The Impact of Geography and Ethnicity on Burden of Care in Pediatric Cancer Patients

Childhood cancers require treatment at specialized tertiary care centers which are often located in large urban areas and treat patients from rural and underserved communities and patients with limited English proficiency. All families of pediatric cancer patients must overcome significant emotional, social, and financial challenges.  These challenges may be more significant for families from underserved communities.

We administered 314 (48-item) English and 46 (72-item) Spanish-language surveys to the parents of patients, age 0-18 years, diagnosed with a cancer between 3-60 months prior to the survey.  Survey domains included measures of financial burden (travel costs/time, missed work/school, relocations), time from first symptoms to diagnosis, and clinical trial.

Of the respondents, 20% were considered “rural” with 38% and 23% reporting >1 and >2 hours travel times, respectively. Mean time from initial symptoms to diagnosis was 7.6 and 11.4 weeks for urban and rural patients, (p=0.08).  43% of school-aged patients discontinued school. Of those continuing, 26% were unable to “keep up” and 10% repeated a grade. 29% moved since their diagnosis with 33% reporting that moving was directly due to the cancer. 70% and 42% of Spanish and English speaking respondents, respectively, reported being enrolled on a clinical trial (p=0.007) and 13% of Hispanic respondents reported avoiding care due to immigration status while 20% reported their immigration status effecting their decision about clinical trial enrollment.

In conclusion, caring for a child with cancer places a significant burden on the patient’s family. This burden may be impacted by patients’ rurality or ethnicity.