Patient experiences and treatment access with pediatric rhabdomyosarcoma
Matthew Larson, MD1, Patricio Gargollo, MD2.
1University of Kansas, Kansas City, MO, USA, 2Mayo Clinic, Rochester, MN, USA.
BACKGROUND: Pediatric rhabdomyosarcoma is a rare and poorly understood disease. It is often rapidly progressive and requires swift and aggressive treatment measures. Patients and parents-of-patients afflicted with this disease can have widely varying experiences including barriers to care, time to treatment, and treatments offered. Here we report on patient experiences regarding their care of pediatric rhabdomyosarcoma. METHODS: Two separate online support groups were invited to participate in a survey. The survey included 39 questions which sought to collect patient demographics, history of rhabdomyosarcoma, treatment timelines, and barriers to care. RESULTS: 242 responses were collected. Average patient age was 7.4 years (SD = 5.4 years). Males accounted for 52% of the responding patients; 47% were female. Among the group, the average time from initial diagnosis to initiation of treatment was 11.6 days (SD = 13.9). In patients which a recurrence occurred, an average of 75 days passed between detection of recurrence and re-initiation of treatment. Patients travelled to seek expert care in 53% of the cases. 43% of responding patients sought a second opinion. Only 27% of the patients were offered fertility preservation prior to beginning treatment. Of those patients seeking a second opinion, the majority had to wait between one week and one month to be seen by another expert. Reported barriers to seeking expert care included travel costs, insurance coverage, and social situation. CONCLUSIONS: The data collected from the survey suggests opportunities to improve care among patients with pediatric rhabdomyosarcoma. Most notably, a relatively small number of patients are seeking expert care. Patients who obtain second opinions often delay treatment several weeks or even months. Delays in initiation of treatment were present in all groups, particularly following detection of recurrence. Many patients may benefit from a more efficient rhabdomyosarcoma referral networks, delivering patients to experts who can quickly begin treatment.
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