Cancer Control Research5R21CA106748-02
Santacroce, Sheila J.
MANAGING UNCERTAINTY IN CHILDHOOD CANCER SURVIRORSHIP
DESCRIPTION (provided by applicant): Long-term survivors of childhood cancer face physical late effects years after treatment ends. Survivors and their parents also experience psychosocial late effects such as posttraumatic stress symptoms (PTSS) and anxiety that are heightened by triggers of uncertainty, including follow-up health care visits. Uncertainty and psychosocial late effects can interfere with health care utilization and awareness of information about how to minimize physical late effects. The purpose of this pilot/feasibility study is to evaluate the feasibility of an integrated intervention for childhood cancer survivors and their parents and of using the "technology model" (Carroll et al., 2000) to control unsystematic variance in intervention delivery. Approximately 52 long-term childhood cancer survivors' ages 15 to 24 years, and their parents will be randomly assigned to the experimental or control group. Youth in the experimental group will receive comprehensive survivorship care, followed by 8 weekly telephone Coping Skills Training (CST) sessions that provide them with information about ways to cope with uncertainty and psychosocial late effects in survivorship. Parents of youth in the experimental group will also receive 8 weekly telephone CST sessions. Youth in the control group will receive comprehensive survivorship care. Youth in both groups and their parents will complete study questionnaires in the clinical setting at 4 points in time over 12 months. When youth in the control group and their parents have completed the questionnaires at the 3rd time point, they will receive 8 telephone CST sessions. 25 percent of youth in each treatment group, selected on the basis of the youth's level of PTSS at study entry, and their parents will be interviewed about their experience with comprehensive survivorship care and, as applicable, telephone CST. Data will be analyzed for differences over time between the groups on outcomes that include uncertainty management (knowledge, PTSS, health behavior), anxiety, quality of life, and posttraumatic growth. Interview data will be analyzed for risks and benefits of the integrated intervention, and to refine the intervention for future studies. Feasibility of using the technology model will be determined based on analysis of the effect of the measure of intervention fidelity on study outcomes for individual participants. This study is an important step in identifying models of care that promote functional uncertainty management, quality of life and posttraumatic growth, and limit adverse late effects and disability for long-term cancer survivors.