{"paper_id":"0318769a-8911-4544-bcd7-7db0fab13738","body_text":"A Qualitative Study of Barriers to Care-Seeking for Diabetic Foot Ulceration Across Multiple Levels of the Healthcare System | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article A Qualitative Study of Barriers to Care-Seeking for Diabetic Foot Ulceration Across Multiple Levels of the Healthcare System Tze-Woei Tan, Rebecca M. Crocker, Kelly N.B. Palmer, Chris Gomez, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-1689888/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 7 You are reading this latest preprint version Abstract Introduction The mechanisms for the observed disparities in diabetes-related amputation are poorly understood and could be related to access for diabetic foot ulceration (DFU) care. This qualitative study aimed to understand patients’ personal experiences navigating the healthcare system and the barriers they faced. Methods Fifteen semi-structured interviews were conducted over the phone between June 2020 to February 2021. Participants with DFUs were recruited from a tertiary referral center in Southern Arizona. The interviews were audio-recorded and analyzed according to the NIMHD Research Framework, focusing on the health care system domain. Results Among the 15 participants included in the study, the mean age was 52.4 years (67% male), 10 participants were from minority racial groups, and 11 were Medicaid or Indian Health Service beneficiaries. Participants frequently reported barriers at various levels of the healthcare system. On the individual level, themes that arose included health literacy and inadequate insurance coverage resulting in financial strain. On the interpersonal level, participants complained of fragmented relationships with providers and experienced challenges in making follow-up appointments. On the community level, participants reported struggles with medical equipment. On the societal level, participants also noted insufficient preventative foot care and education before DFU onset, and many respondents experienced initial misdiagnoses and delays in receiving care. Conclusions Patients with DFUs face significant barriers in accessing medical care at many levels in the healthcare system and beyond. These data highlight opportunities to address the effects of diabetic foot complications and the inequitable burden of inadequately managed diabetic foot care. Diabetic foot complications foot ulceration barriers in assessing medical care health care system barriers qualitative Figures Figure 1 Introduction Diabetic foot ulceration (DFU) is a common and often catastrophic complication for people with diabetes. In the United States, people with diabetes have an up to 34% lifetime risk of developing a foot ulcer 1 , 2 , a medical complication that increases their five-year mortality rate by 2.5 times 3 , 4 . Moreover, foot ulceration is a causal factor for up to 85% of diabetic patients who subsequently undergo lower extremity amputation 1 , 5 . As compared to the overall United States population, people with diabetes are more likely to undergo lower extremity amputation and repeat amputations 1 , 6 . The annual medical cost associated with DFU care in the United States is an additional $ 9–13 billion on top of other costs associated with diabetes 7 . Moreover, DFUs and subsequent amputations are unevenly patterned along lines of racial and ethnic minority status, low socio-economic status, low insurance coverage rates, and geographic isolation. African American, Hispanic, and Native American adults with diabetes have higher prevalence of DFUs and amputation than their White counterparts 8 – 10 . Patients in the lowest income quartiles and with suboptimal medical insurance experience higher odds of amputation and death due to DFUs and peripheral artery disease 11 , 12 . This illuminates a glaring and yet unabated public health problem 8,9,12−16 . The mechanisms of these observed disparities in DFU incidence and progression are poorly understood 9 , 11 , 17 , 18 . There is evidence, however, indicating that access to affordable and quality medical care, preventive services, and limb salvage care is an important contributing factor to disparities in amputation rates 19 – 21 . This qualitative study aimed to understand patients’ personal experiences with DFUs, including their processes of navigating the healthcare system and the barriers they faced. The themes elicited in the study concerning multiple barriers at varying levels of the healthcare system will help to improve health care delivery in a population experiencing elevated risks of diabetes-related ulceration and amputation. Methods Design This qualitative study was designed to better understand the various challenges faced by patients with a history of DFUs and lower extremity amputations as they managed their conditions and sought medical care. Semi-structured interviews were conducted between June 2020 to February 2021 and the results were analyzed according to the “Health Care System” domain of the National Institute on Minority Health and Health Disparities Research Framework 22 . The University of Arizona Institutional Review Board approved the study in July 2019 (Protocol Number 1906749805). Participants Patients were selected from the Southern Arizona Limb Salvage Alliance (SALSA), an interdisciplinary limb salvage care team located in Tucson, Arizona, to participate in semi-structured interviews. SALSA treats over 5,000 patient visits annually for diabetic foot problems, of which 40% are from racial and ethnic minority groups. It is the primary referral center for limb salvage and care for minorities and patients with low socioeconomic status in suburban and rural Arizona. Participants were identified and approached for participation during scheduled clinic appointments or by follow-up phone calls by our research team. We purposely sampled participants to reflect the diverse range of race/ethnicity, gender, history of DFU, foot infection, minor amputation (below the ankle), and major amputation (ankle or above) treated by SALSA. Interview guide and data collection The research team jointly developed a semi-structured interview guide to encourage patient perspectives regarding their living experiences with foot ulceration and how they sought care for DFUs. Interviews were conducted in the patients’ preferred language (English or Spanish). Three research team members experienced in qualitative interviews (R.M.C., K.N.B.P., and D.G.M.) completed 15 interviews over the phone, lasting 40–60 minutes each. Interviews were recorded with consent using the “Tape A Call” mobile application ( www.tapeacall.com ) or via the University of Arizona Health Sciences Zoom Platform. Analysis The research team used the Dedoose software version 9.0.17 (SocioCultural Research Consultants, LLC, Los Angeles, CA) to assist in data storage, coding, and data analysis. Audio files of the interviews were transcribed into the language spoken. After a quality assurance check, the transcriptions were uploaded into the software. The transcripts were independently reviewed and coded by three members of the research team (R.M.C., K.N.B.P., and T-W.T.). Data for this article were analyzed according to the NIMHD Research Framework (2017) that includes a multilevel approach including individual, interpersonal, community, and societal-level factors. While this model includes several domains, for the purposes of this paper we are focusing only on the Health Care System domain. This framework has been used in health disparities research to conceptualize and evaluate a wide array of determinants that promote or worsen health disparities 23 . Team members met regularly to compare coding results and resolve discrepancies by discussion and consensus. Results The study sample included 10 males and 10 racial and ethnic minority persons (5 Hispanic persons and 5 Native American persons) (Table). The mean age was 54.2 years. Eleven participants were Medicaid or Indian Health Program beneficiaries and 80% of participants were either unemployed or had retired. All participants had history of at least one DFU, 12 had a history of foot infection, eight underwent minor amputations, and one had a major amputation. Four patients underwent at least one open surgery or endovascular procedure due to peripheral artery disease. During the interviews, participants frequently reported barriers at various levels of the health care system (Figure). Individual Level Of Influence Health literacy While most participants were aware of the risks of foot infection and amputation, there were significant gaps in their health literacy that compromised their ability to make informed decisions about when and how to seek medical care. Most notably, although all participants had a history of DFUs, many were unfamiliar with the term “ulcer” and expressed confusion when interviewers asked questions using that term. This finding, which reflects poor communication by providers and medical staff, resulted in most participants using alternate terms such as “blister,” “callous,” “cut,” “infection,” and “injury” to describe their foot abnormalities. This confusion in terminology was critical, as many patients described not initially seeking medical care because they interpreted their foot abnormality to be a common, everyday problem rather than one warranting medical attention. As one participant described: “Nobody ever really said what I’m looking for just anything that is not normal, I guess. But like I said, I have never heard of a diabetic foot ulcer.” (57-year-old Hispanic male, history of DFU) In addition, participants described gaps in their health literacy related to the specifics of foot ulcer progression and the appropriate management strategies to prevent amputation. Most participants did not have a solid understanding of warning signs for when medical care should be secured for foot problems or what type of medical care should be sought. One frustrated participant stated: “If I had gotten better, like a different type of information that they could’ve given me, that might’ve helped me improve this ulcer to be going away. From what I have been given, you know, it’s just hard. I don’t know if it’s my foot itself or if it’s the medication. I don’t know. I don’t know if I am a unique case, I know there are people out there that have one foot. And they are able to get, probably, their ulcer better” (29-year-old Native female, history of DFU and recurrent foot infection) Insurance coverage While all participants had medical care coverage under Medicaid, Medicare, Indian Health Services or commercial insurance, the majority described significant medical expenses and financial strain related to their diabetes care in general, and in many cases to DFU care in particular. Most of the participants reported multiple recurring expenses such as medications (particularly insulin), co-payments for specialist visits and procedures, and the need for extensive travel, a financial strain that was frequently exacerbated by temporary or permanent loss of employment and under-employment. One participant said that following his second toe amputation: “I was in the hospital for 15 days, 13 days. They are charging me a copay, but I don’t have money to pay it. I am currently not working. I have social security and they don’t give me very much and it’s not enough to cover the copay.” (67-year-old Hispanic male, commercial insurance). In addition, many described substantial out-of-pocket payments for ancillary supplies, such as diabetic footwear and wound dressings due to inadequate insurance coverage, which often resulted in participants being unable to secure the supplies and care they needed for optimal DFU management. For example, a participant explained: “They want me to get diabetic shoes and the orthotic but at the time I didn’t have Medicaid … and with the deductible, they wanted $ 1,000 for the pair of shoes and the orthotic and I couldn’t afford it.” (45-year-old White female, Medicaid) Interpersonal Levels Of Influence Patient–Clinician Relationships Participants reported a wide array of levels of satisfaction with their medical providers, from long-standing personal and medically supportive relationships to negative experiences of not being listened to or being bounced from provider to provider. A predominant theme involved fragmented relationships with healthcare providers due to multiple factors including patients’ changes in residence, transitions in insurance status, providers leaving the area or switching practices, providers’ medical and holiday leave, and the COVID-19 pandemic. Given the complexity of managing their diabetes and related complications, these interruptions to patient-clinician relationships posed considerable barriers to effective disease management. In addition, participants mentioned challenges in making timely appointments, and in getting time with their primary care physicians after major clinical events such as hospitalizations. One patient explained: “I had a lot of problems getting in contact with that doctor (primary care doctor). And after, I think it was the first four months after the amputation, and I just kept on trying to contact her… and I would try to call her, and she never returned my calls.” (47-year-old Hispanic male, history of multiple DFUs, foot infection, and toe amputation). Similar challenges existed around establishing trusting relationships with the nurses that conducted home wound care following DFUs and amputations. This was due in large part to turnover in nursing staff or the rotation of nurses who conducted their home visits. A participant explained: “They [the companies] make a big deal about bringing the nurse in and have them trained on me and then two weeks later, I get a new nurse and redo it.” (45-year-old White female, underwent more than 20 procedures for DFUs) Lastly, participants reported that the COVID-19 pandemic further intensified this lack of provider continuity due to limited in-person visits. For example, one participant described his struggles to connect with a new endocrinologist during the pandemic, stating: “I see him once and a current situation came up, so I haven’t been able to see him since then. [Due to the pandemic] it has been phone interviews, so, I haven’t really developed any significant rapport with my current endocrinologist.” (41-year-old White male, history of recurrent DFUs and toe amputations). Community Level Of Influence Availability of Services Participants commonly reported struggles with getting the medical equipment needed to prevent and manage their DFUs in a timely fashion, including offloading braces, dressing supplies, and therapeutic shoes and insoles. A few noted that the wound supplies provided by the hospital, clinic, or home healthcare companies ran out before their wounds had healed. One participant described maintaining medical supplies as his biggest challenge, saying: “The nurses themselves have been wonderful but their companies have been mainly touch-and-go with maintaining the supplies being delivered at an appropriate time” (41-year-old White male, Medicaid). Despite having prescriptions from physicians and insurance coverage, many participants also faced long waits for securing specialized diabetic shoes from medical supply companies, resulting in delayed or interrupted care. One participant described: \"The insoles that I went in for, that they prescribed for me, it took me a long time to get them. Probably like three months after … and then when I got them, they, they were very flimsy, they didn’t last. It took me awhile to get another pair, a better design of the ones that they had” (47-year-old Hispanic male, self-employed, commercial health insurance) Participants living in rural areas outside of Tucson cited additional challenges in managing their DFUs due to the time, expense, and distance involved in securing the elaborate routines of specialist appointments, routines, medications, and wound care necessary to effectively manage their DFUs. One participant described: “It was a difficulty because I am on the reservation and sometimes the medical things that I would need, like I said, insulin, the IV antibiotics, they wouldn't be able to come out here and do it. If I had lived in a city, then the people would come and get it done.” (38-year-old Native male, Medicare, rural Arizona) Societal Level Of Influence Quality of Care Many participants noted insufficient preventative foot care and education prior to DFU onset. Some reported that they did not learn about ulcer prevention until they developed DFUs. For example, one participant stated: “I don’t really remember (doctors) saying anything on ways to prevent other ulcers.” (38-year-old Native male, Medicaid and Indian Health Services). Some participants similarly reported that they did not receive routine foot examinations prior to developing their first DFU, even though they had regularly scheduled primary care appointments. One explained: “Well, early on they didn’t look at my feet. Before I got the ulcer, they didn’t look at them. They would just instruct me to check my blood sugar. But then after the ulcer and when they cut off my toe, that’s when they started to check my feet.” (67-year-old Hispanic male, commercial insurance). Other barriers presented themselves while seeking adequate medical care for their new ulcers. Participants initially sought care from a variety of different venues— primary care doctors, podiatrists, specialists, emergency rooms, and urgent care clinics— as determined by how serious they interpreted their foot problems and insurance status and access issues. Some participants had the experience of being sent to multiple facilities in search of appropriate care, and those living in rural areas faced travel to different cities or towns. For example, a participant recalled that: “I went to the ER down here in XXX (a community hospital) and that was Friday (was discharged home) and then I saw my doctor on Monday and he sent me to XXX (a tertiary hospital) in Tucson.” (41-year-old White male, history of multiple DFUs and two toe amputations) Many respondents experienced initial misdiagnoses and delays in receiving care. This included a few participants who presented for diabetic foot complications to acute care facilities, such as urgent care clincs and emergency rooms, and were sent home without an appropriate diagnosis, treatment, and follow-up. One woman recalled her frustrating journey that led to amputation: ‘I called my doctor…. She told me I want you to see an infectious disease doctor and have them put you on an IV antibiotic …. So, I get to the infectious disease doctor, and he says, ‘I’m not going to put you on antibiotic, it isn’t infected.’ So, that’s how I ended up with an amputation because he did not put me on any antibiotic. So, I went into the hospital, and they assigned me an infectious disease doctor and she came in, I’ll never forget this, and she started talking to me like I was stupid, and she goes, ‘You know you’re diabetic, you should’ve gone to a doctor right away ...’ And I said, ‘… hold on a second here, I am a very intelligent person and yes, I did, I went to my own doctor who made an appointment for me to see an infectious disease doctor.” (71-year-old White female, history of multiple DFUs and toe amputations) Discussion Over the past two decades, substantial advances in diabetes therapy have greatly extended health and reduced morbidity. However, as evidenced in this article, significant obstacles to effective DFU treatment and management remain at multiple levels of the healthcare system. Some of these obstacles can be mitigated with more thoughtful education and alignment of access points to receive adequate health care. In this context we offer observations from our study to help address these deficits, particularly as they relate to decreasing notable health disparities. An important individual level barrier is deficits in health literacy surrounding appropriate terminology to describe diabetic foot complications and how to make informed medical decisions about when to seek medical intervention 24 . Our findings suggest that a more aggressive and tailored education approach that guides patients to act quickly in seeking medical care and for rapid wound examination is warranted. Part of this education needs to emphasize that diabetes increases the infection and amputation risks of these seemingly “minor” foot injuries. Burdensome expenses related to DFU care posed a second individual level barrier, suggesting the need for continued advocacy for full coverage of DFU care among safety net insurance providers 25 , 26 . On the interpersonal level, our data illustrate that disruptions to the patient-clinician relationship damages rapport with patients and hinders optimal DFU care. Study participants frequently reported difficulties in accessing appropriate health care providers and disruptions to the patient-physician relationship due to the turnover of providers, changes to region and insurance status, and other factors. This gap calls for developing solutions to address medical provider shortages and to “fill in” health care assessment in a timely manner. One potential approach is to expand the use of trained community health workers who can help triage persons with differing levels of foot ulcers to available health care providers who work outside of the patient’s known environment 27 , 28 . On the community level, despite having appropriate prescriptions and insurance coverage, participants described significant challenges receiving medical equipment, which was often perceived to be due to shortcomings at the medical supply companies. Since most persons with diabetes see their pharmacist more frequently than any other member of their health care team, developing collaborations between pharmacies, providers, or healthcare system in which pharmacists take on the role of providing medical equipment such as wound care supplies or diabetic shoes, may be an effective approach. Pharmacist supported diabetes care has been shown to be well received by minority patients and to result in improved diabetes outcomes 29 , 30 . Finally, on the societal level, there is a need to improve preventive care for DFUs on the primary care physician level, a crucial strategy for limb salvage. The American Diabetes Association recommends that all patients with diabetes have their feet inspected at each doctor visit and have a comprehensive foot evaluation at least annually to identify risk factors for DFUs 31 . Greater focus needs to be placed on educating medical providers and patients, and on the importance of preventive foot care including self-foot inspection, foot examination by a medical professional, and the use of appropriate footwear. In addition, given that sample participants commonly reported receiving misdiagnoses and delays after seeking medical care for DFUs, a standardized protocol and care pathway for when, where, and how patients should seek initial DFU care and how the DFUs should be treated are imperative. Because delays occur both before and after seeking care, a focus must be made to educate both patients and providers about the standard protocol 32 . There are limitations to this study which should be considered when interpreting the results. Given the relatively modest sample size, we were not able to analyze the data for gender or age effects or by duration of diabetes. Nonetheless, this hard to reach patient sample representing a diverse population did offer very similar stories about the experiences and health disparities they faced in dealing with DFUs. Conclusions Diabetic foot ulceration remains a common and life-altering disease complication and one that disproportionately burdens people of racial and ethnic minority status, low socio-economic status, low insurance coverage, and those residing in rural areas. Our study examined the lived experience of a sample of persons with diabetes that face significant barriers at all levels of the healthcare system. Their stories highlight the importance of selecting multiple points of entry to make significant improvements in peoples’ health literacy, relationships with providers, and access to quality and effective medical care, services, and medical supplies. Moreover, this approach should creatively incorporate multiple possible modes of service delivery, including the integration of community health workers and pharmacists. While there are considerable challenges to achieving this goal, concerted efforts are needed to reduce DFUs’ devastating effects on mortality and morbidity and the inequitable burden of poorly managed diabetes foot care among highly affected populations. Declarations Ethics approval and consent to participate The University of Arizona Institutional Review Board approved the study in July 2019 (Protocol Number 1906749805). All participants provided written informed consent prior to participation. Consent for publication Not applicable Availability of data The de-identified qualitative data that support the findings of this study are available from corresponding author upon reasonable request. Competing interests The authors haves no related conflicts of interest to declare. Funding The project is supported by a National Institute of Diabetes and Kidney Disease K23 Mentored Patient-Oriented Research Career Development Award (1K23DK122126) and a Society of Vascular Surgery Foundation Mentored Research Career Development Award Program (T-W.T) and a National Institute of Diabetes and Kidney Disease R01 (1R01124789) Award (D.G.A). Author Contributions Tze-Woei Tan: Conceptualization, Methology, Validation, Formal Analysis, Writing – Original Draft, Writing – Review & Editing, Supervision, Project Administration, Funding Acquisition. Rebecca M. Crocker: Conceptualization, Methology, Validation, Formal Analysis, Writing – Original Draft, Writing – Review & Editing. Kelly N.B. Palmer: Conceptualization, Methology, Validation, Formal Analysis, Writing – Review & Editing. Chris Gomez: Methology, Validation, Formal Analysis, Writing – Original Draft, Writing – Review & Editing. David G. Armstrong: Conceptualization, Methology, Writing – Review & Editing. David G. Marrero: Conceptualization, Methology, Validation, Formal Analysis, Writing – Original Draft, Writing – Review & Editing. Acknowledgements Our team acknowledge the participants of the study. References Armstrong DG, Boulton AJM, Bus SA. Diabetic Foot Ulcers and Their Recurrence. N Engl J Med. 2017;376(24):2367–75. Singh N, Armstrong DG, Lipsky BA. Preventing foot ulcers in patients with diabetes. JAMA. 2005;293(2):217–28. Hoffstad O, Mitra N, Walsh J, Margolis DJ. Diabetes, lower-extremity amputation, and death. Diabetes Care. 2015;38(10):1852–7. Walsh JW, Hoffstad OJ, Sullivan MO, Margolis DJ. Association of diabetic foot ulcer and death in a population-based cohort from the United Kingdom. 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Baseline demographics and comorbidities of the participants N=15 Age, year 54.2 Gender, n (%) Male Female 10 (66.7%) 5 (33.3% Race and ethnicity, n (%) White Native American Hispanic 5 (33.3%) 5 (33.3%) 5 (33.3%) Primary Insurance Commercial Medicare Medicaid of Indian Health 1 (6.7%) 3 (20.0%) 11 (73.3%) Employment Status Employed Unemployed Retired 3 (20.0%) 7 (46.7%) 5 (33.3%) History of Diabetic Foot Ulceration 15 (100.0%) History of Diabetic Foot Infection 12 (80.0%) History of Peripheral Artery Disease Open surgery or endovascular procedure 7 (46.7%) 4 (26.7%) History of Minor Amputation 8 (53.3%) History of Major Amputation 1 (6.7%) Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Minor revision 26 Jun, 2022 Reviewers agreed at journal 03 Jun, 2022 Reviewers invited by journal 31 May, 2022 Editor assigned by journal 25 May, 2022 Submission checks completed at journal 24 May, 2022 Editor invited by journal 24 May, 2022 First submitted to journal 24 May, 2022 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {\"props\":{\"pageProps\":{\"initialData\":{\"identity\":\"rs-1689888\",\"acceptedTermsAndConditions\":true,\"allowDirectSubmit\":false,\"archivedVersions\":[],\"articleType\":\"Research Article\",\"associatedPublications\":[],\"authors\":[{\"id\":110082523,\"identity\":\"02791b13-2ed3-412e-8670-38624b924a2b\",\"order_by\":0,\"name\":\"Tze-Woei Tan\",\"email\":\"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAuElEQVRIiWNgGAWjYPACCQZ+CIOZsFoeqBYJyQYStTBIGBwgVos9/+FjEh8qLOqMb6Q//MBQYZ3YQNiWY2mSM85ISJjdyDGWYDiTToQWxh6z27xtYC1sDIxth4nQwsz/7TbvPwkJ4xnpzxgY/xGjhY2H7TZvg4SEgUSCGQNjAzFazrCZ/5xxTALonzfGEgnH0o0JamHvP/zY4ENNHT9/OzDEPtRYyxLUggoSSFM+CkbBKBgFowAXAAC/+jbHzRKiOQAAAABJRU5ErkJggg==\",\"orcid\":\"https://orcid.org/0000-0002-6658-9482\",\"institution\":\"USC Keck School of Medicine: University of Southern California Keck School of Medicine\",\"correspondingAuthor\":true,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Tze-Woei\",\"middleName\":\"\",\"lastName\":\"Tan\",\"suffix\":\"\"},{\"id\":110082524,\"identity\":\"5386f1cc-db49-48b5-a25a-eda28727c250\",\"order_by\":1,\"name\":\"Rebecca M. Crocker\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"University of Arizona Arizona Health Sciences Center: The University of Arizona Health Sciences\",\"correspondingAuthor\":false,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Rebecca\",\"middleName\":\"M.\",\"lastName\":\"Crocker\",\"suffix\":\"\"},{\"id\":110082525,\"identity\":\"ee4f994e-2521-471a-9db8-1f19ff9e3af7\",\"order_by\":2,\"name\":\"Kelly N.B. Palmer\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"University of Arizona Arizona Health Sciences Center: The University of Arizona Health Sciences\",\"correspondingAuthor\":false,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Kelly\",\"middleName\":\"N.B.\",\"lastName\":\"Palmer\",\"suffix\":\"\"},{\"id\":110082526,\"identity\":\"33c90117-9c8d-40bb-a545-6e8c57e746f5\",\"order_by\":3,\"name\":\"Chris Gomez\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"University of Arizona Arizona Health Sciences Center: The University of Arizona Health Sciences\",\"correspondingAuthor\":false,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"Chris\",\"middleName\":\"\",\"lastName\":\"Gomez\",\"suffix\":\"\"},{\"id\":110082527,\"identity\":\"2ba8d7b0-0e6d-4a20-9a9c-116582beeb7b\",\"order_by\":4,\"name\":\"David G. Armstrong\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"USC Keck School of Medicine: University of Southern California Keck School of Medicine\",\"correspondingAuthor\":false,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"David\",\"middleName\":\"G.\",\"lastName\":\"Armstrong\",\"suffix\":\"\"},{\"id\":110082528,\"identity\":\"cf54ec3a-c772-413e-8d25-356198aead30\",\"order_by\":5,\"name\":\"David G. Marrero\",\"email\":\"\",\"orcid\":\"\",\"institution\":\"University of Arizona Health Sciences Center: The University of Arizona Health Sciences\",\"correspondingAuthor\":false,\"submittingAuthor\":false,\"prefix\":\"\",\"firstName\":\"David\",\"middleName\":\"G.\",\"lastName\":\"Marrero\",\"suffix\":\"\"}],\"badges\":[],\"createdAt\":\"2022-05-24 18:10:10\",\"currentVersionCode\":1,\"declarations\":\"\",\"doi\":\"10.21203/rs.3.rs-1689888/v1\",\"doiUrl\":\"https://doi.org/10.21203/rs.3.rs-1689888/v1\",\"draftVersion\":[],\"editorialEvents\":[],\"editorialNote\":\"\",\"failedWorkflow\":false,\"files\":[{\"id\":22185969,\"identity\":\"a2c3ad14-5d28-4194-ba22-d49dc391ec21\",\"added_by\":\"auto\",\"created_at\":\"2022-06-02 14:56:00\",\"extension\":\"png\",\"order_by\":1,\"title\":\"Figure 1\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":143792,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003ePatient reported barriers at all levels influence of the health care system domain\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"Figure.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-1689888/v1/c1b3ca0702e36b174e2fe085.png\"},{\"id\":22185971,\"identity\":\"36abceab-eed1-4f3b-a35f-5071f63bad43\",\"added_by\":\"auto\",\"created_at\":\"2022-06-02 14:56:03\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":320519,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-1689888/v1/f069c444-b162-48a8-a1f9-8af2207a0633.pdf\"}],\"financialInterests\":\"\",\"formattedTitle\":\"A Qualitative Study of Barriers to Care-Seeking for Diabetic Foot Ulceration Across Multiple Levels of the Healthcare System\",\"fulltext\":[{\"header\":\"Introduction\",\"content\":\"\\u003cp\\u003eDiabetic foot ulceration (DFU) is a common and often catastrophic complication for people with diabetes. In the United States, people with diabetes have an up to 34% lifetime risk of developing a foot ulcer \\u003csup\\u003e \\u003cspan citationid=\\\"CR1\\\" class=\\\"CitationRef\\\"\\u003e1\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR2\\\" class=\\\"CitationRef\\\"\\u003e2\\u003c/span\\u003e \\u003c/sup\\u003e, a medical complication that increases their five-year mortality rate by 2.5 times \\u003csup\\u003e \\u003cspan citationid=\\\"CR3\\\" class=\\\"CitationRef\\\"\\u003e3\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR4\\\" class=\\\"CitationRef\\\"\\u003e4\\u003c/span\\u003e \\u003c/sup\\u003e. Moreover, foot ulceration is a causal factor for up to 85% of diabetic patients who subsequently undergo lower extremity amputation \\u003csup\\u003e \\u003cspan citationid=\\\"CR1\\\" class=\\\"CitationRef\\\"\\u003e1\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR5\\\" class=\\\"CitationRef\\\"\\u003e5\\u003c/span\\u003e \\u003c/sup\\u003e. As compared to the overall United States population, people with diabetes are more likely to undergo lower extremity amputation and repeat amputations \\u003csup\\u003e \\u003cspan citationid=\\\"CR1\\\" class=\\\"CitationRef\\\"\\u003e1\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR6\\\" class=\\\"CitationRef\\\"\\u003e6\\u003c/span\\u003e \\u003c/sup\\u003e. The annual medical cost associated with DFU care in the United States is an additional \\u003cspan\\u003e$\\u003c/span\\u003e9\\u0026ndash;13\\u0026nbsp;billion on top of other costs associated with diabetes \\u003csup\\u003e \\u003cspan citationid=\\\"CR7\\\" class=\\\"CitationRef\\\"\\u003e7\\u003c/span\\u003e \\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eMoreover, DFUs and subsequent amputations are unevenly patterned along lines of racial and ethnic minority status, low socio-economic status, low insurance coverage rates, and geographic isolation. African American, Hispanic, and Native American adults with diabetes have higher prevalence of DFUs and amputation than their White counterparts\\u003csup\\u003e\\u003cspan additionalcitationids=\\\"CR9\\\" citationid=\\\"CR8\\\" class=\\\"CitationRef\\\"\\u003e8\\u003c/span\\u003e\\u0026ndash;\\u003cspan citationid=\\\"CR10\\\" class=\\\"CitationRef\\\"\\u003e10\\u003c/span\\u003e\\u003c/sup\\u003e. Patients in the lowest income quartiles and with suboptimal medical insurance experience higher odds of amputation and death due to DFUs and peripheral artery disease \\u003csup\\u003e\\u003cspan citationid=\\\"CR11\\\" class=\\\"CitationRef\\\"\\u003e11\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR12\\\" class=\\\"CitationRef\\\"\\u003e12\\u003c/span\\u003e\\u003c/sup\\u003e. This illuminates a glaring and yet unabated public health problem \\u003csup\\u003e8,9,12\\u0026minus;16\\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eThe mechanisms of these observed disparities in DFU incidence and progression are poorly understood \\u003csup\\u003e\\u003cspan citationid=\\\"CR9\\\" class=\\\"CitationRef\\\"\\u003e9\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR11\\\" class=\\\"CitationRef\\\"\\u003e11\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR17\\\" class=\\\"CitationRef\\\"\\u003e17\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR18\\\" class=\\\"CitationRef\\\"\\u003e18\\u003c/span\\u003e\\u003c/sup\\u003e. There is evidence, however, indicating that access to affordable and quality medical care, preventive services, and limb salvage care is an important contributing factor to disparities in amputation rates \\u003csup\\u003e\\u003cspan additionalcitationids=\\\"CR20\\\" citationid=\\\"CR19\\\" class=\\\"CitationRef\\\"\\u003e19\\u003c/span\\u003e\\u0026ndash;\\u003cspan citationid=\\\"CR21\\\" class=\\\"CitationRef\\\"\\u003e21\\u003c/span\\u003e\\u003c/sup\\u003e. This qualitative study aimed to understand patients\\u0026rsquo; personal experiences with DFUs, including their processes of navigating the healthcare system and the barriers they faced. The themes elicited in the study concerning multiple barriers at varying levels of the healthcare system will help to improve health care delivery in a population experiencing elevated risks of diabetes-related ulceration and amputation.\\u003c/p\\u003e\"},{\"header\":\"Methods\",\"content\":\"\\u003cdiv id=\\\"Sec3\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eDesign\\u003c/h2\\u003e \\u003cp\\u003eThis qualitative study was designed to better understand the various challenges faced by patients with a history of DFUs and lower extremity amputations as they managed their conditions and sought medical care. Semi-structured interviews were conducted between June 2020 to February 2021 and the results were analyzed according to the \\u0026ldquo;Health Care System\\u0026rdquo; domain of the National Institute on Minority Health and Health Disparities Research Framework \\u003csup\\u003e\\u003cspan citationid=\\\"CR22\\\" class=\\\"CitationRef\\\"\\u003e22\\u003c/span\\u003e\\u003c/sup\\u003e. The University of Arizona Institutional Review Board approved the study in July 2019 (Protocol Number 1906749805).\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec4\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eParticipants\\u003c/h2\\u003e \\u003cp\\u003ePatients were selected from the Southern Arizona Limb Salvage Alliance (SALSA), an interdisciplinary limb salvage care team located in Tucson, Arizona, to participate in semi-structured interviews. SALSA treats over 5,000 patient visits annually for diabetic foot problems, of which 40% are from racial and ethnic minority groups. It is the primary referral center for limb salvage and care for minorities and patients with low socioeconomic status in suburban and rural Arizona. Participants were identified and approached for participation during scheduled clinic appointments or by follow-up phone calls by our research team. We purposely sampled participants to reflect the diverse range of race/ethnicity, gender, history of DFU, foot infection, minor amputation (below the ankle), and major amputation (ankle or above) treated by SALSA.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec5\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eInterview guide and data collection\\u003c/h2\\u003e \\u003cp\\u003eThe research team jointly developed a semi-structured interview guide to encourage patient perspectives regarding their living experiences with foot ulceration and how they sought care for DFUs. Interviews were conducted in the patients\\u0026rsquo; preferred language (English or Spanish). Three research team members experienced in qualitative interviews (R.M.C., K.N.B.P., and D.G.M.) completed 15 interviews over the phone, lasting 40\\u0026ndash;60 minutes each. Interviews were recorded with consent using the \\u0026ldquo;Tape A Call\\u0026rdquo; mobile application (\\u003cspan class=\\\"ExternalRef\\\"\\u003e\\u003cspan class=\\\"RefSource\\\"\\u003e\\u003ca href=\\\"http://www.tapeacall.com\\\" target=\\\"_blank\\\"\\u003ewww.tapeacall.com\\u003c/a\\u003e\\u003c/span\\u003e\\u003cspan address=\\\"http://www.tapeacall.com\\\" targettype=\\\"URL\\\" class=\\\"RefTarget\\\"\\u003e\\u003c/span\\u003e\\u003c/span\\u003e) or via the University of Arizona Health Sciences Zoom Platform.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec6\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eAnalysis\\u003c/h2\\u003e \\u003cp\\u003eThe research team used the Dedoose software version 9.0.17 (SocioCultural Research Consultants, LLC, Los Angeles, CA) to assist in data storage, coding, and data analysis. Audio files of the interviews were transcribed into the language spoken. After a quality assurance check, the transcriptions were uploaded into the software. The transcripts were independently reviewed and coded by three members of the research team (R.M.C., K.N.B.P., and T-W.T.). Data for this article were analyzed according to the NIMHD Research Framework (2017) that includes a multilevel approach including individual, interpersonal, community, and societal-level factors. While this model includes several domains, for the purposes of this paper we are focusing only on the Health Care System domain. This framework has been used in health disparities research to conceptualize and evaluate a wide array of determinants that promote or worsen health disparities \\u003csup\\u003e\\u003cspan citationid=\\\"CR23\\\" class=\\\"CitationRef\\\"\\u003e23\\u003c/span\\u003e\\u003c/sup\\u003e. Team members met regularly to compare coding results and resolve discrepancies by discussion and consensus.\\u003c/p\\u003e \\u003c/div\\u003e\"},{\"header\":\"Results\",\"content\":\"\\u003cp\\u003eThe study sample included 10 males and 10 racial and ethnic minority persons (5 Hispanic persons and 5 Native American persons) (Table). The mean age was 54.2 years. Eleven participants were Medicaid or Indian Health Program beneficiaries and 80% of participants were either unemployed or had retired. All participants had history of at least one DFU, 12 had a history of foot infection, eight underwent minor amputations, and one had a major amputation. Four patients underwent at least one open surgery or endovascular procedure due to peripheral artery disease. During the interviews, participants frequently reported barriers at various levels of the health care system (Figure).\\u003c/p\\u003e\\n\\u003ch2\\u003eIndividual Level Of Influence\\u003c/h2\\u003e\\n\\u003cdiv id=\\\"Sec9\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eHealth literacy\\u003c/h2\\u003e \\u003cp\\u003eWhile most participants were aware of the risks of foot infection and amputation, there were significant gaps in their health literacy that compromised their ability to make informed decisions about when and how to seek medical care. Most notably, although all participants had a history of DFUs, many were unfamiliar with the term \\u0026ldquo;ulcer\\u0026rdquo; and expressed confusion when interviewers asked questions using that term. This finding, which reflects poor communication by providers and medical staff, resulted in most participants using alternate terms such as \\u0026ldquo;blister,\\u0026rdquo; \\u0026ldquo;callous,\\u0026rdquo; \\u0026ldquo;cut,\\u0026rdquo; \\u0026ldquo;infection,\\u0026rdquo; and \\u0026ldquo;injury\\u0026rdquo; to describe their foot abnormalities. This confusion in terminology was critical, as many patients described not initially seeking medical care because they interpreted their foot abnormality to be a common, everyday problem rather than one warranting medical attention. As one participant described: \\u0026ldquo;Nobody ever really said what I\\u0026rsquo;m looking for just anything that is not normal, I guess. But like I said, I have never heard of a diabetic foot ulcer.\\u0026rdquo; (57-year-old Hispanic male, history of DFU)\\u003c/p\\u003e \\u003cp\\u003eIn addition, participants described gaps in their health literacy related to the specifics of foot ulcer progression and the appropriate management strategies to prevent amputation. Most participants did not have a solid understanding of warning signs for when medical care should be secured for foot problems or what type of medical care should be sought. One frustrated participant stated: \\u0026ldquo;If I had gotten better, like a different type of information that they could\\u0026rsquo;ve given me, that might\\u0026rsquo;ve helped me improve this ulcer to be going away. From what I have been given, you know, it\\u0026rsquo;s just hard. I don\\u0026rsquo;t know if it\\u0026rsquo;s my foot itself or if it\\u0026rsquo;s the medication. I don\\u0026rsquo;t know. I don\\u0026rsquo;t know if I am a unique case, I know there are people out there that have one foot. And they are able to get, probably, their ulcer better\\u0026rdquo; (29-year-old Native female, history of DFU and recurrent foot infection)\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec10\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eInsurance coverage\\u003c/h2\\u003e \\u003cp\\u003eWhile all participants had medical care coverage under Medicaid, Medicare, Indian Health Services or commercial insurance, the majority described significant medical expenses and financial strain related to their diabetes care in general, and in many cases to DFU care in particular. Most of the participants reported multiple recurring expenses such as medications (particularly insulin), co-payments for specialist visits and procedures, and the need for extensive travel, a financial strain that was frequently exacerbated by temporary or permanent loss of employment and under-employment. One participant said that following his second toe amputation: \\u0026ldquo;I was in the hospital for 15 days, 13 days. They are charging me a copay, but I don\\u0026rsquo;t have money to pay it. I am currently not working. I have social security and they don\\u0026rsquo;t give me very much and it\\u0026rsquo;s not enough to cover the copay.\\u0026rdquo; (67-year-old Hispanic male, commercial insurance). In addition, many described substantial out-of-pocket payments for ancillary supplies, such as diabetic footwear and wound dressings due to inadequate insurance coverage, which often resulted in participants being unable to secure the supplies and care they needed for optimal DFU management. For example, a participant explained: \\u0026ldquo;They want me to get diabetic shoes and the orthotic but at the time I didn\\u0026rsquo;t have Medicaid \\u0026hellip; and with the deductible, they wanted \\u003cspan\\u003e$\\u003c/span\\u003e1,000 for the pair of shoes and the orthotic and I couldn\\u0026rsquo;t afford it.\\u0026rdquo; (45-year-old White female, Medicaid)\\u003c/p\\u003e \\u003c/div\\u003e\\n\\u003ch2\\u003eInterpersonal Levels Of Influence\\u003c/h2\\u003e\\n\\u003cdiv id=\\\"Sec12\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003ePatient\\u0026ndash;Clinician Relationships\\u003c/h2\\u003e \\u003cp\\u003e Participants reported a wide array of levels of satisfaction with their medical providers, from long-standing personal and medically supportive relationships to negative experiences of not being listened to or being bounced from provider to provider. A predominant theme involved fragmented relationships with healthcare providers due to multiple factors including patients\\u0026rsquo; changes in residence, transitions in insurance status, providers leaving the area or switching practices, providers\\u0026rsquo; medical and holiday leave, and the COVID-19 pandemic. Given the complexity of managing their diabetes and related complications, these interruptions to patient-clinician relationships posed considerable barriers to effective disease management.\\u003c/p\\u003e \\u003cp\\u003e In addition, participants mentioned challenges in making timely appointments, and in getting time with their primary care physicians after major clinical events such as hospitalizations. One patient explained: \\u0026ldquo;I had a lot of problems getting in contact with that doctor (primary care doctor). And after, I think it was the first four months after the amputation, and I just kept on trying to contact her\\u0026hellip; and I would try to call her, and she never returned my calls.\\u0026rdquo; (47-year-old Hispanic male, history of multiple DFUs, foot infection, and toe amputation).\\u003c/p\\u003e \\u003cp\\u003eSimilar challenges existed around establishing trusting relationships with the nurses that conducted home wound care following DFUs and amputations. This was due in large part to turnover in nursing staff or the rotation of nurses who conducted their home visits. A participant explained: \\u0026ldquo;They [the companies] make a big deal about bringing the nurse in and have them trained on me and then two weeks later, I get a new nurse and redo it.\\u0026rdquo; (45-year-old White female, underwent more than 20 procedures for DFUs)\\u003c/p\\u003e \\u003cp\\u003eLastly, participants reported that the COVID-19 pandemic further intensified this lack of provider continuity due to limited in-person visits. For example, one participant described his struggles to connect with a new endocrinologist during the pandemic, stating: \\u0026ldquo;I see him once and a current situation came up, so I haven\\u0026rsquo;t been able to see him since then. [Due to the pandemic] it has been phone interviews, so, I haven\\u0026rsquo;t really developed any significant rapport with my current endocrinologist.\\u0026rdquo; (41-year-old White male, history of recurrent DFUs and toe amputations).\\u003c/p\\u003e \\u003c/div\\u003e\\n\\u003ch2\\u003eCommunity Level Of Influence\\u003c/h2\\u003e\\n\\u003cdiv id=\\\"Sec14\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eAvailability of Services\\u003c/h2\\u003e \\u003cp\\u003eParticipants commonly reported struggles with getting the medical equipment needed to prevent and manage their DFUs in a timely fashion, including offloading braces, dressing supplies, and therapeutic shoes and insoles. A few noted that the wound supplies provided by the hospital, clinic, or home healthcare companies ran out before their wounds had healed. One participant described maintaining medical supplies as his biggest challenge, saying: \\u0026ldquo;The nurses themselves have been wonderful but their companies have been mainly touch-and-go with maintaining the supplies being delivered at an appropriate time\\u0026rdquo; (41-year-old White male, Medicaid). Despite having prescriptions from physicians and insurance coverage, many participants also faced long waits for securing specialized diabetic shoes from medical supply companies, resulting in delayed or interrupted care. One participant described: \\\"The insoles that I went in for, that they prescribed for me, it took me a long time to get them. Probably like three months after \\u0026hellip; and then when I got them, they, they were very flimsy, they didn\\u0026rsquo;t last. It took me awhile to get another pair, a better design of the ones that they had\\u0026rdquo; (47-year-old Hispanic male, self-employed, commercial health insurance)\\u003c/p\\u003e \\u003cp\\u003e Participants living in rural areas outside of Tucson cited additional challenges in managing their DFUs due to the time, expense, and distance involved in securing the elaborate routines of specialist appointments, routines, medications, and wound care necessary to effectively manage their DFUs. One participant described: \\u0026ldquo;It was a difficulty because I am on the reservation and sometimes the medical things that I would need, like I said, insulin, the IV antibiotics, they wouldn't be able to come out here and do it. If I had lived in a city, then the people would come and get it done.\\u0026rdquo; (38-year-old Native male, Medicare, rural Arizona)\\u003c/p\\u003e \\u003c/div\\u003e\\n\\u003ch2\\u003eSocietal Level Of Influence\\u003c/h2\\u003e\\n\\u003cdiv id=\\\"Sec16\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003eQuality of Care\\u003c/h2\\u003e \\u003cp\\u003eMany participants noted insufficient preventative foot care and education prior to DFU onset. Some reported that they did not learn about ulcer prevention until they developed DFUs. For example, one participant stated: \\u0026ldquo;I don\\u0026rsquo;t really remember (doctors) saying anything on ways to prevent other ulcers.\\u0026rdquo; (38-year-old Native male, Medicaid and Indian Health Services). Some participants similarly reported that they did not receive routine foot examinations prior to developing their first DFU, even though they had regularly scheduled primary care appointments. One explained: \\u0026ldquo;Well, early on they didn\\u0026rsquo;t look at my feet. Before I got the ulcer, they didn\\u0026rsquo;t look at them. They would just instruct me to check my blood sugar. But then after the ulcer and when they cut off my toe, that\\u0026rsquo;s when they started to check my feet.\\u0026rdquo; (67-year-old Hispanic male, commercial insurance).\\u003c/p\\u003e \\u003cp\\u003eOther barriers presented themselves while seeking adequate medical care for their new ulcers. Participants initially sought care from a variety of different venues\\u0026mdash; primary care doctors, podiatrists, specialists, emergency rooms, and urgent care clinics\\u0026mdash; as determined by how serious they interpreted their foot problems and insurance status and access issues. Some participants had the experience of being sent to multiple facilities in search of appropriate care, and those living in rural areas faced travel to different cities or towns. For example, a participant recalled that: \\u0026ldquo;I went to the ER down here in XXX (a community hospital) and that was Friday (was discharged home) and then I saw my doctor on Monday and he sent me to XXX (a tertiary hospital) in Tucson.\\u0026rdquo; (41-year-old White male, history of multiple DFUs and two toe amputations)\\u003c/p\\u003e \\u003cp\\u003eMany respondents experienced initial misdiagnoses and delays in receiving care. This included a few participants who presented for diabetic foot complications to acute care facilities, such as urgent care clincs and emergency rooms, and were sent home without an appropriate diagnosis, treatment, and follow-up. One woman recalled her frustrating journey that led to amputation:\\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\u003cp\\u003e\\u0026lsquo;I called my doctor\\u0026hellip;. She told me I want you to see an infectious disease doctor and have them put you on an IV antibiotic \\u0026hellip;. So, I get to the infectious disease doctor, and he says, \\u0026lsquo;I\\u0026rsquo;m not going to put you on antibiotic, it isn\\u0026rsquo;t infected.\\u0026rsquo; So, that\\u0026rsquo;s how I ended up with an amputation because he did not put me on any antibiotic. So, I went into the hospital, and they assigned me an infectious disease doctor and she came in, I\\u0026rsquo;ll never forget this, and she started talking to me like I was stupid, and she goes, \\u0026lsquo;You know you\\u0026rsquo;re diabetic, you should\\u0026rsquo;ve gone to a doctor right away ...\\u0026rsquo; And I said, \\u0026lsquo;\\u0026hellip; hold on a second here, I am a very intelligent person and yes, I did, I went to my own doctor who made an appointment for me to see an infectious disease doctor.\\u0026rdquo; (71-year-old White female, history of multiple DFUs and toe amputations)\\u003c/p\\u003e\\u003c/div\\u003e\\u003c/p\\u003e \\u003c/div\\u003e\"},{\"header\":\"Discussion\",\"content\":\"\\u003cp\\u003eOver the past two decades, substantial advances in diabetes therapy have greatly extended health and reduced morbidity. However, as evidenced in this article, significant obstacles to effective DFU treatment and management remain at multiple levels of the healthcare system. Some of these obstacles can be mitigated with more thoughtful education and alignment of access points to receive adequate health care. In this context we offer observations from our study to help address these deficits, particularly as they relate to decreasing notable health disparities.\\u003c/p\\u003e \\u003cp\\u003eAn important individual level barrier is deficits in health literacy surrounding appropriate terminology to describe diabetic foot complications and how to make informed medical decisions about when to seek medical intervention \\u003csup\\u003e\\u003cspan citationid=\\\"CR24\\\" class=\\\"CitationRef\\\"\\u003e24\\u003c/span\\u003e\\u003c/sup\\u003e. Our findings suggest that a more aggressive and tailored education approach that guides patients to act quickly in seeking medical care and for rapid wound examination is warranted. Part of this education needs to emphasize that diabetes increases the infection and amputation risks of these seemingly \\u0026ldquo;minor\\u0026rdquo; foot injuries. Burdensome expenses related to DFU care posed a second individual level barrier, suggesting the need for continued advocacy for full coverage of DFU care among safety net insurance providers \\u003csup\\u003e\\u003cspan citationid=\\\"CR25\\\" class=\\\"CitationRef\\\"\\u003e25\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR26\\\" class=\\\"CitationRef\\\"\\u003e26\\u003c/span\\u003e\\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eOn the interpersonal level, our data illustrate that disruptions to the patient-clinician relationship damages rapport with patients and hinders optimal DFU care. Study participants frequently reported difficulties in accessing appropriate health care providers and disruptions to the patient-physician relationship due to the turnover of providers, changes to region and insurance status, and other factors. This gap calls for developing solutions to address medical provider shortages and to \\u0026ldquo;fill in\\u0026rdquo; health care assessment in a timely manner. One potential approach is to expand the use of trained community health workers who can help triage persons with differing levels of foot ulcers to available health care providers who work outside of the patient\\u0026rsquo;s known environment \\u003csup\\u003e\\u003cspan citationid=\\\"CR27\\\" class=\\\"CitationRef\\\"\\u003e27\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR28\\\" class=\\\"CitationRef\\\"\\u003e28\\u003c/span\\u003e\\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eOn the community level, despite having appropriate prescriptions and insurance coverage, participants described significant challenges receiving medical equipment, which was often perceived to be due to shortcomings at the medical supply companies. Since most persons with diabetes see their pharmacist more frequently than any other member of their health care team, developing collaborations between pharmacies, providers, or healthcare system in which pharmacists take on the role of providing medical equipment such as wound care supplies or diabetic shoes, may be an effective approach. Pharmacist supported diabetes care has been shown to be well received by minority patients and to result in improved diabetes outcomes \\u003csup\\u003e\\u003cspan citationid=\\\"CR29\\\" class=\\\"CitationRef\\\"\\u003e29\\u003c/span\\u003e,\\u003cspan citationid=\\\"CR30\\\" class=\\\"CitationRef\\\"\\u003e30\\u003c/span\\u003e\\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eFinally, on the societal level, there is a need to improve preventive care for DFUs on the primary care physician level, a crucial strategy for limb salvage. The American Diabetes Association recommends that all patients with diabetes have their feet inspected at each doctor visit and have a comprehensive foot evaluation at least annually to identify risk factors for DFUs \\u003csup\\u003e\\u003cspan citationid=\\\"CR31\\\" class=\\\"CitationRef\\\"\\u003e31\\u003c/span\\u003e\\u003c/sup\\u003e. Greater focus needs to be placed on educating medical providers and patients, and on the importance of preventive foot care including self-foot inspection, foot examination by a medical professional, and the use of appropriate footwear. In addition, given that sample participants commonly reported receiving misdiagnoses and delays after seeking medical care for DFUs, a standardized protocol and care pathway for when, where, and how patients should seek initial DFU care and how the DFUs should be treated are imperative. Because delays occur both before and after seeking care, a focus must be made to educate both patients and providers about the standard protocol \\u003csup\\u003e\\u003cspan citationid=\\\"CR32\\\" class=\\\"CitationRef\\\"\\u003e32\\u003c/span\\u003e\\u003c/sup\\u003e.\\u003c/p\\u003e \\u003cp\\u003eThere are limitations to this study which should be considered when interpreting the results. Given the relatively modest sample size, we were not able to analyze the data for gender or age effects or by duration of diabetes. Nonetheless, this hard to reach patient sample representing a diverse population did offer very similar stories about the experiences and health disparities they faced in dealing with DFUs.\\u003c/p\\u003e\"},{\"header\":\"Conclusions\",\"content\":\"\\u003cp\\u003eDiabetic foot ulceration remains a common and life-altering disease complication and one that disproportionately burdens people of racial and ethnic minority status, low socio-economic status, low insurance coverage, and those residing in rural areas. Our study examined the lived experience of a sample of persons with diabetes that face significant barriers at all levels of the healthcare system. Their stories highlight the importance of selecting multiple points of entry to make significant improvements in peoples\\u0026rsquo; health literacy, relationships with providers, and access to quality and effective medical care, services, and medical supplies. Moreover, this approach should creatively incorporate multiple possible modes of service delivery, including the integration of community health workers and pharmacists. While there are considerable challenges to achieving this goal, concerted efforts are needed to reduce DFUs\\u0026rsquo; devastating effects on mortality and morbidity and the inequitable burden of poorly managed diabetes foot care among highly affected populations.\\u003c/p\\u003e\"},{\"header\":\"Declarations\",\"content\":\"\\u003cp\\u003e\\u003cstrong\\u003eEthics approval and consent to participate\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe University of Arizona Institutional Review Board approved the study in July 2019 (Protocol Number 1906749805). All participants provided written informed consent prior to participation.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eConsent for publication\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eNot applicable\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eAvailability of data\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe de-identified qualitative data that support the findings of this study are available from corresponding author upon reasonable request.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eCompeting interests\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe authors haves no related conflicts of interest to declare.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eFunding\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe project is supported by a National Institute of Diabetes and Kidney Disease K23 Mentored Patient-Oriented Research Career Development Award (1K23DK122126) and a Society of Vascular Surgery Foundation Mentored Research Career Development Award Program (T-W.T) and a National Institute of Diabetes and Kidney Disease R01 (1R01124789) Award (D.G.A).\\u0026nbsp;\\u003c/p\\u003e\\n\\u003cp\\u003e\\u0026nbsp;\\u003cstrong\\u003eAuthor Contributions\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eTze-Woei Tan: Conceptualization, Methology, Validation, Formal Analysis, Writing \\u0026ndash; Original Draft, Writing \\u0026ndash; Review \\u0026amp; Editing, Supervision, Project Administration, Funding Acquisition.\\u0026nbsp;\\u003cbr\\u003e\\u0026nbsp;Rebecca M. Crocker: Conceptualization, Methology, Validation, Formal Analysis, Writing \\u0026ndash; Original Draft, Writing \\u0026ndash; Review \\u0026amp; Editing.\\u003c/p\\u003e\\n\\u003cp\\u003eKelly N.B. Palmer: Conceptualization, Methology, Validation, Formal Analysis, Writing \\u0026ndash; Review \\u0026amp; Editing.\\u003c/p\\u003e\\n\\u003cp\\u003eChris Gomez: Methology, Validation, Formal Analysis, Writing \\u0026ndash; Original Draft, Writing \\u0026ndash; Review \\u0026amp; Editing.\\u003c/p\\u003e\\n\\u003cp\\u003eDavid G. Armstrong: Conceptualization, Methology, Writing \\u0026ndash; Review \\u0026amp; Editing.\\u003c/p\\u003e\\n\\u003cp\\u003eDavid G. Marrero: Conceptualization, Methology, Validation, Formal Analysis, Writing \\u0026ndash; Original Draft, Writing \\u0026ndash; Review \\u0026amp; Editing.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eAcknowledgements\\u0026nbsp;\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eOur team acknowledge the participants of the study.\\u0026nbsp;\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eArmstrong DG, Boulton AJM, Bus SA. Diabetic Foot Ulcers and Their Recurrence. N Engl J Med. 2017;376(24):2367\\u0026ndash;75.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSingh N, Armstrong DG, Lipsky BA. Preventing foot ulcers in patients with diabetes. JAMA. 2005;293(2):217\\u0026ndash;28.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eHoffstad O, Mitra N, Walsh J, Margolis DJ. Diabetes, lower-extremity amputation, and death. Diabetes Care. 2015;38(10):1852\\u0026ndash;7.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eWalsh JW, Hoffstad OJ, Sullivan MO, Margolis DJ. Association of diabetic foot ulcer and death in a population-based cohort from the United Kingdom. Diabet Med. 2016;33(11):1493\\u0026ndash;8.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eMayfield JA, Reiber GE, Sanders LJ, Janisse D, Pogach LM. Preventive foot care in people with diabetes. Diabetes Care. 1998;21(12):2161\\u0026ndash;77.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eRatliff HT, Shibuya N, Jupiter DC. Minor vs. major leg amputation in adults with diabetes: Six-month readmissions, reamputations, and complications. J Diabetes Complications. 2021;35(5):107886.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eRice JB, Desai U, Cummings AK, Birnbaum HG, Skornicki M, Parsons NB. Burden of diabetic foot ulcers for medicare and private insurers. Diabetes Care. 2014;37(3):651\\u0026ndash;8.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eTan TW, Armstrong DG, Concha-Moore KC, et al. Association between race/ethnicity and the risk of amputation of lower extremities among medicare beneficiaries with diabetic foot ulcers and diabetic foot infections. BMJ Open Diabetes Res Care. 2020;8(1).\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eTan TW, Shih CD, Concha-Moore KC, et al. Disparities in outcomes of patients admitted with diabetic foot infections. PLoS One. 2019;14(2):e0211481.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eMargolis DJ, Malay DS, Hoffstad OJ, et al. Incidence of diabetic foot ulcer and lower extremity amputation among Medicare beneficiaries, 2006 to 2008: Data Points #2. In: \\u003cem\\u003eData Points Publication Series.\\u003c/em\\u003e Rockville (MD)2011.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSkrepnek GH, Mills JL, Armstrong DG. A Diabetic Emergency One Million Feet Long: Disparities and Burdens of Illness among Diabetic Foot Ulcer Cases within Emergency Departments in the United States, 2006\\u0026ndash;2010. PLoS One. 2015;10(8):e0134914.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eArya S, Binney Z, Khakharia A, et al. Race and Socioeconomic Status Independently Affect Risk of Major Amputation in Peripheral Artery Disease. J Am Heart Assoc. 2018;7(2).\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eLefebvre KM, Chevan J. The persistence of gender and racial disparities in vascular lower extremity amputation: an examination of HCUP-NIS data (2002\\u0026ndash;2011). Vasc Med. 2015;20(1):51\\u0026ndash;9.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eLefebvre KM, Lavery LA. Disparities in amputations in minorities. Clin Orthop Relat Res. 2011;469(7):1941\\u0026ndash;50.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eLefebvre KM, Metraux S. Disparities in level of amputation among minorities: implications for improved preventative care. J Natl Med Assoc. 2009;101(7):649\\u0026ndash;55.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eEslami MH, Zayaruzny M, Fitzgerald GA. The adverse effects of race, insurance status, and low income on the rate of amputation in patients presenting with lower extremity ischemia. J Vasc Surg. 2007;45(1):55\\u0026ndash;9.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSkrepnek GH, Mills JL, Lavery LA, Armstrong DG. Health Care Service and Outcomes Among an Estimated 6.7 Million Ambulatory Care Diabetic Foot Cases in the U.S. Diabetes Care. 2017;40(7):936\\u0026ndash;42.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eIsa D, Pace D. Is ethnicity an appropriate measure of health care marginalization? A systematic review and meta-analysis of the outcomes of diabetic foot ulceration in Aboriginal populations. Can J Surg. 2021;64(5):E476\\u0026ndash;83.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eCarr D, Kappagoda M, Boseman L, Cloud LK, Croom B. Advancing Diabetes-Related Equity Through Diabetes Self-Management Education and Training: Existing Coverage Requirements and Considerations for Increased Participation. J Public Health Manag Pract. 2020;26:37\\u0026ndash;44. Suppl 2, Advancing Legal Epidemiology:S.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSutherland BL, Pecanac K, Bartels CM, Brennan MB. Expect delays: poor connections between rural and urban health systems challenge multidisciplinary care for rural Americans with diabetic foot ulcers. J Foot Ankle Res. 2020;13(1):32.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eStevens CD, Schriger DL, Raffetto B, Davis AC, Zingmond D, Roby DH. Geographic clustering of diabetic lower-extremity amputations in low-income regions of California. Health Aff (Millwood). 2014;33(8):1383\\u0026ndash;90.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eNIMHD Research Framework. National Institute on Minority Helath and Health Disparities Web site. \\u003cspan class=\\\"ExternalRef\\\"\\u003e\\u003cspan class=\\\"RefSource\\\"\\u003ehttps://www.nimhd.nih.gov/about/overview/research-framework/\\u003c/span\\u003e\\u003c/span\\u003e. Published 2017. Accessed January 22, 2022.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eAlvidrez J, Castille D, Laude-Sharp M, Rosario A, Tabor D. The National Institute on Minority Health and Health Disparities Research Framework. Am J Public Health. 2019;109(S1):16\\u0026ndash;20.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eCrocker RT, Palmer T-W, Marrero KNB. DG.. The Patient\\u0026rsquo;s Perspective of Diabetic Foot Ulceration: A Phenomenological Exploration of Causes, Detection, and Care-Seeking. Journal of Advanced Nursing. 2022.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eFayfman M, Schechter MC, Amobi CN, et al. Barriers to diabetic foot care in a disadvantaged population: A qualitative assessment. J Diabetes Complications. 2020;34(12):107688.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSchaper NC, Apelqvist J, Bakker K. Reducing lower leg amputations in diabetes: a challenge for patients, healthcare providers and the healthcare system. Diabetologia. 2012;55(7):1869\\u0026ndash;72.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eCollinsworth AW, Vulimiri M, Schmidt KL, Snead CA. Effectiveness of a community health worker-led diabetes self-management education program and implications for CHW involvement in care coordination strategies. Diabetes Educ. 2013;39(6):792\\u0026ndash;9.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eRosenthal EL, Wiggins N, Ingram M, Mayfield-Johnson S, De Zapien JG. Community health workers then and now: an overview of national studies aimed at defining the field. J Ambul Care Manage. 2011;34(3):247\\u0026ndash;59.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSmith M. Pharmacists\\u0026apos; role in improving diabetes medication management. J Diabetes Sci Technol. 2009;3(1):175\\u0026ndash;9.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eNabulsi NA, Yan CH, Tilton JJ, Gerber BS, Sharp LK. Clinical pharmacists in diabetes management: What do minority patients with uncontrolled diabetes have to say? J Am Pharm Assoc (2003). 2020;60(5):708\\u0026ndash;15.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eAmerican Diabetes A 10. Microvascular Complications and Foot Care: Standards of Medical Care in Diabetes-2018. \\u003cem\\u003eDiabetes Care.\\u003c/em\\u003e 2018;41(Suppl 1):S105-S118.\\u003c/span\\u003e\\u003c/li\\u003e\\n \\u003cli\\u003e\\u003cspan\\u003eSanders AP, Stoeldraaijers LG, Pero MW, Hermkes PJ, Carolina RC, Elders PJ. Patient and professional delay in the referral trajectory of patients with diabetic foot ulcers. Diabetes Res Clin Pract. 2013;102(2):105\\u0026ndash;11.\\u003c/span\\u003e\\u003c/li\\u003e\\n\\u003c/ol\\u003e\"},{\"header\":\"Table\",\"content\":\"\\u003cp\\u003eTable 1. Baseline demographics and comorbidities of the participants\\u003c/p\\u003e\\n\\u003ctable border=\\\"1\\\" cellpadding=\\\"0\\\" cellspacing=\\\"0\\\"\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eN=15\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eAge, year\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e54.2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eGender, n (%)\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Male\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Female\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e10 (66.7%)\\u003c/p\\u003e\\n \\u003cp\\u003e5 (33.3%\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eRace and ethnicity, n (%)\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; White\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Native American\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Hispanic\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e5 (33.3%)\\u003c/p\\u003e\\n \\u003cp\\u003e5 (33.3%)\\u003c/p\\u003e\\n \\u003cp\\u003e5 (33.3%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003ePrimary Insurance\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Commercial\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Medicare\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Medicaid of Indian Health\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e1 (6.7%)\\u003c/p\\u003e\\n \\u003cp\\u003e3 (20.0%)\\u003c/p\\u003e\\n \\u003cp\\u003e11 (73.3%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eEmployment Status\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Employed\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Unemployed\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; Retired\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e\\u0026nbsp;\\u003c/p\\u003e\\n \\u003cp\\u003e3 (20.0%)\\u003c/p\\u003e\\n \\u003cp\\u003e7 (46.7%)\\u003c/p\\u003e\\n \\u003cp\\u003e5 (33.3%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eHistory of Diabetic Foot Ulceration\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e15 (100.0%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eHistory of Diabetic Foot Infection\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e12 (80.0%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eHistory of Peripheral Artery Disease\\u003c/p\\u003e\\n \\u003cp\\u003e\\u0026nbsp; \\u0026nbsp;Open surgery or endovascular procedure\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e7 (46.7%)\\u003c/p\\u003e\\n \\u003cp\\u003e4 (26.7%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eHistory of Minor Amputation\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e8 (53.3%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003eHistory of Major Amputation\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd valign=\\\"top\\\" width=\\\"50%\\\"\\u003e\\n \\u003cp\\u003e1 (6.7%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n\\u003c/table\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":false,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":true,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":true,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"journal-of-foot-and-ankle-research\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"jfar\",\"sideBox\":\"Learn more about [Journal of Foot and Ankle Research](http://jfootankleres.biomedcentral.com)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/jfar/default.aspx\",\"title\":\"Journal of Foot and Ankle Research\",\"twitterHandle\":\"@jfootankleres\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC/SO AJ\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true},\"keywords\":\"Diabetic foot complications, foot ulceration, barriers in assessing medical care, health care system barriers, qualitative\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-1689888/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-1689888/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003cp\\u003e\\u003cstrong\\u003eIntroduction\\u003c/strong\\u003e\\u003c/p\\u003e\\u003cp\\u003eThe mechanisms for the observed disparities in diabetes-related amputation are poorly understood and could be related to access for diabetic foot ulceration (DFU) care. This qualitative study aimed to understand patients’ personal experiences navigating the healthcare system and the barriers they faced. \\u003c/p\\u003e\\u003cp\\u003e\\u003cstrong\\u003eMethods\\u003c/strong\\u003e\\u003c/p\\u003e\\u003cp\\u003eFifteen semi-structured interviews were conducted over the phone between June 2020 to February 2021. Participants with DFUs were recruited from a tertiary referral center in Southern Arizona. The interviews were audio-recorded and analyzed according to the NIMHD Research Framework, focusing on the health care system domain. \\u003c/p\\u003e\\u003cp\\u003e\\u003cstrong\\u003eResults\\u003c/strong\\u003e\\u003c/p\\u003e\\u003cp\\u003eAmong the 15 participants included in the study, the mean age was 52.4 years (67% male), 10 participants were from minority racial groups, and 11 were Medicaid or Indian Health Service beneficiaries. Participants frequently reported barriers at various levels of the healthcare system. \\u003c/p\\u003e\\u003cp\\u003eOn the individual level, themes that arose included health literacy and inadequate insurance coverage resulting in financial strain. On the interpersonal level, participants complained of fragmented relationships with providers and experienced challenges in making follow-up appointments. On the community level, participants reported struggles with medical equipment. \\u003c/p\\u003e\\u003cp\\u003eOn the societal level, participants also noted insufficient preventative foot care and education before DFU onset, and many respondents experienced initial misdiagnoses and delays in receiving care.\\u003c/p\\u003e\\u003cp\\u003e\\u003cstrong\\u003eConclusions\\u003c/strong\\u003e\\u003c/p\\u003e\\u003cp\\u003ePatients with DFUs face significant barriers in accessing medical care at many levels in the healthcare system and beyond.\\u0026nbsp;These data highlight opportunities to address the effects of diabetic foot complications and the inequitable burden of inadequately managed diabetic foot care.\\u0026nbsp;\\u0026nbsp;\\u0026nbsp;\\u0026nbsp;\\u0026nbsp;\\u003c/p\\u003e\",\"manuscriptTitle\":\"A Qualitative Study of Barriers to Care-Seeking for Diabetic Foot Ulceration Across Multiple Levels of the Healthcare System\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2022-06-02 14:55:59\",\"doi\":\"10.21203/rs.3.rs-1689888/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0},{\"type\":\"decision\",\"content\":\"Minor revision\",\"date\":\"2022-06-27T03:20:03+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"\",\"date\":\"2022-06-03T07:00:50+00:00\",\"index\":0,\"fulltext\":\"\"},{\"type\":\"reviewersInvited\",\"content\":\"\",\"date\":\"2022-05-31T11:54:59+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorAssigned\",\"content\":\"\",\"date\":\"2022-05-25T19:18:47+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"checksComplete\",\"content\":\"\",\"date\":\"2022-05-24T23:00:00+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvited\",\"content\":\"\",\"date\":\"2022-05-24T23:00:00+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"submitted\",\"content\":\"Journal of Foot and Ankle Research\",\"date\":\"2022-05-24T14:08:39+00:00\",\"index\":\"\",\"fulltext\":\"\"}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"journal-of-foot-and-ankle-research\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"jfar\",\"sideBox\":\"Learn more about [Journal of Foot and Ankle Research](http://jfootankleres.biomedcentral.com)\",\"snPcode\":\"\",\"submissionUrl\":\"https://www.editorialmanager.com/jfar/default.aspx\",\"title\":\"Journal of Foot and Ankle Research\",\"twitterHandle\":\"@jfootankleres\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC/SO AJ\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true}}],\"origin\":\"\",\"ownerIdentity\":\"7053c17d-7031-4707-a0a7-4edc04a2fafb\",\"owner\":[],\"postedDate\":\"June 2nd, 2022\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"under-review\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2022-07-22T11:27:06+00:00\",\"versionOfRecord\":[],\"versionCreatedAt\":\"2022-06-02 14:55:59\",\"video\":\"\",\"vorDoi\":\"\",\"vorDoiUrl\":\"\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-1689888\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-1689888\",\"identity\":\"rs-1689888\",\"version\":[\"v1\"]},\"buildId\":\"FbvkV6FR0MCFSLy54lSbu\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}