Abstract
Assistive devices are prescribed for amyotrophic lateral sclerosis (ALS) patients with motor deficits, but little is known about their perceived benefit. Therefore, we assessed ALS patients’ satisfaction with commonly prescribed devices.
Methods
A telephone survey of 63 ALS patients from a single multidisciplinary clinic was conducted to assess the frequency of use, perceived usefulness, and satisfaction with 33 assistive devices.
Results
Of those assistive technologies used “often or always” by ≥ 20% of respondents, arm rails by the toilet, elevated toilet seat, shower seat, shower bars, and slip-on shoes were ranked very highly, for both usefulness and satisfaction. The ankle brace for ambulation, transfer board, speaker phone, and electronic seating controls were ranked highly. The button hook, dressing stick, and long-handled reaching tool received low ratings for both usefulness and satisfaction.
Conclusions
ALS patients reported high usefulness and satisfaction with all bathroom adaptive devices and certain low technology devices.
Keywords: Amyotrophic Lateral Sclerosis, Rehabilitation, Survey, Assistive Technology, Activities of Daily Living
Introduction
Amyotrophic lateral sclerosis (ALS) is a degenerative disorder of motor neurons that results in progressive muscle weakness. As a result of weakness, patients with ALS have physical impairments that affect their activities of daily living (ADL). Clinical management recommendations for ALS patients with physical impairments include medical provider assessment and prescription of assistive devices to improve their function, maintain independence, and decrease fatigue1–4. While there has been some assessment of patient satisfaction with wheelchairs,5 there is little information about the reported usefulness of, and satisfaction with, commonly prescribed assistive devices. Understanding the usefulness of current assistive devices from the patient’s point of view may aid in clinical practice and in the development of future assistive technology. The purpose of this study was to determine the reported usefulness of and satisfaction with current assistive devices among patients with ALS.
Materials and Methods
ALS patients followed in the University of Michigan multidisciplinary ALS clinic from March 2008 to July 2009 were identified (n= 96). A telephone survey was administered, and responses were recorded anonymously. Proxy responses were not used, but information was sometimes conveyed to and from the patient by a caregiver. The survey instrument addressed four general topic areas: (1) demographics; (2) caregivers and dwelling; (3) functional impairments; and (4) assistive devices. Each of these four sections is described in more detail below.
Demographic information included age, gender, race and ethnicity, and economic status. Data from the U.S. Census Bureau, 2006–2008 American Community Survey 3-year Estimates for the state of Michigan were used for income status comparison6. Census data frequencies were rounded to the nearest whole integer; income data were collapsed to two categories: ≤ $49,999 and ≥$50,000 for comparison to our survey income categories. The number and type of people who served as caregivers for each survey respondent was collected. A single item assessed dwelling type and included single family home, multi-family or group home, apartment-style residence, assisted living facility, or other. Functional status was measured by the ALS Functional Rating Scale-Revised (ALS-FRS-R)7. Finally, respondents were asked about their frequency of use, perceived usefulness, and satisfaction with several different types of assistive devices (listed in tables 1 and 2). Frequency of use was recorded on a 5-point scale from “never” to “always” (see tables). Device usefulness and satisfaction were each recorded on a 10-point scale where 1 = “not at all” and 10 = “extremely well/satisfied”. The 10-point scale was employed in an attempt to capture a greater range of device usefulness and satisfaction responses. The types of assistive devices investigated in this study were divided into six different categories of ADL: mobility, communication, eating, dressing, bathing/toileting, and using environmental controls. Additionally, the respondent rated the importance of independence with each ADL domain on a scale of 1 to 10, and higher scores indicated greater importance.
Table 1.
Mobility, Communication, and Eating Assistive Device Use and Satisfaction
| Frequency n (%) | Median (IQR) | ||||
|---|---|---|---|---|---|
| ADL & ASSISTIVE DEVICE | NEVER | RARELY/ SOMETIMES |
OFTEN/ ALWAYS |
HOW WELL does the device work? |
HOW SATISFIED are you with the device? |
| MOBILITY | |||||
| Cane | 28 (44%) | 24 (38%) | 11 (18%) | 5 (4,8) | 5 (5,8) |
| Walker | 32 (51%) | 18 (29%) | 13 (20%) | 7 (5,9) | 5 (5,8) |
| Non-motorized wheelchair | 50 (79%) | 10 (16%) | 3 (5%) | 5 (2,7) | 5 (4,5) |
| Motorized scooter at home or store* | 53 (85%) | 6 (10%) | 3 (5%) | 9 (6,10) | 8 (5,10) |
| Motorized wheelchair | 36 (57%) | 10 (16%) | 17 (27%) | 7 (5,8) | 5 (5,9) |
| Ankle brace | 29 (46%) | 14 (22%) | 20 (32%) | 9 (5,10) | 8 (5,10) |
| Sliding or transfer board | 26 (38%) | 10 (16%) | 29 (46%) | 9 (8,10) | 8 (5,10) |
| In-home hydraulic lift* | 56 (90%) | 2 (4%) | 4 (7%) | 7 (5,10) | 7 (6,9) |
| COMMUNICATION | |||||
| Write on paper | 20 (32%) | 23 (37%) | 20 (31%) | 5 (4,7) | 5 (3,10) |
| Portable erase board | 49 (78%) | 11 (17%) | 3 (5%) | 5 (4,7) | 5 (3,5) |
| Letter, word, or picture board | 60 (95%) | 1 (2%) | 2 (3%) | 8 (7,9) | 10 (8,10) |
| Laptop computer | 16 (25%) | 26 (41%) | 21 (34%) | 7 (5,10) | 5 (5,10) |
| PDA or Palm Pilot | 34 (54%) | 15 (24%) | 14 (22%) | 7 (5,10) | 6 (5,10) |
| Electronic speaking device* | 54 (87%) | 8 (13%) | none | 5 (4,7) | 5 (2,6) |
| EATING | |||||
| Modified eating utensils | 38 (60%) | 12 (19%) | 13 (21%) | 5 (5,8) | 5 (5,8) |
| Wrist braces | 37 (59%) | 9 (14%) | 17 (27%) | 5 (5,8) | 5 (5,7) |
| Mobile arm supports | 50 (79%) | 6 (10%) | 7 (11%) | 5 (2,8) | 5 (5,5) |
n=62
ADL, activities of daily living; PDA, personal digital assistant
Table 2.
Dressing, Bathroom, and Environmental Control Assistive Device Use and Satisfaction
| Frequency n (%) | Median (IQR) | ||||
|---|---|---|---|---|---|
| ADL & ASSITIVE DEVICE | NEVER | RARELY/ SOMETIMES |
OFTEN/ ALWAYS |
HOW WELL does the Device work? |
HOW SATISFIED are you with the Device? |
| DRESSING | |||||
| Zipper pull | 50 (79%) | 7 (12%) | 6 (10%) | 5 (4,5) | 5 (3,5) |
| Button hook | 57 (90%) | 5 (8%) | 1 (2%) | 4 (2,5) | 4 (1,5) |
| Dressing stick with hook | 51 (81%) | 8 (13%) | 4 (6%) | 4 (3,5) | 4 (2,5) |
| Sock aid | 51 (81%) | 8 (13%) | 4 (6%) | 5 (5,5) | 5 (4,5) |
| Slip- on shoes or shoes without laces | 22 (35%) | 6 (10%) | 35 (55%) | 10 (9,10) | 10 (5,10) |
| BATHROOM FUNCTION | |||||
| Arm rails by the toilet | 26 (41%) | 12 (19%) | 25 (40%) | 10 (5,10) | 10 (5,10) |
| Elevated toilet seat, riser, commode | 33 (52%) | 5 (8%) | 25 (40%) | 10 (8,10) | 10 (8,10) |
| Shower seat or chair | 31 (49%) | 2 (3%) | 30 (48%) | 10 (9,10) | 10 (10,10) |
| Shower bars | 29 (46%) | 7 (11%) | 27 (43%) | 10 (9,10) | 10 (8,10) |
| ENVIRONMENTAL CONTROL | |||||
| Large push-button telephone | 58 (92%) | 2 (3%) | 3 (5%) | 8 (6,8) | 5 (5,8) |
| Speaker phone | 28 (44%) | 19 (30%) | 16 (26%) | 8 (7,10) | 8 (5,10) |
| Large button remote control for TV, light, etc | 50 (79%) | 11 (18%) | 2 (3%) | 7 (5,8) | 7 (5,8) |
| Sound or voice activated control | 59 (94%) | 3 (5%) | 1 (1%) | 8 (8,10) | 8 (5,10) |
| Long-handled reaching tool | 51 (81%) | 10 (16%) | 2 (3%) | 2 (1,5) | 1 (1,4) |
| Electronic bed control | 47 (75%) | 6 (10%) | 10 (15%) | 8 (5,10) | 9 (5,10) |
| Electric seating controls for recliner or wheelchair | 38 (60%) | 7 (12%) | 18 (29%) | 8 (5,9) | 8 (5,9) |
n=62
ADL, activities of daily living; TV, television
Frequencies and percentages or medians and interquartile ranges (IQR) were calculated as appropriate using S-plus 7.0 for Windows. For results recorded on a scale of 1 to 10, the median scores were classified on a 5 point descriptive scale: 1 or 2=”very low”, 3 or 4=”low”, 5 or 6=”medium”, 7 or 8=”high”, and 9 or 10=”very high”. The 5 point descriptive scale (very low, low, medium, high, or very high) was then used to describe the device usefulness and satisfaction results in text while medians and IQR are presented in tables. We defined device usage as “high frequency use” if the device was used “often” or “always” by at least 20% of the ALS subjects surveyed. This study was approved by the Institutional Review Board of the University of Michigan Medical School.
Results
Of the 96 ALS patients identified, 65 (68%) were reachable by phone and completed the survey. Of the 65 surveyed, two were proxy responses and were removed from further analysis to yield a final sample of 63 ALS subjects. The median age was 62 years (IQR: 52, 72); 37 (59%) were male, and 52 (83%) reported limb-onset symptoms. The median duration between the diagnosis and survey was 26 months (17, 50), and the median ALS-FRS-R score was 25 (18, 33).
The majority of respondents self-identified as Caucasian (71%) and non-Hispanic (87%), while the rest identified as African-American (2%), multiracial (6%), or something else (8%). Only 3% endorsed Hispanic ethnicity. In terms of economic status, 40% reported an income ≤$49,999, and 36% reported ≥$50,000. These sample data are similar to U.S. Census statistics that show half the population of Michigan has an income ≤$49,999 and half ≥$50,000.
The majority of respondents indicated that they live in a single family home or apartment (85%); 5 (8%) reported living in a facility that provides assistance, with the remaining 6% living in a multi-family, group home, or other response. Most respondents (n=52 or 83%) reported having a caregiver. Of those with a caregiver, a majority (79%) had one (n=24) or two (n=17) caregivers, while 21% reported three or more caregivers. Family members were most frequently cited (93%), but caregivers also included friends (37%), employees (38%), and respite-care workers (10%).
Frequency of use, usefulness of, and satisfaction with assistive technology devices are found in tables 1 and 2. Sixteen of the thirty-three devices surveyed were designated as high frequency use with devices used “often or always” by 20–55% of respondents and included: walker, motorized wheelchair, ankle brace for ambulation, sliding transfer board, writing on paper to communicate, laptop computer, personal digital assistant (PDA), modified eating utensils, wrist braces, slip-on shoes, arm rails by the toilet, elevated toilet seat, shower seat, shower bars, speaker phone, and electric seating controls for a recliner or wheelchair.
Among those devices with high frequency use, the ankle brace, transfer board, all bathroom devices, slip-on shoes, speaker phone and electronic seating controls received a high or very high median rating for both how well the device worked and satisfaction with the device. Walkers, motorized wheelchairs, PDAs, and laptop computers all received high median ratings for how well each worked, but the satisfaction scores were lower for each device. Only a small number of ALS patients reported using motorized scooters; letter, word or picture boards; electronic bed controls; and sound or voice-activated environmental controls. All four devices, however, were rated as very high both for how well the device worked and satisfaction (tables 1 and 2).
In contrast, the button hook, dressing stick with hook, and long-handled reaching tool (table 2) all received low or very low median ratings of usefulness and satisfaction.
Finally, patients with ALS were asked to rate the importance of each functional ability domain to their own independence. While all 6 domains received universally high ratings, two domains – communication and bathroom function – received a median score of 10 on the 10-point scale (fig. 1).
Figure 1.
ALS patients’ self reported importance of independence for each activity of daily living category. Importance was rated on a 10-point scale from “not at all important” to “extremely important”. The box plots demonstrate the median value (solid dot), with the first and third quartiles outlined by the box, and individual outliers shown as unfilled dots. The box plot whiskers extend to the extreme values of the data or a distance 1.5 times the intra-quartile distance from the center, whichever is less.
Discussion
This cross-sectional telephone survey of a cohort of ALS patients from a single multidisciplinary clinic found that bathroom adaptive devices were uniformly the most frequently used and received the highest reported usefulness and satisfaction scores. Additionally, of those assistive technologies used often or always by ≥ 20% of respondents, the ankle brace, transfer board, slip-on shoes, speaker phone, and electronic seating controls were ranked highly for both usefulness and satisfaction. Although motorized wheelchairs were used frequently by more than a quarter of respondents, the overall satisfaction with motorized wheelchairs was only moderate.
This study is one of the first to describe in detail ALS patients’ self-report of assistive technologies. We examined not only the frequency of device use but also patient-centered indicators of usefulness and satisfaction. Other researchers have queried patients about satisfaction with a specific technology, such as wheelchairs 5. Trails et al found that ALS patients who used a motorized wheelchair reported significantly higher satisfaction with their activity level than manual wheelchair users, but no significant differences were found with respect to comfort, ease of maneuvering, or portability. Our data are similar to Trails et al in that our respondents reported a relatively high median score for how well a motorized wheelchair worked, but satisfaction with both non-motorized and motorized wheelchairs was only moderate. While motorized wheelchairs offer desirable functions, including independent mobility and tilt/recline features, their large size and reduced portability may decrease overall satisfaction 5. Improved motorized wheelchair functions that optimize comfort and portability while allowing users to maintain control of the chair may increase ALS subject satisfaction with this expensive medical equipment.
Interestingly, we found low technology assistive devices such as ankle braces for ambulation, transfer boards, slip-on shoes, and speaker phones were used frequently and rated quite highly in usefulness and overall satisfaction. All four of these devices can be easily prescribed or recommended to the patient and, in some cases, provided during the multidisciplinary clinic visit. Not all low technology assistive devices, however, were rated as highly. While dressing sticks, button hooks, and long-handled reaching tools may assist some subjects with weakened upper limb function, these three devices received lower usefulness and satisfaction scores. Efforts to use these devices to perform tasks with an already weakened upper extremity may be more cumbersome and worsen fatigue.
Although used by a minority of respondents, we found it of interest that motorized scooters; letter, word or picture boards for communication; and sound or voice activated environmental controls were rated very highly in both usefulness and satisfaction. We were also surprised to find a high frequency of laptop computers and personal digital assistants (PDAs) used for communication. Although these two devices were rated highly for how well the devices worked, overall satisfaction was only moderate. The discrepancy between usefulness and satisfaction ratings for portable electronic devices is unclear. It may be that ALS patients find that these devices function well and provide convenience along with many communication formats such as email, instant messaging, and electronic social networks. However satisfaction may be decreased if the individual has limited ability to interface with the device due to limb weakness. Further investigation into ALS patient use of these two common devices may lead to improved satisfaction and expanded use of portable electronic devices for communication. Although electronic speaking devices were used by only 13% (n=8) of ALS respondents, these devices received the same, medium, rating as did writing on paper for both usefulness and satisfaction in communication. Our findings suggest further investigation is needed in order to improve ALS patient satisfaction with current, electronic speaking devices.
Across the board, ALS subjects rated independent function with activities of daily living quite high. The current sample of patients rated independent function with communication and bathroom activities most highly. Therefore, medical providers should pay particular attention to optimize assistive technology for both communication and bathroom activities.
Limitations: Not all possible assistive technologies were assessed with this survey. Still, the variety of devices assessed was quite broad in terms of complexity of device technology, and we surveyed devices across different activities of daily living. Given that ALS patients were surveyed from a single academic clinic, the results may not apply to all ALS patients. Furthermore, ALS patients who participate in our multidisciplinary clinic may have a higher socioeconomic status and therefore have greater access to assistive technology. However, this seems unlikely since our respondents were relatively representative of the income status of the state of Michigan. While we were able to survey 68% of our clinic population, it is unknown if the remaining individuals, who were unavailable for the phone survey, would have reported similar responses. Lastly, given the cross-sectional study design of our survey and the changing needs of ALS patients, this study cannot correlate change in ALS patient function, as assessed by the ALS-FRS-R, with assistive device usefulness and satisfaction. Further research studies that include a longitudinal study design, following ALS patients over the disease course, would be useful to correlate change in function and assistive device satisfaction.
Acknowledgements
The authors recognize and express appreciation to Ms. Valerie Zebarah and Ms. Susan Guynn for their technical assistance in administration of the survey instrument and data collection. Study funding supported in part by NIH (R21 HD054913), PI: Dr. Huggins
Abbreviations
- ADL
activities of daily living
- ALS
amyotrophic lateral sclerosis
- ALS-FRS-R
amyotrophic lateral sclerosis functional rating scale-revised
- IQR
interquartile ranges
- PDA
personal digital assistant
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