The Impact of the Current Accessibility of Insulin Pumps on the Lives of the Visually Impaired in Canada

By Michael G. A. Trolio, Kat Hamilton, and Mahadeo A. Sukhai

Michael G. A. Trolio is a researcher at the Canadian National Institute for the Blind (CNIB). He first started working with the CNIB in 2019 and has continued to be an advocate for individuals with sight loss since. His background in analytical chemistry guides him in critically researching issues currently affecting individuals living with sight loss or blindness.

Kat Hamilton is Senior Manager, Advocacy and Public Education for the Canadian National Institute for the Blind. Ms. Hamilton is an experienced and well-respected social change campaigner and government relations professional who specializes in disability rights advocacy. Through building strong community relationships alongside grassroots organizers and stakeholder organizations, she has successfully spearheaded systemic changes in policy through her campaigning.

Mahadeo A. Sukhai is the world’s first congenitally blind biomedical research scientist. He is also Vice-President Research & International Affairs and Chief Accessibility Officer at the Canadian National Institute for the Blind. Dr. Sukhai is Principal Investigator for and co-author of Creating a Culture of Accessibility in the Sciences, a book based on his groundbreaking work on access to science within higher education. He continues to work on a variety of projects and contribute to the work of governments and other non-profits in the areas of accessibility and sight loss and blindness.

Abstract

Over 1.5 million adult Canadians identify as living with some degree of sight loss, with an estimated 5.59 million diagnosed with an eye disease that may result in sight loss. Diabetic retinopathy is one of the leading causes of blindness in Canada, with the risk of blindness being 25 times greater for individuals with diabetic retinopathy. Vision challenges and blindness associated with diabetic retinopathy can be prevented or mitigated with the proper management of blood glucose and blood pressure, yet established methods for measuring and mediating such physiological states have proved inaccessible for individuals with sight loss and diabetes. Herein, we examined the accessibility barriers experienced by Canadians with sight loss and diabetes in use of insulin pump devices. We also identify the current inaccessibility of insulin devices experienced by Canadians with sight loss and diabetes and the impact these gaps in accessibility have on their physical and emotional quality of life.

Keywords

Insulin pump accessibility, persons with sight loss and diabetes, insulin device accessibility, insulin pump

Introduction

Over 1.5 million adult Canadians identify as living with some degree of sight loss (Statistics Canada, 2018), with an estimated 5.59 million diagnosed with an eye disease that may result in sight loss (Canadian National Institute for the Blind, 2020). The prevalence of the four leading causes of age-related blindness – diabetic retinopathy, age-related macular degeneration, glaucoma, and cataracts – increase exponentially with age, with the number of cases of sight loss diagnosed doubling every decade after the age of 40 (Canadian Ophthalmological Society, 2019).

It is true that an ageing population will result in a higher prevalence of sight loss amongst Canadians, with the challenges associated with sight loss following as a consequence. Individuals with sight loss experience double the incidence of falls, triple the incidence of depression, and double the mortality rate of sighted individuals (Canadian Ophthalmological Society, 2012). These experiences are not unique to the Canadian population. Over 400 million individuals worldwide are blind or partially sighted, with sight loss acting as an increasing cause of poverty in both developed and developing nations alike (Vision 2020 Canada, 2020).

The impact of sight loss can have a demanding effect on the quality of life of individuals, with blindness leading to a wide range of physical, social, emotional, and economic problems (Khorrami-Nejad et al., 2016). The acceptance of sight loss or sight deterioration is frightening and overwhelming to most individuals; the fear associated with the potential loss of independence, paying for medical care, and retaining employment is often burdensome and onerous (Goldstein et al., 2012). The prevalence of depression is increased in individuals with visual impairments when compared to sighted individuals, 18.2% versus 12.0%. This trend is consistent with other mental health conditions such as learning disabilities, anorexia/bulimia, psychoactive substance misuse, anxiety, alcohol misuse, schizophrenia, and dementia (Court et al., 2014). Similar can be said regarding physical conditions; blind individuals experience poorer health, difficulties walking, increased prevalence of homeostatic ailments (diabetes, heart problems, breathing problems), and are more likely to be physically inactive when compared to individuals with full sight (Jones et al., 2010).

Diabetic retinopathy is one of the leading causes of blindness in Canada with the risk of blindness being 25 times greater for individuals with diabetic retinopathy (Altomare et al., 2018). Diabetic retinopathy is caused by high blood glucose due to diabetes and is related to the duration of an individual’s diabetes. Over time, having excessive glucose in the blood can damage an individual’s retina and lead to sight loss and, eventually, blindness. Visual challenges and blindness associated with diabetic retinopathy can be prevented or mitigated with the proper management of blood glucose and blood pressure. However, established methods for measuring and mediating such physiological states have proved inaccessible for the sight-loss community. As is with many electronic devices, insulin pumps are not designed with input from the sight-loss community, making effective insulin therapy near impossible using insulin pumps.

Indeed, as of 2004, reports highlighting accessibility issues with market-available insulin pumps in the United States identified problems associated with available pumps’ visual displays, lack of tactilely identifiable buttons, and general pump maintenance. Conclusions at that time were that the lack of visual accessibility, lack of meaningful tactile or audio feedback, and presence of complex battery and insulin reservoir systems meant that a person who is blind or has low vision would require sighted assistance when using their pump, or otherwise risk improper and dangerous device use (Uslan et al., 2004). Furthermore, in a follow-up study 4 years later, research focusing on FDA-approved insulin pumps demonstrated that market-ready insulin pumps in 2008 were no more accessible than those offered 4 years prior. The previously identified barriers were still evident, marking no substantial progress in accessibility to persons who function non-visually. To rectify the state of insulin pumps in 2008, researchers recommended that insulin pump manufacturers modify their models such that speech output, high-contrast visual displays, visually accessible manuals, and prefilled insulin cartridges rather than manual filled cartridges, be requisite features of all future devices (Burton et al., 2009). A literature review study completed in 2010 further confirmed reports that claimed insulin pumps had insufficient features that were compatible for those with diabetes and sight loss. Specifically, the review reaffirmed reports of a lack of accessibility surrounding insulin pumps’ menu navigation, display information, control buttons, insulin reservoir maintenance, battery replacement, software, and documentation (Marom, 2010). Finally, research focusing on the U.S. market conducted in 2014 provides the most up-to-date insight into the current status of the accessibility of insulin pumps for those with partial sight or blindness in North America. Results demonstrated minimal improvements in the accessibility of insulin pumps since previous studies conducted in 2004 and 2008, with no market-ready insulin pump possessing speech output, or other visually accessible forms of information feedback (Reuschel & Uslan, 2014). 

Over the years, the Canadian National Institute for the Blind (CNIB) has received numerous anecdotal complaints from Canadians living with diabetes and sight loss regarding the inaccessibility of their insulin pumps. End users reported being unable to independently or safely use their insulin pump because the device must be navigated solely using visual features on a display screen. In response to such reports, we performed a current literature review seeking up-to-date and geographically relevant information surrounding the current accessibility of insulin devices in North America, Canada more specifically. To the best of our knowledge, the most pertinent research was out of date, not geographically relevant, and focused solely on the features of insulin pumps rather than how a lack of accessibility of insulin pumps impacts the lives of individuals with sight loss. It is important that researchers consult the community to which they claim to advocate for, yet no such efforts have been sufficiently made.

Uncovering obstacles currently evading leaders of the health-care field and insulin pump manufacturers may lead to change that could increase the quality of life for individuals with sight loss and diabetes. This study aims to uncover the current status of insulin pump accessibility in Canada, as well as discover how inaccessibility impacts the lives of those with sight loss. To the best of our knowledge, no study has attempted to uncover the accessibility of insulin devices and its impact on the quality of physical and mental health of those with partial sight loss or blindness to this extent before.

Methods

A qualitative and quantitative approach was used in this descriptive and analytical study. Data was collected from blind individuals, partially sighted individuals, or a proxy using a questionnaire. Focus groups were used to design a trilingual (English, French, Spanish) survey instrument that was distributed to obtain information regarding the accessibility of insulin devices. The items used in the questionnaire were open- and closed-ended qualitative and quantitative questions that focused on the accessibility of insulin devices for those with sight loss or blindness. Inclusion criteria consisted of male and female individuals, aged 18 or older (legal adult), who have partial sight loss or blindness. The survey instrument is included in the Supplemental Material. This study was developed according to the CNIB’s ethical research guidelines and was approved by the CNIB’s internal ethics committee.

Survey participants were recruited through the CNIB’s and community partners’ networks of individuals who were blind or partially sighted, and who were also living with diabetes, as well as the CNIB’s networks of care givers and healthcare providers. One hundred seventy-seven respondents over the age of 18 completed the English, French, or Spanish survey; 96% of respondents completed the survey in English, 4% completed the survey in French, and no respondent completed the survey in Spanish. Of respondents, 66% were persons living with diabetes and sight loss, 17% were friends/family members/caregivers supporting someone with diabetes and sight loss answering as a proxy, and 4% were medical professionals supporting individuals with diabetes and sight loss answering as a proxy or advocate. Furthermore, 79% of respondents identified as owning a smartphone.

All qualitative responses were analyzed through categorical data analysis. For each survey question with qualitative responses, data was grouped into common categorical themes. If appropriate, the observed responses were grouped into multiple categories as certain responses touched upon multiple categorical themes.

Of the respondents who identified the insulin pump brand they currently use, 65% reported using Minimed, 15% reported using Omnipod, 3% reported using T-Slim, and 3% reported using YpsoPump. Furthermore, 49% of respondents reported using an insulin pen to administer insulin, 28% reported using an insulin pump to administer insulin, 18% reported not administering insulin, and 4% reported administering insulin with a syringe.

Results

Advice Received About the Use of Insulin Pumps

About 20% of individuals reported being advised against using insulin pumps at some point in their life. These individuals were told that the visual displays of insulin pumps were insufficiently accessible for their use (48%); or that they would not be able to operate the device safely alone (29%); or that the lack of alternative feedback mechanisms to device displays, such as tactile and audio feedback, would make the device unusable (24%). The sources advising individuals against the use of insulin pumps ranged from pump manufacturers (30%), pump nurses (21%), endocrinologists (21%), and healthcare organization websites (8%). The majority of respondents were currently unaware of any insulin pump with some degree of accessibility for those with sight loss (86%). Some of the open-ended responses towards this line of questioning included:

  • [I was told that] I would need sighted assistance to monitor and load a pump and I live alone.
  • [Pump has] a touch pad with no tactile markings or sequence of beep tones to indicate functions being performed.
  • Pump writing was difficult to see. Text very small and the menu wasn't backlit.
  • Pump sales representative just kept saying it is not recommended. No specifics were given.
  • There was nothing with large print/digital. I don't remember any of them having voice prompts. No braille on the buttons.

Accessibility Features of Current Insulin Pumps

When asked to describe the design features that make existing insulin pumps accessible, 40% of respondents responded with “informative audio feedback,” 20% responded with “meaningful haptic feedback (vibrations),” 20% responded with “quality display accessibility options (high-contrast displays, magnification options, non-touchscreen input alternatives),” and 20% with “offers the ability of smartphone integration.” Some of the open-ended responses towards this line of questioning included:

  • I have learned a pattern of pressing certain buttons a certain number of times to take my own insulin - the number of clicks followed by a certain number of beeps helps me a huge amount.
  • [My pump has] audible clicks to indicate unit measurement and release.
  • My pump results links to my smartphone.
  • Most newer pumps have become a little more accessible to people with low sight because they have higher contrast displays, such as the YpsoPump which has an OLED display. (However, touchscreens also make pumps less accessible in many ways.) The Accu-Chek Insight also had a magnification feature.

Current Lack of Accessibility Features of Insulin Pumps

When asked what barriers stood in the way of independently using an insulin pump, the majority of respondents reported that current pumps lacked sufficiently accessible visual displays (35.5%), lacked accessible feedback on insulin dosage administered (i.e., insufficient/excessive quantity of insulin administered; 17.2%), were challenging to set up on the body alone (e.g., needle disposal, injection location, requiring setup assistance from another individual; 14.0%), possessed inaccessible device maintenance requirements (e.g., changing batteries, replacing insulin reservoir; 11.8%), lack of meaningful audio feedback (9.7%), and other problems (e.g., cost, manual inaccessibility; 11.8%). Some of the open-ended responses towards this line of questioning included:

  • [Inputs] have to be entered by sighted person; initial setup, cannula, reservoir, etc. Replacement all require assistance from sighted person; cannula disconnection & other malfunctions typically require assistance from sighted person.
  • Everything is so tiny. The dial on the pens, the writing on insulin syringes, and the screens on the pumps. Also, when not using a pump, selecting a spot for injection can be challenging. You don't want to keep injecting over a damaged area. So many challenges.
  • I must memorize our menus in order to use some of the functions but am unable to use the insulin pumps to their full potential and deal with a degree of fear when trying to utilize it independently.
  • [I am] unable to clearly see how many units, cannot hear the clicks, unable to safely see where to inject, covering the needle without being poked in the finger.
  • Inability to read small text or see small icons on the pump (I have to use my iPhone or a CCTV to magnify). Problems with accurately aiming for and activating touchscreen controls. Difficulty confirming boluses and basal settings (due to, for example, 8 and 6 and 0 looking almost identical, even with magnification). I have major concerns that, if my sight were any worse than it is, I would no longer have the option of using an insulin pump (unless new accessible options became available). The desktop and online software that work with the pump (for downloading data to review or share with healthcare providers) is not screen reader accessible and is has some very low contrast text that is very hard to read even with screen magnification software.

Impact of the Lack of Accessibility of Insulin Pumps on the Lives of Individuals With Sight Loss

Individuals with sight loss and diabetes reported experiencing a wide array of mental and physical fears and concerns due to the inability to use their insulin device to their full extent and as a result of being unable to operate their insulin pump safely. Individuals overwhelmingly reported being concerned about inadvertently causing self-harm due to incorrect insulin dosage administration (64.3%). Individuals further reported having daily fears over being able to have access to a sighted person throughout the day to aid in insulin administration (16.7%). Likewise, individuals were also concerned of inadvertently causing self-harm not related to insulin dosing (e.g., needle disposal, finding a proper injection location, bruising; 7.1%), device malfunction (4.8%), and other reasons (e.g., cost, battery replacement, insulin replacement; 7.1%). Some of the open-ended responses towards this line of questioning included:

  • [I currently fear about] killing myself with an overdose.
  • [I fear about] overdosing and not knowing it until it is too late. I [fear about] injecting in the wrong spot or needles breaking.
  • [I am concerned that] no step has been missed in reservoir replacement, that cannula stays in place, [and] that no other malfunctions occur.
  • [I am concerned of] either delivering an incorrect dosage thus causing either hyper- or hypoglycemia, as well as missed boluses, as they can happen if you are not paying attention.
  • I fear that my older and sight impaired clients will give themselves too much insulin and have a low and fall or go into a coma.

Suggested Insulin Pumps Improvements

When asked if improvements could be made to current insulin pumps in Canada, individuals overwhelming recommended:

  1. Addition or improvement of audio or tactile feedback (e.g., voices/beeps/tones/vibrations when pressing buttons or when administering insulin).
  2. Addition or improvement of visual feedback (e.g., higher contrast displays or magnification options).
  3. Integration of their pump with a smartphone or computer.

Some of the open-ended responses towards this line of questioning included:

  • First and foremost, companies need to start making accessible designs and treat user testing with people with disabilities as a high priority in the development of new products. As to specific features, providing some means of screen reader/speech access. Either by including a screen reader on the pump itself, or by having an accessible app on a mobile device that could be used to fully control all features of the pump through a Bluetooth connection (or similar). All apps that are made to pair with these medical devices should be built for full accessibility with the operating system's accessibility features, such as screen readers.
  • [Companies] can provide an insulin pump that has both tactile and audible voice instructions that function to guide your actions you are wanting the pump to act upon.
  • Make [pumps] completely accessible, like an iPhone. Make the font bolder and a bit higher contrast for those with low sight and add an audible tone so that if I'm scrolling through the menus there's a little beep that happens every time I scroll through headings - that way I can count how many headings I've actually scrolled through. For example, if I want to prime my pump, I could memorize that it's heading number four and click OK on that menu. This is not the most accessible way of doing things, however it will help people who are low vision who may not use voiceover but having voiceover would be the most accessible, if it had a feature like Siri where I could ask it questions like to administer five units of bolus or to change the date and time that would be great.
  • [Include] voice control options, braille on the pumps/buttons, and talking feature on the pump.
  • Increase audio options for those who need them. Increase the level of safety - I have used a pump for over 30 years - give me a break!

What Could a World With Accessible Insulin Devices Look Like?

When asked to describe how the lives of individuals with sight loss would change if they were able to utilize all of the features of insulin pumps fully, respondents listed the following lifestyle improvements: increased independence (34%), increased control over their blood glucose levels (17%), improved health/decreased concerns about their safety (16%), reduced anxiety (14%), improved ease of condition management (11%), and increased confidence (8%). Some of the open-ended responses towards this line of questioning included:

  • It would increase my independence level dramatically. At the moment, I feel insecure about travelling or being on an airplane with people I don't know in case something goes wrong with my pump. I often have to get a family member to change the date and time when daylight savings time happens, if this was done automatically like your iPhone that would be fantastic.
  • My independence would be restored. [I] would not have to explain what to do each time I required help. [I] would not worry that people might make mistakes. [I would be] able to take care of myself.
  • It would improve the management of the long-term effects of diabetes and prolong the life and independence of diabetics.
  • [I] would be able to maintain proper blood levels, reduced highs and lows. Much improved daily life without the need to stop activities in order to test, prepare, and inject insulin without assistance to ensure correct dosing. Reduced cost to health care system because of better compliance in maintaining proper blood levels which has a direct impact on healthcare costs due to lower health complications from diabetes.
  • Greatly improved! Diabetics rely on the amount of information from our pumps - I am giving and receiving only 10% of the information that the pump tracks substantially hindering diabetic treatment.

Discussion

This study aimed to highlight issues currently faced by those with sight loss and diabetes in regard to their use of insulin devices. Our research built upon previous studies focusing on the accessibility of insulin devices and introduced an emphasis on first-hand testimonies from partially sighted and blind individuals. We observed many accessibility barriers with the current market-available insulin devices and demonstrated that minimal change has been enacted since reports of these issues were first uncovered over 17 years ago. For the first time, we identified details on how insulin device inaccessibility impacts the lives of those with partial sight loss and blindness. We hope such information will prove valuable in designing future accessible insulin devices and in further advocacy efforts across the globe.

Individuals with diabetes and visual impairments have long been ignored and neglected in the development of insulin devices. Our research demonstrates that current insulin devices lack accessible visual, audio, and tactile feedback mechanisms. It is clear that minimal efforts are being made towards accommodating the sight-loss community. For example, our results show that relatively simple accommodations, such as braille instruction manuals, are not currently being offered to end users. Furthermore, it is evident from the open-ended comments obtained that those with diabetes and partial sight or blindness are fearful of causing self-harm by incorrectly administering their insulin doses as a result of the lack of accessibility in their insulin devices.

By inquiring how the lives of respondents would change if they could fully utilize their insulin devices, we can imagine a version of our world where individuals with sight loss and diabetes are more independent, confident, and better capable of managing their condition. These testimonies illustrate the need for change to be enacted. In our opinion, speech output is the most important step towards full accessibility as it would permit individuals who are blind or have low vision to safely and independently use their insulin pump. We suggest that insulin device manufacturers incorporate such improvements and consider introducing further accessibility options such as meaningful audio and tactile feedback (voices/beeps/tones/vibrations) when pressing buttons or administering insulin from their devices. A further consideration for the addition or improvement of visual feedback, such as higher contrast displays or magnification options and integration of an insulin device pump with a smart device, could drastically improve the lives of individuals with sight loss and diabetes. In theory, the majority of the problems highlighted in this report could be addressed via a well-designed smartphone app, which could facilitate integration with the insulin pump and other insulin devices (i.e., blood glucose meter); since our survey found that 79.0% of respondents own a smartphone, this solution is feasible.

Implication for Practitioners and Families

This paper serves as a formal request for change by insulin pump manufacturers in North America and abroad. The lack of accessibility in insulin devices has been investigated globally for over 17 years, although minimal change has been reported. Insulin pump manufacturers must consider the sight-loss community in the retrofitting of existing and the designing of future insulin devices. The testimonies of neglected individuals highlighted in this study demonstrate the negative impact of insulin pump manufacturers' choices on this “forgotten” diabetic community. Insulin pump manufacturers are responsible for ensuring that a significant segment of their end-user market can safely use their devices and should enact change as soon as possible. In working together, we can facilitate a world that promotes equal status, rights, and opportunities for all individuals, especially those in marginalized communities.

Conclusion

Insulin pumps currently offered on the Canadian market are not accessible for those with sight loss. The majority of pump users require the assistance of sighted individuals to safely and adequately use their devices. This research identified many accessibility challenges associated with current pumps, such as a lack of haptic feedback (i.e., vibrations), a lack of tactile feedback (i.e., buttons designed for accessibility), and a lack of sufficient audio feedback and visual feedback. Our findings demonstrate that individuals with sight loss and diabetes are distressed about this accessibility issue and would greatly benefit from more accessible insulin devices. Respondents of our survey reported being fearful of causing self-harm by incorrectly administering their insulin doses or by not being able to operate the device alone. Respondents also reported that they would be more independent, confident, and better able to manage their condition if they could fully utilize features of insulin pumps alone.

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