minutes), which includes demographic, medical, pain-related, and mental health questions, as well as validated survey measures. After completion of the online survey, survivors will be contacted to schedule a one-on-one Zoom interview to hear more about their pain experiences during treatment and in survivorship (approximately 60 minutes). Both the online survey and Zoom interview will also include questions assessing survivors’ needs and preferences for a digital health intervention.

By using a qualitative approach with in-depth interviews, the proposed study will allow for a more nuanced understanding of survivors’ pain experiences. These results, in turn, will help inform chronic pain assessment and management in the survivorship period, allowing for tailored approaches based on the direct experiences of survivors living with chronic pain. Findings will also guide the development of a digital health tool specifically designed to address the unique pain management needs of adult survivors of childhood cancer.

For more information, please contact Renu Jeyapala.