Background: The study goal was to describe physical, psychosocial, psychological, spiritual, and economic challenges faced by cancer survivors. A secondary aim was to develop and pilot test a web-based system for surveying large populations.

Methods: This cross-sectional, population-based pilot study was conducted at an NCI-designated Comprehensive Cancer Center and at 10 community-based cancer clinics serving urban and rural populations throughout New Hampshire. Cancer survivors were individuals diagnosed with cancer, or their caregivers. Population-based and convenience sampling approaches were used to recruit 720 survivors (548 patients and 172 caregivers) over 4 months. A state-based breast cancer screening registry was used to target most participants. Self-reported demographic, clinical, and resource data were gathered via the Web survey. Unique patient and caregiver surveys contained 112 and 72 items respectively. Content validity was satisfactory and intra-rater reliability data analysis is underway. Computer-mediated branching logic diminished respondent burden.

Results: The average time taken to complete the survey was 12-18 minutes. Respondents were 22-88 years of age with educational backgrounds ranging from less than 8th grade to graduate education. Although a wide range of cancer diagnoses were represented, as expected, most patients had breast cancer (68.4%). Common patient problems were fatigue (26.5%), joint pain (20%), memory loss (19.9%), insomnia (19.7%), and intimacy problems (17.9%). Most wanted help for these problems (33.7–68.5%). Talking with other survivors, support groups, nutritional counseling, exercise, massage, Reiki, and yoga were the most commonly used/requested support services. Caregivers reported problems with communication (21.5%), weight gain (19.2%), anxiety (18.6%), insomnia (18.6%), fatigue (18%), and finances (12.8%). Most caregivers (66%) would use supportive resources.

Conclusions: The Web-based survey facilitated population-based data collection from patients of diverse age and educational backgrounds. Survivors struggle with many bothersome problems. Survey data can be used to develop community-specific resources.