Barriers to Diabetic Foot Care in a Disadvantaged Population: A Qualitative Assessment

Abstract

Objective:

We explored barriers to proper foot care in this population using a qualitative approach with focus group discussions (FGD).

Methods:

Participants were recruited from clinics at a safety-net hospital in Atlanta, Georgia and stratified into two groups: diabetic foot ulcer (DFU) and minor amputation (below ankle). The FGDs addressed patient experience in receiving care with a goal of understanding:foot care knowledge,barriers to care, and preferred educational methods. Surveys were performed to supplement FGDs.

Results:

Forty participants (90% Black) were enrolled. Dominant themes emerging from FGDs were: 1-Patients reported adequate understanding of recommended foot care practices; 2-Personal barriers to self-care included lack of motivation, high cost, poor insurance coverage of supplies, and difficulty limiting activity for proper offloading; 3-Hospital system barriers included difficulty making timely appointments and reaching a provider to arrange care; 4-Access to footcare-related information and services improved with greater disease severity. Participants stressed that improved access often came too late to alter their course. They expressed interest in developing peer support groups to facilitate learning and sharing information relating to DFU.

Conclusion:

We found that patients with DFU or minor amputations have adequate footcare-related knowledge, but personal and systemic barriers limited appropriate foot care.

INTRODUCTION

Diabetes is the leading cause of lower-limb loss in the United States and worldwide ^1-3. Racial and ethnic minorities are disproportionately affected by diabetes-related foot complications ^4,5. Management of patients with diabetic foot ulcers is complex and requires comprehensive interventions combining multidisciplinary care and patient driven behavioral changes ^6-10. Patients with history of foot ulceration or amputation are at especially high risk of ulcer recurrence and additional amputations ¹¹. Both morbidity and mortality are dramatically increased when patients suffer a major amputation (above ankle). Despite the clear importance of reducing recurrent ulcers and amputation, the few studies evaluating patient education for secondary and tertiary prevention have had mixed results ^9,12 and effective interventions remain elusive. In clinical practice, patients with diabetic foot ulcers rarely receive formal foot care education regarding secondary prevention, which may explain low adherence rates to foot protective behaviors ¹³. Furthermore, patients of lower socioeconomic status and Black Americans, who are most prone to diabetic foot complications tend to have poor adherence to interventions in general ^14,15.

Few studies have assessed the efficacy of patient centered diabetic foot care programs culturally tailored to minorities at high risk of foot complications ¹⁶. Our group previously reported on significant gaps in care among patients with diabetic foot ulcers both during and post discharge with over 60% of patients failing to receive adequate followup wound care ¹⁷. In order to better understand the root causes of these gaps in care and guide the development of a tailored foot care program, we developed this qualitative assessment of patient experience in obtaining foot care at our center. We utilized focus group discussions (FGDs) to understand patients’ knowledge and perception of diabetic foot care, including beliefs and cultural factors influencing their behavior ¹⁸. The goals for study were to better understand: 1-foot care knowledge, 2barriers to foot care, and 3-preferred foot-related educational methods. Ultimately, we aim to use these findings to design a realworld study for secondary and tertiary prevention in diabetic foot care.

METHODS

We employed an embedded mixed-method design which consisted of an initial quantitative paper survey nested into a qualitative, exploratory design using focus group discussions (FGDs) with patients from a large, urban safetynet hospital. The hospital cares for a large percentage of the surrounding area’s disadvantaged patient population with a signifcant number of homeless individuals. Our group previously reported on the insurance status of patients admitted for diabetic foot ulcer in our hospital center with 75% receiving Medicare/Medicaid, 9% on private insurance, and 16% uninsured/self-pay ¹⁹. Participants were enrolled from the diabetes center, a tertiary multidisciplinary clinic which includes endocrinology and podiatry services. Patients seen in the center may have been referred by the hospital systems’ primary care or satellite clinic, an outside clinic, or by self-referral. For this study, we enrolled those with current or prior foot ulceration and/or minor amputations who were at high risk for re-ulceration and futher limb loss ^1,11. English-speaking patients ≥18 years-old who had a confirmed diagnosis of diabetes mellitus, had a history of foot ulceration and/or minor amputation (below ankle) were eligible for participation. Patients were screened by review of electronic medical records and initial eligibility criteria was confirmed by telephone encounters prior to scheduling for FGDs. People with history of major amputations were excluded. Participants meeting the inclusion criteria were recruited either in-person or by telephone.

Description of the Focus Groups and Surveys

FGDs were divided into two groups: foot ulceration without amputation (“Ulcer group”) or minor amputation (“Amputation group”), determined by history of only having ulceration versus minor amputation at time of enrollment. Group homogeneity is advantageous as the familiarity that comes from shared background or experiences has been shown to facilitate open communication and exchange of ideas ²⁰. A total of 40 participants were enrolled in 5 focus groups; 3 were designated to Amputation group and 2 to Ulcer group, each consisting of 6 to 12 people. Despite review of medical records and telephone pre-screening, survey data later revealed that 2 participants in the “Ulcer group” did have a history of minor amputation. Due to the collective nature of the FGDs, these particants’responses could not be excluded posthoc. The number of focus groups was determined a priori with the intent to add more groups if content saturation was not reached ²¹. As no significant new ideas emerged during the fifth focus group, no further sessions were organized. The duration of each focus group was 1.5 hours. The discussions were facilitated by a moderator and notetaker, were audio recorded, transcribed, and validated by the researchers.

The FGD guide contained 14 questions arranged into 4 main domains as detailed in Table 1. These domains included knowledge of foot care, perceived barriers to adequate foot care, preferred educational methods, and interest in participating in a community advisory board.

Table 1:

Focus Group Discussion Guide Questions by Domain

Domain	Question
1. Knowledge and cultural perceptions of adequate foot care	1. How would you describe proper diabetic foot care?
	2. How do you get information about proper ways to care for your feet?
	3. What do you know about the relationship between diabetes and foot complications?
	4. What are some factors that you know of that may put diabetic patients at risk for amputation?
2. Barriers to adequate foot care	5. What do you think are the biggest barriers to adequate foot care?
	6. How easy or difficult is it to come to Grady weekly for wound care? If you do this already, share your experience, if you don’t share your thoughts.
	7. How do you think having a visiting home wound care nurse would affect outcomes in patients with diabetic foot ulcers?
3. Preferred educational methods for protective foot behaviors	8. How would you like to learn more about how to better protect your feet?
	9. Imagine I showed you two videos, one talking about the benefits of taking care of your feet and managing your diabetes, and another talking about the complications of poor foot care like showing clips of amputated limbs. Which of these videos do you think will be most effective in convincing you to adopt long-term behavioral change? Why?
	10. How do you think a contractual agreement between you and your provider regarding foot care might affect your attitude towards proper foot care?
4. Interest in participation in a community advisory board	11. What are your thoughts about participating in this community advisory board?
	12. What are your thoughts about becoming a foot care educator?
	13. How would you like to be engaged for both roles?
Closing question	14. What suggestions do you have to improve foot education and foot ulcer care at Grady Health System Diabetes Clinic?

To supplement FGDs, all participants were asked to complete surveys at the start of the sessions. The questions assessed participant demographics, availability of social support, foot care practices, and foot care education (Tables 2, 3 and Supplement). We obtained most recent hemoglobin A1c (HbA1c) and estimated glomerular filtration rate (eGFR based on MDRD equation) by medical records review.

Table 2:

Patient Demographics

	All N=40	Ulcers Group N=19	Amputations Group N=21
Age, n (%)
25-34	1 (2.5)	0 (0.0)	1 (4.8)
35-44	(17.5)	4 (21)	3 (14.3)
45-54	12 (30)	7 (36.8)	5 (23.8)
55-64	16 (40)	6 (31.6)	10 (47.6)
>65	4 (10)	2 (10.5)	2 (9.5)
Gender, male n (%)	35 (87.5)	16 (84.2)	19 (90.5)
Race, n (%)
Black	36 (90)	17(89.5)	19 (90.5)
White	1 (2.5)	0 (0)	1 (4.8)
Other	3 (7.5)	2 (10.5)	1 (4.8)
Ethnicity, n (%)
Hispanic	2 (5.0)	1 (5.3)	1(4.8)
Non-hispanic	31 (77.5)	14 (73.7)	17 (81.0)
	11 (27.5)	3 (15.8)	8 (38.1)
Highest Education Level
<high school	4 (10)	2 (10.5)	2 (9.5)
High school or equivalent	17 (42.5)	8 (42.1)	9 (42.5)
Some College	8 (20)	4 (21.1)	4 (19.0)
Associate degree	3 (7.5)	0 (0)	3 (14.3)
Bachelor degree	4 (10)	4 (21.1)	0 (0)
Graduate degree	4 (10)	1 (5.3)	3 (14.3)
Homelessness in the past year, yes, n (%)	7 (17.5)	4 (21.1)	3 (14.3)
Living Situation, n (%)
Lives alone	8 (20)	4 (21.1)	4 (19.0)
Lives with family	27 (67.5)	14 (73.7)	13 (61.9)
Lives with a friend	4 (10)	1 (5.3)	3 (14.3)
Number of persons available to help with foot care, n (%)
No caregiver	21 (52.5)	10 (52.6)	11 (52.4)
One caregiver	12 (30.0)	4 (21.1)	3 (38.1)
>1 caregiver	6 (15)	4 (21.1)	2 (9.5)
Duration of Diabetes
≤1 year	1 (2.5)	1 (5.3)	0 (0)
1-2 years	3 (7.5)	1 (5.3)	2 (9.5)
2-5 years	5 (12.5)	2 (10.5)	3 (14.3)
5-10 years	4 (10.0)	2 (10.5)	2 (9.5)
>10 years	27 (67.5)	13 (68.4)	14 (66.7)
HbA1c (mean/SD) *	8.9 (2.4)	9.1 (2.3)	8.8 (2.5)
eGFR ml/min/1.73m2 *
<30	6 (15)	2 (10.5)	4 (19.0)
31-45	6 (15)	4 (21.1)	2 (9.5)
46-59	5 (12.5)	2 (10.5)	3 (14.3)
≥60	23 (57.5	11 (57.9)	12 (57.1)

Table 3:

Foot care experience and knowledge (selected survey questions)

Question	All N=40	Ulcers Group N=19	Amputations Group N=21
Do you have unsteadiness when walking?, yes, n (%)	25 (62.5)	11 (57.9)	14 (66.7)
Do you have numbness in your legs or feet? yes, n (%)	33 (82.5)	17 (89.5)	16 (76.2)
Do you have burning, aching, pain, or tenderness in your legs or feet?	34 (85.0)	17 (89.5)	17 (81.0)
Do you have pricking sensations in your legs or feet?	28 (70.0)	14 (73.7)	14 (66.7)
Can you see the bottoms of your feet?	29 (72.5)	12 (63.2)	17 (81.0)
Can you reach the bottoms of your feet?	36 (90.0)	17 (89.5)	19 (90.5)
How often do you check your feet, n (%)
Every day	31 (77.5)	15 (78.9)	16 (76.2)
2-6 times/week	7 (17.5)	3 (15.8)	4 (19.0)
Once a week or less	1 (2.5)	0 (0.0)	1 (4.8)
When I have a problem	0 (0.0)	0 (0.0)	0 (0.0)
Do you wash your feet every day?	32 (80.0)	17 (89.5)	15 (71.4)
Do you dry your feet after you wash them?	29 (97.5)	18 (94.7)	21 (100)
Do you use moisturizing cream on your feet?	32 (80.0)	13 (68.4)	19 (90.5)
Who cuts your toenails? (check all that apply)
Self	14 (35.0)	9 (47.4)	5 (23.8)
Family member	3 (7.5)	2 (10.5)	1 (4.8)
Caregiver	0 (0.0)	0 (0.0)	0 (0.0)
Footcare nurse	7 (17.5)	2 (10.5)	5 (23.8)
Podiatrist	19 (47.5)	8 (42.1)	XYZ
Do you soak your feet?	19 (47.5)	9 (47.5)	10 (47.6)
Do you always test the water temperature before putting your feet in?	32 (80.0)	16 (84.2)	16 (76.2)
Do you put moisturizing creams or lotions between your toes?	26 (65.0)	12 (63.2)	14 (66.7)
Do you walk around in your bare feet either inside or outside your home?	7 (17.5)	4 (21.1)	3 (14.3)
Do you ever wear shoes without socks	7 (17.5)	5 (26.3)	2 (9.5)
Do you inspect your shoes for foreign objects or torn linings?	25 (62.5)	12 (63.2)	13 (61.9)
Do you use a hot water bottle or heating pad on your feet?	2 (5.0)	1 (5.3)	1 (4.8)
Have you ever received education on proper footwear?	14 (35.0)	5 (26.3)	10 (47.6)

Data Management and Analyses

Survey data was entered into REDCap database.²² Audio recordings from all the structured FGDs were transcribed verbatim by a professional transcription service and validated for accuracy by two of the authors (C.N.A and R.N.W). All transcribed interviews were analyzed using MAXQDA software version 2018.2. An inductive coding approach was used to maintain the integrity of the intentions and meaning of the quotes that developed each code. Line-by-line coding for the first transcript was performed by two of the authors, C.N.A. and R.N.W., who read and discussed the transcript together. In establishing the codebook, the researchers utilized elements of the Health Belief Model, a psychological health behavior change model that has been validated for use in describing preventive health behaviors as well as engagement in other health services initiatives such as patient safety ^23,24. The two authors then performed line-by-line coding for the other four transcripts independently and then compared codes and discussed them to reach a consensus. Thematic analysis with queries of intersections of rich coded segments were pulled from MAXQDA to explore the variations in narratives. Key themes and sub-themes were identified from these processes to capture the lived experiences of the population. This study was approved of and overseen by the Emory University institutional review board and Grady Research Oversight Committee.

RESULTS

Participant characteristics

Participant characteristics are detailed in Table 2. Forty percent of participants were aged 55-64, with participants in the Amputation groups falling into older age brackets than those in the ulcer groups. Participants were mostly male (87.5%) and Black (90%). The most common educational levels were high school or equivalent (Ulcer groups: 42.1%; Amputation groups: 42.5%). There were 4 (21.1%) participants in the Ulcer groups and 3 (14.3%) in the Amputation groups who reported homelessness in the past year. Approximately half of the participants did not have any cargegiver to assist with their diabetic foot care. Most participants (67.5%) reported diabetes duration > 10 years. Mean HbA1c was 8.9% and the majority of participants (57.5%) had eGFR ≥60 ml/min/1.73m2

Diabetic Foot Care Knowledge and Practices Surveys

Participant knowledge of and performance of foot protective behaviors is reported in Table 3. Overall, participants reported good knowledge of appropriate foot care. Most participants (77.5%) reported checking their feet daily and 80% said that they washed their feet daily. There were 17.5% of participants who reported ever walking in their bare feet.

Focus Group Discussions

The following core themes were represented with consistency and richness throughout the focus group discussions. Each of the focus group discussions included aspects of all of the themes in their discussion and examined them from a perspective unique to their experiences with diabetes and healthcare resources.

Domain 1. Knowledge

Knowledge of and limitations to general diabetes care

Participants discussed how a diagnosis of diabetes prompted a need for a change in their diet and they emphasized the importance of self-control in the decision. Despite general understanding of dietary recommendations, participants reported that implementation was difficult because it required a strong shift away from their dietary norms. These dietary limitations resulted in feelings of social isolation from inability to participate in community and family-based activities. Some participants also discussed difficulty accessing healthy foods in their area.

“When I think about, in general, being diabetic, it’s the choices out there, like, when you’re out around Atlanta, certain areas, you got a Popeye’s here, you got Church’s here, you don’t have the healthiest choices every time, they don’t give you, like, the healthy, you know, like, if you don’t have a lot of money around, you know, just in general, you can’t always eat the best, you gotta eat what you can.”

(Amputation group)

Knowledge of foot care practices and limitations to self care

Participants in both the Ulcer and Amputation groups described understanding and practice of recommended methods for proper footcare practice. To accomodate physical limitations, some used mirrors or cameras on their phone to examine their feet. A few participants also described family members or an in-home nurse aiding them. Despite reported current knowledge of proper footcare, participants reported only learning about this after developing foot-related complications and felt that the information needed was not readily available earlierin their disease course.

“They talk about blood sugars and monitoring your sugars and advertise about different machines and stuff, but they don’t talk about proper foot care, wearing the proper shoes, socks, anything like that. Like the brother said, it’s nothing on t.v. like that. I don’t even see infomercials late at night, I don’t see anything about that, and it just seems like once you get into trouble with your feet, then you start getting all this information and it’s like, it’s a little too late. You know what I’m saying? For your other foot, yeah you can take care of that now, but it’s a little too late because when I was first diagnosed with diabetes, they always concentrated on monitoring your blood sugars, taking your medicine on time, they never talked about foot care, not that much.”

(Amputation group)

“They never talked about foot care or anything. Like he said, they talk about the blood sugar, or this and that and medicine, but that’s about it. Come to the foot, they didn’t say anything.”

(Amputation group)

Domain 2. Barriers to Care

Perception of Foot Complications and Personal Barriers to Care

Participants from both groups said that proper footcare was a major responsibility. While some participants reported a sense of ownership over their health, discussing the effect of their behaviors on their disease, others felt that lack of access to high quality health care was the major contributor to their illness. These differences were unrelated to the participant severity group. A few participants also reported initially having denial about the severity of their diagnosis, leading to delays in changing their behavior.

“I been had diabetes since 1995 and my feet starting going bad then, but I didn’t understand, I didn’t know, didn’t no one tell me or I didn’t go to the doctor for that, I just kept on working right, nothing wrong, although my feet was in pain because I, you know, I made deliveries, you know, I was constantly moving all day, so I kinda had my sugar under control”

(Amputation group)

All discussions reflected on how diabetes complications affected their overall sense of well-being. However, among those in the Amputation group, these discussions were much more robust. Amputation group participants discussed how long-term management of diabetes and the physical adverse effects to their bodies contributed to negative feelings such as depression and irritation. Some contributing factors included distress about their physical appearance (amputated limbs, enlarged feet), dietary limitations, and limited range of activity (standing occupations, playing basketball).

“But, see that’s my thing with diabetes…it’s just the fact that by me having diabetes affected two things that I love to do. I love to eat, you know, I have a big family and I grew up under my grandmother’s roof, so she cooked all the time. So, I love to eat. So, me being diabetic just stripped, stripped that…And the number two thing I love to do is play basketball. Me having, you know, sore feet, bad feet, you know, I can’t play basketball…It’s really annoying, aggravating, and irritating to have diabetes.”

(Amputation group)

Another barrier identified by participants in the Amputation group was a lack of motivation. Participants expressed a lack of motivation to perform proper footcare regularly.

“I think the biggest, and some may agree, some may disagree, some may not like it, but I think it’s just lazy. Especially once you know you’re susceptible. Taking that extra five, ten minutes, putting somebody else in play if you can’t do it yourself. Taking that extra step, I think, isn’t done. At least I’ll accept that in my case, you know. It got to a point where I knew that it was a possibility and rather than be as aggressive in checking as I should have been, it was just like a glance, oh there it is, you know? There’s no pain, so there’s no problem and I think taking less than an extremely assertive approach is the biggest issue.“

(Amputation group)

Healthcare System Barriers

Participants from both groups frequently reported barriers to care at multiple levels of the healthcare system. Many participants reported long waits before getting their appointments and felt that delays in care contributed to or caused worsening of their foot conditions. Some participants had difficulty in making and/or keeping their doctor’s appointments, and in particular expressed need for extended clinic hours. If appointments were missed, they felt that they could not be reschedule in a timely manner. As a result, they sometimes went to urgent care facilities or a different hospital to obtain care. The participants agreed that, as the severity of their disease worsened, healthcare options became more readily available.

“Before I got to this level with my amputation, it was kind of difficult because the only place they had for you to go was to diabetic clinic. The first thing when I called, the nurse, they said, “you need to go to the wound care [clinic].” I said, “well okay.” I called and they said, “we don’t have anything but the diabetic clinic.”

“The only way you can get in the diabetic clinic early or quick is you got a hole in your foot. Otherwise you got to wait months for you to see a diabetic podiatrist.”

(Amputation group)

Participants in the Ulcer group also cited difficulties in obtaining wound care supplies. They stated that the supplies provided by the hospital only lasted for a few days and due to the chronic nature of the wounds and the high cost of wound care supplies, they could not afford to obtain them.

“If you don’t have the proper stuff to take care of your foot, they give you a little bit [supplies]. Just a little to take home with you… If you don’t have Medicaid or Medicare or anything like that it has to come out of pocket. “

“…And the other one is cost. The gauze, the bandages, wraps. A simple purchase is fine, but you got years of purchases in front of you, so it’s taking a bigger part of your budget.”

(Ulcer group)

Participants also described tension with providers as barriers to care stating that providers in both hospital and clinic settings were often rushing, had overly negative outlooks and favored “cutting” over other treatments.

“When you come to the hospital, sometimes they just do what they do to get you in and get you out. They don’t care how… Some hospitals and doctors do what they are supposed to do. Some of them just get you in and get you out. ”

(Ulcer group)

Domain 3. Preferred Education Methods

Participants were in strong agreement on the need for more educational resources specific to managing diabetic foot disease. While they expressed a fair understanding of footcare at the time of the session, they felt that having these resources earlier could have prevented complications. Participants commonly cited peer education and support groups as a preferred method of learning because of the social support and information sharing benefits.

Participant 1: “I would want to learn about it through somebody who have experienced it.”

Participant 2: “Yeah. Because people do look at you like, oh, you’re sick, if you tell them too much, they’re like, oh, he’s sick, you know, or they’re sick. You know, but, like, a person who’s been through it, they understand.” (Amputation group)

Many of the sessions were at times used as a means of sharing information, advice, and traumatic experiences with one another.

Moderator: “So you prefer in person discussions like this?”

Participant 1: “Yeah. It’s so much you can say on the phone or be on the internet, all that. You know, you need to be in person, dealing with this. We need to have something like this. Do it just how we did it.”

Participant 2: “I like group discussions, because I learn more and basically some of you all’s stories have really frightened me because I’m like “oh God, I’m not trying to lose nothing.”…We’re learning from each other now.” (Amputation roup)

Participants also cited preference for teaching sessions with a provider, for fact-checking, as well as more online resources they could reference outside of sessions. Participant perception of negative-framing versus positive-framing education techniques were mixed with the majority of participants describing interest in both techniques to receive as much information as possible.

Amputation group participants expressed interest in sharing their personal experience as a way of educating and warning others.

“We ain’t selfish… I need to know somebody who done been through the trenches as well, I kind of take it on better from somebody who kind of been through the same situation I been in…so to pass it on to somebody who’s kind of going through the same thing or in that zone of like, okay, this could happen to you….Yeah, I would be down for that, I’m down for that. Definitely sharing knowledge.”

(Amputation group)

Domain 4. Interest in Participation in a Community Advisory Board

Among participants who were interested in providing peer education as foot care educators, payment was the most often cited incentive, while food and moral good were also mentioned by some participants.

“I would like to see a board like that, but I would like to be compensated for our time.”

(Amputation group)

“I don’t mind helping. But if you’re asking what price range. I would do it for free at times if I had to. But I’m looking at it like this here. If we’re getting paid, if they really want you to come down here. Like I said, money moves a lot of things.”

(Ulcer group)

DISCUSSION

We performed an exploratory study aimed to better understand knowledge of adequate footcare, perceptions of diabetic foot disease, barriers to care, preferred education methods for learning about footcare, and interest in participanting in an advisory board. Our results showed that most participants had a good understanding of appropriate footcare, with over 70% answering correctly for most questions. Our FGDs supported these findings of appropriate knowledge of diabetic footcare but reported on numerous barriers to care despite this. These included social barriers such as feelings of isolation linked to dietary changes, physical barriers due to disability, and emotional barriers with poor motivation and general frustration, feelings of hopelessness, and depression. Barriers within the healthcare system also prevailed with participants reporting difficulty making, keeping and rescheduling appointments as well as perceived lack of understanding from healthcare providers. This lead some people to seek care at different facilities and to increased use of urgent care and hospital resources. As disease severity worsened, both knowledge of and access to care generally improved. These finding are in line with our previous report, which showed that patients undergoing amputations were more likely to have a post-hospital discharge visit compared to those without amputation¹⁹. Finally, peer to peer education and support groups emerged as a preferred educational method.

Prior diabetic foot ulcer is a strong predictor of future ulceration with 40% of affected individual experiencing recurrence within 1 year ¹¹. This highlights the difficulty of effective interventions in secondary and tertiary prevention of recurrent foot ulcers and amputation, respectively. Effective interventions have been difficult to implement due to their complexity, involving coordination of care from medical and surgical specialties as well as changes patient behavior. This, perhaps, is why studies assessing efficacy of diabetic foot care programs have had mixed results. Malone et al found that using a multifaceted education program incorporating lifestyle modifications and diabetic foot care instruction among patients with history of foot ulcer was associated with 3-fold reduction in rates of ulcers and amputations over a 2 year follow up period ¹². Later studies attempting to replicate these findings have had inconsistent results with effectiveness of interventions often being driven by patient adherence ^9,25-27. This was supported in our focus groups sessions where people often failed to follow foot protective behaviors despite adequate knowledge and often sited these failures as a cause of their disease progression.

Culturally tailored programs have been shown to improve general diabetes related outcomes among underserved communities ²⁸. Using focus group discussions, we aimed to better understand barriers to care faced by high risk patients from underserved communities. We identified patient experience of limited access and lack of understanding from healthcare providers as a primary source of frustration and inadequacy experienced by the participants. Although all groups reported on diabetic foot disease affecting wellbeing, feelings of depression were most strongly reported by those in the Amputation group. These findings are similar to those previously reporting a strong correlation between diabetic foot disease, depression and quality of life ^29-32, highlighting a potential need for mental health support in this population.

The complexity of diabetic foot disease management is compounded by patient physical and financial limitations in this especially high risk and underserved population. Our group will be using the findings of this study to develop a comprehensive foot program. To tackle some of the barriers identified by the FGDs, we will incorporate patient advocates to help people navigate the healthcare system, mental health counseling to improve motivation, and peer groups to reinforce education.

Limitations

While we sought to apply organized methodology throughout the research process, there were some limitations to this study. While lack of insurance was reported as a barrier to care during the FGDs, specific insurance status was not directly obtained from each of the participants. The participants were all screened from specialty clinics where some degree of patient education had likely already taken place. This may explain why many of the participants had relatively good foot self care knowledge and behaviors, with rates higher than previously reported for similar groups ³³. Alternatively, a potential limitation of the survey questions is that they were not open ended and it is possible that participants had reporting bias leading to better than expected results. For Domain 3 of the FGDs regarding preferred educational methods, we discussed two visual styles of positive versus negative framing. There was limited discussion among participants on this question and, perhaps, we could have elicited more robust responses with the use of video clips or more open ended questioning. Due to the group dynamics of FGDs, absolute confidentiality could not be guaranteed to participants which may have hindered open communication. Our team sought to counter this limitation by working to encourage confidentiality for all responses, considerate probing, and warm-up questions during the sessions. Our study population was fairly homogeneous and likely did not adequately represent all people at risk of diabetes-related foot complications. Participants were selected from a single hospital center and from within subspecialty clinics, and the groups had an underrepresentation of women and non-Black racial and ethnic groups. To develop culturally tailored interventions, additional studies focusing on these other groups will be needed. However, the patient population at this inner city hospital mirrors other high risk populations within the United States who would most benefit from aggressive interventions. Finally, as our goal is to develop a secondary and tertiary amputation prevention program, we only included subjects with history of a diabetic foot ulcer and/or minor amputations. We did not recruit a comparison group of subjects with no history of diabetic foot disease. Future studies on patients without history of foot ulcers are needed to address primary prevention needs.

CONCLUSION

In summary, we provide the findings of focus groups sessions addressing patient knowledge, barriers to care, and learning preferences among patients who have a history of foot related complications. Our findings will serve as a framework to guide future quality improvement and research addressing amputation prevention.