Supporting Safe Driving With Arthritis: Developing a Driving Toolkit for Clinical Practice and Consumer Use

Data Collection

This study was approved by the Ottawa Hospital Research Ethics Board, Ottawa, Ontario, Canada. Clinicians and consumers were recruited to participate in focus groups through community-based arthritis organizations, such as the Arthritis Society, Consumer Advisory Board of Arthritis Research Centre of Canada, Patient Partners and Canadian Arthritis Patient Alliance, and outpatient clinics in the Ottawa area. We conducted two focus groups with people from each of the major stakeholder groups (i.e., purposeful criterion sampling): (1) consumers living with arthritis and (2) clinicians involved with arthritis care. To be eligible to participate in the study, consumers had to be ≥21 years old, have a physician-confirmed diagnosis of arthritis, and have a valid driver’s license. Clinicians who participated in the focus groups identified arthritis as the primary focus of their day-to-day practice.

We used a structured protocol, meaning that each focus group was moderated by the same facilitator with the help of an assistant to record participants’ comments. Each focus group consisted of 5–8 participants, which was in accordance with focus group guidelines (Morgan, 1998). We developed a series of semistructured questions for each stakeholder group with input from the multidisciplinary research team, who had expertise in the area of driver rehabilitation and occupational therapy, physiatry, geriatrics, and rheumatology.

Before the focus group session, we obtained written consent from each participant. No remuneration was provided to the participants except for travel and parking. All focus group discussions were audiotaped and transcribed verbatim by the same member of the research team (Julia Worswick). Participants were reminded that their responses within the session would be kept confidential and reported anonymously.

The focus group sessions opened with general, open-ended questions, moving to a more direct assessment of particular dimensions of driving that had previously been shown to influence the safety of drivers with arthritis (Busteed, Daly, Silke, & Molloy, 2004; Cranney et al., 2005). Participants in both stakeholder groups were asked to describe the effects of arthritis on driving performance and their awareness of resources that support safe driving. Questions were then tailored to each stakeholder focus group.

Because clinicians play a role in the assessment and evaluation of arthritis, focus group questions for these participants elicited their experiences with identifying concerns about driving with their patients as well as their knowledge and awareness of driving-related resources, such as adaptive aids and joint-positioning strategies. Questions for consumers explored their driving experiences, including any challenges associated with using their vehicle. Similar to the clinician-based focus groups, consumers were also asked to identify strategies currently used to facilitate their driving safety, including the use of adaptive aids. Consumers were asked about driving-related information they found useful and how they located this information. Participants in both stakeholder groups were asked about the best means of distributing this information (e.g., Web-based or printed resources). After each group, the group facilitator and note taker held a debriefing to identify themes and subthemes raised during the discussion. Recruiting and running of focus group sessions were to continue until saturation of data was achieved, meaning that no new information (i.e., themes) was generated from both the clinician and the consumer-based group sessions. Recruitment efforts were discontinued after four focus groups given that saturation was reached, as confirmed on review of the transcripts. Krueger (1998) identified that saturation is typically reached after four to six focus group sessions, although this number might depend on the topic being explored.

Analyses

To begin analysis, we independently reviewed field notes and systematically coded transcripts using an open coding process to highlight emergent themes (Hsieh & Shannon, 2005). We then met to discuss these themes and develop a coding framework (Crabtree & Miller, 1999; Krueger, 1998). We used researcher triangulation, in which Brenda Vrkljan and Ann Cranney analyzed the transcripts individually. They reached agreement on major themes through collaborative discussion and interpretation. Also, a peer not directly involved in the study reviewed the process by which the associated themes were identified (Krueger, 1998). In this case, the peer acted as an auditor to ensure the integrity of the findings and theme identification. The last step involved a coreview of the final set of thematic codes (by Vrkljan and Cranney) to identify key driving issues raised by consumers and clinicians and establish areas of concern related to information needs and the best means of accessing driving-related resources. Once themes were identified, the final phase of the study involved member checking, in which the study findings were summarized and e-mailed to a randomly selected member of each respective focus group. This person was expected to provide in-depth feedback (Krueger, 1998). Those who were contacted in this study validated the findings in their written feedback to us.

Consumer Focus Groups

Consumers (N = 11) ranged in age from 30 to 75 (median age = 58) and included those recently diagnosed and those for whom arthritis has been a longstanding issue (years since diagnosis = 1–25, median = 14). Arthritic conditions included ankylosing spondylitis (n = 2), psoriatic arthritis (n = 1), and osteoarthritis (n = 1), with most participants having rheumatoid arthritis (n = 7). All consumers were licensed drivers. They were either retired or on disability pensions at the time the focus groups were held.

Clinician Focus Groups

Of the 37 clinicians contacted, 12 involved in arthritis care agreed to participate in the focus groups (6 occupational therapists, 5 physiotherapists, and 1 social worker; median years in practice = 25, median age = 51). They all practiced in outpatient clinics or community settings (i.e., home care) in the same geographic region in eastern Ontario, Canada.

Facilitating Driving Safety and Arthritis

Under the overarching theme of facilitating driving safety, emergent themes from the focus group data highlighted the meaning of driving for people with arthritis. However, consumers and clinicians identified several concerns about driving safety. Key strategies used to address these concerns were described by both participant groups, which highlighted problems experienced by drivers with arthritis and challenges associated with assessing their safety. We present these themes using illustrative quotes. Problems with driving that were identified by clinicians and consumers were similar across focus groups.

Meaning of Driving to People With Arthritis

Many consumers identified that driving provided them with the means to participate in out-of-home activities that were critical to maintaining their health, well-being, and quality of life (e.g., participating in leisure activities such as deep water swimming, Pilates, yoga, weight training at the gym; shopping for groceries; attending health appointments). Many spoke about the importance of driving in the context of the fears associated with losing their license. One participant with arthritis stated, “There’s a fear that if you lose your license, you lose your freedom.” Others discussed the fear of raising driving-related problems with clinicians. They worried that instead of getting help, they would be reported to the “licensing bureau.” Another participant with arthritis spoke about hiding her concerns about driving from others:

Clinicians also raised concerns about whether fear was the reason consumers did not identify driving-related issues. One clinician surmised, “That’s why they don’t tell us about their reflexes because they think we might say ‘I don’t think you can drive anymore.’” For some clinicians, the fact that driving might be an issue for consumers came as a revelation, even for the clinician who identified driver assessment as her practice area: “I have never had anybody [consumer] sent to me for a driving assessment where the primary diagnosis has been arthritis.” Most stated that they did not address driving in their day-to-day practice unless the consumer, his or her family, or both raised the issue. Consumers equated losing their license with losing their independence. They depended on their automobile to function in their daily lives.

Concerns About Driving Safety

Strategies to Facilitate Driving Safety

Given the pain, stiffness, and other limitations caused by arthritis, people with this condition had to make various accommodations to drive. The accommodations included changing their driving routine, adapting their vehicle, or both.

Adapting Their Vehicle.

Drivers with arthritis identified several vehicle adaptations that had facilitated driving safety since their diagnosis. These adaptations are listed in Figure 1. The list includes key turners, wide mirror extensions, and back supports, among others (see Figure 1). Although consumers appreciated when vehicles had these adaptations directly integrated into their design (e.g., keyless entry, seat heaters, remote starters, adjustable steering wheels), they identified that these vehicles were usually the more expensive models: “Arthritis is an expensive disease … all of the adaptations are on the higher-end cars.” Clinicians also identified the cost of vehicle adaptations as a major barrier for those with arthritis. However, they reported that in some situations, simple, cost-effective solutions could facilitate performance (e.g., using a plastic bag to swivel when transferring into and out of a vehicle). Both consumers and clinicians felt that a useful resource would be to identify arthritis-friendly vehicle features. This resource could be used when purchasing a vehicle.

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Figure 1.

Examples of adaptive devices to improve driving for people with arthritis.

Need for Resources Specific to Arthritis and Driving

Development of a Driving and Arthritis Toolkit

The notion of developing a toolkit on arthritis and driving emanated in part from the success of this approach with drivers with dementia (Byszewski et al., 2003). The Driving and Dementia Toolkit (Byszewski et al., 2003) was developed in response to the needs of primary care physicians. This toolkit provides information to assist with in-office assessment of driving skills and communicating results to people with dementia, their caregivers, or both, including links to appropriate community resources. An evaluation of this resource for dementia supported its effectiveness with increasing knowledge and physician confidence in responding to driving-related concerns. Although dementia presents a unique set of challenges when it comes to addressing driving-related issues, results from this study indicate that the need for information and resources is similar for drivers with arthritis and the clinicians involved with their care.

Both consumers and clinicians suggested that a toolkit on arthritis and driving should include information specific to the needs of those with this diagnosis, including information on vehicle adaptations and strategies to enhance on-road performance. Figure 1 lists some of these adaptations. Given the fear associated with disclosing difficulties with driving, the provision of a toolkit could facilitate a safe and open dialogue about driving between clinicians and consumers to ensure concerns are addressed. The challenge for clinicians is to determine whether a person is safe to continue driving. The Driving and Dementia Toolkit includes a decision-based algorithm to assist physicians through this process and to determine whether a more in-depth driving assessment is necessary (Byszewski et al., 2003). A similar algorithm will be developed for arthritis and its utility evaluated, which will form the basis of a future study.

Unfortunately, the expense associated with driver assessment services and vehicle adaptations was identified as a significant barrier by participants because many consumers are on fixed incomes (i.e., disability, retirement pensions). Although determining strategies to ensure such services are covered by insurance providers, government agencies, or both is beyond the scope of this article, it is important to consider the costs to society when people no longer participate in activities that keep them healthy and mobile in their community. The association of driving cessation, out-of-home activity levels, and depression has already been noted.

Dissemination of the Toolkit

Facilitating the transfer of current and relevant information on vehicle adaptations and other strategies that enable people with arthritis to maintain their driving safety is critical. Research on knowledge transfer and diffusion of innovations of health care research has indicated that using media-related resources (e.g., Web sites, journals, newsletters, short informational bulletins) is an effective tool to increase knowledge and awareness (Reardon & Gibson, 2006). However, interpersonal strategies are more effective with regard to the actual implementation of innovations (i.e., products of exchange process—e.g., arthritis and driving toolkit; Grimshaw & Eccles, 2004; Grol & Grimshaw, 2003). Additional background work on the development of the driving and arthritis toolkit will result from a systematic review of the literature on arthritis and driving performance outcomes and a physician survey on driving and arthritis that we conducted. On the basis of results from this study, this toolkit should target both consumers and clinicians. Information on adaptive equipment (see Figure 1) and other suggested strategies will be provided. The toolkit will also include a clinical decision-making algorithm that can be used to determine when an in-depth driving assessment may be necessary (e.g., red flags; see Figure 2).

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Figure 2.

Potential contents of a Web-based arthritis and driving toolkit for clinicians and consumers.

Study Limitations and Suggestions for Future Research

It is important to consider the findings in light of a few limitations. Focus groups in this study included consumers with different types of arthritis. Some consumers had been diagnosed more recently than others. The intent of the study was not to generalize the results to all people with arthritis or across diagnoses; rather, it was to understand their driving experiences and the challenges faced by clinicians when addressing driving in their practice. Our objective was to generate driving-related resources for both user groups that targeted their respective issues. Moreover, when conducting qualitative research, the introduction of bias with regard to the interpretation of the themes is possible. We attempted to minimize this bias by using methods such as peer debriefing and member checking to confirm the analysis. The study’s focus was to address strategies that would facilitate the safety of drivers with arthritis. This study is the first to explore the information needs of both consumers and clinicians. Future research will involve an evaluation of the driving and arthritis toolkit that is currently under development. Strategies to disseminate the toolkit, including a comparison between online and hard-copy resources, will be examined to determine their effectiveness in addressing driving-related concerns among potential end users (e.g., knowledge and confidence gained by clinicians in addressing driving issues; consumers’ satisfaction with information and resources).