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Show THE UNIVERSITY OF UTAH RESEARCH POSTERS ON THE HILL 2013 THE IMPACT OF GEOGRAPHY ON THE BURDEN OF CARE FOR PEDIATRIC ONCOLOGY PATIENTS AND THEIR FAMILIES Deborah Nelson (Mark Fluchel) Department of Pediatrics 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. The Impact of Distance on the Burden of Care in Families of Pediatric Oncology Patients Deborah Nelson, Mark Fluchel Department of Pediatric Hematology-Oncology THF UNIVERSITY OF UTAH children ages 1-5 years and second most common cause 01 death in children ages 5-14 years Therapies and care required lo treat childhood cancers results in significant emotional, financial and social challenges Living far from a treatment center may Increase the burden of care on families • Little data exists on the effect of residence h burden of care associated with childhood ca • P C M C serves as the main pediatric care ce geographical area as on the ter for a Table 1. Hem-One Clinic Visits at P C M C Over a 3-Year Period **\w 4 9 V I * - - »' > 6 hours > 9 hours > 10 hours 502 264 212 106 27 24 side line how the distance between the place of and cancer treatment center impacts the burden pediatnc oncology patients and their families to a treatment center impacts Direct financial costs Emotional burden of treatment School and work attendance iHH'iTr'H liimlrqj- A 48-rtem English-language survey (n=323) Spanish-Language survey (n=46) were given to to the primary caregivers of patients who were • 0-18 years old at diagnosis - Within 3 months to 5 years of diagnosis Survey was administered in the outpatient Pediatric Hematology-Oncology clinic dunng routine scheduled visits Data was analyzed using Stata Emotional Burden - Validated "Impact of Events' Scale • Perception of emotional burden (Visual Analog Scale) Dlaoase I Treatment Specific Items - Initial symptoms, time to diagnosis - Enrollment status on therapeutic - Care at outside facilities - Medical transport utilization U U H M M M M I • m j wu> iamnl I m a n I = w u I I « M ^Z£ZT~"' KB"""- """""* Z s^r^ , U.Mlaa,! : "'"' "'" | ' | ! .,„ n l ! MS ;c- •*HWP3I}J KJHl.) *OPl mv.l| ""' ™."',^2, •„*£,' ££! 1 1 "• "»' "• " *" B«M tarn,'' i»U | 00„ ' tun) " - " - • - i -> iwtMipim^iiinYmp irr-r™ I «r«ii ux«i. J.H7.I *wp?l NOJOOI •IS, ' HZ «<• "" -:, .»», W,.i : .-., i»l«l: DJ3 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, 1 8 % were considered "rural" with 3 8 % reporting greater than one-hour travel time and 2 5 % 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. • 3 8 % traveled greater than one hour to get to P C M C • 2 5 % traveled greater than two hours to get to P C M C Financial Burden • Mean out-of-pocket travel costs per clinic visit (gas, hotel, tickets): $59 96 • 2 9 % of families moved since their child's cancer diagnosis • 3 3 % reported that the move was directly the result of their child's cancer diagnosis • 3 6 % of these moved specifically to be closer to P C M C • Rural caregivers missed an average of 25 days of work during the firsl monlh of their child's diagnosis while urban caregivers missed 16 days of work * Those traveling >2 hours to P C M C missed significantly more work than those traveling <2 hours I I I I Mean IES totals were 31 >19 considered High Clinical Concern') No difference in Urban/Rural respondents No difference in travel time Mil • Significant burden is placed on families with a child battling cancer including large financial and emotion, These burdens may be impacted by the location of tl patient's residence, especially those Irving greater th two hours from P C M C |