Abstract
Rising rates of chronic disease and an aging population are stressing the U.S. health care system and driving change in primary care delivery. More than half of the U.S. population is living with at least one chronic condition, and 40% of the adult population has two or more chronic conditions (Centers for Disease Control and Prevention, 2019). Not surprisingly, chronic diseases account for 75% of health care costs in the United States (Milani & Lavie, 2015).
In the traditional health care model, care for chronic disease falls on the primary care physician (PCP). However, the ability of PCPs to efficiently and effectively provide care is becoming progressively difficult because they face time constraints in providing necessary face-to-face patient care (Milani & Lavie, 2015). It is predicted that by 2035, an additional 44,000 PCPs will be required to meet the needs of the population; however, medical schools are not currently producing enough PCPs to meet this demand. Therefore, the United States is on its way to a PCP shortage (Petterson et al., 2015).
To address the increasing burden placed on the primary care system, clinicians are developing and testing new team-based models of care. Primary care teams are commonly described as being physician led with team members from various clinical fields (Hutchison, 2014; Margolius et al., 2012). Team-based care allows physicians to focus on medical diagnosis and acute treatment, whereas the team takes on greater responsibility in the management of chronic conditions and routine prevention. Research has provided examples of the benefits of team-based primary care in managing chronic conditions such as diabetes and hypertension (Hutchison, 2014; Kravetz & Walsh, 2016).
Although research supports the effectiveness of team-based primary care, studies of primary care teams that include occupational therapy are rare. This lack of inclusion of occupational therapy on primary care teams may be due, at least in part, to the limited understanding of the occupational needs of primary care patients and the potential role that occupational therapy can provide in this setting (Donnelly et al., 2013). To that end, the purpose of this study was to explore the potential need for occupational therapy at a primary care clinic serving a medically complex population. This study was guided by the following research questions: (1) What needs do primary care patients have that could be addressed by occupational therapy? (2) What challenges do primary care clinicians face in treating patients with complex needs? (3) What unique contributions could occupational therapy provide to the primary care team?
Method
Design
In this descriptive study, we used qualitative content analyses to explore the potential need and possible roles for occupational therapy in a team-based primary care setting. We used semistructured interviews of patients and staff along with transcriptions of team meetings. The study was developed from a larger project examining the process of care coordination that was approved by the university’s institutional review board. Written consent was received from all participants before data collection.
Setting and Participants
The research was conducted at the complex care clinic (CCC) of an academic medical center. The CCC was created to address the complex medical, behavioral, and socioeconomic needs of uninsured and Medicaid patients with six or more comorbid conditions who are high users of the medical system. The CCC model is centered on an interprofessional team to provide holistic care from a single location. The clinic strives to engage the patient, address socioeconomic barriers, and connect patients to appropriate services and resources (Virginia Commonwealth University, 2013).
Patients were recruited from a staff-provided list of 36 patients, including both patients whom the staff identified as engaged and progressing in the management of their health and those whom they identified as less engaged and who continued to struggle with managing their conditions. All patients had been attending the clinic for at least 1 yr. All patients were contacted via telephone. All CCC team members were recruited for interviews via email.
Data Collection
The CCC team meets weekly to organize patient care. Researchers recorded 10 of these approximately hour-long meetings between October 2014 and January 2015. Clinician and patient interviews were conducted between March and May 2015. The interviews were conducted by a PhD-trained qualitative researcher, a research associate in the Department of Family Medicine, or one of three occupational therapy students. All interviewers were trained in the interview process, although interview experience varied from novice to expert.
The 30- to 60-min clinician interviews were conducted in private spaces in or near the clinic and included questions about the clinic process and procedures, challenges and successes, patient engagement, and team-based care (interview guides are available from the first author). The 30- to 90-min patient interviews were conducted in locations selected by the patient, including the patient’s home, space in the academic medical center’s hospital, or another public location. The patient interviews included questions about their experience at the clinic, perceived health changes, challenges in working with the clinic, and limitations to occupational performance.
Data Analysis
Audio recordings of the team meetings and the interviews were transcribed verbatim and checked for accuracy. The transcripts were coded and analyzed with ATLAS.ti (Version 7; Scientific Software Development GmbH, Berlin, Germany). A general immersion–crystallization approach was used whereby the coding team engaged in a continuous process of reading and rereading the transcripts and developing codes to understand the significance of the data (Borkan, 1999).
To develop the codebook, the coding team independently open coded a subset of the transcripts (two each of patient interviews, clinician interviews, and team meetings). Using a directed content analysis methodology in which a predetermined coding framework was used to describe or extend the theoretical framework (Hsieh & Shannon, 2005), the team first identified and applied codes derived from the Occupational Therapy Practice Framework: Domain and Process (3rd ed.; OTPF–3; American Occupational Therapy Association, 2014; examples of codes include activities of daily living [ADLs], instrumental activities of daily living [IADLs], and habits and routines). Additional codes were identified through an emergent process when data did not fit within the predetermined OTPF–3 codes (e.g., patient engagement and medication adherence). The team met to discuss and compare the preliminary open coding, and codebooks were developed from the discussions. The first author and the research assistant then independently coded the remainder of the transcripts using the codebooks. Coders met to compare coded transcripts, and any discrepancies were discussed until consensus was formed and codes merged. This process was completed for each type of data collected.
After initial coding of all transcripts was complete, the first two authors met to begin identifying themes. Through an iterative process, related codes were combined into themes (e.g., codes for “ADLs,” “IADLs,” and “community mobility” were combined to form the theme of “occupational challenges”), and some initial themes were ultimately divided into separate themes (e.g., the initial theme of “complex patients” was broken into the final themes of “medical management,” “mental health,” and “limited resources”). Themes were initially formed for each type of data, and eventually themes were compared and contrasted with each new type of data and reorganized as patterns emerged. After all data were examined together, themes were conceptually ordered to describe the data and explain relationships among themes.
Because the first author had been involved in the original study, had conducted interviews, and had used other sources of data from the CCC (including embedding in the clinic work room for 15 hr), potential biases related to previous experience and understanding were kept in check through constant reflexivity and were documented through the memo process. Moreover, multiple coders were used to allow greater opportunity to ensure that all themes were identified and that data were consistently being interpreted to limit the potential effect of bias or singular point of view. Development of a codebook and use of memos to track how categories and themes were formed allowed for auditability of the analysis.
Results
The clinic director and all 9 CCC clinicians were interviewed (n = 10). More than half of the patients were unreachable because of disconnected or changed phone numbers or unreturned voicemail messages. Of the 15 patients who were successfully contacted, 14 were eligible for participation (1 patient could not confirm being a CCC patient) and 13 agreed to participate in the study (1 patient was unavailable during the interview period). Patient demographics were not provided, although gender was identified through the interviews. Characteristics of the sample are shown in Table 1.
Participant Characteristics (N = 13)
Note. RN = registered nurse.
Analysis produced a broad range of patient needs, resulting in challenges for clinicians and patients. On the basis of the patient’s needs, four domains of challenges faced at the CCC were identified by both patients and clinicians: medical management, mental health issues, patients’ limited resources, and occupational challenges. A fifth domain was identified solely by clinicians: cognitive–behavioral issues. Subthemes were identified within each domain and are discussed in detail next. Representative quotes are provided in Table 2.
Representative Quotes by Theme and Subtheme
Note. C = clinician; P = patient.
Medical Management
Complex Needs.
The complex needs of patients was a consistent theme across all three sources of information. Complex medical histories and current medical needs presented unique challenges to the team and patients because each patient had multiple diagnoses. Although chronic conditions, including diabetes, obesity, and hypertension, were commonly cited, the complexity and combination of diagnoses were distinct to each patient. Portions of the weekly team meetings were spent reviewing patients who were currently hospitalized for acute conditions, such as stroke or pneumonia. Because of the complex medical conditions, managing medications and coordinating care presented a challenge to clinicians and patients.
However, despite the medical complexity, clinicians often spoke matter-of-factly about patient medical needs. Instead, clinicians found the greatest challenge they were presented with was addressing the host of related social, behavioral, and cognitive dimensions on top of the medical needs. These issues were frequently acknowledged in the team meetings where clinicians discussed the patients’ lives to better understand the multifaceted nature of their health and illnesses and to problem solve how the team could address these issues.
Medication Adherence.
Adherence to medication plans was identified as a major patient need posing a challenge to clinicians. In fact, one clinician described taking medications as prescribed as the primary way that patients demonstrated responsibility for their health. At the same time, clinicians acknowledged the many barriers that can affect medication adherence. They described numerous strategies that they used to help patients adhere to their medications, including education, filling patients’ pill boxes, locating pharmacies that dispense medication in pill packs, and calling patients to remind them to take their medications.
The patients also reported medication adherence to be a challenge. When discussing their medications, most of the patients noted that they were trying to follow the clinician’s orders and understood the importance of taking their medications, even if they did not fully understand what they were, as evidenced by a patient who admitted, “I don’t know what to do, what to take. But they give me the medicine, so I try to take it” (Patient 2). Several patients reported that they relied on clinic staff or their family to ensure that they were taking their medications correctly.
Pain Management.
Pain management was a theme in both patient and clinician interviews as well as during team meetings. Clinicians often discussed the discordance between the clinic’s philosophy of prescribing opioid pain relievers only as a last resort (if at all) and patients who expected, and sometimes demanded, opioids. This contention had the potential to affect the clinician–patient relationship. From the patient perspective, several of those interviewed cited pain as an impediment to their ability to engage in meaningful activities.
Mental Health and Substance Abuse
In addition to the numerous medical needs experienced by clinic patients, many of them also had comorbid mental health needs, including depression, anxiety, and more severe conditions causing hallucinations and delusions. One clinician estimated that 70%–90% of the clinician’s patients had a mental illness. Mental health issues were anticipated when the clinic was formed, and behavioral health specialists, including the psychologists and social worker, were explicitly included on the interprofessional team to assist with these issues. Several of the patients interviewed also acknowledged their struggle with mental health issues, such as anxiety and depression, and noted that the clinic was helping them to address it.
Substance abuse issues were a specific mental health issue mentioned by the clinicians as an impediment to the patients’ ability to manage their health, although only 1 patient acknowledged a current substance abuse (alcohol) problem as affecting the patient’s health. In particular, clinicians discussed their concern that for some patients who were dealing with substance abuse issues, health became less of a priority, and they were less inclined to engage with the clinic. Clinicians did not discuss direct substance abuse interventions other than basic education on the negative outcomes of substance abuse, but they did mention referring patients to community resources, such as Alcoholics Anonymous.
Limited Resources
Both patients and clinicians acknowledged the challenge that patients’ limited resources presented for managing health. From the patients’ perspective, limited resources affected their ability to follow the clinic’s recommendations. Although their insurance plan covered a substantial portion of medical expenses, it did not cover day-to-day expenses that contributed to health and clinic engagement. Many patients also cited difficulty getting to and from the clinic for their appointments because they did not have enough money for the bus or a cab.
The clinicians acknowledged that fundamental needs, such as stable housing, had to be addressed to effectively manage the patients’ health and medical conditions. For example, because insulin must be refrigerated, care must be taken when working with a homeless patient about where and how to store his or her medications. Similarly, most homeless shelters would not accept people requiring medical support, such as oxygen, which is a common need for people with severe chronic obstructive pulmonary disease. These needs were frequently discussed at the weekly meetings where the team collaborated to identify workable solutions, such as adjusting treatment and providing referrals for government and community resources (including transportation vouchers, low-cost prescription assistance programs, and assistance in locating affordable housing).
Cognitive–Behavioral Issues
The overarching theme of cognitive–behavioral issues, which includes subthemes of unhealthy habits, poor problem solving, and lack of engagement, was the only theme identified solely in clinician interviews and team meetings and in patient interviews.
Unhealthy Habits.
Clinicians frequently discussed what they considered to be unhealthy behaviors of some patients, including smoking and not maintaining a healthy diet. Several clinicians noted frustration when, in their opinion, patients appeared unwilling or unmotivated to make necessary behavior changes or expected the clinicians to be able to “fix” the behavior for them. Clinicians primarily used education and referral to community resources (such as food banks) to encourage healthier habits.
Poor Problem Solving.
Clinicians suggested that some patients were not able to effectively problem solve, which led to their limited ability to manage their health. An issue that frequently came up during team meetings was lapsed insurance or Medicaid coverage. When difficulty arose in filling out the paperwork or providing documentation, the clinicians noted that, rather than problem solve how to address the issue, some patients just did not complete the required paperwork at all. Although the clinic is staffed with a case manager and social worker to assist patients with the many socioeconomic barriers that they face (e.g., through coordination with the Medicaid office or referral to programs to assist with prescription costs), the clinicians pointed out that some patients in the study skipped appointments rather than reschedule when conflicts arose and even stopped taking medicine when they did not have the money to pay for it, rather than call the clinic to explain the situation and ask for advice and assistance. The clinicians did not mention specific strategies that they used, if any, to improve patients’ problem-solving skills. Rather, they relied on detailed instructions and education on when and how to seek assistance.
Lack of Engagement.
A major challenge that the clinicians identified in working with some patients was a perceived lack of engagement. They typically defined an unengaged patient as one who consistently did not keep or show up for appointments. Lack of engagement was also used to describe instances when they believed patients were not fully participating in their health care decisions or taking responsibility for their health management (e.g., not waiting to pick up medications from the pharmacy or not taking their medications).
Although clinicians expressed frustration with some patients’ lack of engagement, they often worked toward understanding potential reasons for the lack of engagement, such as work schedules, transportation, and substance abuse. For instance, a clinician discussed the potential health literacy issues that may be affecting patient engagement, asking, “How much do they even understand about health?” (Clinician 8). Clinicians also acknowledged that many of their patients were familiar with the immediacy of receiving care through the hospital’s emergency department and had a difficult time transitioning to the clinic process, which required more planning and personal responsibility. Moreover, at team meetings, clinicians discussed patients who were not engaged in the clinic, and they problem solved strategies, such as calling the day before appointments and providing education about health and medications, to stimulate engagement.
Occupational Challenges
Community mobility and IADLs were occupational challenges most discussed by the patients and clinicians. Only 2 patients reported difficulties with ADLs, primarily getting into and out of the tub for bathing. Clinicians tended to talk about ADLs in the context of continuity of care (i.e., when patients were discharging from the hospital or when determining whether home health care was warranted). When staff members became aware of difficulty with self-care or safety issues at home, they discussed possible referrals to outside resources (e.g., home health care, occupational therapy, or physical therapy). However, if a referral was not possible (e.g., would not be covered through insurance), they were left questioning what the clinic could do.
Community Mobility.
Community mobility was the occupational challenge most frequently discussed by both patients and clinicians. Financial barriers affecting patients’ ability to get to and from their clinic appointments were previously discussed. However, some patients also faced nonfinancial barriers to community mobility, namely, a lack of knowledge and skills needed to safely and efficiently use the public transportation system. Clinicians identified this knowledge barrier in some patients, but attempts to address the issue focused on identifying alternative transportation methods to get them to the clinic. Community mobility was often voiced as an issue of dependence among patients interviewed. Although the clinic used strategies to assist patients in getting to their medical appointments, patients reported transportation needs extending beyond these appointments.
Other Areas of Occupation.
Occupational challenges beyond ADLs were not discussed by clinicians, but 11 of the 13 patients mentioned at least one IADL, leisure, or social activity that they were unable to participate in or were dependent on others to do so because of their health. When specifically asked about activities that they needed or wanted to do but had difficulty doing, many patients denied any problems or had found ways to adapt to achieve greater independence. For instance, a patient noted, “I can wash dishes in between a lot of breaks” (Patient 9). However, through answers to other questions, occupational needs emerged. Desired activities ranged from exercising and playing sports to cooking, playing with their children, and house cleaning.
Discussion
This study adds to the available literature examining patient needs and clinician challenges in a primary care clinic. Clinician and patient participants indicated needs and challenges associated with medical and mental health management, cognitive–behavioral issues, and limited patient resources. This finding is consistent with the purpose of the CCC because the makeup of the clinic team (e.g., physicians, nurses, psychologists, social worker) reflects their intent to address medical, socioeconomic, and mental health domains. Patients and clinicians mentioned strategies that are in place to address these patient needs, which align with program outcomes in reducing the overall cost of care and reducing emergency room visits (Virginia Commonwealth University, 2013). However, our study shows that cognitive–behavioral challenges, as perceived by the clinicians, and patients’ occupational limitations were not consistently addressed.
The chronic and complex medical needs of the patients, compounded by mental health issues, require a high level of self-management, including medication management, to effectively manage their health. Although the literature on chronic disease self-management tends to treat self-management as skills that can be improved through education (see, e.g., Schulman-Green et al., 2012), it may be better conceived as a complex occupation. In considering self-management as an occupation, the challenges identified by the clinicians can be understood as deficits in performance skills (e.g., poor problem solving) or conflicting performance patterns (e.g., unhealthy habits, failure to meet expectations of patient role).
Our findings also show that patients’ occupational needs go beyond chronic disease self-management and also include community mobility, ADLs, and IADLs. Although clinicians acknowledged community mobility needs, the focus remained on the medical and socioeconomic management of their patients and therefore pertained to how patients’ limited mobility affected their medical management, that is, how to get patients to their scheduled appointment. Clinicians rarely identified their clients’ occupational needs in relation to ADLs and IADLs or how their medical needs were affecting their ability to engage in meaningful activities.
In their interviews with physicians, Loeb et al. (2015) identified four themes of patient complexity that were consistent with our findings: medical complexity, socioeconomic factors exacerbating medical conditions, mental illness exacerbating medical conditions, and patient behaviors and traits. Shippee et al. (2012) further theorized that when a patient’s workload (which includes all the tasks and responsibilities that he or she has each day) exceeds his or her capacity, it leads to the behaviors that result in physicians labeling the patient as “complex” (e.g., not adhering to the treatment plan). It is exactly within that “workload” that occupational therapy practitioners are trained to intervene. Thus, occupational therapy practitioners can support the primary care team by focusing on enabling occupation, including self-management activities, to meet the challenges currently faced by clinicians and patients.
The medical professionals on the primary care team were trained to intervene on client factors such as body functions and structures. The inclusion of social work, psychology, and case management allowed the team to address many of the socioeconomic contextual needs of the patients, but it is occupational therapy practitioners who have specialized training in identifying and addressing performance skills and patterns as they relate to occupation. Occupational therapy practitioners’ understanding of the link between occupation and health and how illness and injury can disrupt occupational performance can assist patients in developing new habits, roles, and routines to support their health and assist with participation in occupational activities. In fact, there is a strong evidence base to support the use of occupational therapy in helping patients to establish new roles and routines to address unhealthy habits (Arbesman & Moseley, 2010).
Our findings also suggest that occupational therapy may be useful beyond direct patient care to include consulting for and educating the team itself in addressing many of the challenges they face. For instance, occupational therapy practitioners could develop protocols for using common technologies (such as cell phone calendars and applications) that all staff could use to help patients track and remember appointments or medications, or they could advise on modifying educational materials with the most appropriate font size and colors for the benefit of for instance, patients with low vision. Moreover, practitioners can assist the team in managing complex patients when continuity of care is essential. As patients transition from the hospital to home care and back to the clinic, practitioners can provide follow-up care to maintain occupational performance gains reached in other settings. Having an occupational therapy practitioner on the primary care team would provide a way to address ADL issues that the team is aware of but does not have the resources to address.
Although there has been a call for occupational therapy to be in primary care, a major challenge to integration has been a lack of understanding of the profession’s role (Donnelly et al., 2013). However, research has suggested that when primary care providers understand how occupational therapy can contribute to primary care, they are receptive to including them on a primary care team (Dahl-Popolizio, Muir, et al., 2017). This study provides important evidence that not only are there occupational needs among patients at a primary care clinic but that occupational therapy practitioners have a unique perspective and focus that would complement the primary care team. Team-based primary care is a promising model, and the CCC is one example of its success; however, challenges still exist. Integrating occupational therapy into primary care teams (both as a direct patient provider and as a resource for the team for adapting current medical and psychosocial interventions to the specific needs of the patients) has the potential to improve patient outcomes even more through improving occupational performance.
Limitations and Future Directions
Our study provided an in-depth look at a team-based urban CCC focusing on a low-income population with multiple chronic medical conditions. However, because we used a single case study and a small sample, our findings cannot be generalized to all primary care clinics or settings. Additional research into the occupational needs of primary care patients in more standard clinical settings serving the general population is needed. Nevertheless, this study provides important insights into a possible role for occupational therapy that warrants further investigation as the profession pushes toward greater inclusion in primary care.
As occupational therapy practitioners enter the primary care workforce, it will also be important to study the process of integration and how clinical roles are determined. Evaluating and comparing practitioners who have effectively integrated into primary care will allow for the identification of best practices that can facilitate the continued growth of occupational therapy in this emerging practice area.
Last, this study was a first step in documenting the need for occupational therapy in a primary care setting. Although current research suggests the value-added benefit of including an occupational therapy practitioner on primary care teams (Dahl-Popolizio, Rogers, et al., 2017), as health insurance and Medicare policies are evolving and bundled payment initiatives are being rolled out, continued research on how occupational therapy fits into these policies will be essential if the profession is to become a standard part of primary care.
Implications for Occupational Therapy Practice
As the U.S. population ages and chronic disease rates grow, the need for occupational therapy in primary care will become even more apparent. Our study supports the need for occupational therapy practitioners in primary care for the following reasons:
Patients have occupational needs that are not being addressed in primary care.
Occupational therapy practitioners have unique skills and training that address unmet patient needs and clinic challenges and that complement services provided in primary care teams, particularly in the area of chronic disease management.
Occupational therapy practitioners must advocate for the profession if they are to be included on primary care teams.
Conclusion
Primary care patients have occupational needs that are not always apparent to medical care providers working within a disease-based model of problem solving. Understanding chronic disease management as an occupation can provide a broader view of patient needs. An occupational therapy practitioner’s ability to assess occupational impairment, analyze activity demands, and address performance skills and patterns can greatly contribute to a primary care team working with complex patients.
Footnotes
Acknowledgments
We thank Lily Damico for her assistance in data collection and coding. Versions of this article were presented at the Virginia Occupational Therapy Association 2016 Annual Conference (Richmond, VA) and the American Occupational Therapy Association 2017 Annual Conference & Expo (Philadelphia).