Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign

Journal of Patient Experience
Lindsay RechtmanPaul Mehta

Abstract

To conduct educational and promotional outreach activities to general neurologists and to increase self-enrollment of persons with amyotrophic lateral sclerosis (ALS) in the National ALS Registry (Registry). A multicomponent project to educate neurologists and increase Registry self-enrollment was delivered. Project components consisted of phone calls, mailings, train-the-trainer presentations, and key informant interviews. Project-specific metrics, continuing education enrollment, and Registry self-enrollment data were analyzed to measure project efficacy. Mailings were sent to 1561 neurologists in 6 states during 2015 to 2016. Sixty-five percent of responding neurologists remembered the mailing 3 months after receipt. Of providers who saw patients with ALS in the 3-month period, 60% read the provider guide, 22% distributed a patient guide, and 15% advised a patient to self-enroll. No changes in self-enrollment rates were observed. Targeted mailings to providers can be used to educate them about the Registry; however, most providers did not distribute materials to patients with ALS. Increases in providers receiving Registry material did not lead to increases in patient self-enrollment. General neurologists have competing prior...Continue Reading

References

Jul 31, 2013·Health Care Management Review·Hannemann-Weber Henrike, Carsten Schultz
Mar 7, 2014·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Wendy E KayeJennifer Wu
Dec 9, 2014·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Lindsay RechtmanWendy Kaye
Sep 25, 2015·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Laurie WagnerWendy Kaye
Oct 31, 2015·Neurologic Clinics·Björn OskarssonHiroshi Mitsumoto
May 18, 2016·International Journal of Epidemiology·Benoît MarinEttore Beghi
Aug 5, 2016·MMWR. Surveillance Summaries : Morbidity and Mortality Weekly Report. Surveillance Summaries·Paul MehtaKevin Horton
Oct 13, 2017·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Wendy E KayePaul Mehta
Feb 23, 2018·MMWR. Morbidity and Mortality Weekly Report·Paul MehtaKevin Horton

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