How Far Are Rare Patients Going for Care?

Earlier this year, AllStripes asked families impacted by lysosomal storage disorders (LSDs) to participate in a survey about traveling to receive healthcare. Knowing how far and long families travel to receive care is vital to improving patient and caregiver quality of life, and it’s critical to improving clinical care and site-based studies. 

With over 150 respondents across 9 LSDs, the results provided weighty insight into the challenges many families impacted by rare disease deal with on a regular basis in order to receive care. 

What did our survey find?

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• Individuals with LSDs travel far distances to receive care. Respondents reported a median travel time of 1.66 hours and median travel distance of 94.5 miles to receive care. 

• This is dramatically more than US averages. These numbers are 4.5 times as long and 9.2 times as far as national averages, when compared to the 2001 US-wide averages of 22.0 minutes and 10.2 miles for healthcare-related travel (Probst et al., 2007). 
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• Many LSDs do not have established centers of excellence (COEs). This means patients, caregivers and patient advocacy groups have to do the work of identifying centers with disease-specific expertise. 
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• There is not an equal distribution of care centers throughout the country. Our research team defined prospective COEs and estimated travel time and distance for our research participants to these prospective COEs. We identified a non-uniform distribution of prospective LSD COEs in the US, underscoring the potential burden of accessing care for patients who live outside COE-dense areas. Our research team found that for those living in the Rocky Mountain US census division, this burden of travel would be even greater.

To read this research poster in full, visit our insights page.

Thank you

We're grateful to the families whose essential contributions made this research possible. We know we don't have to explain to you the heavy toll of traveling long distances to receive care. The more we understand about current challenges, the more we can do something about them.