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Show SCHOOL OF MEDICINE AND HEALTH SCIENCES UNDERGRADUATE RESEARCH ABSTRAC i Deborah Nelson Mark Fluchel THE IMPACT OF DISTANCE ON THE BURDEN OF CARE IN FAMILIES OF PEDIATRIC ONCOLOGY PATIENTS Deborah Nelson (Mark Fluchel) Department of Pediatrics, Hematology-Oncology University of Utah 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. W e 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, 1 8 % were considered "rural" with 3 8 % 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 3 3 % reported moving was directly due to cancer. Fifty-six percent of school-aged patients discontinued school; of those 2 8 % were unable to "keep up" and 1 0 % 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. Efforts are being made to secure grant funding for a pilot study using iPod Touch, FaceTime and/or Skype as potential communicative tools between distant/rural patients and the Primary Children's Medical Center Hematology-Oncology clinic. Hematology-Oncology Clinic Visits at P C M C Over a 3-Year Period on w w t Coast J C* iMrtwaa "J Travel Time to Tx Center > 2 hours > 3 hours > 4 hours > 5 hours > 6 hours > 7 hours > 8 hours > 9 hours > 10 hours # Clinic Visits 2684 1800 830 502 264 212 106 27 24 |
