This article presents a single-organization qualitative case description of the perspectives of patients with high-need, high-cost illnesses who participated in care management programs.
Objectives: To describe the experiences of high-need, high-cost (HNHC) patients who have participated in a care management program (CMP).
Study Design: A single-organization case descriptive qualitative design.
Methods: We conducted semistructured interviews with 15 HNHC patients who participated in one academic health system’s CMP. Participants had high calculated risk scores using a system-developed risk scoring tool and participated in at least 2 care management services in the previous year.
Results: Of the 15 participants, the majority were men from ethnic minority groups, and their ages ranged from 33 to 68 years. Participants described the benefits of CMPs in terms of escaping isolation, relieving a burden, and having someone who cares.
Conclusions: Although participants were given the opportunity to discuss specific aspects of clinical care, participants largely discussed the benefit of CMPs through nonclinical interventions, such as having care management staff who cared about the patients’ outcomes. This study may provide support for the importance of balancing emotional and supportive needs of patients with clinical and coordination needs.
Am J Accountable Care. 2022;10(2):9-14. https://doi.org/10.37765/ajac.2022.89165
Approximately one-fifth of health care spending may be attributed to high-need patients even though they make up about 1% of patients.1 Patients with high-need illnesses often have multiple chronic conditions, functional limitations, and significant nonmedical needs that require complex coordination of services among providers, family, and social service agencies.2 More concerning is that many do not have access to resources to manage their chronic disease within the complexity of their day-to-day lives and thus experience acute illness exacerbations.3 As a result, patients with high-need illnesses utilize the emergency department (ED) at 3 times the rate of the total adult population.1 This utilization places a strain on EDs, which are not designed to provide primary care, manage chronic disease, or coordinate social needs.4 In addition to unmet patient needs, high ED use contributes to overuse of organizational resources and ED crowding, leading to slower response times.5 Understanding the health and social factors that contribute to ED use among patients with high-need illnesses is an urgent priority for health care systems6 and a first step toward improving the health outcomes of those with high-need illnesses.
In response to rising costs and complexity, payers are adopting alternative payment models. These models incentivize health systems to develop alternative care models and decrease spending growth among patients with high-need, high-cost (HNHC) illnesses.7 The accountable care organization (ACO) is an alternative payment model that holds clinicians, hospitals, and other providers jointly accountable for health outcomes and costs among their population of patients.8 ACOs have implemented care management programs (CMPs) that are designed to support HNHC patients by offering care coordination, help with scheduling medical visits, arrangement of financial assistance, and education about disease management; the case monitoring should help prevent high-cost utilization of health care.9 However, the outcomes of CMPs vary in terms of how they benefit patients and reduce costs.
Although CMPs have had positive effects on decreasing ED visits and hospitalization rates, especially among HNHC patients,7,9 the contribution of each component of care is not clear. Health systems often implement parts of CMPs without strong evidence to support their effectiveness.10 Furthermore, evidence exists that patients’ awareness of a care manager can result in increased use of CMPs.11 Because patients must be active participants in CMPs, understanding their perspective of these services is essential for creating positive health outcomes. Unfortunately, no studies to our knowledge have investigated patients’ experiences with CMPs. Therefore, the purpose of this study is to describe the experiences of HNHC patients who have participated in a CMP. The patients’ experiences with CMP services, and their perspectives of program effectiveness, are a foundational part of understanding ACO impact on health care and costs. To our knowledge, this is the first study to investigate patients’ experience with CMPs offered through an ACO.
This study explores the experiences and perspectives of patients with HNHC illnesses enrolled in one academic health system’s ACO who receive CMP services. As such, this study is a single-organization case description. A descriptive qualitative design was used to collect and analyze data. Data were collected using semistructured interviews. Participants were identified by CMP staff using established system-developed tools for identification of HNHC patients. Interviews were analyzed following the inductive content analysis.12
The health system from which participants were sampled provides care for more than 1.4 million residents who live in a highly rural area of the mid-Atlantic United States. In 2015, the system formed an integrated ACO, which currently has about 37,000 attributed patients in the Medicare Shared Savings Program. Care for HNHC patients begins with the identification of those with high medical risk according to a system-developed risk scoring system. Depending on the calculated risk score, patients are provided various services; these may include home risk assessments, medication reconciliation, conversations about care goals, linkage to transportation services and other social support services, disease management education, in-home remote monitoring, and/or access to health coaches. A risk score of 5 or greater indicates that the individual is at higher risk for readmission and may need more care coordination. The goals of the care management model at this organization are to prevent ED utilization, assist patients with knowing when to contact their primary care providers, improve patient access and adherence to prescribed medication regimens, and facilitate consistent adherence to scheduled appointments with the care team. A combination of in-home and telephonic visits is used to enhance patient access to the care management team. Services are provided by individuals from multiple disciplines; they include registered nurses, social workers, pharmacy technicians, and community coordinators.
Participants were selected using a purposive sampling strategy. A care management staff member not associated with the research team reviewed the records of patients who participated in CMPs from March 2020 to April 2021, then selected those patients who had a calculated risk score of 5 or greater and had participated in at least 2 care management services that were provided by the system in the previous year. The staff member had no prior relationship with potential participants prior to screening for inclusion. Participants were excluded if they had a cognitive diagnosis documented in the medical record (eg, dementia, cognitive impairment) that prevented them from recall or had physical stamina limitations that prevented participation in at least a 30-minute conversation about their experience. Staff then contacted potential participants to screen for patient willingness to participate in the interview and to receive permission to pass contact information along to the primary researcher (T.H.F.).
Because of COVID-19 research protocols, participant interviews were conducted virtually, by telephone. Verbal consent to participate was obtained prior to beginning the interview. Recruitment and interviews continued until theoretical saturation was achieved. The primary investigator (T.H.F.) used a digital recorder to record each participant interview. A semistructured interview guide was used to elicit participant responses (Table). Recordings were transcribed word for word using a third-party transcription application. Researchers reviewed each transcript for accuracy prior to analysis. NVivo (QSR International) was used for data organization and to assist with the qualitative coding process. Inductive content analysis was used for making sense of the qualitative data.4 Members of the research team individually open-coded each transcript. Open coding included notes and specific concepts related to each line of text. Open codes were reviewed and placed into higher-order categories. Research team members met to review categories prior to further analysis. Analysis began after the first interview so that the research team was aware when data saturation was achieved. Saturation was determined when open coding resulted in repeated notes and labels applied to the data. Categorical disagreements were resolved by reviewing raw transcripts together and coming to consensus on the agreement between patient words and category descriptions. Final descriptive themes were developed collaboratively among researchers as abstraction of categories progressed through further sorting and constant analysis against participant responses. This study received institutional review board approval prior to contacting the first potential participant.
Fifteen HNHC patients participated in this study. The majority were men (73%) from ethnic minority groups (60%). Ages ranged from 33 to 68 years, with a mean age of 59 years. All participants utilized system-based care management services to manage 1 or more chronic conditions. The primary patient-reported diagnoses were kidney disease, hypertension, and diabetes. Risk scores for participants in this study ranged from 6 to 12, with a mean risk score of 7.6. All 15 participants had care management services provided by a registered nurse; in addition, 7 had such services provided by a certified pharmacy technician, 5 by a social worker, and 4 by a community coordinator. All participants identified Medicare as their primary payer. The number of interactions with care coordination services ranged from 6 to 30 interactions, with a mean of 15.3 interactions. Nearly all participants described the benefits of CMPs in terms of escaping isolation, relieving a burden, and having someone who cares.
Most interviewees discussed how participation in CMPs helped them feel as though they were escaping isolation. The importance of having contact with others was evident in the statement “When you’re going through a lot of things, the most important thing is to have someone that you can feel is actually listening” (participant 15). One participant referenced care management staff in relation to the isolation felt from COVID-19. She stated, “I am truly blessed to have them, because with COVID-19, I can’t get out and I have them [care management staff]” (participant 11).
Multiple participants shared that they had no one else to help them with their illness and having care management staff check on them relieved the stress of being alone. One participant stated, “I appreciated her calling and, you know, talking to me and wanting to know how everything was going” (participant 13). When asked what was beneficial about care management services, one patient expressed the relief that care management provided by saying, “I knew somebody was coming to see me.…If I was laying in the bed dead, I knew somebody was coming and knocking on this door, coming to check on me” (participant 2).
Relieving a Burden
More than half the participants discussed the importance of CMPs relieving a burden in their care. The primary burdens that participants had to manage as part of their care were medication procurement and securing transportation to health-related appointments. One participant stated, “They were concerned for my well-being and making sure I’m not stressed about anything. If I needed transportation, they would help provide that” (participant 2).
Care management was also described as relieving a burden by providing a reassuring resource. Patients expressed feeling comforted by having someone regularly available to answer their questions and to check on their health. One participant expressed this by saying, “It makes things easier for me. Like I said, they tell me what to do. They file it. It’s so easy. If you don’t know what’s going on, call them” (participant 4). Most participants stated that their illness would be worse without care management. They responded to the question about how their illness would look different without the services provided with statements such as “I’d just be—I’m going to tell the truth—I’d probably be in a world of hurt” (participant 2).
All participants stated that having someone who cares about them was the most beneficial part of care management. Furthermore, interactions with care management staff provided patients with motivation and encouragement to better manage their health. Care management staff were consistently described as caring and concerned about patients’ health. When asked about their experience with the staff, one patient described how they expressed care by saying, “They [were] concerned. They came and they expressed their concern, and they’d sit and talk with me about my situation and try to steer me in the direction that would help me the most” (participant 1). Another participant stated, “They exude love. It flows out of them, you know, actually caring about what they are doing for you” (participant 15). The benefit of having someone who shows they care was expressed by a participant who said, “Well, it let me know that somebody cared and when somebody cares, it kind of makes you feel good. It makes you want to do more. You know, like, ‘Hey, these people are calling to check on you to see how you are.’ And to me, it made me feel better, showed they actually cared. Knowing someone cared felt good. And I don’t know, like I said, it made me want to do a little more, a little more. It keeps me motivated, kept me motivated” (participant 3).
The purpose of this study was to describe HNHC patient experiences with CMPs. Understanding the impact of CMPs from the patient’s perspective is imperative for positive health care outcomes for this population and for the achievement of health system care goals. Patients in this study discussed involvement in CMPs in the context of escaping isolation, relieving the burden of care, and the caring approach that CMP staff took during the provision of services. Although patients were given the opportunity to discuss the benefits of clinical care, HNHC patients in this study largely discussed the benefit of CMPs primarily in terms of nonclinical interventions—specifically, those that led to improved motivation and engagement in care through better support and having someone who cared about their outcomes. The services provided by care management staff that were nonclinical in nature included listening, talking, and motivating. This finding is similar to previous work in which patients’ awareness of a care manager resulted in greater utilization of the care management service.11 Services provided by care managers also include those with a greater clinical component such as risk assessment, medication reconciliation, disease management, and coordination of resources. However, patients overwhelmingly described the interventions related to interpersonal emotions and social aspects of care to be the most impactful.
Considering the current lack of evidence within the literature to support effects of patient experiences with CMPs offered through an ACO, this study offers 2 significant contributions. First, care management services were provided by those in roles with a primary clinical foundation, including registered nurses, social workers, pharmacy technicians, and community coordinators. However, the patient experience focused on the nonclinical aspects of care. This study provided space for patients to discuss either nonclinical or clinical aspects of care. Although participants overwhelmingly discussed the nonclinical aspects of care, they did not explicitly devalue clinical aspects of care. This may indicate that patients expected the clinical care services, but nonclinical support was unanticipated. This reinforces the need for continued research in this area to create a better understanding of the experiences of patients participating in CMPs. Second, this study was conducted during the COVID-19 pandemic, and patient experiences revealed aspects of the impact of social isolation. Patients expressed that CMP components relieved loneliness brought on by the pandemic. CMPs that support components of nonclinical care—focused on connecting with patients, combating loneliness, and addressing social isolation—can have a positive impact on outcomes.
This study has several implications for clinical and financial management of HNHC patient populations. First, understanding the patient’s perspective on those services that they felt were most impactful informs CMP leaders on resource allocation. Traditional models of care management services rely heavily on clinical resources, including nursing and social work disciplines, to address and coordinate complex care needs.9 The findings of this study may suggest that emotional and supportive needs, including contact with others and feeling loved and cared about, rather than distinct clinical needs or coordination services, were key to patient outcomes. This finding may provide insight for innovative staffing models that reach more patients and yield high-quality care at a potentially lower cost than that of traditional models, which may have heavy clinical resource allocation for a smaller population. This recommendation does not negate the importance of clinically relevant care to patients or the importance of clinical team members as part of the care management team. Rather, we recognize that clinical personnel can be more efficiently utilized on the care management team when a model exists in which lower-cost staff may be available to provide relational and emotionally supportive care to patients. Secondly, the finding of linkage between interactions with care management staff and patient motivation to better manage their health warrants further investigation, as patient engagement is a key driver in health care cost containment.13 This is also important when providing education and training to care management staff on the importance of building trust, developing relationships, and drawing upon emotional intelligence when interacting with patients.
This study presents findings from a single organization. Although limited research has been done in this area, the single-organization case descriptive nature of this study limits its formal external generalizability. The study inclusion criteria were broadly applied to include high-risk patients based on calculated risk score who participated in at least 2 care management services provided by the system. This facilitated the inclusion of a diverse study population across a large geographic area. However, this did not include patients who may have been receiving other care management type services such as home health care or visiting services provided by organizations outside the health system. Patient responses to interview questions may be interpreted in the context of care management but may not be solely reflective of the care management services provided by the system. Also of note, the care management services and patient interviews occurred during the COVID-19 pandemic. Public health restrictions including isolation and social distancing were widely implemented during the pandemic. These restrictions prevented many patients’ normal interactions with health care providers and family and community support. It is not known how these restrictions, or the patients’ experience with COVID-19, may have contributed to reported themes. Future research should focus on the assessment of patient perspectives participating in CMPs outside the context of the pandemic and comparing those findings with those presented here.
No studies have previously explored the experience of HNHC patients’ participation in CMPs and the impact of nonclinical aspects of care management staff support on patient outcomes. Through semistructured interviews, this study was able to explore what HNHC patients perceive as contributors to the success of CMPs. This is critical information for CMPs to have, so they can improve strategies that contribute to positive patient outcomes. Almost hidden in their function, CMPs provide patients with an individual who cared about the outcomes of the patient and improved motivation and reduced the isolation of this population of patients. Intentional efforts on the provision of care are essential for care management leaders during the development of care strategies.
Author Affiliations: College of Nursing, East Carolina University (THF, CF), Greenville, NC; Vidant Health (PC, DT, AH), Greenville, NC.
Source of Funding: East Carolina University Collaborative Nursing Research Day Grant.
Author Disclosures: Dr Cowin is an employee of the health system from which participants were sampled. Dr Thompson manages the departments that provide case management but does not engage with patients. The remaining authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.
Authorship Information: Concept and design (THF, PC, DT); acquisition of data (THF, CF); analysis and interpretation of data (THF, PC, CF, AH); drafting of the manuscript (THF, PC, DT, CF, AH); critical revision of the manuscript for important intellectual content (PC); provision of study materials or patients (PC, DT); obtaining funding (THF); administrative, technical, or logistic support (PC, DT, AH); and supervision (THF).
Send Correspondence to: Thompson H. Forbes III, PhD, RN, College of Nursing, East Carolina University, 2134 Health Sciences Building, Greenville, NC 27858. Email: email@example.com.
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