Abstract
Coordination of the necessary efforts of medical personnel, caregivers, and social networks to support a patient with a chronic health condition increases time consumption and costs. According to a CDC study from 2023, six out of ten Americans suffer from chronic illnesses, including diabetes, which can lead to other medical complications like diabetic retinopathy (DR). Care coordination programs are one of the systems currently in use to assist in the management of patient’s healthcare and the network of individuals involved in their treatment plans. Compared to institutions that utilize fewer care coordination systems, those that use these programs consistently have much higher patient attendance rates. Therefore, it is important that to improve the current systems we comprehend the user experience with care coordination. To study the barriers and motivations underlying participation in care coordination programs among diabetes patients, we created an interview utilizing the Integrated Behavior Model (IBM). The findings from our interviews will contribute to the body of existing literature by identifying barriers and motivators that must be taken into consideration when designing DR screening system aids.
Introduction
CDC research conducted in 2023 found that six out of ten people in the United States live with a chronic illness. Chronic conditions like diabetes can lead to many health concerns, including heart disease, chronic kidney disease, nerve damage, and eye problems, such as diabetic retinopathy (DR). DR is the leading cause of blindness in adults in the United States (Garrett, 2002). However, if DR is identified early, treatment is 95% effective (Fong et al., 2004). Unfortunately, screening compliance for DR is lacking (Lee et al., 2003). As a result, there is a need to understand how to assist patients in overcoming the barriers they face when seeking DR screening. This includes understanding the current systems and how they can be improved to make DR screening more accessible and convenient for patients.
The health issues associated with chronic illnesses significantly impact the average cost of patient care (American Diabetes Association, 2018). A study by Jeon et al. (2010) found that managing type 2 diabetes imposes a significant time burden on both people with the condition and their informal caregivers. Currently, there are systems in place that aid the management of patients’ healthcare, one of which is the care coordination program.
Care coordination involves a care coordinator who plans patient care activities, shares information with all parties involved, and ensures that the patient receives the safest and most effective care possible. This can help to reduce the amount of time that patients have to spend managing their care (Agency for Healthcare Research and Quality, 2018). A care coordinator might help patients coordinate their appointments with their primary care doctor, endocrinologist, and eye doctor. The care coordinator can free up the patient's time by taking on these tasks so that they can focus on managing their diabetes.
The Institute of Medicine has highlighted care coordination as a major tactic with the potential to enhance the American healthcare system's efficacy, safety, and efficiency. However, research has further revealed that care coordination has been implemented unevenly (Hannigan et al., 2018). Patient satisfaction is higher in hospitals that use more care coordination and transition techniques than in those that use fewer (Figueroa et al., 2018). Therefore, there is a need to understand the user’s experience when it comes to care coordination usage to improve current systems.
Human Factors Methods
Effective system design should take into account the users and the context in which the system will be implemented. Interviews are a method for understanding users by soliciting verbal reports to elicit knowledge and information (Cooke, 1999), and, they can also be used in place of direct observation (Gillan, 2012). Interview techniques can help inform future research and design decisions by gathering preliminary information about the system (Cooke, 1999). There are different interview methods that researchers need to consider when selecting the one that best suits their research goals. Structured interviews with prepared questions help researchers fully examine the system under consideration while trying to understand the user. This is because all participants are asked the same questions, which allows the data to be more reliable and comparable (Cooke, 1999).
Structured interviews can help us better understand how users of care coordination programs for diabetic retinopathy (DR) interact with the system. According to research by Lee et al. (2003), only around half of patients with diabetes are screened every year for DR. Gaining an understanding of the factors associated with DR screening participation will help in the design of suggested techniques and the development of an interface. The Integrated Behavior Model (IBM) can be applied to this interface to understand the obstacles and motivations behind task completion.
Behavior Models
The Integrated Behavior Model (IBM) is a theory that combines the Theory of Planned Behavior (TPB) and other theories related to behavior. The TPB emphasizes motivating factors as indicators of the possibility of carrying out a particular behavior (Montaño & Kasprzyk, 2008). According to the Theory of Planned Behavior (TPB; Ajzen, 2006), there are three categories of considerations that have the most impact on how people behave: behavioral beliefs, normative beliefs, and control beliefs. Behavioral beliefs refer to the perceived likelihood that a behavior will lead to certain outcomes. Normative beliefs refer to the perceived expectations of significant others about whether or not a behavior should be performed. Control beliefs refer to the perceived ease or difficulty of performing a behavior. The IBM was developed by incorporating the internal control aspects of the TPB, as well as perceived behavioral control for external factors that affect a person's intentions and behaviors (Montaño & Kasprzyk, 2008; Figure 1).
Framework for Diabetic Retinopathy screening adapted from the Integrated Behavior Model (Glanz et al., 2015).
We created a structured interview protocol based on the IBM factors to understand how care coordination users' behavior is modified according to the barriers and limitations they perceive. The data collected from these interviews will help us to fill in information gaps about the behaviors of patients who are at high risk of developing DR and their usage of care coordination programs. By analyzing the frequency of barriers and motivations collected from the participants, we anticipate gaining a deeper understanding of attitudes toward DR care coordination. This knowledge will enable us to redesign existing systems and overcome any obstacles or constraints found when implementing them.
Method
Participants
Thirty-five participants previously diagnosed with diabetes were recruited for this study. This sample size complied with TPB questionnaire recommendations (Ajzen, 2006). To recruit participants we used ResearchMatch, a Clinical Translational Science Award (CTSA) program sponsored by the US National Institutes of Health (NIH). Participants in this study had to be between the ages of 25 and 65, have either type 1 or type 2 diabetes, and, optionally, have a DR diagnosis.
Measures
Theory of planned behavior interview protocol
The first sections of the interview were duplicated from our previous interview: Background information, e.g. “When was the last time you had a routine eye exam?”; Knowledge about the task to be performed, e.g. “Do you think there is a relationship between retinopathy and diabetes? Yes/No”; Outcomes Assessment, e.g. “What do you think is the percentage of people with diabetes that eventually develop retinopathy?”; Knowledge Ratings, e.g. “Please rate how likely you think you are to lose vision due to diabetes in the next 5 years. A seven-point Likert scale was used, with 1 indicating that they were certain they would not lose vision and 7 indicating that they were extremely likely to lose vision.” (Salas et al., 2022).
The second portion of the interview centered on the influences of the intention to participate in care coordination programs:
The Constructing a Theory of Planned BehaviorQuestionnaire guidelines by Icek Ajzen (2006) wereused to create the interview questions for this study, and factors included in the IBM related to behavior were used to complement these questions. The information collected from these interviews allows us to assess the value of these factors to comprehend the challenges and motivations behind DR screening care coordination.
Design and Procedure
The study design used a structured interview to gather qualitative and quantitative data. Participants who consented to participate through ResearchMatch were contacted by phone and read the consent form. Once they consented to continue, the interview was conducted verbally. Before the interview began, the meaning of care coordination programs was explained to participants to reduce any misinterpretations of the questions. For example, “Some clinicians provide care coordination for people with diabetic retinopathy or other chronic eye disorders. General health status and any additional chronic illnesses, such as diabetes, would be inquired about. Also, they can assist with managing anything relating to patients' healthcare, such as managing insurance concerns, scheduling transportation to appointments, managing prescription refills, and more.” The interviews were audio-recorded and then transcribed, with all identifying information removed.
Participants were thanked for their participation and given a debriefing after the interview.
Results
Thirty-five participants with diabetes (MAge = 57.20, SD = 15.77; 39.5% female, 50% male, 10.5% other) participated in the phone interviews. 57.9% of the participants had been diagnosed with DR and 78.9% of them had a DR screening in the last 12 months. Overall results showed that 94.3% of participants agreed that there is a need to get screened yearly for DR, and 91.4% of the participants believe that good control of their diabetes may prevent DR. 71.4% of participants understand that they need to get screened for DR at least once a year. The results indicated that the majority of participants understand the importance of yearly screening as well as which health specialist they need to visit for their screening.
Control Factors
The Constructing a Theory of Planned Behavior Questionnaire guidelines by Icek Ajzen (2006) were used to create the interview questions for this study, and factors included in the IBM related to behavior were used to complement these questions. The information The control factors section of the interview aimed to identify the factors that would make it easy or difficult for participants to schedule and attend an appointment with a care coordinator. The results showed that participants were motivated to schedule and attend care coordination meetings by factors such as accessibility, time availability, broad scheduling availability, and scheduling comprehension (Figure 2). On the other hand, participants agreed that there were only a few barriers to scheduling and attending these meetings. The barriers identified were the current lack of scheduling availability and the lack of coverage by medical insurance (Figure 3).
Control Factors Frequency Analysis. Motivators to schedule/attend a Care Coordination Appointment. Bars represent the number of participant answers.
Control Factors Frequency Analysis. Barriers to scheduling/attending a Care Coordination Appointment. Bars represent the number of participant answers.
Behavioral Outcomes
This section assessed the factors that participants perceived as advantages and disadvantages of care coordination programs. The results showed that participants saw health control, health improvement, and education as the advantages of the program (Figure 4). One of the disadvantages was limited scheduling availability, and another was increased time consumption (Figure 5).
Behavioral Outcomes Frequency Analysis. Advantages of scheduling/attending a Care Coordination Appointment. Bars represent the number of participant answers.
Behavioral Outcomes Frequency Analysis. Disadvantages of scheduling/attending a Care Coordination Appointment. Bars represent the number of participant answers.
Normative Referents
The normative referent section sought to understand the people in participants' lives who would approve or disapprove of their participation in care coordination programs. On average, most participants reported that there were no people who would disapprove of their participation(Figure 6). On the other hand, participants reported that family members, partners, and primary care physicians would approve of their participation in the program (Figure 7).
Normative Referents Frequency Analysis. Groups/People who approve of the participant scheduling and attendance to Care Coordination appointments. Bars represent the number of participant answers.
Normative Referents Frequency Analysis. Groups/People who disapprove of the participant scheduling and attendance to Care Coordination appointments. Bars represent the number of participant answers.
Social Comparison
This social comparison section of the interview evaluated the attributes that participants assign to people who are least likely to schedule and attend a call with a care coordinator. Results showed that participants consider people who have excellent care of their disease, as well as people who are not interested in healthcare, to be the least likely to participate in these programs.
Discussion
Care coordination programs offer patients the opportunity to receive assistance in maintaining their health condition. While research has focused on improving care coordination programs from a system standpoint (Hannigan et al., 2018), there is a lack of research focused on the user demands of these programs. Figueroa et al. (2018) found that a strong correlation exists between better patient experience and a strategy in which patients are involved most directly in their care.This finding highlights the importance of understanding users' experiences with these systems.
The results of this study highlighted the motivators and barriers to developing healthcare systems for DR screening care coordination. These results will guide the creation of a TPB Questionnaire (Ajzen, 2006), which will help us to better understand how participants with diabetes rate the level of obstacles and motivators for using current DR screening care coordination programs.
The identified barriers and motivators will help us to better understand the behaviors related to care coordination programs. This understanding will allow us to develop more comprehensive systems that address the way in which eye care coordination is perceived and increase the number of people getting screened.
Footnotes
Acknowledgements
Research reported in this paper was supported by the National Eye Institute of the National Institutes of Health under award number R44EY033251. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
We want to recognize the assistance on this project from students in the LACE lab: Trevor Patten, Eve Vazquez, Demi Stamatakos, and Eleanor McNamee.