Abstract
Background
Increasing numbers of people live with chronic conditions. Yet, healthcare systems are often designed based on an acute care model that is not well-aligned with the needs of patients with chronic conditions, resulting in poor patient outcomes and high healthcare costs. To better assist patients living with chronic conditions, there is an urgent need to develop chronic care management models that are effective, scalable, and financially sustainable. The aim of this study was to identify and describe key components of chronic care management practice as a foundation to develop such a program.
Methods
We conducted a qualitative descriptive study interviewing care managers who care for patients living with chronic conditions in community settings. Eleven care managers were recruited from three healthcare organizations in the U.S. Pacific Northwest using a purposive sampling method. Individual interviews were conducted between July and December 2022 using a semi-structured interview guide developed by the researchers. Audio recordings of interviews were transcribed and analyzed using a thematic analysis approach.
Results
Participants said that their practice was driven by the patient needs and tailored to their unique conditions and situations rather than to specific diagnoses. Five key components of chronic care management were: (1) whole person assessment; (2) patient-centered care planning; (3) direct care to assist patients to manage their needs; (4) care coordination; and (5) longitudinal evaluation and monitoring.
Conclusion
Findings from this study provide concrete descriptions of key components of chronic care management practice and contribute to filling gaps in the literature. Integration of these practice components in the design of chronic care management programs is a necessary next step to deliver effective chronic care. We discuss clinical and financial implications of these components, and recommend strategies and future steps to design pragmatic, effective, and financially sustainable chronic care management programs.
Keywords: Chronic care management, Chronic care model, Primary health care, Patient-centered care, Qualitative research
Introduction
Approximately one in three of all adults globally and more than half of the population in the United States (US) live with one or more chronic conditions [1–4]. Yet, many healthcare systems in the US are based on an acute care model that is not well-aligned with the needs of patients with chronic conditions [2, 5, 6]. The misalignment between the healthcare system and patient needs contributes to poor patient outcomes, patient dissatisfaction, clinician burnout, and high healthcare spending [7–9].
The chronic care model (CCM) [10] was developed in 1990s to redesign healthcare delivery for individuals living with chronic conditions [11]. The CCM has been widely adopted in healthcare systems and reportedly improves practice and patient outcomes [12–14]. However, systematic reviews have concluded that most chronic care interventions using CCM have been targeted to a single chronic disease, not to meet the needs of patients with multiple chronic conditions and complex social issues [12]. Identifying the optimal CCM elements that led to the reported improvement was difficult due to the considerable variations in implemented elements between studies and target diseases [12, 13]. Systematic reviews also concluded that there is a need for detailed descriptions of how specific CCM elements were operationalized and contributed to positive outcomes for replication and scaling the interventions in practice [13–15]. For example, self-management support is a commonly implemented CCM element. Yet, detailed descriptions of what type of self-management support (e.g., diabetes education, daily reminder to take blood pressure) and how it was delivered (e.g., providing an educational brochure, nurses coaching how to take medication) to be effective are lacking in the literature [13]. To develop effective chronic care management programs that are replicable and scalable, concrete descriptions of key components of effective chronic care practice are necessary.
Chronic care programs, such as care management, coordination, and care navigators, have been recognized as effective approaches to managing chronic conditions [16–19]. Primary care is a well-suited setting to deploy chronic care management programs [20], and registered nurses (RNs) in primary care teams often play vital roles as care managers or coordinators assisting patients in managing their health. However, clear descriptions of key components of how nurses and clinicians in these programs activate and engage patients in managing their health are limited [21–24]. Furthermore, the impact of these chronic care management programs on patient outcomes, healthcare cost, and financial value of operating these programs has not been well-examined. Without these data or evidence, adequate payment mechanisms for chronic care management programs are not established [23]. The chronic care management programs that have shown effectiveness often struggle to sustain or scale their programs after the project funding period ends. To better assist patients living with chronic conditions, there is an urgent need to develop chronic care management programs that are not only effective but also sustainable with an adequate payment mechanism.
To design chronic care management programs and a payment mechanism to sustain them, generating evidence including concrete and detailed descriptions of key elements of chronic care management interventions that work in real settings is the first step. We aimed to generate evidence by applying the concept of practice-based evidence to identify the key components of chronic care management practice from the experiences of practicing clinicians who manage chronic illnesses [25]. The purposes of this qualitative study were to describe how nurse care managers assist patients with chronic conditions, identify key components of chronic care management practice that make a difference in patient outcomes, and explore how to build these components into the design of a potentially impactful and sustainable chronic care management program.
Methods
We used a qualitative descriptive approach [26, 27] to describe care managers’ practice of assisting patients living with chronic conditions in their home and community. We used a purposeful sampling method [28] through the researchers’ professional network to identify RNs who have more than 2 years of experience caring for patients with chronic conditions in community settings (e.g., nurse care managers, transitional care nurses). Guided by the concept of information power [29] to increase the trustworthiness of the data, we focused our recruitment on nurses whose main daily task is care management. RNs were recruited from three healthcare organizations in the U. S. Pacific Northwest.
Researchers explained the purpose, procedure, and risks of the study and obtained a written informed consent from each participant before the data collection. The researchers (SI, DW, LM) shadowed and observed four participants while they delivered care in the community (approximately 20 h) to take time to “get to know” the participants and develop a contextual understanding of the participants’ practice to increase the validity of interpretation [30]. The researchers took field notes during shadowing sessions to record general impressions, context of nurses’ practice, and potential lines of inquiry for subsequent interviews. Following the shadowing, two researchers (SI, LM) with expertise in qualitative research methods conducted in-depth individual video interviews using a semi-structured interview guide developed by the research team. The interview guide included questions about participants’ typical practices, practices they perceived made a difference in patients’ lives, and challenges encountered during patient care. Each participant provided informed consent prior to participation and received $50 in appreciation of their time. Interviews were audio-recorded and transcribed verbatim by a professional transcription service. All observations and interviews were conducted between June and December 2022. This study was reviewed and approved by the Oregon Health & Science University Institutional Review Board (IRB# 00024288) on April 6, 2022.
We analyzed data using thematic analysis [31]. After replacing identifiable information in the transcripts with anonymized codes, three researchers (SI, LM, DA) with a nursing background and advanced training in qualitative data analysis read the transcripts and field notes independently and performed open coding. One researcher (SI) used qualitative analysis software, ATLAS.ti (version 23.4 for Windows) [32], and the other two (LA, DA) performed manual coding without the software. After the first round of coding, the researchers compared, contrasted, and categorized codes based on emerging patterns of participant practice through multiple analytic meetings. Constant comparison, peer reviewing and debriefing among analysts, and intermittent member-checking with participants and other team members (AF, LV, CS, WD, DW) who were not involved in the initial analysis were used to ensure the validity and trustworthiness of final descriptions and whether our interpretation captured the key elements of the participants’ practices [30]. We debriefed and resolved interpretive differences arising during analysis through consensus. After 11 interviews, the research team assessed the depth and richness of the data and determined that we had sufficient informational power [33].
Results
Eleven RN care managers participated in this study. Four RNs were recruited from a rural primary care medical home where they served patients in clinic, home, and community spaces. Three RNs were recruited from a transitional care program affiliated with a large urban medical center where they served patients from hospital discharge until they establish a primary care connection in the community. Four RNs were recruited from a community-based primary care organization where they served patients who needed home-based primary and advanced illness care. Participant demographic information is shown in the Table 1. The average length of interviews was 55 min (range 43–87 min).
Table 1.
Participant demographics (n = 11)
| Gender | Female | 10 |
| Male | 1 | |
| Race | Asian/Pacific Islander | 2 |
| White | 9 | |
| Nursing Education | Associate degree | 2 |
| Bachelor’s degree | 8 | |
| Master’s degree | 2 | |
| Doctor of Nursing Practice | 1 | |
| Age | Mean 45.2 years (range 30–60 years) | |
| Years of experience as a nurse | Mean 16.5 years (range 8–30 years) | |
| Settings and roles | Nurse care manager in a rural primary clinic | 4 |
| Transitional care nurse in an urban academic medical center | 3 | |
| Nurse care manager in a community home care agency | 4 | |
Participants’ practices were driven by the needs of their patients and tailored to the patients’ conditions and situations. Therefore, we first describe the characteristics of the patient population they served to understand the context of their practice.
Characteristics of the patient population and their needs
Participants described their patients as medically complex with multiple comorbidities (e.g., diabetes mellitus, congestive heart failure) and chronic conditions (e.g., vision impairment, joint pain from arthritis) that hinder their ability to manage their own health. Their lives are often unstable due to fluctuating social factors that present additional challenges for patients to manage their health and for participants to assist them. Some patients were experiencing housing instability, had limited or no access to food, no reliable transportation, or had family members in crisis. For those, the priority might be finding a safe place to stay, the next meal, or not being evicted from their home rather than taking medications correctly, eating healthy, or exercising regularly. Participants also described that many of their patients have low health literacy, experience difficulty navigating healthcare systems, have mental health needs with or without diagnosis, and/or have negative past experiences with the healthcare system that contribute to overwhelming anxiety, disengagement, or distrust in the healthcare system. These patients’ characteristics and challenges significantly influenced how participants cared for them.
Descriptions of chronic care management practice
Participants described the goal of their care as assisting patients to manage and maintain their health as best as they could in the community. To meet this goal, their practice included: (1) whole-person assessment; (2) patient-centered care planning; (3) assisting patients to manage their needs, (4) care coordination, and (5) longitudinal evaluation and monitoring. (Fig. 1) These activities were intertwined and modified as the patient’s condition and situation changed. Participants characterized their practice as being driven by patients’ unique situations, needs, goals, and priorities requiring clinical judgment and flexibility.
Fig. 1.
Chronic care management practice by registered nurse care managers
Whole-person assessment
Learning where patients are. The foundation of the participants’ practice was a comprehensive whole-person assessment that went beyond a medical or physical assessment. It included assessment of social, emotional, psychological, and spiritual needs and risk factors, financial concerns, family caregiver concerns or burdens, and whatever else was of importance to the patients.
[In addition to the vital signs and medical conditions, ] we’re discovering their experience and where they are in the world so that we can meet them where they are literally, like geographically, but also how they think about things, how they view the world, how they feel brave or not in their relationship with any resources in their community that can help them access what they need to stay in better health. (ID5)
All participants underscored the benefit of meeting with patients where they live to understand the full situation to manage their health and know patients as a whole person. Participants paid attention to patients’ living situations and environments when they met with them. During shadowing, one participant asked a patient for permission to look in the refrigerator and kitchen cabinets while visiting his home. The patient agreed, and the participant looked what types of food the patient had, discussed where the patient could get the food he needs, and explored whether he had transportation to get to the grocery store. The participant collected a large amount of information during this brief visit including vital signs, diet, transportation, social support, and environmental safety.
Eliciting patient goals and priorities. In addition to a comprehensive assessment of the patients’ conditions and situations, participants elicited patients’ goals and priorities. One participant said, “At our first visit, we always ask what are your goals? What is most important to you? And how can we help you with that? (ID11).” Patients’ goals often differed from what healthcare professionals might assume (e.g., lowering Hemoglobin A1c). Instead, “A lot of times, their goals or priorities would be to continue living in this house (ID11),” or something unexpected such as “Continue taking familiar medications prescribed by her primary care provider, not the new list of 30 meds [prescribed by a hospital doctor] (ID8).” Their priorities might be paying the rent rather than getting medications.
Participants reported that building a trusting relationship was foundational for patients to share their personal goals and priorities. Participants said that some patients who had negative past experiences with healthcare lack trust and are guarded in their interactions and what information to share. Participants talked about being respectful and non-judgmental upon entering patients’ spaces to build trust: “I am their guest, and I am in their home, why shouldn’t I be respectful? (ID10)”; “I ask for permission a lot, I think that’s why I’m able to get that trust (ID5).” In the prior example of getting permission to look in the refrigerator, the participant said that the patient gave permission because the patient had known the participant long time, and they had a trusting relationship. The trusting relationship made it possible to see where the patient was at, what their goals and values are, and facilitate meaningful whole-person assessment. The information participants gained through the whole-person assessment including patients’ goals and priorities provide a basis for patient-centered care planning.
Patient-centered care planning
As participants learned patients’ situations, needs, goals, and priorities, they developed an individualized care plan for each patient. The process of care planning was patient-driven, respecting what was important for the patient.
It’s trying to figure out, where is that patient at [physically, mentally in their life]? What are their goals? Then systematically go through what is or isn’t working. I push for informed decision making…. People can make choices that we know have negative outcomes, and they have every right to do that. But for me, it’s about making sure that they have all the information and know what the consequences of these choices will be. (ID7)
One participant stated, “Our goals are always their [patients’] goals. (ID11)” Participants reported that patient involvement in decision-making and care planning was critical to their immediate and long-term engagement in health management. By helping patients understand their healthcare options, participants facilitated and increased patients’ ability to self-manage their health.
Because patients’ goals and priorities might change over time, participants continuously re-assessed and revised care plans to ensure the care aligns with “what’s important to the patient.” Participants also noted the importance of flexibility, as patient priorities and needs can change from one visit to the next. One participant described that the “Flow of the [follow-up] visit is kind of dictated by the patient…. I might go into a visit with the plan to do this, this, and that. Most of the time, that doesn’t happen, because the patient will have some crisis, and then you’re dealing with that. (ID11)”.
Assisting patients to manage their needs
Participants provided a broad range of direct care including symptom management, medication management, education and coaching, psychosocial support, and skilled nursing care depending on each patient’s needs.
Symptom and medication management. Patients were often referred to participants when they had uncontrolled or exacerbated health conditions or were recovering after hospital discharge. In these situations, participants’ priorities were to manage symptoms (e.g., pain, shortness of breath, edema) by adjusting prescribed medications or applying non-pharmacological interventions such as positioning or ice/heat so that patients could comfortably remain at home and avoid unnecessary re-hospitalization or emergency department (ED) visits. Some patients needed better medication management to stabilize their health and avoid exacerbation (e.g., uncontrolled hemoglobin A1c, high blood pressure). Participants explored barriers through their whole-person assessment and worked with patients to find concrete solutions. If the barrier was lack of transportation to pick up medications, the participant arranged home delivery or found an easier pickup location. If the barrier was patient confusion due to polypharmacy or inability to pay for medications, the participants worked with the patient, prescribers, and pharmacists to reconcile and simplify medications so that patients could take minimally needed medications consistently.
Teaching and coaching. Because the goal was to assist patients in maintaining their health to the best of their ability, educating and enabling patients to manage their health was a critical part of their practice. Participants individualized their teaching for patients in terms of health literacy, readiness, and capacity to learn. Participants said that one-time education is usually not enough for patients to understand their chronic conditions and independently manage them. Participants continuously assessed patients’ understanding and coached them toward self-management over time.
When I asked her (a patient with uncontrolled HbA1c) to show me her glucometer’s electronic memory, she burst into tears and said that she had been lying and writing down false numbers. She did not have any idea what diabetes is, what these medications are…. As I worked with her teaching about DM and how to take medications, things slowly improved. Her endocrinologist took her off insulin as her compliance with oral medications improved. Then her A1c started going up again. I found out she stopped taking meds thinking she was ‘cured.’ I talked with her again about the meds, and she is back on track again…. We educate those who leave the doctor’s office without a clue. (ID1)
Participants taught patients how to navigate healthcare systems such as when to call primary care providers instead of 911 and how to check into a clinic. A participant explained, “A lot of it [calling medical office, asking for prescription refill etc.] seems pretty basic and simple. But for the patients that we serve, those phone calls can be overwhelming and scary.” (ID2) Participants coached patients how to explain symptoms they were experiencing, what questions to ask, and what a clinic scheduler might ask. For patients with histories of frequent emergency department (ED) visits, participants taught patients about “red flag” symptoms and who and when to call for help, thus guiding patients to use healthcare services effectively and avoid unnecessary ED visits.
Providing psychological support and stability. Keeping track of all medical appointments and making needed arrangements (e.g., transportation, phone calls) could be overwhelming, especially when they were facing life challenges such as housing instability, depression, or a family crisis. For patients struggling to manage their day-to-day lives, the participants provided a sense of stability by regularly checking in, offering appointment reminders, and making necessary arrangements on behalf of the patients when needed. Participants described that feeling supported by their nurses and knowing that their nurses would check up on them motivated many patients to stay engaged in health management activities. For patients without close family or friends, contact from these nurses was one form of social support that kept them going. “When [patients] are feeling supported … they want to do (manage their health) well and their health is more stable. (ID8)”.
Skilled nursing care and procedures at home. Participants delivered skilled nursing care or procedures at patients’ home if patients had difficulty accessing healthcare facilities.
I noticed that he [a patient she was home visiting] has some cuts on the tops of his foot because he puts his toes underneath the scooter next to his bed to pull himself up from the bed. When he did that, he scraped off the skin on the top of his toes. He’s a diabetic…. You could see redness around his toes and foot, very warm to the touch. I took a picture and called his doctor, ‘I think he’s got an infection.’ Then the doctor said ‘You’re right. Let’s get him started on an antibiotic’. (ID2)
This participant said the patient had already had one toe amputated, using a wheelchair, and had pain due to cancer. It was difficult for him to come to the clinic. In addition, it would take a couple of weeks to schedule a clinic appointment. Recognizing these difficulties, the participant obtained the antibiotic prescription from the physician, delivered the medication, and provided wound care to the patient at home later that day. The participants’ ability to bring needed care to where patients live in timely manner prevented unnecessary or unwanted hospitalization or ED visit due to the delayed care.
Care coordination
Another major role threaded through their practice was care coordination. Participants coordinated care with healthcare team members and social services to address patients’ health-related needs they identified through whole-person assessment.
Coordinating care in the healthcare system. Patients with multiple chronic conditions often received care from multiple providers and care teams in multiple settings, e.g., primary care providers, specialists/therapists, hospitalists; care coordinators and social workers from hospitals, clinics, or health plans; pharmacists; and medical assistants and schedulers in clinics. Participants communicated with those involved in their patient’s care inside and outside of their organization to minimize gaps and negative patient outcomes. For example, participants collaborated with primary care providers or specialists such as endocrinologists to adjust insulin doses or cardiologists to manage symptoms of congestive heart failure. Participants might call a scheduler in another doctor’s office on behalf of the patient to request a visit time accommodation because the patient did not have reliable transportation.
Participants described coordinating care is more than arranging appointments. It involves patient advocacy communicating patients’ unique situations and needs to care teams, so that prescribed treatments and ordered care meet the patients’ needs and goals. For example, a participant described a patient who takes medications only when his caregiver physically hands them to him. The caregiver comes in only five hours a day and could not be there to give antibiotics four times a day as prescribed when this patient had an infection. The participant advocated for and negotiated with the prescriber and pharmacist to switch to an antibiotic with once daily dosing.
Connecting patients to needed resources. Participants connected patients to the needed resources to manage their health, such as shelters, meal services, food banks, or women’s crisis centers. Participants collaborated with social workers and behavioral specialists as much as possible. Yet, these additional team members were often unavailable, particularly in under-resourced rural communities. In these cases, participants filled in these roles to find and connect patients to resources.
Filling the gaps. Participants said that they were often called in by patients or providers for help and stepped in to fill the gap in the system. One participant (ID5) described a patient with heart failure and diabetes discharged from a hospital to a temporary shelter. “He did not understand his medications. So I helped him to put his medications in the pill box, stored his insulin … and made sure that he had some food until he was able to get to a grocery store.” Although it was not part of the order by the provider, the participant secured food using her clinical judgement because she recognized that the patient would likely be readmitted to the hospital if he did not have food. Participants offered many similar examples of filling in a gap. They said they did it because there was no alternative. If they did not do it, their patients would fall through the cracks and suffer from poor health outcomes and high cost care.
Longitudinal evaluation and monitoring
Participants emphasized the importance of longitudinal evaluation and monitoring in chronic care management. They might decrease the frequency of visits as patients gained self-management knowledge and skills, but they continued checking in “every once in a while” to ensure “there isn’t anything going on” or to “detect any changes early before it becomes a crisis” (ID2). Participants said their patients often live complex lives where their situations could change unexpectedly. One day, a patient might be following the care plan and on track to self-manage their conditions. The next day, their car broke down and they could not pick up medications or come to the clinic. Patients might lose their jobs and their health insurance coverage, be evicted from their home, or have a sick family member move in with them who requires care. Participants said that many patients need assistance or encouragement to adjust to these changes and continue taking care of themselves in volatile situations. When patients demonstrated they could self-manage their conditions and proactively call the nurse or other healthcare provider when they needed help, participants passed the responsibility of monitoring to patients and “graduated” them from services.
Discussion
Participants in this study described that chronic care management practice includes whole-person assessment, individualized patient-centered care planning, direct assistance to manage patient needs, care coordination, and longitudinal relationships and monitoring. Their descriptions are consistent with the Chronic Care Model [34], Patient Priorities Care [35, 36], and other models and evidence in the literature [37, 38]. Additional insights highlighted in this study were the importance of a tailored whole-person-centered approach and a longitudinal relationship. In the following section, we discuss the implications of these new insights for designing pragmatic and sustainable chronic care management programs in community settings.
Person-centered rather than disease-focused
Participants’ practice centered around the person rather than a disease or a specific condition. Although patients might be referred to the participants to manage a specific condition (e.g., diabetes, post-surgery), participants saw patients as a whole beyond the referred condition recognizing the existence of other chronic conditions or social factors, and tailored care to align with the patients’ needs and priorities rather than the specific diagnosis. Existing systematic reviews have noted that there are few Chronic Care Model (CCM) implemented that were disease agnostic and truly patient goal-oriented [12, 15]. Our findings provide new insight about what it would take to assist patients to manage their chronic condition(s) that may be influenced by health-related issues other than the primary diagnosis. Our findings suggest that effective care management programs should assess patients as a whole beyond a single disease and allow care managers to deliver care patients need by using their clinical judgment rather than limiting their care to prescribed single disease focused services (e.g., cancer navigator, heart failure coordinator, diabetes management program) or specific aspect of care (e.g., behavioral health) [36, 38, 39].
Longitudinal relationship for productive patient-clinician interaction
Another critical component of chronic care management practice we found was a longitudinal relationship to maintain continuity of care. Care for chronic conditions is often delivered by multiple personnel, care teams, and healthcare systems [2]. Patients have difficulty building a longitudinal relationship with healthcare providers when providers and teams come in for variable lengths of time and leave as patients’ conditions and needs change [40]. Longitudinal relationship and monitoring practice as described in our study provide a potential explanation of how longitudinal relationships relate to the more productive patient-clinician interactions described in CCM [41, 42]. Participants in this study had a longitudinal relationship with patients throughout their illness trajectory, had knowledge about patients’ conditions, situations, and history, and gained patient trust. The trust that the participants would know their history and situations and be there to help them could encourage patients to call with questions or concerns before these turn into a crisis. To alleviate fragmentation of care and foster productive patient-clinician interactions, chronic care management programs should position clinicians to have a longitudinal relationship and trust with patients [40, 43]. Given the longitudinal nature of primary care, RN care managers based in primary care clinics would be strong candidates to serve as a center of a chronic care management program.
Need for an adequate payment mechanism to sustain the delivery of an effective chronic care program
While the practice described in this study seems to be an exemplary chronic care model, the sustainability and scalability of this practice are uncertain. In the US healthcare system, payment mechanisms and the amount of reimbursement for care management services delivered by RN care managers as described in this study are extremely restricted or non-existent [44–46]. To make a chronic care management program financially sustainable, evidence is needed including concrete descriptions of what productive interactions between nurse/clinician and patient look like that improve chronic care management and are worth payment. This study fills the gap in the literature by providing concrete and detailed descriptions to make chronic care management practice visible, thus quantifiable. Our descriptions could be foundational for designing an effective chronic care management program. The next step towards developing an effective and financially sustainable chronic care management program will be to evaluate the impact of this practice on patient outcomes and its financial value.
Limitations of this study include small sample size with participants from a geographically limited area. However, in-depth interviews with observations and recruiting participants from three different organizations mitigate these limitations and increase the credibility and transferability of the study findings. Another limitation is that the data in this study are only from RN care managers’ perspectives. Data to evaluate the effectiveness of their practice on patient and system outcomes were not collected in this study. We are currently conducting an outcome evaluation of a pilot chronic care management program embodying these key components from patient and healthcare system perspectives.
Conclusions
This study contributes to generating practice-based evidence of key components of effective chronic care management programs. Our findings highlight the importance of a longitudinal relationship and a whole-person-centered approach beyond a medical diagnosis and treatments to manage chronic conditions. Examination of the clinical and financial implications of care management programs that include these components is a necessary next step to build chronic care management models that are effective and sustainable.
Acknowledgements
We would like to thank all the participants in this study. Preliminary findings from this study were presented at the Gerontological Society of America Annual Scientific Meeting in Seattle, Washington, on November 15, 2024, and at the Academy Health Annual Research Meeting Interdisciplinary Research Group on Nursing Issues (IRGNI) Interest Group in Baltimore, Maryland, on June 29, 2024.
Author contributions
SI, LM, and DW are responsible of conceptualization and design of the study. SI and LM conducted data collection. SI, LM, and DA conducted initial analysis, and all others contributed in the peer review debriefing of the preliminary findings. SI and LM drafted the main manuscript text, and all authors reviewed and edited the manuscript. LV prepared the figure. All authors read and approved the final manuscript.
Funding
Funding for this study was provided by the American Nurses Association Reimagining Nursing Initiative. Dr. Izumi was the PI of the funded study.
Data availability
The datasets analyzed during the current study are available from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
A written informed consent was obtained from each participant before observation and interviews. This study was reviewed and approved by the Oregon Health & Science University Institutional Review Board (IRB# 00024288) on April 6, 2022 and adhered to the Declaration of Helsinki.
Consent for publication
Information regarding participants are anonymized, and this manuscript does not contain any individual person’s data.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.Hajat C, Stein E. The global burden of multiple chronic conditions: A narrative review. Prev Med Rep Dec. 2018;12:284–93. 10.1016/j.pmedr.2018.10.008. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Bierman AS, Wang J, O’Malley PG, Moss DK. Transforming care for people with multiple chronic conditions: agency for healthcare research and quality’s research agenda. Health Serv Res. 2021;56(S1):973–9. 10.1111/1475-6773.13863. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Buttorff C, Ruder T, Bauman M. Multiple Chronic Conditions in the United States. RAND Corporation; 2017. Accessed May 15, 2025. https://www.rand.org/pubs/tools/TL221.html
- 4.Krishnappa V, Ludwick R, Sompalle S, Baughman KR. Impact of chronic Conditions, healthcare Utilization, and demographics on advance care planning. Am J Hosp Palliat Care. 2023;40(4):378–86. 10.1177/10499091221132286. [DOI] [PubMed] [Google Scholar]
- 5.Vogeli C, Shields A, Lee T, et al. Multiple chronic conditions: prevalence, health consequences, and implications for quality, care management, and costs. J Gen Intern Med. 2007;22(Suppl 3):391–5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Savitz LA, Bayliss EA. Emerging models of care for individuals with multiple chronic conditions. Health Serv Res. 2021;56(S1):980–9. 10.1111/1475-6773.13774. 10/01 2021. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Chiu YM, Vanasse A, Courteau J, et al. Persistent frequent emergency department users with chronic conditions: A population-based cohort study. PLoS ONE. 2020;15(2):e0229022. 10.1371/journal.pone.0229022. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Holman HR. The relation of the chronic disease epidemic to the health care crisis. ACR Open Rheumatol. 2020;2(3):167–73. 10.1002/acr2.11114. 03/01 2020. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Skinner HG, Coffey R, Jones J, Heslin KC, Moy E. The effects of multiple chronic conditions on hospitalization costs and utilization for ambulatory care sensitive conditions in the united states: a nationally representative cross-sectional study. BMC Health Serv Res Mar 1. 2016;16:77. 10.1186/s12913-016-1304-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Wagner EH, Austin BT, Von Korff M. Organizing care for patients with chronic illness. Milbank Q. 1996;74(4):511–44. [PubMed] [Google Scholar]
- 11.Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. Jama Oct. 2002;9(14):1775–9. 10.1001/jama.288.14.1775. [DOI] [PubMed] [Google Scholar]
- 12.Boehmer KR, Abu Dabrh AM, Gionfriddo MR, Erwin P, Montori VM. Does the chronic care model Meet the emerging needs of people living with multimorbidity? A systematic review and thematic synthesis. PLoS ONE. 2018;13(2):e0190852. 10.1371/journal.pone.0190852. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Davy C, Bleasel J, Liu H, Tchan M, Ponniah S, Brown A. Effectiveness of chronic care models: opportunities for improving healthcare practice and health outcomes: a systematic review. BMC Health Serv Res. 2015/05/10 2015;15(1):194. 10.1186/s12913-015-0854-8 [DOI] [PMC free article] [PubMed]
- 14.Kadu MK, Stolee P. Facilitators and barriers of implementing the chronic care model in primary care: a systematic review. BMC Fam Pract. 2015;16(1):12. 10.1186/s12875-014-0219-0 [DOI] [PMC free article] [PubMed]
- 15.Grudniewicz A, Gray CS, Boeckxstaens P, De Maeseneer J, Mold J. Operationalizing the chronic care model with Goal-Oriented care. Patient Nov. 2023;16(6):569–78. 10.1007/s40271-023-00645-8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Naylor MD, Bowles KH, McCauley KM, et al. High-value transitional care: translation of research into practice. J Eval Clin Pract. 2011. 10.1111/j.1365-2753.2011.01659.x. [DOI] [PubMed] [Google Scholar]
- 17.Hansen LO, Greenwald JL, Budnitz T, et al. Project BOOST: effectiveness of a multihospital effort to reduce rehospitalization. J Hosp Med Aug. 2013;8(8):421–7. 10.1002/jhm.2054. [DOI] [PubMed] [Google Scholar]
- 18.Coleman EA, Parry C, Chalmers S, Min SJ. The care transitions intervention: results of a randomized controlled trial. Arch Intern Med. 2006;166(17):1822–8. [DOI] [PubMed] [Google Scholar]
- 19.Mattke S, Mengistu T, Klautzer L, Sloss EM, Brook RH. Improving care for chronic conditions: current practices and future trends in health plan programs. Rand Health Q Nov. 2015;30(2):3. [PMC free article] [PubMed] [Google Scholar]
- 20.National Academies of Sciences E, and Medicine. Implementing high-quality primary care: Rebuilding the foundation of health care. The National Academies Press. 2021. Accessed May 15, 2025. https://nap.nationalacademies.org/catalog/25983/implementing-high-quality-primary-care-rebuilding-the-foundation-of-health [PubMed]
- 21.Peikes D, Swankoski K, O’Malley A. Independent evaluation of Comprehensive Primary Care Plus. Mathematica; 2023. December 15, 2023. Accessed May 15, 2025. https://www.mathematica.org/publications/independent-evaluation-of-comprehensive-primary-care-plus-cpc-final-report
- 22.Randall S, Crawford T, Currie J, River J, Betihavas V. Impact of community based nurse-led clinics on patient outcomes, patient satisfaction, patient access and cost effectiveness: A systematic review. Int J Nurs Stud Aug. 2017;73:24–33. 10.1016/j.ijnurstu.2017.05.008. [DOI] [PubMed] [Google Scholar]
- 23.Nikpour J, Yakusheva O, Cramer E, Muir KJ, Norful A. To improve outcomes under CMS’s ‘making care primary’, Focus on registered nurses. Health Affairs Forefront. 2023. August 21, 2023. 10.1377/forefront.20230818.601008 Accessed May 15, 2025. https://www.healthaffairs.org/content/forefront/improve-outcomes-under-cms-making-care-primary-focus-registered-nurses
- 24.Izumi S, Barfield P, Basin SB, et al. Care coordination: identifying and connecting the most appropriate care to the patients. Res Nurs Health. 2018;41:49–56. 10.1002/nur.21843. [DOI] [PubMed] [Google Scholar]
- 25.Leeman J, Sandelowski M. Practice-Based evidence and qualitative inquiry. J Nurs Scholarsh. 2012;44(2):171–9. 10.1111/j.1547-5069.2012.01449.x. [DOI] [PubMed] [Google Scholar]
- 26.Sandelowski M. Focus on research methods. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–40. [DOI] [PubMed] [Google Scholar]
- 27.Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. 10.1177/1049732305276687. [DOI] [PubMed] [Google Scholar]
- 28.Patton MQ. Qualitative research and evaluation methods. 4 ed. th ed. SAGE; 2015.
- 29.Malterud K, Siersma VD, Duassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;16(13):1753–60. [DOI] [PubMed] [Google Scholar]
- 30.Morse JM. Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res Sep. 2015;25(9):1212–22. 10.1177/1049732315588501. [DOI] [PubMed] [Google Scholar]
- 31.Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;01(2):77–101. 10.1191/1478088706qp063oa. /01 2006. [Google Scholar]
- 32.ATLAS.ti Windows. Version 23.4. ATLAS.ti Scientific Software Development GmbH,; 2023.
- 33.LaDonna KA, Artino AR Jr., Balmer DF. Beyond the guise of saturation: rigor and qualitative interview data. J Grad Med Educ Oct. 2021;13(5):607–11. 10.4300/jgme-d-21-00752.1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M. Finding common ground: patient-centeredness and evidence-based chronic illness care. J Altern Complement Med. 2005;11(Suppl 1):S7–15. 10.1089/acm.2005.11.s-7. [DOI] [PubMed] [Google Scholar]
- 35.Freytag J, Dindo L, Catic A, et al. Feasibility of clinicians aligning health care with patient priorities in geriatrics ambulatory care. J Am Geriatr Soc Sep. 2020;68(9):2112–6. 10.1111/jgs.16662. [DOI] [PubMed] [Google Scholar]
- 36.Tinetti ME, Naik AD, Dindo L, et al. Association of patient Priorities–Aligned Decision-Making with patient outcomes and ambulatory health care burden among older adults with multiple chronic conditions: A nonrandomized clinical trial. JAMA Intern Med. 2019;179(12):1688–97. 10.1001/jamainternmed.2019.4235. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Boyd C, Smith CD, Masoudi FA, et al. Decision making for older adults with multiple chronic conditions: executive summary for the American geriatrics society guiding principles on the care of older adults with Multimorbidity. J Am Geriatr Soc. 2019;67(4):665–73. 10.1111/jgs.15809 [DOI] [PubMed]
- 38.Ouellet GM, Ouellet JA, Tinetti ME. Challenges in health care for persons with multiple chronic Conditions—Where to go and how to get there? JAMA Netw Open. 2024;7(10):e2439837–2439837. 10.1001/jamanetworkopen.2024.39837. [DOI] [PubMed] [Google Scholar]
- 39.Watson BN, Estenson L, Eden AR, et al. Person-Centered care planning for people living with or at risk for multiple chronic conditions. JAMA Netw Open. 2024;7(10):e2439851–2439851. 10.1001/jamanetworkopen.2024.39851. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Noonan C, Naylor M. Building a longitudinal community supports model. Accessed November 5, 2024, https://www.healthaffairs.org/content/forefront/building-longitudinal-community-supports-model
- 41.Cramm JM, Nieboer AP. A longitudinal study to identify the influence of quality of chronic care delivery on productive interactions between patients and (teams of) healthcare professionals within disease management programmes. BMJ Open. 2014;4(9):e005914–005914. 10.1136/bmjopen-2014-005914. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Vestjens L, Cramm JM, Nieboer AP. Quality of primary care delivery and productive interactions among community-living frail older persons and their general practitioners and practice nurses. BMC Health Serv Res. 2019;19(1):496–496. 10.1186/s12913-019-4255-2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Sefcik JS, Petrovsky D, Streur M, et al. In our corner: A qualitative descriptive study of patient engagement in a Community-Based care coordination program. Clin Nurs Res. 2018;27(3):258–77. 10.1177/1054773816685746. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44.National Academies of Sciences E, and Medicine. Improving primary care valuation processes to inform the physician fee schedule. National Academies Press. 2025. Accessed May 15, 2025. https://nap.nationalacademies.org/download/29069 [PubMed]
- 45.The National Institute on Aging. The National Institute on Aging. Strategic Directions for Research, 2020–2025. https://www.nia.nih.gov/about/aging-strategic-directions-research
- 46.Miller HD. Patient-Centered payment for care of chronic conditions. J Ambul Care Manage Apr-Jun. 2023;01(2):89–96. 10.1097/jac.0000000000000455. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The datasets analyzed during the current study are available from the corresponding author on reasonable request.

