The Top 3 Care Needs of People With Limb Loss and Limb Difference
Despite the many surveys and studies conducted on people with limb loss and limb difference, the sad reality is that we know little about the needs and challenges of the more than 2.1 million community. People with limb loss and limb difference have complex health needs, and we need to understand these to provide better care.
The Amputee Coalition conducted the largest community survey from 2021-2022 to assess the community’s physical and mental health needs. Besides individual health priorities, the survey also identified access gaps in physical and mental health services, as well as the need for social and community support resources.
In a nutshell, the survey found that people with limb loss and limb difference continue to experience disability-specific challenges, like access to pain treatment and rehabilitation, as well as issues about understanding their rights, such as those stipulated in the Americans With Disabilities Act (ADA).
Below we discuss the top three concerns identified in the survey.
1. Assistive technologies
The survey respondents identified their top three physical health priorities: access to a prosthesis, balance and strength, and improved performance or comfort in their assistive device. These findings align with previous research that found two-thirds of Americans with limb loss or limb difference never receive a prosthesis.
Although many choose not to use a prosthetic limb, other studies have shown that the main reason for prosthesis rejection was dissatisfaction with the comfort and function of the device. This is especially true in individuals with upper limb amputation.
According to the researchers, the high priority placed on assistive technologies may be influenced by several factors, including insurance coverage issues when accessing a suitable prosthesis. This is because an individual’s insurance coverage often dictates the type of prosthetic limb they can get and how much they need to pay out of pocket.
As of this publication, the Government Accountability Office (GAO) has committed to studying the barriers to assistive technologies, as well as how these barriers affect patient outcomes across private insurers, Medicare, and Veterans Affairs (VA). This study provides an opportunity to obtain additional data to identify best care practices for people with limb loss and limb difference to improve the community’s health.
2. Health literacy
The second health priority identified in the survey is the need to understand how to navigate health insurance, as well as how to make the most out of accommodations given to people with limb loss and limb difference by the ADA. This finding indicates that many in the community may miss out on health care options, benefits, and accommodations that could improve their quality of life.
Many in the community may be missing out on health care options, benefits, and accommodations that could improve their quality of life.
Therefore, it’s imperative to make healthcare information more accessible and easier to understand.
The researchers noted that government initiatives are already in place to address health literacy concerns. The Centers for Disease Control and Prevention (CDC) formulated the Health Literacy Action Plan, which has three goals:
Develop and share health and safety information that is accurate, accessible, and actionable;
Integrate clear communication into public health funding and planning, research, policy development, and evaluation; and
Incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula from preschool to university level.
When this plan is implemented, it may address challenges related to knowledge gaps identified in the survey.
On another note, we at Amputee Store will remain committed to bringing you information that may improve your or a loved one’s quality of life.
3. Integrated physical and mental healthcare
The survey respondents’ top mental health and physical priorities are “the ability to exercise” and “strength and balance.” They also noted that they lack access to techniques for better sleep and non-opioid pain management, which they considered physical and mental health priorities.
According to the researchers, these findings suggest that it’s best to consider the unique mental health and physical priorities of people with limb loss and limb difference when making policy solutions that affect the community. Since most people with disabilities don’t have access to integrated mental health and physical care nor access to mental health providers who genuinely understand their patient’s needs, it’s vital to eliminate the barriers, particularly in underrepresented communities.
The bottom line
The survey is instrumental in kickstarting the changes the community needs. It also shows us where the gaps are regarding access to the care the community requires.
However, the researchers noted that additional research is needed to better understand existing gaps in integrated health care. Findings from future studies would ideally help provide targeted policy solutions to improve health care for people with limb loss and limb difference in urban and rural communities.
What do you think of these findings? Are there other health priorities you would have wanted to see in the top three?