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Red ALS: resultados de la encuesta sobre servicios de atención de 2023

Care Serices 2023 Graphicv2 Landscape

In September 2023, ALS Golden West distributed a survey to all clients we serve – people living with ALS, their loved ones and their professional caregivers. The goal was to gather critical feedback to help better serve the ALS community.

“Our annual survey allows clients and family members to share how the services they receive are impacting their day to day lives,” said Audra Hindes, MSEd, MHC, ALS Golden West VP of Care Services. “Our 2023 survey results are both informative and positive, and we are utilizing this feedback as we plan for future programming and service enhancements.”

Respondents answered a variety of questions ranging from equipment loan needs and the benefits of working with an ALS Golden West care manager, to satisfaction with the organization’s services and the resources used when seeking ALS information.

Golden West care managers clearly showcased their expertise and approach to offering quality support by securing a 96% very satisfied/no concerns ranking from the survey. A vast majority of respondents reported that they currently work with a care manager, and they noted numerous benefits, with reduced stress, more informed decisions, and increased safety topping the list.

“Our care managers are truly our mission personified,” Hindes said. “Their work connects people living with ALS to an entire network of healthcare professionals, services, information, and tools needed to navigate ALS.”

Having this connection to ALS Golden West allows people newly diagnosed a greater quality of life throughout their ALS journey. Survey results showed that nearly 35% of people learn about Golden West through their ALS clinic, with an internet search second at approximately 20%, and awareness from their neurologist third at over 11%.

The results showcase the importance of Golden West’s collaboration and relationships with ALS clinics and health care professionals across California and Hawaii, and the investment in marketing efforts to ensure the organization’s website, social media accounts, and other communications vehicles are highly visible and user friendly.

Additional responses highlighted the significance of our equipment loan program. More than 65% of respondents connected with their care manager to secure medical and/or communication equipment with the leading reasons for using equipment being 42% reduced costs, 42% increased safety, and 34% citing reduced stress.

Areas for improvement were also noted and reflect greater opportunities for in-person meetings as we move past the COVID-19 pandemic, and increased guidance on how to access support groups via online platforms. ALS Golden West has already made changes in response to this feedback. 

For more information or questions about the survey and the 2023 results, please email careservices@alsagoldenwest.og.

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