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The American Journal of Managed Care November 2017
Using the 4 Pillars to Increase Vaccination Among High-Risk Adults: Who Benefits?
Mary Patricia Nowalk, PhD, RD; Krissy K. Moehling, MPH; Song Zhang, MS; Jonathan M. Raviotta, MPH; Richard K. Zimmerman, MD, MPH; and Chyongchiou J. Lin, PhD
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Patients' Perspectives of Care Management: A Qualitative Study
Ann S. O’Malley, MD, MPH; Deborah Peikes, PhD, MPA; Claire Wilson, PhD; Rachel Gaddes, MPH; Victoria Peebles, MSW; Timothy J. Day, MSPH; and Janel Jin, MSPH
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Katherine Hempstead, PhD; Josh Gray, MBA; and Anna Zink, BA
Electronic Reminder's Role in Promoting Human Papillomavirus Vaccine Use
Jaeyong Bae, PhD; Eric W. Ford, PhD, MPH; Shannon Wu, BA; and Timothy Huerta, PhD, MS
Improving Antibiotic Stewardship: A Stepped-Wedge Cluster Randomized Trial
Adam L. Sharp, MD, MS; Yi R. Hu, MS; Ernest Shen, PhD; Richard Chen, MD; Ryan P. Radecki, MD, MS; Michael H. Kanter, MD; and Michael K. Gould, MD, MS
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Joseph A. Ladapo, MD, PhD; and Dave A. Chokshi, MD, MSc
Diabetes Care Improvement in Pharmacist- Versus Nurse-Supported Patient-Centered Medical Homes
Lillian Min, MD, MSHS; Christine T. Cigolle, MD, MS; Steven J. Bernstein, MD, MPH; Kathleen Ward, MPA; Tisha L. Moore, MPH; Jinkyung Ha, PhD; and Caroline S. Blaum, MD, MS
Validation of a Claims-Based Algorithm to Characterize Episodes of Care
Chad Ellimoottil, MD, MS; John D. Syrjamaki, MPH; Benedict Voit, MBA; Vinay Guduguntla, BS; David C. Miller, MD, MPH; and James M. Dupree, MD, MPH

Patients' Perspectives of Care Management: A Qualitative Study

Ann S. O’Malley, MD, MPH; Deborah Peikes, PhD, MPA; Claire Wilson, PhD; Rachel Gaddes, MPH; Victoria Peebles, MSW; Timothy J. Day, MSPH; and Janel Jin, MSPH
Risk-stratified care management is a cornerstone of patient-centered medical home models, but studies on patients’ perspectives of it are scarce. We explored patients’ experiences with care management, what they found useful, and what needs improvement.
ABSTRACT

Objectives:
Risk-stratified care management is a cornerstone of patient-centered medical home models, but studies on patients’ perspectives of care management are scarce. We explored patients’ experiences with care management, what they found useful, and what needs improvement. 

Study Design: Semi-structured qualitative telephone interviews.

Methods: We interviewed 43 high-risk patients or their caregivers who were receiving care management from 11 practices in CMS' Comprehensive Primary Care initiative, provided by nurse care managers (9 practices) or the physician (2 [solo] practices).

Results: Patients’ perceptions of care management were mixed. Patients who had regular contact with, and a desire to work with, their care manager valued the care management services provided. These patients valued care managers who listened to them and explained their conditions and options in lay terms, helped them navigate the healthcare system and community resources, and followed up after hospitalizations. However, one-fifth of the patients in practices that used nurse care managers could not identify their care manager although we: 1) sampled patients who had recent contact with their care manager and 2) defined the care manager’s roles and provided examples of typical care management activities. Patients’ interactions with care managers from health plans and hospitals contributed to confusion. 

Conclusions: Practices can improve patient buy-in for care management through in-person introductions to care managers by their physicians, offering care management to patients who need and are interested in it, broader agreement about terminology and the role of care managers and care plans, and better coordination with care management from insurers and hospitals. 

Am J Manag Care. 2017;23(11):684-689
Takeaway Points

Risk-stratified care management is a cornerstone of patient-centered medical home models, but studies on patients’ perspectives of care management are scarce. We explored patients’ experiences with care management, what they found useful, and what needs improvement. 
  • Patients who had regular contact with, and a desire to work with, their care manager valued the care management services provided. Patients valued having a care manager who listened to them and explained their conditions in lay terms, helped them navigate community resources, and followed up after hospitalizations. 
  • One-fifth of the patients in practices that used nurse care managers could not identify their care manager. 
  • Practices can improve patient buy-in for care management through in-person introductions to care managers by physicians, offering care management to patients who need and are interested in it, broader agreement about terminology and the role of care managers and care plans, and better coordination with care management from insurers and hospitals.
Risk-stratified care management is a cornerstone of the patient-centered medical home (PCMH) model, but studies on patients’ perspectives of care management are scarce. PCMHs are intended to focus on patients’ needs, so knowing patients’ perspectives about care management is critical. To help bridge this gap in the literature, we conducted semi-structured interviews with patients or their caregivers in practices participating in a large initiative to understand their experiences with care management, what they found most useful, and what might be improved.

Care management is a “set of activities designed to assist patients and their support systems in managing medical conditions and related psychosocial problems more effectively.”1 It is also associated with a lower risk of complications.2,3 A common care management model in primary care includes the use of “care managers,” a term we use to refer to the person who works with high-risk patients and primary care teams to develop care plans, improve patients’ understanding and self-management of their chronic conditions, monitor chronic conditions between visits, and follow up after transitions in care, such as a discharge from a hospital or an emergency department (ED).1,4  Care managers are considered most effective when they work within a primary care practice, meet patients in person, communicate with them by phone between visits, and coordinate with their primary care physician.1,5 Care management can be provided by a care manager embedded within or external to the practice who works closely with the primary care clinician or by a primary care physician with the help of a medical assistant or other staff.1,4

Through the Comprehensive Primary Care (CPC) initiative, CMS collaborated with 39 private and public payers to test care management, alongside other interventions, in nearly 500 primary care practices in 7 US regions. CPC ran from October 2012 through December 2016. Designed to reduce costs and improve primary care delivery, patients’ and providers’ experiences, and health outcomes, CPC gave participating practices non–visit-based payments and the opportunity to share in cost savings, regular feedback on patient outcomes, and a learning network.6 The CPC initiative emphasized patient and caregiver engagement, and CMS held a number of technical advisory panels, which included patients, when they designed the initiative.

CPC required participating practices to risk-stratify patients and provide care management to those at highest risk by: 1) linking each active patient to a provider or care team, 2) defining each patient’s level of need, and 3) managing each high-risk patient’s care according to their needs.

Most CPC practices used embedded nurse care managers, either newly hired or trained “on the job” to provide care management. A few of these had been certified in case management.7-9 In some small physician-owned practices, the primary care physician performed the care management tasks, often with the help of a medical assistant.

Most literature on care management focuses on provider or delivery system, rather than patient, perspectives.1 Two studies from Canada and the United Kingdom examined the patient’s perspective of care management models and found that patients receiving care management perceived their care, psychosocial support, access to services, advocacy, and communication with providers favorably.10-12 These studies called for more studies on patient perspectives on care management. 

METHODS

Recruitment 

As part of the CPC evaluation, we collected qualitative data annually from 21 CPC “deep-dive” practices (3 from each of the 7 CPC regions) about CPC implementation. We selected these deep-dive practices because they had characteristics similar to those of all CPC practices. Building on our relationships with these practices, we asked 11 of them ranging in size, ownership, and location to recruit high-risk patients for semi-structured interviews about care management. We interviewed patients in the middle of the third year of the 4-year initiative.

We gave a script and responses to frequently asked questions to care managers at the 11 practices who described the study to patients (or their caregivers) with whom they had contact over the next 2 weeks and asked if each would participate in 1 telephone interview. Each care manager compiled a list of patients who consented, their contact information, and whether they were discharged from a hospital in the previous month. The combined lists included 159 patients, all of whom were mailed an advance letter. 

We explained to patients that their participation in the study was voluntary and would not affect their insurance coverage or healthcare and that comments would not be shared with their primary care practice. Patients were offered $25 to complete the interview.

Because our research examined a public benefit, the New England Institutional Review Board (NEIRB# 13-174) exempted the study. Respondents provided verbal consent first to their care manager to be included on the list of volunteers and again to the interviewer to participate in this 1-time interview.

Interviews

We conducted semi-structured telephone interviews from March to May 2015, starting with the first patient on each list and continuing until we completed 7 interviews per CPC region. Of the 159 patients, we attempted calls to the 138 for whom we had working phone numbers. These patients were distributed across regions. Forty-two patients did not answer the phone or return voicemails, 38 refused to be interviewed, and 15 had hearing, health, or time issues that made it difficult to interview them. There were no differences in mean age or disability status between responders and nonresponders, but responders were slightly more likely to be female (74% vs 63%). We completed 43 interviews (18 with patients who had recently been hospitalized). After completing 40 interviews, we received no new information, and all responses fit into the existing codes. The respondents were fairly evenly distributed across regions and practices per region (Table 1).

A service transcribed the interviews verbatim.

Interview Topics

We based the interview protocol (see eAppendix [eAppendices available at ajmc.com]) on Bodenheimer’s conceptual framework on care management,1 the Chronic Care Model,13,14 and CPC requirements.6 We pilot tested and refined the protocol with CPC patients receiving care management.

We first asked about the patients’ general experience with their primary care practice to see if patients in practices with nurse care managers mentioned the care manager without prompting. We then asked about these topics: 1) care management—how the practice introduced patients to its care manager, frequency of communication with the care manager, and kinds of support the care manager provided; 2) care planning and patient engagement—patients’ understanding of and level of involvement in developing a care plan; the practices’ understanding and incorporation of patients’ needs, values, and goals for care into the plan; 3) care coordination—the practice’s referral procedures for specialists, how the physician or care manager communicated with specialists, and whether the physician and/or care manager discussed the specialist’s recommendations with the patient; and 4) care transitions—patients discharged from a hospital or an ED in the previous month were asked about their practices’ follow-up.

Coding and Analysis

Using the aforementioned conceptual framework, we developed a coding rubric and dictionary15 to capture key themes.1,6,13,14,16 During the first weeks of data collection, the interviewers met weekly to discuss emerging themes, refine the coding rubric, and assess interrater agreement on a set of transcripts coded simultaneously. Two interviewers coded the transcripts using the qualitative analysis software NVivo10 (QSR International; Burlington, Massachusetts). We built frequent debriefings and peer review by the research team into the coding and analysis to maximize the reliability of coding and to reduce researcher bias.17,18 

RESULTS

Practice and Patient Characteristics

Based on data they reported to CMS, 6 of the 11 practices we studied had a full-time nurse care manager and 3 had a part-time nurse care manager. In the 2 solo practices, the physician, helped by a medical assistant or other staff, was the sole care manager. This distribution of staff was, according to data that practices report to CMS annually, similar to the 2015 distribution of care manager staffing across all CPC practices.

Thirty-seven of the 43 respondents who completed interviews were patients and 6 were caregivers who responded for patients who lacked the cognitive or physical ability to respond for themselves (Table 1). Thirty-one of the 43 were in system-owned practices, 28 were 65 years or older, and 15 had disabilities. Eighteen patients were discharged from a hospital in the previous month. 

About half the patients were with the same practice for 10 or more years (ranging from 6 months to 32 years). More than half reported visiting their practices 2 to 6 times per year; 10 reported visiting at least monthly.

Patients’ Perceptions of the Care Team 

When asked about the composition of their primary care team, patients typically identified their physician and the nurse or medical assistant with whom the physician worked most closely during their routine, comprehensive, and acute care visits. All interviewees reported that their lead clinician was a physician. Most patients who said that they had a care manager felt that the care manager was an important part of their primary care team. 

In many of the practices that had a nurse care manager, the primary care physician or another person in the office introduced the patient to the care manager during an office visit. Echoing the experience of others, a patient said, “She came in [during my visit with my physician] and introduced herself and told me if I had any problems I should call her...She gave me her card...[and] then she would call every couple days and make sure that my blood pressure’s down, and she coordinated with [my physician].” A few patients first met their care manager after a hospitalization, through a phone call from the care manager or during a visit by the care manager in the hospital. 

One-fifth of patients were not familiar with the concept of a care manager and had trouble identifying who played this role although we intentionally sampled patients who had recent contact with their care manager and interviewers defined a care manager’s role for the patients, including examples of what that person typically does. (This proportion does not include the patients in the 2 solo practices whose physicians performed care management tasks.)  

 
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