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Cancer survivorship challenges of rural older adults: a qualitative study

Cancer survivorship challenges of rural older adults: a qualitative study Background Although research has advanced the field of oncologic geriatrics with survivors to assess their cancer- related needs and devise patient-centered interventions, most of that research has excluded rural populations. This study aimed to understand the survivorship challenges and recommendations in the perspective of rural older adults. Methods This was a qualitative study that explored the survivorship challenges and recommendations of rural older adults who have completed curative intent chemotherapy for a solid tumor malignancy in the 12 months prior to enrollment in the present study. Results Twenty-seven older adult survivors from rural areas completed open-ended semi-structured interviews. The mean age was 73.4 (SD = 5.0). Most participants were non-Hispanic White (96.3%), female (59.3%), married (63.0%), and had up to a high school education (51.9%). Rural older survivors reported a general lack of awareness of survivorship care plans, communication challenges with healthcare team, transportation challenges, financial toxicity, psychological challenges, and diet and physical challenges. Rural older survivors recommend the provision of nutritional advice referral to exercise programs, and social support groups and for their healthcare providers to discuss their survivorship plan with them. Conclusions Although study participants reported similar survivorship challenges as urban older adult survivors, additional challenges reported regarding transportation and consideration of farm animals have not been previously reported. Heightened awareness of the survivorship needs of rural older adults may result in better survivorship care for this population. Keywords Older adults, Rural populations, Cancer survivorship, Geriatric oncology *Correspondence: Specialized Oncology Care & Research for our Elders Board Patient Evelyn Arana-Chicas and Caregiver Advocate Board (SOCAREboard), University of Rochester Evelyn_Arana@urmc.rochester.edu Medical Center, Rochester, NY, USA 1 5 James P. Wilmot Cancer Institute, University of Rochester Medical Center, Arnot Medical Center, Rochester, NY, USA Rochester, NY, USA Rochester General Hospital, Rochester, NY, USA 2 7 Division of Supportive Care in Cancer, Department of Surgery, University Department of Surgery, University of Rochester Medical Center, of Rochester Medical Center, Rochester, NY, USA Rochester, NY, USA 3 8 Geriatric Oncology Research Group, University of Rochester Medical Division of Hematology/Oncology, Department of Medicine, University Center, Rochester, NY, USA of Rochester Medical Center, New York, USA © The Author(s) 2023. 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The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 2 of 10 Background survivors reported worse health in all domains, were The number of older cancer survivors is increasing as more likely to report fair/poor health, and had more treatment and diagnosis improves clinical outcomes comorbidities than urban cancer survivors [42]. While [1–5]. Currently, 64% of cancer survivors are aged 65+; that analysis focused mostly on all age groups of rural by 2040, almost 50% will be aged 75+, including 18% cancer survivors, identifying the health and health care aged 85+ [6]. However, this gain in years of life is not fol- needs and opportunities to intervene with rural older lowed with gains in quality of life (QOL). Older cancer adult survivors is essential. Including these populations survivors have a high prevalence of functional and cogni- in research will help us identify areas to intervene in their tive impairment, comorbidities, and geriatric syndromes post-treatment survivorship care (e.g., care coordination, [7–10]. The National Academy of Medicine (NAM; pre - quality of life). Therefore, this study aimed to understand viously Institute of Medicine) has stated that the needs the survivorship challenges and recommendations in the of this population “are complex due to functional and perspective of rural older adults. cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need Methods for social support.” [11, 12]. Study design and population Older cancer survivors experience physical and cogni- This was a qualitative study that explored the survivor - tive impairments following curative-intent chemotherapy ship challenges and recommendations of rural older [13–17]. Symptomatic toxicities (e.g., fatigue, pain) fur- adults who have completed curative intent chemotherapy ther enhance physical and cognitive impairments, hospi- for a solid tumor malignancy in the 12 months prior to talizations, and mortality [18–24]. Older patients report enrollment in the present study. Participants underwent more interference with function from symptomatic tox- a semi-structured interview (conducted by authors EAC icities than younger patients [25–30]. Older patients with and SS), which closely followed domains developed by cancer consistently prioritize recovery of their physical Krok-Schoen et al. (Table 1) [43] that addresses perspec- and cognitive function after chemotherapy as two areas tives of survivorship care among older cancer survivors. of importance [31–33]. Purposive sampling was used to recruit participants Rural-dwelling individuals in general tend to be older, who met the following eligibility criteria: (1) Rural- of lower socioeconomic status, less likely to have trans- dwelling living in a zip code designated area per the portation, and less educated compared to those in urban HRSA Federal Office of Rural Health Policy (FORHP) or settings [34, 35]. Although research has advanced the the Centers for Medicare and Medicaid Services (CMS) field of oncologic geriatrics with survivors to assess their [44], (2) age 65 or older, (3) have a diagnosis of a solid cancer-related needs and devise patient-centered inter- tumor malignancy, (4) completed curative-intent che- ventions, most of that research has focused on urban motherapy in the past 12 months, and (5) has no future populations [36–41]. A study analyzing the 2006–2010 chemotherapy planned. Participants were recruited National Health Interview Survey found that rural adult from the Wilmot Cancer Institute (WCI) and affiliate Table 1 Domains of the interview guide that explored survivorship challenges of rural older adults Interview Domain Domain Description Example of interview question(s) 1. Development of Participants were asked whether they developed with their care Tell me whether you developed, or were provided with, a a survivorship care team, or were provided with, a cancer survivorship care plan survivorship care plan with your oncologist or physician plan (SCP). SCP was defined to the participant as “A summary of your after completing cancer treatment. treatment, together with recommendations for follow-up care and leading a healthy lifestyle.” 2. Communication Participants shared their experiences with communication What conversations did you have with your healthcare of survivorship care with their healthcare providers after completing curative-intent team about what you could expect as someone who has chemotherapy. completed chemotherapy? What are your impressions of how communication is/was going between your oncol- ogy team and primary care doctor? 3. Survivorship care Participants shared any challenges they may have experienced Did you experience any challenges during post-treatment challenges during their post-treatment phase (e.g., side effects, transportation, cancer care? If yes, tell me about them. etc.) 4. Supportive Participants shared whether they have a supportive network/indi- Please tell me about your social support network. What Network vidual, and if they do, their role during cancer treatment and after has been the role of family and/or friends during cancer the conclusion of cancer treatment. treatment? How about after your cancer treatment ended? 5. Recommenda- Participants shared recommendations to improving their post- Being a person who has completed chemotherapy, do you tions to survivorship treatment survivorship care. have any advice for how to improve your survivorship care care experience? Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 3 of 10 clinics and Arnot Medical Center using these methods: from all participants. Consent was obtained either in (1) clinic staff screened for eligible patients from the person during a participant’s clinic visit or via telephone. oncology clinic schedules (with site oncologist permis- Demographic information collected included age, gen- sion) who have completed curative-intent chemotherapy der, race, marital status, education, and annual income. for cancer in the past 12 months and presented the study Tumor and Treatment characteristics were also collected to the patient; (2) clinic staff identified prospective sub - that had cancer diagnosis type, cancer diagnosis date, and jects through electronic medical records and clinic staff tumor stage. Semi-structured interviews were conducted would call potential subjects to present the study; and (3) via telephone privately with the interviewer and partici- research staff sent MyChart messages to potentially eli - pant. After completing the interview, each participant gible participants with information about the study. This was compensated with a $50 pre-paid Visa card. EAC and study was approved by the University of Rochester Medi- SS completed interviews which lasted ~ 40 min and were cal Center Research Subjects Review Board and Arnot audiotaped. Medical Center Institutional Review Board. Analysis Study procedure and data collection Descriptive statistics of study participant characteristics After reviewing the study aims and risks and benefits and demographics were assessed. Interview transcripts to participation, informed verbal consent was obtained were professionally transcribed in their entirety and imported into the MAXQDA software analytic program Table 2 Patient characteristics (n = 27) for analysis. EAC, LHP, and FS conducted an inductive Mean (SD) or N (%) thematic analysis to code and analyze the data collected. Age (years) 73.4 (5.0) An iterative process was used to create a codebook that Gender included details about code definitions. EA and LHP Female 16 (59.3%) reviewed the codes together to organize them into over- Race or ethnicity arching themes. Non-Hispanic White 26 (96.3%) Hispanic 1 (3.7%) Results Marital Status Twenty-seven older adult survivors from rural areas Single or never married 1 (3.7%) completed open-ended semi-structured interviews. Married or domestic partnership 17 (63.0%) The mean age was 73.4 ( SD = 5.0; Table  2). Most partici- Separated, widowed, or divorced 9 (33.3%) pants were non-Hispanic White (96.3%), female (59.3%), Education married (63.0%), and had up to a high school education Less than high school 2 (7.4%) High school graduate 14 (51.9%) (51.9%). All participants had health insurance and 51.9% Some college or above 11 (40.7%) had an annual income <$50k. Most participants were Income diagnosed with stage III (69.6%) cancer, and the major- ≤US $50,000 14 (51.9%) ity were diagnosed with gastrointestinal cancers (56.6%). >US $50,000 12 (44.4%) All participants had at least one comorbidity, the most Declined to answer 1 (3.7%) common of which were high blood pressure and arthritis Cancer type (both at 70.0%). Breast 2 (8.7%) The following themes were identified: (1) Provision of Gastrointestinal 13 (56.6%) Genitourinary 2 (8.7%) a survivorship care plan, (2) Communication of survi- Gynecologic 1 (4.3%) vorship care, (3) Diet and physical challenges, (4) Psy- Lung 5 (21.7%) chological challenges; 6) Transportation Challenges. Cancer stage Recommendations included: (1) Referral to a dietitian/ I 2 (8.7%) nutritionist and (2) More information on exercise. Below II 5 (21.7%) is a summary of the themes with brief descriptions and III 16 (69.6%) representative quotes (also summarized in Table 3). Comorbidities Arthritis 17 (70.0%) Provision of a survivorship care plan (SCP) Circulation Trouble in Arms or Legs 5 (20.8%) Depression 7 (29.2%) When asked whether they developed a survivorship care Diabetes 5 (20.8%) plan with their healthcare team, most participants did Emphysema 5 (20.8%) not recall receiving an SCP. High Blood Pressure 17 (70.0%) Participant 7 (82-year-old male): Neither doctor gave Heart Disease 4 (16.7%) me any particular path to follow after the treatment. Osteoporosis 8 (33.3%) Stomach/Intestinal Disorders 8 (33.3%) Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 4 of 10 Table 3 Themes and representative quotes that emerged from thematic analysis (n = 27) Themes Example Quotations Provision of a survivorship care plan No recall of Participant 7 (82-year-old male): Neither doctor gave me any particular path to follow after the treatment. receiving a SCP Participant 15 (80-year-old female): No, not really. He [oncologist] said to me you’re pretty independent. You seem to be relatively healthy. Participant 13 (79-year-old female): P: No, I don’t think so. He [oncologist] does keep me up on my appointments, though. Participant 9 (72-year-old male): The oncology center gave me all these handouts, but I was going to recommend that someone go through it with you in person with caregiver present and before you have the chemo as well. Overwhelmed Participant 10 (83-year-old female): All the paperwork and everything that you get mentioned maintaining healthy lifestyle, healthy diet, with too much but as far as actual discussion, no. paperwork Participant 25 (65-year-old male): They overwhelm you with all this stuff [paperwork] and you start reading – a lot of it has such terms that you don’t understand. Participant 29 (78-year-old male): When you look at the paperwork that you get when you leave the visits, they’re generally very complete and they make recommendations, but no one sat down with me and said, ‘Here are the things that you may confront, here’s how we would recommend you handle it.‘ No discussions Participant 10 (82-year-old female): We didn’t really discuss it [expectations after treatment]; it’s like ‘You’re good’. on long-term Participant 15 (69-year-old female): Well, we did not really discuss what’s down the road because we really can’t tell. Everybody’s different. effects of Participant 1 (76-year-old male): I guess I assumed when I was done with chemo, after a period of time the side effects were going to go treatment away. Well, they’re not going away. Communica- tion regarding survivorship care Lack of con- Participant 1 (76-year-old male): He [the surgeon] told me he wanted to operate on the next Monday, and I told him I didn’t think I could sideration for get rid of the cows that fast because I’m a dairy farmer and I had 60 cows to milk every day. He said get somebody to take care of the cows. personal farm He didn’t care what I did and didn’t give me time to think about anything. animals Participant 29 (78-year-old male): Our life is very centered around the animals. I don’t think that they [providers] know that. Lack of com- Participant 33 (72-year-old female): I’m assuming she [PCP] can access my medical information, but I really haven’t talked to her about it munication [cancer]. between PCP Participant 15 (69-year-old female): Everything is online, so I would assume he [PCP] gets all the information that everyone else does. and cancer care Participant 9 (72-year-old male): My primary care doctor wanted more information from him [oncologist] because he felt like he wasn’t team getting enough information. He [PCP] had me give them messages to make sure he was getting the information. Learning of Participant 17 (82-year-old female): MyChart is wonderful in one way in that you can see things right up front and you can communicate cancer diagnosis with your doctors and they get back to you right away. But on the other hand, it’s a little scary when you see, oh, I have cancer, you know? through MyChart Participant 14 (70-year-old female): The other thing that I just thought was horrible was I’ve been waiting for the results of the biopsy and they said, you know, within 48 h. So, it was past 48 h, and I hadn’t gotten anything, but 15 min after their office closed, I got those results in MyChart. And then I’m looking at them and I’m thinking I know what it says, but then I’m like wait a minute, you know, I’m not medically trained for anything here. Diet and Physical Challenges Lack of appetite/ Participant 21 (82-year-old female): I don’t have the appetite I used to have. My weight has gone down quite a bit and things still don’t food tasting taste right to me. different Participant 19 (71-year-old female): After the chemotherapy, it was just what I could eat and they [healthcare team] were encouraging me to, but things didn’t taste good. Difficulty with Participant 10 (82-year-old female): With the oxygen, if I have to go to my pulmonary doctor, which is the 4th floor and it’s quite a walk, I physical activity had somebody go with me to carry the oxygen. Participant 1 (76-year-old male): I’d like to get back to work, but I just can’t do a lot. I was born on this farm and I kind of kept my body young. I’ve always worked, I’ve always been active. I’d like to get things done the way they were, but then when you’re 76 years old I guess that don’t happen. Transportation Challenges Reliance on Participant 1 (76-year-old male): I’ve been here in this town so long and I don’t even know where anything is. I’m not a good driver. I don’t someone to want to get in lot of traffic and stuff. take them to Participant 3 (76-year-old female): He [my son] took me to all those appointments and I have a friend that [also] takes me, because I appointments won’t drive to the city. Participant 23 (73-year-old female): I’m not comfortable driving because I’ve lost some of my peripheral vision. I have to have a ride wherever I go. Coordinate over- Participant 33 (71-year-old female): What we would do because our daughter lives out there [in Rochester], we would come out the night night stay with before, spend the night, have the treatment, and then drive home after treatment. family members in the city Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 5 of 10 Table 3 (continued) Themes Example Quotations Psychological Challenges Medical regret Participant 9 (72-year-old male): There were all sorts of issues with the chemotherapy that I feel like if I have to go through it again, I don’t know that I would want to. I think I would prefer the alternative. That’s how bad it is. Participant 20 (72-year-old female): That first week after treatment, I felt like if this is what it is going to be like I think I made a mistake. Fear of cancer Participant 10 (82-year-old female): I wonder what’s ahead, seeing as I know this is a cancer that is apt to return, that’s at the back of my recurrence mind. Participant 4 (66-year-old male): Every time a scan comes up, for a couple of weeks I get a little nervous. Participant 25 (65-year-old male): There was ground glass opacity in one of my lungs in the upper lobe, she [the doctor] thought that it could be either metastatic lung cancer and that destroyed me. Financial Toxicity Financial Toxicity Participant 1 (76-year-old male): I’ve been on this farm 73 years. I sold my cows. There is no income coming in, and I got 400 acres here Present and I got bills to pay. Participant 9 (72-year-old male): I take Creon and I’ll have to take it for the rest of my life after the Whipple procedure. It costs me around $425 a month. Participant 19 (71-year-old female): My one bill from chemo was over $3,000. They knocked it down to like $900 and I’m paying them like a hundred dollars a month. Recommendations to improve survivorship care Referral to a Participant 14 (70-year-old female): I think it would have been good for me to have access to a good dietitian, who would have been able dietitian to work with me with my food allergy issues. Participant 1 (76-year-old male): I asked about diet but the doctors here don’t seem to worry too much about that. He [doctor] told me to eat whatever I want. Participant 9 (72-year-old male): Maybe nutrition info I would have liked. I know I should be eating nutritious meals. Information on Participant 4 (65-year-old male): I’ve actually been thinking of asking is there any exercises that maybe I can start. You know, taking care exercise of my body exercise-wise. Participant 10 (82-year-old female): I’d like to do some more walking. I think it would help me. Participant 17 (82-year-old female): I’ve been a very active person and I know quite a bit about nutrition, so I guess in my case, maybe they [healthcare team] thought it wasn’t needed. Referral to Participant 19 (71-year-old female): Possibly [referral to] a support group. We had talked about this one time actually at the oncologist’s Cancer Support office, but it never happened. Groups Participant 10 (82-year-old female): I just want somebody to talk to. (82, female) Discuss survivor- Participant 9 (72-year-old male): The oncology center gave me all these handouts but I was gonna recommend that someone go ship plan with through it with you in person with caregiver present. patient Participant 20 (72-year-old female): We didn’t sit down and hammer it [survivorship plan] out. I’ve gotten so much paperwork since this whole thing started that’s hard to even keep track of what I’ve got and what I don’t have. There is no discussion set up. Participant 15 (80-year-old female): No, not really. He generally very complete and they make recommenda- [oncologist] said to me you’re pretty independent. You tions, but no one sat down with me and said, ‘Here are the seem to be relatively healthy. things that you may confront, here’s how we would recom- Participant 13 (79-year-old female): P: No, I don’t think mend you handle it.‘ so. He [oncologist] does keep me up on my appointments, though. Communication regarding survivorship care Several participants recalled receiving paperwork but All participants shared their communication experiences reported being overwhelmed and having medical terms with their providers. Participants reported that their they did not understand. Some participants also reported healthcare providers were not taking the time to consider that they needed someone to sit with them to discuss the their daily experiences managing farm animals. Provider- paperwork that they received. level barriers included the lack of continuity of care Participant 10 (83-year-old female): All the paper- between the cancer care team with PCP and vice-versa. work and everything that you get mentioned maintaining Participant 1 (76-year-old male): He [the surgeon] healthy lifestyle, healthy diet, but as far as actual discus- told me he wanted to operate on the next Monday, and sion, no. I told him I didn’t think I could get rid of the cows that Participant 25 (65-year-old male): They overwhelm you fast because I’m a dairy farmer and I had 60 cows to milk with all this stuff [paperwork] and you start reading – a every day. He said get somebody to take care of the cows. lot of it has such terms that you don’t understand. He didn’t care what I did and didn’t give me time to think Participant 29 (78-year-old male): When you look at the about anything. paperwork that you get when you leave the visits, they’re Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 6 of 10 Participant 29 (78-year-old male): Our life is very cen- Participant 3 (76-year-old female): He [my son] took me tered around the animals. I don’t think that they [provid- to all those appointments and I have a friend that [also] ers] know that. takes me, because I won’t drive to the city. Most participants assumed that their primary care Participant 33 (71-year-old female): What we would provider (PCP) is communicating with their cancer do because our daughter lives out there [in Rochester], we care team electronically, although some of them have would come out the night before, spend the night, have the not talked to their PCP in a while. One patient reported treatment, and then drive home after treatment. acting as a messenger between them to ensure his PCP received information regarding his health. Psychological challenges Participant 33 (72-year-old female): I’m assuming she A number of participants reported regret with undergo- [PCP] can access my medical information, but I really ing chemotherapy, citing side effects were more intense haven’t talked to her about it [cancer]. than they thought it would be. Some patients also shared Participant 15 (69-year-old female): Everything is their concern that their cancer might return. online, so I would assume he [PCP] gets all the informa- Participant 9 (72-year-old male): There were all sorts of tion that everyone else does. issues with the chemotherapy that I feel. Participant 9 (72-year-old male): My primary care like if I have to go through it again, I don’t know that I doctor wanted more information from him [oncologist] would want to. I think I would prefer the. because he felt like he wasn’t getting enough information. alternative. That’s how bad it is. He [PCP] had me give them messages to make sure he was Participant 20 (72-year-old female): That first week getting the information. after treatment, I felt like if this is what it is going to be like I think I made a mistake. Diet and physical challenges Participant 10 (82-year-old female): I wonder what’s Participants describe not having an appetite and food ahead, seeing as I know this is a cancer. not tasting the same, even after completing their can- that is apt to return, that’s at the back of my mind. cer treatment. One 82-year old female participant said: I don’t have the appetite I used to have. My weight has gone Financial toxicity down quite a bit and things still don’t taste right to me. Some participants reported financial challenges with pay - Participants also described losing their physical strength ing medical bills related to their cancer treatments and and feeling fatigued from their treatment. medications. One patient, a dairy farmer, had to sell his Participant 1 (76-year-old male): I’d like to get back to cows and now has no income and is struggling financially. work, but I just can’t do a lot. I was born on this farm Participant 1 (76-year-old male): I’ve been on this farm and I kind of kept my body young. I’ve always worked, I’ve 73 years. I sold my cows. There is no income coming in, always been active. I’d like to get things done the way they and I got 400 acres here and I got bills to pay. were, but then when you’re 76 years old I guess that don’t Participant 9 (72-year-old male): I take Creon and I’ll happen. have to take it for the rest of my life after the Whipple pro- Participant 9 (72-year-old male): The chemotherapy cedure. It costs me around $425 a month. actually drained me so bad I have no ambition to do any- Participant 19 (71-year-old female): My one bill from thing and I felt like I couldn’t do anything; I was exhausted chemo was over $3,000. They knocked it down to like $900 and it was an effort for me to even walk. and I’m paying them like a hundred dollars a month. Transportation Recommendations to improve survivorship health Many patients reported being unable to drive and need- Several participants reported wanting access to a dieti- ing to rely on someone to take them to their cancer care cian and nutritional advice. One participant mentioned appointments. Some also shared that they were not his doctor told him to eat anything he wanted. comfortable driving far out of their hometown. Some Participant 14 (70-year-old female): I think it would participants did report that although they live far from have been good for me to have access to a good dietitian, Rochester, they were able to handle the drive, with some who would have been able to work with me with my food even coordinating overnight stay with family members allergy issues. who live closer to the city. Participant 1 (76-year-old male): I asked about diet but Participant 1 (76-year-old male): I’ve been here in this the doctors here don’t seem to worry too much about that. town so long and I don’t even know where anything is. I’m He [doctor] told me to eat whatever I want. not a good driver. I don’t want to get in lot of traffic and Several participants also reported wanting to exercise stuff. more and wanted access to specific exercise plans. One participant reported thinking that her doctors did not Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 7 of 10 provide her with an exercise plan because she is already a In addition, participants reported providers not tak- physically active person. ing the time to consider the impact that their patients’ Participant 4 (65-year-old male): I’ve actually been rural lifestyle may have on their cancer care. Participants thinking of asking is there any exercises that maybe I can reported caring for personal farm animals but reported start. You know, taking care of my body exercise-wise. providers not considering their animals’ care. This in Participant 17 (82-year-old female): I’ve been a very turn, can lead to a reduced QOL if the animals have to be active person and I know quite a bit about nutrition, so I sold and possibly to financial toxicity if the farm animals guess in my case, maybe they [healthcare team] thought it were used as a source of income. Moreover, there appears wasn’t needed. to be a lack of communication between the patient’s Participants also would like referrals to cancer sur- cancer care team and the PCP. Previous research has vivorship groups, citing loneliness and a need to talk to also shown that PCPs are often disconnected from the someone. cancer care team due to ineffective communication and Participant 19 (71-year-old female): Possibly a support poor integration of treatment plans [49, 50]. In addition, group. We had talked about this one time actually at the as comorbidities may negatively impact cancer survival oncologist’s office, but it never happened. outcomes [51], PCPs are necessary throughout cancer Participant 10 (82-year-old female): Just that I have survivorship. Given that older adult [] and rural indi- somebody to talk to. (82, female) viduals [5253] are more likely to have comorbidities than Participants also suggesting having someone from their younger adults and urban individuals, PCPs need a more healthcare team talk them through their survivorship active role in managing comorbidities and side effects of plan. older cancer survivors. Participant 9 (72-year-old male): The oncology center Although all participants could attend their cancer gave me all these handouts but I was gonna recommend care appointments, they had to rely on someone to drive that someone go through it with you in person with care- them to their appointments. Participants did not men- giver present. tion having trouble finding someone to take them to their Participant 20 (72-year-old female): We didn’t sit down appointments and may be associated with them having a and hammer it [survivorship plan] out. I’ve gotten so strong social support network. Research has shown that much paperwork since this whole thing started that’s hard rural cancer survivors lack reliable and affordable trans - to even keep track of what I’ve got and what I don’t have. portation which may prevent them from accessing timely There is no discussion set up. and effective cancer care [ 54, 55]. Future research should look at transportation challenges from more historically Discussion marginalized rural older adult populations (e.g., racial/ This qualitative study sought to understand the cancer ethnic minorities, lower income, etc.). survivorship needs of rural older adults aged 65 + who Moreover, medical regret undergoing chemotherapy have completed curative-intent chemotherapy in the and fear of cancer recurrence was reported by some par- past 12 months. Results indicated a variety of challenges ticipants in this study. Although research has shown low encountered, including a general lack of awareness of levels of decision regret for older female breast cancer survivorship care plans, communication challenges with survivors [56], future research should explore the extent the healthcare team, transportation challenges, psycho- of decisional regret in a larger sample of rural older adult logical challenges, and diet and physical challenges. survivors. Most participants did not recall receiving a survivor- Not surprisingly, participants recommended provid- ship care plan (SCP) from their healthcare team, and the ing nutritional advice and referral to exercise programs. few that did receive a SCP reported being overwhelmed Nutrition is important for older adult survivors for with all the paperwork and health care providers not tak- numerous reasons, including needing help managing ing the time to talk them through the SCP. This is cor - issues with their gastrointestinal tract as a result of treat- roborated by previous research reporting that few older ment, interest in behavioral diet strategies to reduce the adults develop a SCP and those that do report poor com- risk of cancer recurrence, and to help manage comorbidi- munication with their healthcare providers [43, 45]. Past ties [57]. Moreover, research suggest that physical activ- research also suggests that survivors need assistance in ity interventions are safe and effective in older cancer implementing the recommendations outlined in their survivors [58]. Older patients with cancer consistently SCP (e.g., to schedule and attend follow-up appoint- prioritize recovery of their physical function after che- ments, behavior change via diet and/or exercise, etc.) motherapy [59, 60]. [46, 47]. Although there is controversy about SCPs [48], Most of our results are similar to that reported by patients should be educated on recommendations for fol- low-income urban cancer survivors. However, trans- low-up care and leading a healthy lifestyle. portation barriers, while experienced by both rural and Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 8 of 10 Acknowledgements urban individuals, differ for both. Most participants in Not applicable. our study had a car but were not able to drive the long Authors’ contributions distance to their healthcare appointments. Urban low- Study concepts-Evelyn Arana-Chicas, Supriya Mohile; Study design-Evelyn income individuals experience different transportation Arana-Chicas, Supriya Mohile; Data acquisition-Saloni Sharma, Fiona Stauffer, Laura Hincapie Prisco, Supriya Mohile; Quality control of data-Laura Hincapie barriers such as not having any form of transportation Prisco, Supriya Mohile, Evelyn Arana-Chicas; Data analysis and interpretation- or monetary resources to take the bus go to their health- Evelyn Arana-Chicas, Laura Hincapie Prisco, Supriya Mohile; Manuscript care visit. The lack of consideration of farm animals was preparation-Evelyn Arana-Chicas; Manuscript editing; All authors; Manuscript review-All authors. also unique to rural populations [62–64]. The common barriers between both urban and rural might be more Funding related to socioeconomic status than rurality – a quanti- This research is supported by the National Institute on Aging at the National Institutes of Health (K24AG056589 to SGM; K76AG064394 to AM) and the tative study with a larger sample size that investigates this National Cancer Institute at the National Institutes of Health ( T32CA102618 to would be worthwhile. EAC, and UG1CA189961 to KMM). This study has several limitations. The sample was Data Availability racially homogeneous, with most of our sample self-iden- The datasets used and/or analyzed during the current study are available from tifying as non-Hispanic White, which limits generaliz- the corresponding author on reasonable request. ability to other populations. Given that most agricultural farmworkers (78%) are Hispanic, [64] more work needs Declarations to be done to recruit this population and other racially Ethics approval and consent to participate and ethnically diverse rural populations to learn about This study was approved by the University of Rochester Medical Center their unique survivorship needs. Local partnerships with Research Subjects Review Board and Arnot Medical Center Institutional farmworker coalitions and with local rural clinics and Review Board. All methods of this study were performed in accordance with the Declaration of Helsinki. All methods were carried out in accordance with organizations can assist in the identification and recruit - relevant guidelines and regulations. Informed consent was obtained from all ment of these underserved populations. Moreover, most subjects and/or their legal guardian(s). of our sample had a strong social support network. It is Consent for publication possible that rural older adult survivors who lack a social Not applicable. support network and/or are a racial and/or ethnic indi- viduals, would have additional survivorship challenges Competing interests The authors declare that they have no competing interests. than are reported in this study. Future research should consider understanding the cancer survivorship chal- Received: 28 June 2023 / Accepted: 11 September 2023 lenges of these populations. Conclusions This qualitative study sought to understand the cancer survivorship needs of rural older adults. References Results indicated various challenges, including a gen- 1. Rowland JH, Bellizzi KM. Cancer survivorship issues: life after treatment eral lack of awareness of survivorship care plans, commu- and implications for an aging population. J Clin Oncol. 2014. https://doi. org/10.1200/JCO.2014.55.8361. nication challenges with healthcare team, transportation 2. 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Cancer survivorship challenges of rural older adults: a qualitative study

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Abstract

Background Although research has advanced the field of oncologic geriatrics with survivors to assess their cancer- related needs and devise patient-centered interventions, most of that research has excluded rural populations. This study aimed to understand the survivorship challenges and recommendations in the perspective of rural older adults. Methods This was a qualitative study that explored the survivorship challenges and recommendations of rural older adults who have completed curative intent chemotherapy for a solid tumor malignancy in the 12 months prior to enrollment in the present study. Results Twenty-seven older adult survivors from rural areas completed open-ended semi-structured interviews. The mean age was 73.4 (SD = 5.0). Most participants were non-Hispanic White (96.3%), female (59.3%), married (63.0%), and had up to a high school education (51.9%). Rural older survivors reported a general lack of awareness of survivorship care plans, communication challenges with healthcare team, transportation challenges, financial toxicity, psychological challenges, and diet and physical challenges. Rural older survivors recommend the provision of nutritional advice referral to exercise programs, and social support groups and for their healthcare providers to discuss their survivorship plan with them. Conclusions Although study participants reported similar survivorship challenges as urban older adult survivors, additional challenges reported regarding transportation and consideration of farm animals have not been previously reported. Heightened awareness of the survivorship needs of rural older adults may result in better survivorship care for this population. Keywords Older adults, Rural populations, Cancer survivorship, Geriatric oncology *Correspondence: Specialized Oncology Care & Research for our Elders Board Patient Evelyn Arana-Chicas and Caregiver Advocate Board (SOCAREboard), University of Rochester Evelyn_Arana@urmc.rochester.edu Medical Center, Rochester, NY, USA 1 5 James P. Wilmot Cancer Institute, University of Rochester Medical Center, Arnot Medical Center, Rochester, NY, USA Rochester, NY, USA Rochester General Hospital, Rochester, NY, USA 2 7 Division of Supportive Care in Cancer, Department of Surgery, University Department of Surgery, University of Rochester Medical Center, of Rochester Medical Center, Rochester, NY, USA Rochester, NY, USA 3 8 Geriatric Oncology Research Group, University of Rochester Medical Division of Hematology/Oncology, Department of Medicine, University Center, Rochester, NY, USA of Rochester Medical Center, New York, USA © The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 2 of 10 Background survivors reported worse health in all domains, were The number of older cancer survivors is increasing as more likely to report fair/poor health, and had more treatment and diagnosis improves clinical outcomes comorbidities than urban cancer survivors [42]. While [1–5]. Currently, 64% of cancer survivors are aged 65+; that analysis focused mostly on all age groups of rural by 2040, almost 50% will be aged 75+, including 18% cancer survivors, identifying the health and health care aged 85+ [6]. However, this gain in years of life is not fol- needs and opportunities to intervene with rural older lowed with gains in quality of life (QOL). Older cancer adult survivors is essential. Including these populations survivors have a high prevalence of functional and cogni- in research will help us identify areas to intervene in their tive impairment, comorbidities, and geriatric syndromes post-treatment survivorship care (e.g., care coordination, [7–10]. The National Academy of Medicine (NAM; pre - quality of life). Therefore, this study aimed to understand viously Institute of Medicine) has stated that the needs the survivorship challenges and recommendations in the of this population “are complex due to functional and perspective of rural older adults. cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need Methods for social support.” [11, 12]. Study design and population Older cancer survivors experience physical and cogni- This was a qualitative study that explored the survivor - tive impairments following curative-intent chemotherapy ship challenges and recommendations of rural older [13–17]. Symptomatic toxicities (e.g., fatigue, pain) fur- adults who have completed curative intent chemotherapy ther enhance physical and cognitive impairments, hospi- for a solid tumor malignancy in the 12 months prior to talizations, and mortality [18–24]. Older patients report enrollment in the present study. Participants underwent more interference with function from symptomatic tox- a semi-structured interview (conducted by authors EAC icities than younger patients [25–30]. Older patients with and SS), which closely followed domains developed by cancer consistently prioritize recovery of their physical Krok-Schoen et al. (Table 1) [43] that addresses perspec- and cognitive function after chemotherapy as two areas tives of survivorship care among older cancer survivors. of importance [31–33]. Purposive sampling was used to recruit participants Rural-dwelling individuals in general tend to be older, who met the following eligibility criteria: (1) Rural- of lower socioeconomic status, less likely to have trans- dwelling living in a zip code designated area per the portation, and less educated compared to those in urban HRSA Federal Office of Rural Health Policy (FORHP) or settings [34, 35]. Although research has advanced the the Centers for Medicare and Medicaid Services (CMS) field of oncologic geriatrics with survivors to assess their [44], (2) age 65 or older, (3) have a diagnosis of a solid cancer-related needs and devise patient-centered inter- tumor malignancy, (4) completed curative-intent che- ventions, most of that research has focused on urban motherapy in the past 12 months, and (5) has no future populations [36–41]. A study analyzing the 2006–2010 chemotherapy planned. Participants were recruited National Health Interview Survey found that rural adult from the Wilmot Cancer Institute (WCI) and affiliate Table 1 Domains of the interview guide that explored survivorship challenges of rural older adults Interview Domain Domain Description Example of interview question(s) 1. Development of Participants were asked whether they developed with their care Tell me whether you developed, or were provided with, a a survivorship care team, or were provided with, a cancer survivorship care plan survivorship care plan with your oncologist or physician plan (SCP). SCP was defined to the participant as “A summary of your after completing cancer treatment. treatment, together with recommendations for follow-up care and leading a healthy lifestyle.” 2. Communication Participants shared their experiences with communication What conversations did you have with your healthcare of survivorship care with their healthcare providers after completing curative-intent team about what you could expect as someone who has chemotherapy. completed chemotherapy? What are your impressions of how communication is/was going between your oncol- ogy team and primary care doctor? 3. Survivorship care Participants shared any challenges they may have experienced Did you experience any challenges during post-treatment challenges during their post-treatment phase (e.g., side effects, transportation, cancer care? If yes, tell me about them. etc.) 4. Supportive Participants shared whether they have a supportive network/indi- Please tell me about your social support network. What Network vidual, and if they do, their role during cancer treatment and after has been the role of family and/or friends during cancer the conclusion of cancer treatment. treatment? How about after your cancer treatment ended? 5. Recommenda- Participants shared recommendations to improving their post- Being a person who has completed chemotherapy, do you tions to survivorship treatment survivorship care. have any advice for how to improve your survivorship care care experience? Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 3 of 10 clinics and Arnot Medical Center using these methods: from all participants. Consent was obtained either in (1) clinic staff screened for eligible patients from the person during a participant’s clinic visit or via telephone. oncology clinic schedules (with site oncologist permis- Demographic information collected included age, gen- sion) who have completed curative-intent chemotherapy der, race, marital status, education, and annual income. for cancer in the past 12 months and presented the study Tumor and Treatment characteristics were also collected to the patient; (2) clinic staff identified prospective sub - that had cancer diagnosis type, cancer diagnosis date, and jects through electronic medical records and clinic staff tumor stage. Semi-structured interviews were conducted would call potential subjects to present the study; and (3) via telephone privately with the interviewer and partici- research staff sent MyChart messages to potentially eli - pant. After completing the interview, each participant gible participants with information about the study. This was compensated with a $50 pre-paid Visa card. EAC and study was approved by the University of Rochester Medi- SS completed interviews which lasted ~ 40 min and were cal Center Research Subjects Review Board and Arnot audiotaped. Medical Center Institutional Review Board. Analysis Study procedure and data collection Descriptive statistics of study participant characteristics After reviewing the study aims and risks and benefits and demographics were assessed. Interview transcripts to participation, informed verbal consent was obtained were professionally transcribed in their entirety and imported into the MAXQDA software analytic program Table 2 Patient characteristics (n = 27) for analysis. EAC, LHP, and FS conducted an inductive Mean (SD) or N (%) thematic analysis to code and analyze the data collected. Age (years) 73.4 (5.0) An iterative process was used to create a codebook that Gender included details about code definitions. EA and LHP Female 16 (59.3%) reviewed the codes together to organize them into over- Race or ethnicity arching themes. Non-Hispanic White 26 (96.3%) Hispanic 1 (3.7%) Results Marital Status Twenty-seven older adult survivors from rural areas Single or never married 1 (3.7%) completed open-ended semi-structured interviews. Married or domestic partnership 17 (63.0%) The mean age was 73.4 ( SD = 5.0; Table  2). Most partici- Separated, widowed, or divorced 9 (33.3%) pants were non-Hispanic White (96.3%), female (59.3%), Education married (63.0%), and had up to a high school education Less than high school 2 (7.4%) High school graduate 14 (51.9%) (51.9%). All participants had health insurance and 51.9% Some college or above 11 (40.7%) had an annual income <$50k. Most participants were Income diagnosed with stage III (69.6%) cancer, and the major- ≤US $50,000 14 (51.9%) ity were diagnosed with gastrointestinal cancers (56.6%). >US $50,000 12 (44.4%) All participants had at least one comorbidity, the most Declined to answer 1 (3.7%) common of which were high blood pressure and arthritis Cancer type (both at 70.0%). Breast 2 (8.7%) The following themes were identified: (1) Provision of Gastrointestinal 13 (56.6%) Genitourinary 2 (8.7%) a survivorship care plan, (2) Communication of survi- Gynecologic 1 (4.3%) vorship care, (3) Diet and physical challenges, (4) Psy- Lung 5 (21.7%) chological challenges; 6) Transportation Challenges. Cancer stage Recommendations included: (1) Referral to a dietitian/ I 2 (8.7%) nutritionist and (2) More information on exercise. Below II 5 (21.7%) is a summary of the themes with brief descriptions and III 16 (69.6%) representative quotes (also summarized in Table 3). Comorbidities Arthritis 17 (70.0%) Provision of a survivorship care plan (SCP) Circulation Trouble in Arms or Legs 5 (20.8%) Depression 7 (29.2%) When asked whether they developed a survivorship care Diabetes 5 (20.8%) plan with their healthcare team, most participants did Emphysema 5 (20.8%) not recall receiving an SCP. High Blood Pressure 17 (70.0%) Participant 7 (82-year-old male): Neither doctor gave Heart Disease 4 (16.7%) me any particular path to follow after the treatment. Osteoporosis 8 (33.3%) Stomach/Intestinal Disorders 8 (33.3%) Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 4 of 10 Table 3 Themes and representative quotes that emerged from thematic analysis (n = 27) Themes Example Quotations Provision of a survivorship care plan No recall of Participant 7 (82-year-old male): Neither doctor gave me any particular path to follow after the treatment. receiving a SCP Participant 15 (80-year-old female): No, not really. He [oncologist] said to me you’re pretty independent. You seem to be relatively healthy. Participant 13 (79-year-old female): P: No, I don’t think so. He [oncologist] does keep me up on my appointments, though. Participant 9 (72-year-old male): The oncology center gave me all these handouts, but I was going to recommend that someone go through it with you in person with caregiver present and before you have the chemo as well. Overwhelmed Participant 10 (83-year-old female): All the paperwork and everything that you get mentioned maintaining healthy lifestyle, healthy diet, with too much but as far as actual discussion, no. paperwork Participant 25 (65-year-old male): They overwhelm you with all this stuff [paperwork] and you start reading – a lot of it has such terms that you don’t understand. Participant 29 (78-year-old male): When you look at the paperwork that you get when you leave the visits, they’re generally very complete and they make recommendations, but no one sat down with me and said, ‘Here are the things that you may confront, here’s how we would recommend you handle it.‘ No discussions Participant 10 (82-year-old female): We didn’t really discuss it [expectations after treatment]; it’s like ‘You’re good’. on long-term Participant 15 (69-year-old female): Well, we did not really discuss what’s down the road because we really can’t tell. Everybody’s different. effects of Participant 1 (76-year-old male): I guess I assumed when I was done with chemo, after a period of time the side effects were going to go treatment away. Well, they’re not going away. Communica- tion regarding survivorship care Lack of con- Participant 1 (76-year-old male): He [the surgeon] told me he wanted to operate on the next Monday, and I told him I didn’t think I could sideration for get rid of the cows that fast because I’m a dairy farmer and I had 60 cows to milk every day. He said get somebody to take care of the cows. personal farm He didn’t care what I did and didn’t give me time to think about anything. animals Participant 29 (78-year-old male): Our life is very centered around the animals. I don’t think that they [providers] know that. Lack of com- Participant 33 (72-year-old female): I’m assuming she [PCP] can access my medical information, but I really haven’t talked to her about it munication [cancer]. between PCP Participant 15 (69-year-old female): Everything is online, so I would assume he [PCP] gets all the information that everyone else does. and cancer care Participant 9 (72-year-old male): My primary care doctor wanted more information from him [oncologist] because he felt like he wasn’t team getting enough information. He [PCP] had me give them messages to make sure he was getting the information. Learning of Participant 17 (82-year-old female): MyChart is wonderful in one way in that you can see things right up front and you can communicate cancer diagnosis with your doctors and they get back to you right away. But on the other hand, it’s a little scary when you see, oh, I have cancer, you know? through MyChart Participant 14 (70-year-old female): The other thing that I just thought was horrible was I’ve been waiting for the results of the biopsy and they said, you know, within 48 h. So, it was past 48 h, and I hadn’t gotten anything, but 15 min after their office closed, I got those results in MyChart. And then I’m looking at them and I’m thinking I know what it says, but then I’m like wait a minute, you know, I’m not medically trained for anything here. Diet and Physical Challenges Lack of appetite/ Participant 21 (82-year-old female): I don’t have the appetite I used to have. My weight has gone down quite a bit and things still don’t food tasting taste right to me. different Participant 19 (71-year-old female): After the chemotherapy, it was just what I could eat and they [healthcare team] were encouraging me to, but things didn’t taste good. Difficulty with Participant 10 (82-year-old female): With the oxygen, if I have to go to my pulmonary doctor, which is the 4th floor and it’s quite a walk, I physical activity had somebody go with me to carry the oxygen. Participant 1 (76-year-old male): I’d like to get back to work, but I just can’t do a lot. I was born on this farm and I kind of kept my body young. I’ve always worked, I’ve always been active. I’d like to get things done the way they were, but then when you’re 76 years old I guess that don’t happen. Transportation Challenges Reliance on Participant 1 (76-year-old male): I’ve been here in this town so long and I don’t even know where anything is. I’m not a good driver. I don’t someone to want to get in lot of traffic and stuff. take them to Participant 3 (76-year-old female): He [my son] took me to all those appointments and I have a friend that [also] takes me, because I appointments won’t drive to the city. Participant 23 (73-year-old female): I’m not comfortable driving because I’ve lost some of my peripheral vision. I have to have a ride wherever I go. Coordinate over- Participant 33 (71-year-old female): What we would do because our daughter lives out there [in Rochester], we would come out the night night stay with before, spend the night, have the treatment, and then drive home after treatment. family members in the city Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 5 of 10 Table 3 (continued) Themes Example Quotations Psychological Challenges Medical regret Participant 9 (72-year-old male): There were all sorts of issues with the chemotherapy that I feel like if I have to go through it again, I don’t know that I would want to. I think I would prefer the alternative. That’s how bad it is. Participant 20 (72-year-old female): That first week after treatment, I felt like if this is what it is going to be like I think I made a mistake. Fear of cancer Participant 10 (82-year-old female): I wonder what’s ahead, seeing as I know this is a cancer that is apt to return, that’s at the back of my recurrence mind. Participant 4 (66-year-old male): Every time a scan comes up, for a couple of weeks I get a little nervous. Participant 25 (65-year-old male): There was ground glass opacity in one of my lungs in the upper lobe, she [the doctor] thought that it could be either metastatic lung cancer and that destroyed me. Financial Toxicity Financial Toxicity Participant 1 (76-year-old male): I’ve been on this farm 73 years. I sold my cows. There is no income coming in, and I got 400 acres here Present and I got bills to pay. Participant 9 (72-year-old male): I take Creon and I’ll have to take it for the rest of my life after the Whipple procedure. It costs me around $425 a month. Participant 19 (71-year-old female): My one bill from chemo was over $3,000. They knocked it down to like $900 and I’m paying them like a hundred dollars a month. Recommendations to improve survivorship care Referral to a Participant 14 (70-year-old female): I think it would have been good for me to have access to a good dietitian, who would have been able dietitian to work with me with my food allergy issues. Participant 1 (76-year-old male): I asked about diet but the doctors here don’t seem to worry too much about that. He [doctor] told me to eat whatever I want. Participant 9 (72-year-old male): Maybe nutrition info I would have liked. I know I should be eating nutritious meals. Information on Participant 4 (65-year-old male): I’ve actually been thinking of asking is there any exercises that maybe I can start. You know, taking care exercise of my body exercise-wise. Participant 10 (82-year-old female): I’d like to do some more walking. I think it would help me. Participant 17 (82-year-old female): I’ve been a very active person and I know quite a bit about nutrition, so I guess in my case, maybe they [healthcare team] thought it wasn’t needed. Referral to Participant 19 (71-year-old female): Possibly [referral to] a support group. We had talked about this one time actually at the oncologist’s Cancer Support office, but it never happened. Groups Participant 10 (82-year-old female): I just want somebody to talk to. (82, female) Discuss survivor- Participant 9 (72-year-old male): The oncology center gave me all these handouts but I was gonna recommend that someone go ship plan with through it with you in person with caregiver present. patient Participant 20 (72-year-old female): We didn’t sit down and hammer it [survivorship plan] out. I’ve gotten so much paperwork since this whole thing started that’s hard to even keep track of what I’ve got and what I don’t have. There is no discussion set up. Participant 15 (80-year-old female): No, not really. He generally very complete and they make recommenda- [oncologist] said to me you’re pretty independent. You tions, but no one sat down with me and said, ‘Here are the seem to be relatively healthy. things that you may confront, here’s how we would recom- Participant 13 (79-year-old female): P: No, I don’t think mend you handle it.‘ so. He [oncologist] does keep me up on my appointments, though. Communication regarding survivorship care Several participants recalled receiving paperwork but All participants shared their communication experiences reported being overwhelmed and having medical terms with their providers. Participants reported that their they did not understand. Some participants also reported healthcare providers were not taking the time to consider that they needed someone to sit with them to discuss the their daily experiences managing farm animals. Provider- paperwork that they received. level barriers included the lack of continuity of care Participant 10 (83-year-old female): All the paper- between the cancer care team with PCP and vice-versa. work and everything that you get mentioned maintaining Participant 1 (76-year-old male): He [the surgeon] healthy lifestyle, healthy diet, but as far as actual discus- told me he wanted to operate on the next Monday, and sion, no. I told him I didn’t think I could get rid of the cows that Participant 25 (65-year-old male): They overwhelm you fast because I’m a dairy farmer and I had 60 cows to milk with all this stuff [paperwork] and you start reading – a every day. He said get somebody to take care of the cows. lot of it has such terms that you don’t understand. He didn’t care what I did and didn’t give me time to think Participant 29 (78-year-old male): When you look at the about anything. paperwork that you get when you leave the visits, they’re Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 6 of 10 Participant 29 (78-year-old male): Our life is very cen- Participant 3 (76-year-old female): He [my son] took me tered around the animals. I don’t think that they [provid- to all those appointments and I have a friend that [also] ers] know that. takes me, because I won’t drive to the city. Most participants assumed that their primary care Participant 33 (71-year-old female): What we would provider (PCP) is communicating with their cancer do because our daughter lives out there [in Rochester], we care team electronically, although some of them have would come out the night before, spend the night, have the not talked to their PCP in a while. One patient reported treatment, and then drive home after treatment. acting as a messenger between them to ensure his PCP received information regarding his health. Psychological challenges Participant 33 (72-year-old female): I’m assuming she A number of participants reported regret with undergo- [PCP] can access my medical information, but I really ing chemotherapy, citing side effects were more intense haven’t talked to her about it [cancer]. than they thought it would be. Some patients also shared Participant 15 (69-year-old female): Everything is their concern that their cancer might return. online, so I would assume he [PCP] gets all the informa- Participant 9 (72-year-old male): There were all sorts of tion that everyone else does. issues with the chemotherapy that I feel. Participant 9 (72-year-old male): My primary care like if I have to go through it again, I don’t know that I doctor wanted more information from him [oncologist] would want to. I think I would prefer the. because he felt like he wasn’t getting enough information. alternative. That’s how bad it is. He [PCP] had me give them messages to make sure he was Participant 20 (72-year-old female): That first week getting the information. after treatment, I felt like if this is what it is going to be like I think I made a mistake. Diet and physical challenges Participant 10 (82-year-old female): I wonder what’s Participants describe not having an appetite and food ahead, seeing as I know this is a cancer. not tasting the same, even after completing their can- that is apt to return, that’s at the back of my mind. cer treatment. One 82-year old female participant said: I don’t have the appetite I used to have. My weight has gone Financial toxicity down quite a bit and things still don’t taste right to me. Some participants reported financial challenges with pay - Participants also described losing their physical strength ing medical bills related to their cancer treatments and and feeling fatigued from their treatment. medications. One patient, a dairy farmer, had to sell his Participant 1 (76-year-old male): I’d like to get back to cows and now has no income and is struggling financially. work, but I just can’t do a lot. I was born on this farm Participant 1 (76-year-old male): I’ve been on this farm and I kind of kept my body young. I’ve always worked, I’ve 73 years. I sold my cows. There is no income coming in, always been active. I’d like to get things done the way they and I got 400 acres here and I got bills to pay. were, but then when you’re 76 years old I guess that don’t Participant 9 (72-year-old male): I take Creon and I’ll happen. have to take it for the rest of my life after the Whipple pro- Participant 9 (72-year-old male): The chemotherapy cedure. It costs me around $425 a month. actually drained me so bad I have no ambition to do any- Participant 19 (71-year-old female): My one bill from thing and I felt like I couldn’t do anything; I was exhausted chemo was over $3,000. They knocked it down to like $900 and it was an effort for me to even walk. and I’m paying them like a hundred dollars a month. Transportation Recommendations to improve survivorship health Many patients reported being unable to drive and need- Several participants reported wanting access to a dieti- ing to rely on someone to take them to their cancer care cian and nutritional advice. One participant mentioned appointments. Some also shared that they were not his doctor told him to eat anything he wanted. comfortable driving far out of their hometown. Some Participant 14 (70-year-old female): I think it would participants did report that although they live far from have been good for me to have access to a good dietitian, Rochester, they were able to handle the drive, with some who would have been able to work with me with my food even coordinating overnight stay with family members allergy issues. who live closer to the city. Participant 1 (76-year-old male): I asked about diet but Participant 1 (76-year-old male): I’ve been here in this the doctors here don’t seem to worry too much about that. town so long and I don’t even know where anything is. I’m He [doctor] told me to eat whatever I want. not a good driver. I don’t want to get in lot of traffic and Several participants also reported wanting to exercise stuff. more and wanted access to specific exercise plans. One participant reported thinking that her doctors did not Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 7 of 10 provide her with an exercise plan because she is already a In addition, participants reported providers not tak- physically active person. ing the time to consider the impact that their patients’ Participant 4 (65-year-old male): I’ve actually been rural lifestyle may have on their cancer care. Participants thinking of asking is there any exercises that maybe I can reported caring for personal farm animals but reported start. You know, taking care of my body exercise-wise. providers not considering their animals’ care. This in Participant 17 (82-year-old female): I’ve been a very turn, can lead to a reduced QOL if the animals have to be active person and I know quite a bit about nutrition, so I sold and possibly to financial toxicity if the farm animals guess in my case, maybe they [healthcare team] thought it were used as a source of income. Moreover, there appears wasn’t needed. to be a lack of communication between the patient’s Participants also would like referrals to cancer sur- cancer care team and the PCP. Previous research has vivorship groups, citing loneliness and a need to talk to also shown that PCPs are often disconnected from the someone. cancer care team due to ineffective communication and Participant 19 (71-year-old female): Possibly a support poor integration of treatment plans [49, 50]. In addition, group. We had talked about this one time actually at the as comorbidities may negatively impact cancer survival oncologist’s office, but it never happened. outcomes [51], PCPs are necessary throughout cancer Participant 10 (82-year-old female): Just that I have survivorship. Given that older adult [] and rural indi- somebody to talk to. (82, female) viduals [5253] are more likely to have comorbidities than Participants also suggesting having someone from their younger adults and urban individuals, PCPs need a more healthcare team talk them through their survivorship active role in managing comorbidities and side effects of plan. older cancer survivors. Participant 9 (72-year-old male): The oncology center Although all participants could attend their cancer gave me all these handouts but I was gonna recommend care appointments, they had to rely on someone to drive that someone go through it with you in person with care- them to their appointments. Participants did not men- giver present. tion having trouble finding someone to take them to their Participant 20 (72-year-old female): We didn’t sit down appointments and may be associated with them having a and hammer it [survivorship plan] out. I’ve gotten so strong social support network. Research has shown that much paperwork since this whole thing started that’s hard rural cancer survivors lack reliable and affordable trans - to even keep track of what I’ve got and what I don’t have. portation which may prevent them from accessing timely There is no discussion set up. and effective cancer care [ 54, 55]. Future research should look at transportation challenges from more historically Discussion marginalized rural older adult populations (e.g., racial/ This qualitative study sought to understand the cancer ethnic minorities, lower income, etc.). survivorship needs of rural older adults aged 65 + who Moreover, medical regret undergoing chemotherapy have completed curative-intent chemotherapy in the and fear of cancer recurrence was reported by some par- past 12 months. Results indicated a variety of challenges ticipants in this study. Although research has shown low encountered, including a general lack of awareness of levels of decision regret for older female breast cancer survivorship care plans, communication challenges with survivors [56], future research should explore the extent the healthcare team, transportation challenges, psycho- of decisional regret in a larger sample of rural older adult logical challenges, and diet and physical challenges. survivors. Most participants did not recall receiving a survivor- Not surprisingly, participants recommended provid- ship care plan (SCP) from their healthcare team, and the ing nutritional advice and referral to exercise programs. few that did receive a SCP reported being overwhelmed Nutrition is important for older adult survivors for with all the paperwork and health care providers not tak- numerous reasons, including needing help managing ing the time to talk them through the SCP. This is cor - issues with their gastrointestinal tract as a result of treat- roborated by previous research reporting that few older ment, interest in behavioral diet strategies to reduce the adults develop a SCP and those that do report poor com- risk of cancer recurrence, and to help manage comorbidi- munication with their healthcare providers [43, 45]. Past ties [57]. Moreover, research suggest that physical activ- research also suggests that survivors need assistance in ity interventions are safe and effective in older cancer implementing the recommendations outlined in their survivors [58]. Older patients with cancer consistently SCP (e.g., to schedule and attend follow-up appoint- prioritize recovery of their physical function after che- ments, behavior change via diet and/or exercise, etc.) motherapy [59, 60]. [46, 47]. Although there is controversy about SCPs [48], Most of our results are similar to that reported by patients should be educated on recommendations for fol- low-income urban cancer survivors. However, trans- low-up care and leading a healthy lifestyle. portation barriers, while experienced by both rural and Arana-Chicas et al. BMC Cancer (2023) 23:917 Page 8 of 10 Acknowledgements urban individuals, differ for both. Most participants in Not applicable. our study had a car but were not able to drive the long Authors’ contributions distance to their healthcare appointments. Urban low- Study concepts-Evelyn Arana-Chicas, Supriya Mohile; Study design-Evelyn income individuals experience different transportation Arana-Chicas, Supriya Mohile; Data acquisition-Saloni Sharma, Fiona Stauffer, Laura Hincapie Prisco, Supriya Mohile; Quality control of data-Laura Hincapie barriers such as not having any form of transportation Prisco, Supriya Mohile, Evelyn Arana-Chicas; Data analysis and interpretation- or monetary resources to take the bus go to their health- Evelyn Arana-Chicas, Laura Hincapie Prisco, Supriya Mohile; Manuscript care visit. The lack of consideration of farm animals was preparation-Evelyn Arana-Chicas; Manuscript editing; All authors; Manuscript review-All authors. also unique to rural populations [62–64]. The common barriers between both urban and rural might be more Funding related to socioeconomic status than rurality – a quanti- This research is supported by the National Institute on Aging at the National Institutes of Health (K24AG056589 to SGM; K76AG064394 to AM) and the tative study with a larger sample size that investigates this National Cancer Institute at the National Institutes of Health ( T32CA102618 to would be worthwhile. EAC, and UG1CA189961 to KMM). This study has several limitations. The sample was Data Availability racially homogeneous, with most of our sample self-iden- The datasets used and/or analyzed during the current study are available from tifying as non-Hispanic White, which limits generaliz- the corresponding author on reasonable request. ability to other populations. Given that most agricultural farmworkers (78%) are Hispanic, [64] more work needs Declarations to be done to recruit this population and other racially Ethics approval and consent to participate and ethnically diverse rural populations to learn about This study was approved by the University of Rochester Medical Center their unique survivorship needs. Local partnerships with Research Subjects Review Board and Arnot Medical Center Institutional farmworker coalitions and with local rural clinics and Review Board. All methods of this study were performed in accordance with the Declaration of Helsinki. All methods were carried out in accordance with organizations can assist in the identification and recruit - relevant guidelines and regulations. Informed consent was obtained from all ment of these underserved populations. Moreover, most subjects and/or their legal guardian(s). of our sample had a strong social support network. It is Consent for publication possible that rural older adult survivors who lack a social Not applicable. support network and/or are a racial and/or ethnic indi- viduals, would have additional survivorship challenges Competing interests The authors declare that they have no competing interests. than are reported in this study. Future research should consider understanding the cancer survivorship chal- Received: 28 June 2023 / Accepted: 11 September 2023 lenges of these populations. Conclusions This qualitative study sought to understand the cancer survivorship needs of rural older adults. References Results indicated various challenges, including a gen- 1. Rowland JH, Bellizzi KM. Cancer survivorship issues: life after treatment eral lack of awareness of survivorship care plans, commu- and implications for an aging population. J Clin Oncol. 2014. https://doi. org/10.1200/JCO.2014.55.8361. nication challenges with healthcare team, transportation 2. 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Journal

BMC Cancer – Springer Journals

Published: Sep 28, 2023

Keywords: Older adults; Rural populations; Cancer survivorship; Geriatric oncology

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