Wheelchair user’s voice: a pilot study in Indonesia

There is a significant unmet need for appropriate wheelchairs worldwide. As a whole, studies suggest that appropriate wheelchairs have a positive impact on the quality of life and health of wheelchair users, which is consistent with the goals and outcomes in more resourced settings, and that when services are provided along with the wheelchair, the positive impact is increased. The gaps in previous research, along with the global focus on evidence-based decision making, were strong motivators for carrying out a study that contrasted the outcomes associated with different types of wheelchair service provision strategies. This study used a sample of participants randomly selected from a waitlist (N = 142) or people who used wheelchairs as their primary means of mobility. Two different groups were included, the 8-Steps group and the Standard of Care (SOC)group. The 8-Steps group (N= 118) received wheelchairs from service providers trained using the World Health Organization (WHO) 8-Step process and the SOC group (N=24) received hospital-style wheelchairs and standard care. Interviews were conducted at baseline and a follow up 3-6 months after distribution, to collect data using the following tools: International Society of Wheelchair Professionals (ISWP) Minimum Uniform Data Set (MUD), Wheelchair Skills Test Questionnaire (WST-Q), and Life Satisfaction Questionnaire (LiSAT-11), and Breakdown and Adverse Consequences Questionnaire (BAC-Q).Across-group statistical comparisons were not attempted. The majority of participants from the 8-Steps group used their wheelchair every day for more than 8 hours a day. In contrast, the SOC group used their wheelchairs less than 6 hours a day. Both groups traveled less than 500 meters per day. Participants’ WST-Q scores were low, <65%, at both baseline and endline, with a significant decrease at endline. No significant differences were found when comparing device satisfaction across wheelchairs types. The majority (n=87; 72.7%) of 8-Steps group participants reported performing wheelchair maintenance. Less than half (n=9; 37.5%) of the SOC group reported performing maintenance activities. For both groups, the most reported maintenance activity was wiping or washing the wheelchair, and most wheelchair repairs were performed by the study participant or a family member. The results of this study demonstrate the importance of the WHO 8-steps training package for wheelchair provision. Further studies, training services, and wheelchair skills are needed in low and middle-income countries for both wheelchair users and service providers.


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There is a significant unmet need for appropriate wheelchairs around the world. Using 59 population-based estimates published by WHO, approximately 77 million people worldwide 60 currently require the use of a wheelchair for mobility [1]. Data collected in several less-61 resourced settings (LRS) on access to assistive technologies suggests that only between 17% and 62 37% have access to appropriate assistive technologies, such as wheelchairs. Based on these data, 63 an estimated 33-65 million people who need wheelchairs do not have access to them. This large 64 unmet need has motivated governments, private companies, and not-for-profit organizations to 65 provide wheelchairs through a range of largely uncoordinated service provision and supply chain 66 approaches for the past several decades [2,3]. Concerns that some of these approaches lacked 67 the desired impact (e.g. [4,5]) motivated a multi-year effort to establish standards related to 10]. Efforts to disseminate these tools are substantial -they are widely promoted by different 72 organizations (e.g. WFOT, WCPT, ISWP, ISPO), they are translated into several languages, and 73 they are being adopted as the basis for global training [11,12], and competency evaluations [13]. 74 In spite of these dissemination efforts, there has been relatively little change in the 75 wheelchair sector, and governments, private companies, and not-for-profits continue to distribute 76 wheelchairs that would not be considered 'appropriate ' [6] through the service delivery approach 77 that does not include all 8 steps recommended by WHO [7]. There are two key reasons that 78 organizations do not universally adopt these consensus approaches. First, policies that dictate the 79 type of wheelchair service provision are weak or non-existent in many countries where the need 80 is greatest, and therefore organizations are not obligated to adhere to specific service or product 81 quality standards. Second, there is a paucity of evidence that providing wheelchairs through the 82 approach outlined by WHO, which is costlier and requires a long-term commitment, addresses 83 the needs for wheelchairs users more efficiently or effectively. 84 These two reasons are closely linked and related to a lack of objective evidence about the 85 marginal benefits of providing appropriate wheelchairs through a costlier 8-step approach 86 (described by WHO) versus simply giving a standard hospital-style wheelchair to someone who 87 requests it, which continues to be the standard of care in most countries. Subjective evidence 88 indicating that hospital-style wheelchairs fail quickly in the community were published as early 89 as 1990 [4,14], but investigated only a small number of wheelchairs and were geographically 90 focused on India. Interest about the impact of wheelchair service increased as the sector began to 91 coordinate in 2006 when the WHO became involved [15], and researchers began to collect and 92 publish outcome data. For instance, a cross-sectional study on 188 wheelchair users who 93 received basic wheelchairs without formal service revealed that 93.1% of the wheelchairs will 5 94 still in use after an average of 18 months and that receiving the wheelchair was associated with a 95 significant increase in independence and significantly decreased pressure ulcer incidence [16].

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These strong positive results bolstered the argument that the costlier approach promoted by the 97 WHO may not be necessary. Meanwhile, because the study was cross-sectional and investigated 98 a group who received a single type of wheelchair, it does not provide conclusive evidence of the 99 relative value of providing wheelchairs through WHO's 8-step approach, nor provide reliable 100 insight into whether it was the wheelchair or other factors which led the improvements. The first 101 study we are aware of that investigated the impact of the WHO's 8-Step service approach was in 102 Indonesia, and compared a group receiving wheelchairs through the 8-Step process to a waitlist 103 control group at baseline and a 6-month follow-up [17]. Subjects who received new wheelchairs 104 reported significant increases in physical health, environmental health, and satisfaction with their 105 mobility devices as compared to the waitlist control group. Using a robust study design and 106 validated outcome measures, this research helps to support WHO's 8-Step service provision 107 approach but did not directly compare it to the standard of care. A longitudinal study of 200 108 individuals who received one of two designs of wheelchairs [18] was conducted in Peru, Uganda, 109 and Vietnam found that overall health indicators, distance traveled, and employment increased, 110 and that wheelchair design had little impact on these results. This study was conducted on a 111 population of users similar to an earlier study [16] and similarly did not receive services based on 112 the 8-Step approach, did not include a control group, or use strongly validated outcome 113 measures.

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The only study we are aware of that compared across service provision models was a 115 cross-sectional study that recorded data from 852 wheelchair users in Kenya and the Philippines 116 [19,20]. The investigators used a proxy measure for services based on the subject's self-report of 6 117 how many service steps (from 0 to 8) occurred when they received their wheelchairs. The results 118 suggest that users in Kenya versus the Philippines were more likely to use their wheelchairs daily 119 (60% vs. 42%) and had higher activities of daily living (ADL) performance (80% vs. 74%) 120 highlighting the country-level differences. The impact of increased services was largely 121 dependent on what service was received. For instance, individuals who were assessed for a 122 wheelchair ( Step 2) were more likely to have a higher ADL performance. Similarly, individuals 123 who received training (Step 7) were more likely to use their wheelchairs daily. This cross-124 sectional study of a relatively large subject pool provides strong evidence of the positive impact 125 of services on the outcomes of wheelchair service provision.

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The prior research evidence paints a positive but incomplete picture of the impact of 127 service provision in the wheelchair sector. As a whole, the studies suggest that wheelchairs have 128 a positive impact on the quality of life and health of wheelchair users, which is consistent with 129 the goals and outcomes in more resourced settings [21], and that the degree to which services are 130 provided increases that impact. But there is still a significant gap in evidence related to the 131 specific benefits of an 8-step service provision approach, versus the standard of care. This is due 132 to limitations in the previous studies associated with the study design, such as the lack of control 133 groups, cross-sectional methodology, or weakly validated measures. Meanwhile, the need for 134 this information is becoming increasingly important to meet a global push towards using 135 evidence to drive policy changes related to rehabilitation and assistive health technology The gaps in previous research along with the global focus on evidence-based decision 140 making motivated our team to carry out a study that contrasted the outcomes associated with 141 different types of wheelchair service provision strategies. This study design was tailored to 142 identify hypotheses of potential outcomes and inform changes to, a wheelchair supplier 143 (Consolidating Logistics for Assistive Technology Supply & Provision), whose goal is to sell a 144 range of appropriate wheelchair models to buyers who then provide them through a global 145 service network. The study was guided by the following research questions:    Table 1 provides an overview of the types of data collected through each questionnaire.

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These questionnaires were administered at baseline and endline, 3-6 months after the start of the 209 study, to all the wheelchair users who participated in the study.

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A total of 150 participants were recruited for the study, 15% of whom had not owned 248 wheelchairs previously. A total of eight participants were excluded from data analysis, six that 249 did not participate in the follow-up, and two that were deceased before the conclusion of the 250 study. Therefore, longitudinal data from 142 participants was analyzed; 118 from the 8-Steps 251 groups and 24 from the Standard of Care group.

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Descriptive statistics of age, gender, mobility aid use, disability, and education level are 253 shown for each group in Table 2. There were no significant differences between the groups for 254 gender (p=.169). However, individuals in the SOC group were significantly older (p=.001) and 255 were less likely than the 8-Steps group to report using a mobility aid at enrollment (p=.001; 256 Table 2). There were also differences in reported diagnoses between groups. More than half of 257 the participants recruited from the 8-Steps group participants had polio (51.7%), but no 258 participants from the SOC group reported having polio. Due to the important differences 259 between these two groups, subsequent results are presented separately.
13 260 The majority of the participants from8-Steps group used their wheelchair every day and 263 traveled <500 meters per day at baseline and endline (Table 3). There were no major changes in 264 the self-reported wheelchair usage between baseline and endline (Table 3).   Overall, most of the individuals receiving any of the wheelchairs reported using it every 287 day, except for individuals who received the MRT ( Figure S5). Participants who received an 288 MRT were more likely to report using it only 1-3 days per week although a number of them still 289 reported using it every day. Interestingly, usage in hours per day was bimodal; individuals were 290 most likely to report using their wheelchair 1-3 hours per day or 8+ hours per day ( Figure S5).

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Individuals who received RR or Std were more likely to report using it the most (8+ hours per 292 day), while individuals who received H or UCP were slightly more likely to report lower usage

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(1-3 hours per day). Additionally, the majority of participants reported traveling less than 100 m 294 per day ( Figure S5). This was similar for all types of wheelchairs in the 8-Steps group.    Table 5 shows the satisfaction rate per type of wheelchair. No 353 significant differences were found when compared across wheelchairs. Wheelchair maintenance and repair 360 The 8-Steps group reported 34 (28.8%) subjects had wheelchairs that stopped functioning 361 correctly or broke. The most common complaint was one or more parking brakes no longer 362 functioned properly 9 (7.6%), followed by a bearing stopped turning smoothly 8 (6.8%). Some 363 other wheelchair repairs included tire replacement, broken wheels, and tire inflation. Of those 364 repairs recorded, 12 (10.2%) were performed by the participant or a family member followed by 365 the service that provided the wheelchair 11 (9.3%). Two individuals (1.7%) in the SOC group 366 had wheelchairs that stopped functioning correctly or had a broken wheel. In both instances, the 367 participant or a family member performed the repair.

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The most-reported maintenance activity was wiping or washing the wheelchair 54 (45.8%) 370 followed by adding oil 20 (16.9%) and adding air to the tires 11 (9.3%). 8-Steps group or family 371 members did most of the wheelchair repairs 79 (66.9%). A total of 9 subjects from the SOC 372 group reported performing maintenance activities, 4(16.7%) subjects reported wiping or washing 373 the wheelchair followed by 2(8.3%) added air to the tires. All participants that reported 374 wheelchair maintenance, mentioned it was performed by the participant or a family member. Steps group also reported increased satisfaction in vocation and family life, while the SOC group 378 reported increased satisfaction in leisure, contact, and activities of daily living. Steps group and more than 87% of participants from the SOC group, were still using the study 389 wheelchair at endline. Although not directly comparable, users who received their wheelchair 390 through the 8-step process from Puspadi had more usage daily, hourly, reported more distance 391 traveled per day and more places where the device was used than the BBF group. This could be 392 due to several factors, such as the provision of a wheelchair that did not meet their needs, it did 393 not fit properly to their body, lack of user and maintenance training, environmental barriers, or 394 due to differences in the population. These findings are aligned with those of the study published 395 by Toro et al. [17] in Indonesia that suggested the positive impact of the WHO 8-steps in 396 wheelchair provision.

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The total scores for wheelchair skills were overall low for participants from both groups, studies carried out in less-resourced countries to continue to improve wheelchair provision.

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The biggest limitation of the study was that the subject groups were not randomly 446 assigned to wheelchair groups. Individuals from the 8-Steps group and the SOC group were 447 significantly different; therefore, explicit group comparisons were not attempted. During the 448 project, it seemed that at times there were not enough resources to fully complete the 8-step 449 process and it was challenging to determine how well a group of providers is adhering to the 8-450 step process. In addition, some of the wheelchair users received a wheelchair three to four 451 months before the baseline due to low distribution resources. This created issues with recall and 452 confusion about which wheelchair type the data collectors were referring to in the study 453 questions.

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There are a variety of outcomes and impacts that could result from users having access to 455 proper wheelchairs, training, and services. Some outcomes and impacts of having and using a 456 wheelchair do not appear within a three-to six-month period, making it hard to measure all of 457 the outcomes in this study.

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One of the biggest limitations of this study was the difficulty of collecting data from 459 participants from both groups at baseline and endline interviews. Our results provide general support that wheelchair users who are provided wheelchairs 470 by service providers trained in the WHO 8-Step process have positive outcomes. We also found 471 that outcomes are impacted by the wheelchair model used, reinforcing the need for proper 472 assessments and a range of available wheelchairs. Our results support the need for increased 473 wheelchair skills training to ensure that users learn how to use their new wheelchairs, and also 474 can safely navigate through their environment. Finally, our study highlights many of the 28 475 challenges of performing outcomes research in this population and environment that should be 476 taken into consideration when designing robust research studies in less-resourced environments.