Health CareRural–urban differences in discussions of cancer treatment clinical trials
Introduction
Cancer treatment clinical trials are vital for the advancement of cancer care and moving science from bench to bedside. However, less than 5% of adult cancer patients participate in clinical trials, well below the 75–90% of children with cancer who participate in pediatric treatment trials [1], [2], [3]. Overall low adult participation rates are further exacerbated by participation disparities among ethnic and racial minorities, older populations, women, individuals of lower socioeconomic status, and residents of rural communities [2], [4], [5]. Notably, rural individuals carry an undue burden of cancer due to lower rates of cancer screening, higher rates of at-risk health behaviors such as smoking and poor diet, and later stage cancer diagnoses [6], [7], [8]. Many rural residents live in communities characterized by lower socioeconomic status, increased numbers of older residents, higher rates of unemployment, higher rates of health illiteracy, increased concentrations of ethnic and racial minorities and poor Whites, and geographic isolation [9], [10], [11], [12]. Related to healthcare, many of these rural communities are identified as partial or whole health professional shortage areas, have higher under or uninsured rates, lack primary care and specialty physicians as well as National Cancer Institute (NCI)-designated cancer centers or American College of Surgeon-approved hospital cancer programs, and residents may have to travel long distances to receive cancer treatment [2], [9], [12], [13], [14].
Although the literature has identified a general lack of clinical trial awareness and misinformation as significant barriers to trial participation [15], [16], particularly among minorities and lower income and less educated populations [17], [18], few studies have focused on rural individuals’ awareness and understanding of cancer clinical trials. Analysis of the 2008 NCI Health Information National Trends Survey (HINTS), which is representative of the U.S. population, reveals a significant difference in awareness of clinical trials between urban (n = 4336, 67.0%) and rural (n = 929, 60.7%) respondents (P < 0.003) (L.F. Rutten, personal communication). Coyne and colleagues’ in-depth, qualitative interviews with Appalachian West Virginia cancer patients revealed only eight of 17 participants knew what clinical trials were, and three of these eight individuals worked in the medical profession [19]. Similar to other studies with underserved populations, some of this rural sample held misperceptions about clinical trials, including the belief that clinical trials are a treatment of last resort. Other patient concerns included cost and insurance coverage, distance and transportation, side effects and negative treatment outcomes, and whether their family members and physician would support a decision to join a trial [19]. Randall-David and colleagues conducted four focus groups in three rural and one urban community in North Carolina with members of the general public; only 57% of the participants had heard of the term “clinical trial” [20]. This study sample held many of the same misperceptions about clinical trials as the Appalachian West Virginia participants. In 1996, rural primary care physicians in North Carolina and South Carolina stated patients’ lack of clinical trials knowledge and travel as significant factors influencing cancer clinical trial enrollment [21]. In summary, the sociodemographic and healthcare-related characteristics of rural communities noted earlier, along with a general lack of awareness of clinical trials, place rural cancer patients at a distinct disadvantage in participating in cancer treatment trials.
One avenue for increasing awareness of clinical trials as a treatment option among rural cancer patients is the introduction and discussion of clinical trials through the NCI's Cancer Information Service (CIS). For over 30 years, the CIS has provided evidence-based cancer information, in both English and Spanish, to members of the general public, cancer patients and their families, and healthcare providers through a toll-free telephone service (1-800-4-CANCER), email, and an instant messaging online chat service (LiveHelp) [22]. CIS Information Specialists (IS) are trained to provide individualized responses across the cancer continuum, including prevention, screening, treatment, survivorship, and end of life care. Additionally, IS are trained and prepared to reactively and proactively discuss cancer clinical trials with callers, provide tailored clinical trials searches, send clinical trials educational materials, and assist with translating complex scientific information – all of which can be further shared and discussed with callers’ healthcare providers. Due to the fact the CIS receives a large number of calls through its telephone service (n = 283,094 from 2006 to 2008), this service has the potential to educate thousands of individuals, including rural residents, about cancer clinical trials. Previous research suggests over 80% of CIS callers who inquire about cancer treatment or clinical trials information indicated that the information they received made them more knowledgeable about their treatment options and almost 50% discussed the information with their physician [23]. This paper will focus on cancer treatment trials due to the large percentage of calls including a discussion of clinical trials that focus on treatment (96.1%) as compared to prevention/screening trials (3.8%) [24].
Therefore, the purpose of this research is to describe overall demographic differences between rural and urban callers to the CIS; compare characteristics of rural and urban callers who discuss cancer clinical trials; and explore the association of geographic location (i.e., rural versus urban) and discussion of cancer clinical trials. This study included an analysis of three years of CIS call data, 2006–2008, and received Institutional Review Board approval from the University of Miami.
Section snippets
Methods
As part of usual service, the CIS collects detailed, standardized information about client interactions via the CIS Electronic Contact Record Form (ECRF). This data includes information on type of caller (e.g., patient, friend/family member), type of cancer, stage in the cancer care continuum (e.g., in treatment, recurrence) and subject of interaction (e.g., clinical trials, referral to medical services). The CIS has approval from the Federal Office of Management and Budget (OMB) (Approval No.
Results
Between 2006 and 2008, the CIS received 283,094 total calls; 227,579 calls could be coded for geographic location. Of these geographically coded calls, 54,842 (24.1%) were sampled for demographic data (Table 1). A little over a quarter (27.5%) of all CIS callers are cancer patients and approximately a third (34.2%) are family members or friends of a cancer patient. Almost 20% of all CIS callers have used the service previously. The top five cancer sites most commonly discussed include breast
Discussion
To our knowledge this is the first study to document (1) a comparison of rural versus urban callers to NCI's Cancer Information Service and (2) rural residents’ discussion of cancer treatment trials using data from a national cancer information service. We found a larger percentage of rural callers are cancer patients or their family members/friends compared to urban callers. However, significantly fewer of these rural callers engage in a clinical trials conversation. In addition to caller
Declaration
I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.
Acknowledgements
This work was supported by a National Cancer Institute award [N02C051107-12-0-0] and the Florida Bankhead Coley Research Program [07BP-01-12333].
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