|Home | About | Journals | Submit | Contact Us | Français|
Limited information is available about rural cancer survivors’ needs and if they differ from urban cancer survivors.
A convenience sample of cancer survivors completed a self-administered survey.
Rural Appalachia (n=99) and urban non-Appalachia (n=107) cancer survivors completed the survey. Urban survivors reported more needs than rural survivors (p<0.001), but worry about cancer recurrence and concern about fatigue were reported most often by both urban and rural survivors. Urban survivors (n=87; 81.3%) and rural survivors (n=72; 72.9%) indicated that they searched for cancer information, but rural survivors were more likely to obtain information from family members and healthcare providers (p<0.05). Rural survivors differed from urban survivors by reporting less effort to get the information they needed (p<0.05) and less concern about the quality of the information (p<0.01), but they reported having a harder time understanding the information they found (p<0.05).
Rural and urban survivors’ most frequent needs focused on cancer recurrence and fatigue. Rural survivors reported fewer needs compared to urban survivors; however, our findings suggest certain needs may be more important to rural survivors. While most survivors reported searching for information about cancer, rural and urban survivors use different sources for finding information and have varying experiences in their searches.
There is an ongoing need to provide survivorship care that is tailored to the unique needs of cancer survivors. It is essential to provide educational materials for all cancer survivors, but using different communication channels for urban versus rural survivors may be beneficial.
Ohio Appalachia is a distinct geographic region with disproportionately high cancer incidence and mortality rates [1–4]. This cancer burden has led to an increasing number of cancer survivors living in this region and these survivors are included in the estimated 11.4 million cancer survivors currently living in the United States (U.S.) . Despite this cancer burden, we know very little about the survivorship experience of the Appalachian population.
In general, research suggests that the diagnosis, treatment, and recovery from cancer may affect different aspects of an individual’s life, including physical and psychosocial aspects. Previous reports of cancer survivors’ needs have documented a wide range of needs ranging from diet and exercise programs to assistance with legal issues and paying healthcare bills [6–12]. In addition, depending on the individual and the varied challenges they may face, the cancer survivor may have specific needs at the time of their diagnosis, during their cancer treatment, or after they have completed cancer treatment [11, 13–19].
Previous research focusing on cancer survivors’ needs has shown that needs may vary depending on the survivor’s age, sex, marital status, race/ethnicity, and also depending on the cancer site [8, 10, 20–25]. Although a significant portion of published research has focused on breast cancer survivor needs, there are reports of survivors of other cancers needing assistance for a wide range of topics [10, 20, 22, 24–26]. One group of survivors not evaluated extensively, however, has been those living in rural areas of the U.S. Limited research suggests that rural cancer survivors may or may not have a different cancer experience than urban cancer survivors [6, 27–34].
Approximately 42% of the residents of Appalachia live in a rural area compared to 20% of the U.S. population. Individuals living in rural regions have the added burdens of less access to health care providers and hospitals, greater distances to travel to visit with a health care provider, and being more isolated from family, neighbors (low population density), and other supportive care groups or facilities [2, 35]. In addition, the rural sections of Appalachia have higher poverty and unemployment rates, and lower per capita income [2, 36]. These additional issues associated with location of residence may affect the needs and the outcomes of rural Appalachia cancer survivors compared to survivors living in urban areas.
Although there have been a few reports of rural cancer survivors’ needs, the findings have not been consistent [6– 9, 32, 34]. In previous reports, rural cancer survivors’ needs have been different than those of urban survivors [7–9, 32, 34], and in one study there have been no significant differences documented between rural and urban survivors . To our knowledge, a needs assessment among cancer survivors living within rural Appalachia has never been compared to the needs of survivors living outside this unique region of the U.S. Since the number of cancer survivors is increasing, and based on the limited information about rural cancer survivors needs, especially those within Appalachia, we conducted a needs assessment of urban non-Appalachia and rural Appalachia cancer survivors to gain insight about potential differences. Information obtained can be used to plan appropriate educational programs and provide essential direct survivorship services to both groups of survivors.
A convenience sample of cancer survivors was recruited to complete a self-administered survey from an urban non-Appalachia setting (The Ohio State University, James Cancer Hospital; Columbus, Ohio) and a rural Ohio Appalachia setting (Holzer Cancer Center; Gallipolis, Ohio). The large urban comprehensive cancer center is located in Franklin County, Ohio. Franklin County is located in the center of Ohio, has a population of approximately 1.1 million, a median household income of $42,734, and 11.6% of the population is below the poverty line . Approximately 61% of the land use is residential, commercial, industrial, transportation, and urban grasses. The rural cancer center located in Ohio Appalachia is located in Gallia County which is in the southern portion of the state along the Ohio River. Gallia County has a population of approximately 31,000, a median household income of $30,191, and 18.1% of the population is below the poverty line . Only 2% of the land use is residential, commercial, industrial, transportation, and urban grasses. Urban cancer survivors were recruited from an annual Cancer Survivor Day celebration and rural cancer survivors were recruited from cancer survivor meetings, a cancer survivor picnic, and follow-up care visits. The Institutional Review Board (IRB) at The Ohio State University approved this study.
Demographic variables measured included age, gender, marital status (married and other), race (white and non-white), education level (high school degree or less and more than high school), employment status (full-time/part-time/self-employed and other), income level (annual house-hold less than $40,000 and $40,000 or more), and insurance status (has some type of health insurance and does not have health insurance). Information was also collected about the specific cancer diagnosis for each participant.
A total of 44 potential needs in ten different categories that cancer survivors may have were evaluated in the survey. The list of needs was created after an extensive review of the literature and having the generated list reviewed by cancer experts. Following the question, “Would you use this service if it was available to you?” the 44 potential needs were listed. A participant was considered to have a need if they answered “yes” to the specific need listed. All other responses (no and does not apply) were classified as the participant not having the listed need.
The 44 individual needs were grouped into the following ten categories: symptomology (eight needs: pain, fatigue, lymphedema, trouble remembering, sexual difficulties, fertility difficulties, sleep difficulties, medication side effects), emotional (four needs: worry about cancer returning, sad or distressed, tense or nervous, concerns about body image), healthy behaviors (five needs: exercise, smoking cessation, diet, weight management, herbs or vitamins), assistance (two needs: having a nurse or caregiver in the home, help with cleaning or cooking meals), relationships (four needs: talking to spouse/partner about cancer, talking to children about cancer, talking to friends about cancer, talking to a therapist about sexual difficulties), money and legal issues (six needs: paying medical bills, health insurance, transportation to medical appointments, finding work, making a will, legal problems), relaxation and stress management (six needs: relaxation exercises and stress management techniques, massage therapy, guided imagery, touch therapy, aromatherapy, Yoga/Tai-chi), expressive arts (three needs: art classes, journaling, music therapy), spiritual (two needs: meditation, prayer), and support (four needs: in-person support group, internet support group, cancer survivor to talk to, support for my family, spouse, or children). For each participant, a sum score was generated for each needs category, which was based on how many individual needs a participant identified within that particular needs category.
In addition, data were collected on the sources of cancer information used at three different time periods (when first diagnosed with cancer, during treatment for cancer, and following treatment for cancer). For each time period, participants were first asked if they looked for information about cancer (yes/no). If the participant looked for cancer information during a time period they were asked if they looked for information from the following sources: media (TV, radio, newspapers, magazines, internet), print (brochures, books, cancer hospital library), agencies (cancer organizations, toll free numbers), or people (health care providers, family, friends/co-workers). Participants could indicate multiple sources of information for each time period. The characteristics of the information seeking experience (ease of finding information, information was too hard to understand, etc.) were also examined using eight items from the Health Information National Trends Survey (HINTS) .
Descriptive statistics for urban non-Appalachia and rural Appalachia participants’ demographic variables were computed using chi-square tests for categorical data and t-tests for continuous variables. Needs were first examined by determining the frequencies of each need and ranking them based on these frequencies. Separate rankings were conducted for urban and rural participants in order to compare survivors’ needs based on geographic residency. The remainder of the analysis utilized the previously described sum scores for the needs groupings. The group means for each needs category, as well as the total number of identified needs, were compared for survivors from each of the two geographic locations using t-tests. Urban and rural participants were then compared by the types of information sources for each time period examined (when first diagnosed with cancer, during treatment for cancer, and following treatment for cancer) and characteristics of the information seeking experience using chi-square tests. All analyses were conducted using SPSS 16.0 .
In the urban setting, 250 surveys were distributed at the OSU cancer survivor day, of which 107 (42.8%) completed surveys were returned. There were no refusals to participate among the 99 rural survivors approached from the Appalachia-based clinic during medical visits, a cancer survivor meeting, and a cancer survivor picnic. Included in both groups were survivors of breast, lung, colorectal, lymphoma, prostate, myeloma, cervical, leukemia, bone, and other types of cancer (e.g. head and neck, ovarian, bladder, etc). Rural survivors had less education (≤high school: 72.8% vs. 56.6%, p=0.026) and lower annual household incomes (<$40,000: 62.7% vs. 38.5%, p=0.003) compared to urban survivors (Table 1). Urban and rural survivors did not differ in terms of other demographic variables examined.
The frequencies and ranking of the top ten needs by urban and rural survivors are listed in Table 2. Overall, rural survivors reported needs at a lower frequency than urban survivors. Interestingly, several needs (paying medical bills, tense or nervous, prayer, health insurance, support groups, and help talking to family and friends about cancer) reported in the top ten by rural cancer survivors were not in the urban survivors’ top needs. Top needs reported by urban survivors that were not in the top needs of rural survivors included help with a healthy diet, relaxation exercises and stress management, massage therapy, yoga, herbs and vitamins, and weight management. Although there are distinct differences in the needs for urban and rural cancer survivors, the two needs most frequently reported by both groups were focused on worry about cancer returning and concern about fatigue.
Results focusing on the ten needs categories are listed in Table 3. Urban survivors reported more overall needs compared to rural survivors (urban: mean=12.07 vs. rural: mean=6.64, p<0.001), as well as more needs in the following categories: symptomology, emotional, healthy behaviors, relationships, relaxation and stress management, expressive arts, and spiritual.
Eighty-seven (81.3%) urban survivors and 72 (72.9%) rural survivors indicated that they searched for cancer information. Among survivors who reported that they searched for information, more survivors reported searching for information at the time of their diagnosis and during their cancer treatment compared to after completion of their treatment (Table 4). Interestingly, although fewer survivors reported searching for information after their cancer treatment, still over half of the cancer survivors who reported searching for cancer information searched for information after completion of their cancer treatment. More rural survivors reported looking for information during their cancer treatment compared to urban survivors (91.7% vs. 73.6%; p<0.01).
At the time of diagnosis, the most frequent sources of information were brochures, the internet, and healthcare providers for both urban and rural survivors. Urban survivors used books (49.4% vs. 23.2%; p<0.01) and hospital’s patient library (15.6% vs. 4.3%; p<0.05) more often than the rural survivors, respectively. Rural survivors were more likely to obtain information from family members compared to urban survivors (29.0% vs. 14.3%; p<0.05).
Brochures, the internet, and healthcare providers continued to be the most commonly reported sources for both groups of survivors during cancer treatment. Also, as at the time of diagnosis, a significantly higher percentage of urban survivors used books (45.3% vs. 22.7%; p<0.01) and the hospital patient library (14.1% vs. 3.0%; p<0.05) for information during cancer treatment. Rural survivors reported using their healthcare provider significantly more than urban participants for information during cancer treatment (68.2% vs. 50.0%; p<0.05).
The most frequently reported sources of information following cancer treatment by urban survivors were brochures, healthcare providers, and cancer organizations. Rural cancer survivors reported the same main sources of information, as well as the internet. For this time period, urban survivors reported newspapers (32.6% vs. 8.1%; p<0.01) and brochures (63.0% vs. 29.7%; p<0.01) as an information source more frequently than rural cancer survivors.
Characteristics of the information seeking experience are listed in Table 5. Overall, only a small percent (<10%) of survivors reported wanting more information but not knowing where to find it, and there was no difference between urban and rural survivors. Rural survivors differed from urban survivors by reporting less effort to get the information they needed (p<0.05) and less concern about the quality of the information (p<0.01). Additionally, rural survivors reported having a harder time understanding the information they found (p<0.05).
The purpose of this study was to document differences between the needs of rural Appalachia cancer survivors compared to urban non-Appalachia cancer survivors. Rural survivors reported fewer needs compared to urban survivors, and our findings suggest certain needs may be more important to rural survivors. While most survivors reported searching for information about cancer, rural and urban survivors appear to be using different sources for this information and having varying experiences (less concern about the quality of the information, but had a harder time understanding the information among rural survivors) in their searches. We believe these results provide valuable insight into the needs of cancer survivors living in Appalachia and how they compare to survivors living in an urban area.
The finding that rural cancer survivors have fewer needs than urban survivors may be due to several reasons including cultural factors associated with living in Ohio Appalachia such as humility and privacy [2, 40]. In addition, there were several differences in the needs reported most frequently by rural vs. urban cancer survivors. Compared to urban survivors, rural survivors reported needs focused on concern with paying medical bills and health insurance, being tense or nervous, and needing support groups and help talking to family members and friends about cancer. Needs reported more frequently by urban survivors that were not a top need reported by rural survivors were help with diet and weight management, relaxation exercises, yoga, massage therapy, and herbs and vitamins. It is important to note that both rural and urban survivors’ top two needs focused on worry about cancer recurrence and concern about fatigue, which has been reported in previous research .
The finding that rural cancer survivors had needs focused on paying medical bills and health insurance is a reflection of the higher poverty rates and lack of health insurance that has been previously reported among residents of Ohio Appalachia [2, 36, 41]. Our sample was also indicative of this, with rural survivors reporting lower socioeconomic levels compared to urban survivors. The need for support groups among rural survivors corroborates previous research that included rural cancer survivors [7, 33]. Report of needing help with talking to family members and friends about cancer among rural survivors is not surprising since cancer is often not discussed in many smaller communities. Although both urban and rural cancer survivors reported needing help with being sad or distressed as a need, rural cancer survivors reported needing additional assistance with being tense or nervous. This finding corroborates the mental health disparities documented in a preliminary study of urban and rural cancer survivors suggesting that increasing awareness, access, and utilization of mental health programs may be important for rural cancer survivors .
There were also differences in the sources of cancer information reported by rural and urban cancer survivors. More urban survivors reported seeking information by using media and print materials, while survivors living in rural areas were more likely to report using their health care providers and family members more for cancer information. The focus on family and community members is an attribute among residents of Appalachia that has been reported in previous studies focusing on health [2, 40, 42, 43]. In addition, having trust of healthcare providers has been previously reported among rural residents suggesting the important role that healthcare providers play in providing understandable information to rural cancer survivors.
It is also important to note that approximately one third of both urban and rural cancer survivors in this study reported still looking for cancer-related information following the end of their cancer treatment suggesting the ongoing need for providing educational materials to all cancer survivors, but using different communication channels for urban versus rural survivors. Rural survivors reported that they did not use a lot of effort to find information, had less concern about the quality of the information, but the information was more difficult to understand compared to urban cancer survivors. This suggests that educational programs designed for rural cancer survivors should ensure that the materials are written at the appropriate literacy level and are culturally appropriate.
There are several limitations of our study. This was a cross sectional study of convenience samples of rural and urban cancer survivors and cannot be generalized to all cancer survivors. In addition, most survivors in this study self-identified as White. Although this is a reflection of the population in Ohio Appalachia for rural survivors, it is not similar to the demographics of urban areas, and thus the results of this study cannot be generalized to cancer survivors of other races/ethnicities. While participants were recruited from urban and rural settings, data were not collected on where participants resided. We do, however, believe that it is unlikely that individuals from urban areas would attend the events used to recruit the rural participants. The strengths of this study are that the same survey was used to evaluate the needs of both rural and urban cancer survivors, we used questions from a national survey (HINTS); and we evaluated a wide range of potential needs, as well as sources for cancer information and characteristics of the information-seeking experience.
In comparison to previous studies that focused mainly on the needs of urban cancer survivors, this study compared the needs and the sources for cancer information of rural Ohio Appalachia and urban non-Appalachia Ohio cancer survivors. Residents of Appalachia experience many health disparities and several of the findings from this study suggest that while they may have fewer needs than urban cancer survivors, they also have specialized needs. Most urban and rural cancer survivors reported seeking information about cancer, but rural survivors may use different sources for this information and may have a more difficult time understanding the information they find. These findings have important implications when planning educational programs for cancer survivors living in rural areas, especially Appalachia. Cancer survivorship educational materials for this population should be culturally appropriate and use plain language. Since informed patients have better health outcomes, strategies to address the limited literacy skills of many cancer survivors in this population could include working with local communities and institutions, developing cross-discipline relationships, and training healthcare professionals about the unique needs of rural, Appalachian cancer survivors.
This study was supported by National Cancer Institute Grants K07 CA107079 (MLK), P30 CA016058 (Behavioral Measurement Shared Resource at The Ohio State University Comprehensive Cancer Center), and the Lance Armstrong Survivorship Center of Excellence at The Ohio State University Comprehensive Cancer Center.
Mira L. Katz, College of Public Health and the Comprehensive Cancer Center, The Ohio State University, 1590 N. High Street, Suite 525, Columbus, OH 43201, USA ; Email: firstname.lastname@example.org.
Paul L. Reiter, Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, NC, USA.
Sandy Corbin, Holzer Cancer Center, Gallipolis, OH, USA.
Janet S. de Moor, College of Public Health and the Comprehensive Cancer Center, The Ohio State University, Columbus, OH, USA.
Electra D. Paskett, College of Public Health and the Comprehensive Cancer Center, The Ohio State University, 1590 N. High Street, Suite 525, Columbus, OH 43201, USA.
Charles L. Shapiro, College of Medicine and the Comprehensive Cancer Center, The Ohio State University, Columbus, OH, USA.