Jude Kornelsen, Asif Raza Khowaja, Gal Av-Gay, Eva Sullivan, Anshu Parajulee, Marjorie Dunnebacke, Dorothy Egan, Mickey Balas & Peggy Williamson
Abstract
[Excerpts] Background
A significant concern for rural patients is the cost of travel outside of their community for specialist and diagnostic care. Often, these costs are transferred to patients and their families, who also experience stress associated with traveling for care. We sought to examine the rural patient experience by (1) estimating and categorizing the various out of pocket costs associated with traveling for healthcare and (2) describing and measuring patient stress and other experiences associated with traveling to seek care, specifically in relation to household income.
Methods
We have designed and administered an online, retrospective, cross-sectional survey seeking to estimate the out-of-pocket (OOP) costs and personal experiences of rural patients associated with traveling to access health care in British Columbia. Respondents were surveyed across five categories: Distance Traveled and Transportation Costs, Accommodation Costs, Co-Traveler Costs, Lost Wages, and Patient Stress. Bivariate relationships between respondent household income and other numerical findings were investigated using one-way ANOVA.
Results
On average, costs for respondents were $856 and $674 for transport and accommodation, respectively. Strong relationships were found to exist between the distance traveled and total transport costs, as well as between a patient’s stress and their household income. Patient perspectives obtained from this survey expressed several related issues, including the physical and psychosocial impacts of travel as well as delayed or diminished care seeking.
Conclusions
These key findings highlight the existing inequities between rural and urban patient access to health care and how these inequities are exacerbated by a patient’s overall travel-distance and financial status. This study can directly inform policy related efforts towards mitigating the rural-urban gap in access to health care.
Background
Despite service planning challenges (low population densities spread over vast geographies, seasonal inclement weather), jurisdictions across Canada have developed relatively robust infrastructures to affect emergency patient transport [1,2,3]. Likewise, most provinces and territories have established effective mechanisms for inter-facility (hospital to hospital) patient transport within regionalized care [4]. However, there are few safety nets to facilitate transport to care in non-urgent or consultative situations, and in most jurisdictions for most residents, these costs are borne by individuals and families. For example, in Saskatchewan (Canada), 72% of all surgeries are performed in Regina and Saskatoon. Lavis and Boyko found that many people who live outside of those urban centres may not have the option of traveling there for care, partly due to accommodation costs [5]. Likewise, in Monitoring Seniors Services (Office of the Seniors Advocate, 2018), the senior citizen advocate noted the importance of public transportation in maintaining seniors’ independence and optimal health, and emphasized the importance of services such as HandyDART (a shared door-to-door public transit services for people with disabilities) and province-wide community programs to support seniors to live independently and be mobile, such as Better at Homeand Volunteer Drivers [6]. The authors also noted that reliance on non-subsidized transport (e.g., taxis) is not viable for many on a fixed income. Despite these policy imperatives, out-of-pocket transport costs to access health care remain substantial for many rural citizens and, in some instances, create barriers in access to care.
One ongoing challenge for rural health planning is regional travel for patients that require a higher level of care than what is available locally. This may be for episodic or chronic specialist care, diagnostics or returning from an acute event or planned surgical care. In these instances, travel costs fall outside the health care system’s responsibility, leading to transferred expenses for patients and their families. While this is not a concern in urban centres with ready access to specialist care, including surgery, and diagnostics, it is a challenge for many rural residents who face highly limited public transport options. This has the biggest impact on individuals without private vehicles, including those without the ability to drive such as children, elderly, and those with disabilities [7]. Out of pocket (OOP) costs include expenses for care that are not reimbursed by insurance, as well as patient-specific costs such as travel to the referral site, food, accommodation, and for some, co-traveler costs. The difficulties associated with unsupported travel are compounded for populations that lack the necessary financial and social resources. Poverty is often cited as a risk factor for health [8, 9]. Despite this challenge to the fundamental tenant of public health care (access), there is scant understanding of costs incurred for rural patients who need to leave their communities for care, leading to a de facto “rural tax” on health care for rural residents.
[Excerpts]
Psychosocial impact of travel
Across a range of demographics, participants commented on the impact that having to travel for care had on their mental wellbeing. For many, dealing with a health condition had already caused some stress or anxiety, which was exacerbated by having to arrange and undertake travel. Unsurprisingly, those participants, who were not able to have a companion accompany them, expressed feeling particularly anxious or stressed as a result of having to leave their home communities while ill.
The psychosocial impact of traveling for care was particularly significant for maternity patients. Several participants in this study who had to leave their communities while pregnant to access pre-natal care or give birth, shared that the stress of having to pay for travel and accommodation may have contributed to their post-partum depression and/or anxiety. One participant from a remote community commented:
“Expectant mothers in [my community] all have to leave the valley to have our babies. There are a number of medical visits before the delivery that we also have to leave the valley for. These include ultrasounds [and] specialist visits. The flights for these are covered, but not any other expenses and it gets expensive and stressful. Many families have to pay for a hotel while out waiting for the baby’s arrival. I was lucky and found a friend to stay with, but it is not overly comfortable staying with people in their home while waiting for my baby to arrive. You can never really relax. Then your support system [is] not there to support you.”
Those respondents who did not express significant negative psycho-social consequences of travel all noted the presence of a strong support system. For example, one participant said:
“I actually do not feel having my procedure outside of my home community had a negative impact on my recovery. However, I am very fortunate to have a caring spouse who took time off work to care for me. If she had not been able to be with me it would have made pre and post-surgery out of my community very inconvenient and likely would have impacted my recovery.”
Time away from home and the physical impact of travel
In addition to the psychosocial stressors of not having social support, many participants expressed a range of other reasons why having to spend time away from home was difficult for them. For example, some participants commented on the challenges of eating out and staying in hotels with specific dietary or allergy-related concerns. Other participants commented more generally on the impact of having to travel on their physical recovery. One participant noted, “As it [condition that required travel] was due to arthritis the driving was extremely hard on my muscles and joints” while another observed, “With chemo treatments I have no immune system to fight off germs.” Several other participants affirmed the difficultly of having to travel directly after a hospital procedure. As one participant noted, “…the most difficult procedure for me was the biopsy and I had to fly home with a bleeding and painful wound.”
Spending time away from home was particularly difficult for families with young children. Challenges included having to miss school to attend their parents’ medical appointments and needing specific types of care from parents that made it difficult to be away from them. For example, one woman described the impact of an unexpected surgery on her husband and young child:
“This was an unexpected emergency surgery that happened [the] same day symptoms presented themselves. My husband and son accompanied me to the hospital and when they decided I would require surgery and an overnight stay, my husband needed to head back home with our 10-month-old as he had not prepared for an overnight [stay]. I was also not able to breastfeed due to medications and we had no breast milk on hand. This meant they needed to make the 2-h trip back the next day to get me and then 2 h home again. Lots of driving for a small child.”
To access the full report, click on: Download PDF
