Deborah Nelson, University of Utah
Pediatrics
Families of pediatric cancer patients are presented with significant emotional, social, and financial challenges. Most children with cancer are treated in pediatric oncology centers located in urban areas and many must travel great distances for therapy. This study aims to evaluate the burden of care associated with pediatric cancer care and to determine the impact of the location of patients’ residence on those burdens. We administered a n=310 (48-item, English) and n=46 (72-item, Spanish) survey to the primary caregiver of patients, ages 0-18 years, diagnosed with a cancer between three to six months prior to the survey. Survey domains included measures of rurality, time from first symptoms to diagnosis, financial burden (travel costs and time, missed work, relocation) and missed school. Survey analysis suggests rural families and those traveling >2 hours to a pediatric oncology center took longer to obtain diagnosis, missed more work days, paid more in travel expenses and relocated more often than families living closer. Of the respondents, 18% were considered “rural” with 38% reporting greater than one-hour travel time and 25% reporting greater than two-hour travel time. Mean onset of initial symptoms to diagnosis was 11.4 weeks for rural and 7.6 weeks for urban patients. Mean out of pocket costs per clinic visit for rural were over three times that of urban patients. Twenty-nine percent (n=102) moved since diagnosis; of that 33% reported moving was directly due to cancer. Fifty-six percent of school-aged patients discontinued school; of those 28% were unable to “keep up” and 10% repeated a grade. Caring for a child with cancer places a significant number of burdens on the patient’s family. This burden appears greater for patients living in rural and distant areas and could effect patient care and access to treatment.