Quality of Life Assessment of Childhood Cancer Survivors

Background: Investigations utilizing various research methods have assessed psychological adjustment, psychosocial adaptation and quality of life (QOL) among young adult survivors of childhood cancer. Most of these studies suggest that on standardized measures of QOL cancer survivors are functioning at a high level, although some long-term survivors report significant physical and psychological debilitations. Few studies, however, have captured the subtle and unique aspects of surviving cancer during childhood or adolescence, and few have examined the extent to which survivors' age/life stage at diagnosis and treatment influences the achievement of developmental tasks as these young people transition to adulthood. Purpose: This study aims to (1) enhance the ability to assess and examine the varied and unique ways in which cancer impacts quality of life for young adult survivors of childhood cancer within the context of human growth and development; and, (2) explore the ways in which cancer's long-term and late physical, psychological, social, and spiritual/existential effects are related to the age/life stage at which cancer is diagnosed and treated. Method: Young adult survivors of childhood cancer (ages 18-39) were identified from the registries of oncology units at four children's hospitals in the US and recruited to participate in semi-structured qualitative interviews. Eighty-six participants were asked to describe how having had cancer as a child or teenager has affected, or continues to affect, their lives. Qualitative analysis involved open coding and organization of codes into an a priori Quality of Life framework (Ferrell, Hassey Dow, Leigh, Ly, & Gulasekaram, 1995) consisting of Physical, Psychological, Social and Spiritual/Existential domains. Constant comparative analyses of codes within each domain resulted in code clusters and thematic content within each domain. Results: One hundred twenty-nine codes represented content across four quality of life domains. In the Physical Domain participants indicated impacts with regard to their bodies and health, health behaviors, needs for medical information, and use of health care services. Psychological impacts involved a range of feelings, impacts on cognition, concerns, worries and fears, and resilience. In the Social Domain participants reported impacts on relationships with significant others, experiences of stigma and discrimination, challenges with employment, school and finances, and participation in social activities. In the Spiritual/Existential domain participants reported that cancer has affected their life goals, religious practices and faith, outlooks on life and death, and has also resulted in life changes and uncertainty. Conclusion: These results will be used to inform the development of a new “Impact of Cancer” (IOC) instrument that will be administered, along with a complementary series of psychosocial/quality of life outcome measures, to 3,600 long-term survivors of childhood cancer via mailed survey. The psychometric properties of the new instrument will be analyzed, as will be associations between specific quality of life outcomes and age/life stage of diagnosis.

References

Ferrell, B. R., Hassey Dow, K., Leigh, S., Ly, J., & Gulasekaram, P. (1995). Quality of life in long-term cancer survivors. Oncology Nursing Forum, 22(6), 915-922.