Abstract 4439: Childhood cancer late effects: Knowledge base and meaningful resources from a community perspective

Each year, cancer kills more children between 1 and 20 years of age than asthma, diabetes, cystic fibrosis, and AIDS combined, and remains the leading cause of death in children. Over 80% of children with cancer will survive, due to ongoing research and treatment in pediatric cancer. While long-term survival rates for pediatric cancer are fairly high, more than 3/4 of survivors experience late effects–complications, disabilities or other adverse outcomes as a result of the disease, its treatment, or both. The development of a website focusing on pediatric cancer late effects for diverse patients and the public is currently underway. The process is guided by community based participatory components. As part of the needs assessment we conducted a series of four focus group discussions. A total of 39 adults participated, including 7 to 12 participants per group. All group discussions were conducted in community sites and lasted up to two hours. Participants of diverse background from the local underserved communities were recruited. Gender and language of preference (English-Spanish) was used to breakdown the group discussions into 4 homogeneous groups. All groups conducted in Spanish included individuals from Latino descent. In addition, primarily African Americans, Asian Americans, Native Hawaiians and Pacific Islanders, and Latinos participated in the groups conducted in English. The results indicated that knowledge about childhood cancer based on other than personal experience was extremely limited. Participants across the groups consistently referred to TV ads as the only source of information. In addition, participants across the groups expressed that they lacked information about cancer in general. Personal experience varied greatly among the groups and included experience through close family members. Notably, the groups including women expressed greater direct experience with families, friends, or acquaintances and were more proactive sharing details of the experiences and hardships related to childhood cancer. Unfortunately often the information shared during the discussions pointed out to the premature deaths of strong exemplary children and the devastation in their families. Another common theme was the complete lack of information about the topic that the families confronted when the disease was diagnosed. Written resources and information distributed at community group meetings were identified across all groups as necessary to increase awareness about childhood cancer (and cancer in general), including late effects. Websites were also discussed as potential sources of information. Given the unequal burden of pediatric cancer on underserved communities, the results are important to guide the development of community programs addressing pediatric cancer knowledge and late effects awareness. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 103rd Annual Meeting of the American Association for Cancer Research; 2012 Mar 31-Apr 4; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2012;72(8 Suppl):Abstract nr 4439. doi:1538-7445.AM2012-4439