Dig Dis Sci DOI 10.1007/s10620-015-3592-1
ORIGINAL ARTICLE
Primary Care Providers Report Challenges to Cirrhosis Management and Specialty Care Coordination Lauren A. Beste • Bonnie K. Harp • Rebecca K. Blais • Ginger A. Evans Susan L. Zickmund
•
Received: 23 September 2014 / Accepted: 17 February 2015 Springer Science+Business Media New York (Outside the USA) 2015
Abstract Background Two-thirds of patients with cirrhosis do not receive guideline-concordant liver care. Cirrhosis patients are less likely to receive recommended care when followed exclusively by primary care providers (PCPs), as opposed to specialty co-management. Little is known about how to optimize cirrhosis care delivered by PCPs. Aims We conducted a qualitative analysis to explore PCPs’ attitudes and self-reported roles in caring for patients with cirrhosis.
L. A. Beste (&) G. A. Evans Primary Care Service, VA Puget Sound Health Care System, 1660 S. Columbian Way, Seattle, WA 98108, USA e-mail: [email protected] L. A. Beste B. K. Harp Health Services Research and Development, VA Puget Sound Health Care System, Seattle, WA, USA L. A. Beste G. A. Evans Division of General Internal Medicine, University of Washington, Seattle, WA, USA R. K. Blais Mental Health Service, VA Puget Sound Health Care System, Seattle, WA, USA R. K. Blais Department of Psychology, Utah State University, Logan, UT, USA
Methods We recruited PCPs from seven Veterans Affairs facilities in the Pacific Northwest via in-service trainings and direct email from March to October 2012 (n = 24). Trained staff administered structured telephone interviews covering: (1) general attitudes; (2) roles and practices; and (3) barriers and facilitators to cirrhosis management. Two trained, independent coders reviewed each interview transcript and thematically coded responses. Results Three overarching themes emerged in PCPs’ perceptions of cirrhosis patients: the often overwhelming complexity of comorbid medical, psychiatric, and substance issues; the importance of patient self-management; and challenges surrounding specialty care involvement and co-management of cirrhosis. While PCPs felt they brought important skills to bear, such as empathy and care coordination, they strongly preferred to defer major cirrhosis management decisions to specialists. The most commonly reported barriers to care included patient behaviors, access issues, and conflicts with specialists. Conclusions PCPs perceive Veterans with cirrhosis as having significant medical and psychosocial challenges. PCPs tend not to see their role as directing cirrhosis-related management decisions. Educational efforts directed at PCPs must foster PCP empowerment and improve comfort with managing cirrhosis. Keywords Primary care health Specialty care Chronic liver disease Attitudes
S. L. Zickmund Center for Health Equity Research and Promotion, VA Pittsburgh Health Care System, Pittsburgh, PA, USA
Introduction
S. L. Zickmund Departments of Medicine and Clinical and Translational Science, University of Pittsburgh, Pittsburgh, PA, USA
Cirrhosis is the final common endpoint of chronic liver disease and is the 12th leading cause of death in the USA [1]. Alcoholic liver disease and viral hepatitis—particularly
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hepatitis C virus (HCV)—cause most cases of cirrhosis in the USA and in the Department of Veterans Affairs (VA) [2, 3]. Cirrhosis incidence is expected to rise dramatically in the coming decade as the HCV-infected cohort continues to age [4]. Given an anticipated shortage in the hepatology workforce [5], care for patients with cirrhosis will likely fall increasingly to primary care providers (PCPs). Therefore, strategies to improve quality of care for cirrhosis must target PCPs. Recommended care for patients with cirrhosis ranges from vaccination against hepatitis A and B, to more complex interventions including substance abuse treatment and surveillance for hepatocellular carcinoma and gastroesophageal varices [6]. Appropriate management can decrease morbidity and mortality from liver disease complications, but two-thirds of cirrhosis patients do not receive all recommended care [7]. Furthermore, despite evidence that PCPs are capable of providing high-quality care for other complex chronic diseases, [8] lack of specialist involvement in cirrhosis is associated with lower use of guideline-concordant outpatient cirrhosis care such as hepatocellular carcinoma surveillance and ascites management [9]. Little is known about how to optimize cirrhosis care delivered by PCPs. Possible explanations for shortfalls in the current state of care include lack of access to specialist support, poor communication between PCPs and specialist support, gaps in PCPs’ knowledge, and patient-related factors. We hypothesized that PCPs’ beliefs about cirrhosis patients in general and their own roles in managing chronic liver disease influence the nature of their patient interactions. The VA is the largest integrated healthcare delivery system in the USA and employs over 5000 PCPs [10]. We interviewed 24 experienced VA-based PCPs to gain a better understanding of generalists’ attitudes and perceptions toward patients with cirrhosis.
Materials and Methods Participants We recruited a purposive sample of PCPs from seven Veterans Affairs (VA) facilities in the Pacific Northwest during in-service programs and by direct email from March to October 2012. PCPs were drawn from diverse practice settings including both community-based and academic facilities, and from both rural and urban locales. The sites included a tertiary care facility (Seattle, WA), several lower-complexity regional facilities (Spokane and Walla Walla, WA; Boise, ID; and White City, OR), and affiliated community-based outpatient clinics. As the primary purpose of this endeavor was quality improvement, as
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determined by our VA Program Office, our local institutional review board was notified of the project but did not require a formal review. Interviews The structured qualitative interview consisted of 13 questions (‘‘Appendix’’). We selected interview questions based on the conceptual framework of the chronic care model, a six-element model for the primary care medical home [11]. The chronic care model underpins much of the patientcentered medical home movement, and we felt it would address multiple aspects of PCP experiences in caring for cirrhosis patients. The interview questions reflect several components of this model and addressed PCPs’ general attitudes and beliefs about cirrhosis, beliefs about their roles in cirrhosis care, barriers to management, and suggestions for ways to enhance management. The interview was piloted by three PCPs outside of the study sample to refine wording and clarity before full implementation. Interview Procedure Trained study staff engaged in private, structured telephone interviews with PCPs. We also collected data on participants’ demographic characteristics (age, sex, race), professional background (degree, number of years in practice, US or foreign medical training), and practice environment (medical center, community-based outpatient clinic, or rehabilitation facility). Interviews were transcribed verbatim from digital audiotapes and then de-identified for analysis. Interview texts were organized into sections based on the individual questions being asked. Coding We determined analytic themes using an ‘‘Editing analysis style’’ developed by Crabtree and Miller for qualitative analysis within the context of the healthcare environment, to systematically identify meaningful segments of text [12]. The PI (L.A.B.) generated a preliminary codebook by systematically reviewing the interviews and by listing topics as they emerged from the text using an open, iterative process. The codebook was further refined through review of emerging topics and discussion with other members of the study team, including a qualitative expert (S.L.Z). Two trained, independent coders reviewed each interview transcript and applied the final codebook aided by the qualitative software program, Atlas.ti 7 (Scolaris, Berlin, Germany). The transcripts were coded independently, and discrepancies were adjudicated via discussion between the two coders. When no consensus could be reached,
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differences were discussed with the PI in order to arbitrate and render a final decision. Inter-coder reliability was assessed using Cohen’s kappa (overall k = 0.93, withincode reliability [0.84–1.0]). The total mean k value demonstrates what Landis and Koch define as near-perfect inter-coder agreement [13]. The final adjudicated codes were used for the analysis. For the quantitative demographic data, we calculated means and percentages for participant demographics. The focus of our analysis involved identifying provider attitudes toward cirrhosis patients and their perceptions of PCPs’ roles in providing care. We classified attitudes as text segments that revealed personal feelings or opinions about cirrhosis patients; and roles as segments describing activities within the PCP’s professional purview related to cirrhosis. Particular attention was paid to discussion of the boundaries of care between generalists and specialists, and facilitators or barriers to providing care to cirrhosis patients.
remainder saw fewer or were unsure. Nearly one-third (30 %) practiced in federally designated rural areas. Characteristics of VA patients with cirrhosis in the northwest region, as of 2011, were obtained from prior work and are described in Table 2 [3]. Major Themes Three overarching themes emerged in PCPs’ perceptions of cirrhosis patients: the overwhelming complexity of their comorbid medical, psychiatric, and substance issues; the importance of patient self-management; and challenges surrounding specialty care involvement and co-management of cirrhosis. While PCPs felt they brought important additional skills to bear, such as empathy and care coordination, they strongly preferred to defer major cirrhosis management decisions to specialists. The most commonly reported barriers to care included patient-related factors, access issues, and conflicts with specialists. PCP Perceptions of Cirrhosis Patients
Results Sample Characteristics Twenty-four PCPs participated in the interviews, including 13 nurse practitioners, six physicians, one physician assistant, and four unspecified primary care providers. Participant sites included three medical centers and four community-based outpatient clinics in Washington, Oregon, Idaho, and Alaska. Characteristics of the PCP sample are presented in Table 1. The majority (79 %) self-reported seeing at least one cirrhosis patient per month, while the
PCPs almost universally described cirrhosis patients as medically and psychosocially complex. When asked what came to mind when they thought about cirrhosis, PCPs frequently described both medical and psychosocial features in tandem. ‘‘A lot of times, people who have cirrhosis are people with drug abuse, alcohol abuse…and so there’s a layer of social issues with these people from the get-go.
Table 2 Characteristics of VA patients with cirrhosis in the Pacific Northwest Region (n = 2088) (2011) [3] Table 1 Primary care provider characteristics (n = 24) Age [mean (SD)] (years) Female (%)
51.7 (5.2) 65 %
Professional designation (n)
Age [mean (SD)]
60.7 (8.0 %)
Male
96.7
Race White
77.3
Physician
6
Black
4.16
Nurse practitioner
13
Hispanic
2.77
Physician assistant
1
Other
15.1
Other/missing
4
Unknown
0.62
English speaking
100 %
Practice location (n)
Cirrhosis etiology Viral hepatitis
770 (26.7)
Community-based outpatient clinic
8
Alcohol
684 (23.7)
Hospital or medical center
13
Both
972 (33.7)
Other
458 (15.9)
Domiciliary or rehabilitation center
3
Federally designated rural area (%)
30 %
Decompensated cirrhosis
Years in practice [mean (SD)]
19.1 (8.9)
Seen by GI/hepatology in past year
35.8
International medical graduate (%)
12.5 %
56.8
Academic affiliation (%)
20.8 %
Primary care in medical center (as opposed to community-based outpatient clinic)
19.7
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There’s not always a drug-induced type of situation and then that’s different. But by and large there is that social component of self-destructive behavior.’’ ‘‘Many of my cirrhosis patients have very significant mental health issues…and so I would say that those make it harder to treat [their cirrhosis].’’ PCPs displayed great empathy to the patients’ experience of illness. They often described themselves as ‘‘translators’’ of medical information for their patients and specifically highlighted the attention they paid to helping patients understand the condition of cirrhosis. ‘‘I think about, first of all, a stigma that they feel…because a lot of providers and a lot of people in society, I think, look at cirrhosis as something that people bring on themselves. I think it’s similar to the way people look at lung cancer although cirrhosis is much more obvious.’’ ‘‘Mainly I think more about quality of life and getting toward what are they gonna do, and [explaining] end stage liver disease and options available to them. [How] each day goes, you know, and how do you get quality out of it…’’ Perceived Responsibilities of Specialists Versus Generalists in Cirrhosis Care PCPs were divided about their roles in caring for cirrhosis patients. However, the majority felt that cirrhosis management was the purview of specialists as opposed to generalists. Many PCPs commented on feeling overwhelmed by cirrhosis patients or feeling like they lacked the skills to manage them. ‘‘[I feel] a little anxiety because I don’t feel confident in caring for them.’’ ‘‘Well, without the training background, we [PCPs] just keep an eye on their liver function and make sure that they are getting their annual ultrasound screen, but other than that you know we usually rely on Hepatology.’’ Reliance on specialists was a common sentiment, with a third of interviewees reporting that their major role was as a gatekeeper to specialty liver services. ‘‘I usually depend on the recommendations of the GI specialist. If someone has a new diagnosis of cirrhosis of course I’ll be sending [the patient] to them [the specialist]. I’ll look at what the recommendations are and that’s how generally I’ll follow it.’’ ‘‘In hepatitis C I feel what I do is look at the enzymes, look at the hepatitis C viral load, and refer as fast as we can and get them to the [Hepatology] clinic…’’
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Only a handful of providers (n = 5) felt confident in their ability to manage cirrhosis. Of these, three were physicians and four were based at a medical center as opposed to a community-based clinic. ‘‘I think primary care providers probably should do most of the management of cirrhosis short of liver transplantation. The primary care providers would order the screening tests, the primary care providers would offer or coordinate dietary and lifestyle change advice, and primary care providers would be the ones to decide when to refer to an appropriate subspecialist for interventional therapy…’’ ‘‘It’s up to me to make sure they have their regular screening, such as the ultrasound every 6 months to rule out hepatocellular carcinoma. And to just care for their general health…’’ In terms of defining their role responsibilities versus specialists, PCPs often reported confusion negotiating who was responsible for various aspects of care. Much of this difficulty surrounded the perception that specialists tended to ‘‘delegate’’ responsibility for onerous tasks to PCPs, or to shunt the burden of ensuring continuity onto the PCPs’ shoulders. ‘‘I think the challenge I face a lot of times would be who’s responsible, the specialist or the provider. I see a lot of times where the specialist will say, you know, ‘Come back in 6 months’, and yet the coordination isn’t there…’’ ‘‘So I saw a chart note today. One of my patients was seen at the Hepatology clinic. The note says that he’s still drinking six beers a day, but he needs to follow up with his PCP to discuss alcohol cessation. Really? And I’m like, you know, what are you [the specialist] there for? Are you just there to prescribe medicine? … She [the specialist] will say like ‘‘oh, go see your PCP about drinking and get her to get you to quit.’’ Why can’t this specialist refer a patient for alcohol treatment? You [the specialist] care for that person and you [should] show that you care for that person. And if they [the patients] need to be talked to about why it’s important not to drink, well then that’s what you do that day, in my mind. Sometimes I wonder what is my role.’’ Without clear role responsibilities in cirrhosis, it was common for PCPs to report resentment toward specialists. Perceived Roles of PCPs PCPs considered their contributions important, but fundamentally different from the role of managing or directing cirrhosis-related care. Most (17 of 24) did not feel that
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diagnosing cirrhosis was inherently more difficult than other chronic diseases such as diabetes or chronic obstructive pulmonary disease. The PCPs’ most commonly reported role in cirrhosis was to monitor patients for medical complications or new symptoms. ‘‘[My role is] monitoring labs, monitoring symptoms, monitoring weight for if they have ascites.’’ PCPs often saw care coordination and advocacy as a major part of their role. ‘‘Most of my patients are followed in the Hepatology clinic…so [my role is] just to make sure that they’re following up as expected and not falling through the cracks.’’ ‘‘[My role is] to help communicate with the patient that you’re their advocate and to help them with comfort, and getting treatment if it’s possible.’’ PCPs placed a high value on educating patients and setting expectations about the typical natural history of cirrhosis. ‘‘[My role is] trying to educate the patient as to what are likely expectations…do they really understand that this could be the beginning of a poor prognosis.’’ PCPs reported needing to be flexible in adapting themselves to patients’ unique situations. ‘‘My role has taken on different things depending on the patient.’’ ‘‘I take care of whatever the patient needs from me. I don’t get to choose what illness the patient may have.’’ Lastly, many providers described their role in a preventive light, such as encouraging healthy behaviors and limiting further liver damage. ‘‘For some of them [my role is] trying to help them not drink or do lifestyle things…to help optimize their personal health.’’ ‘‘First of all there’s the primary care aspect of it—I need to be doing some preventative medicine.’’ Perceptions About Patients’ Roles in Self-Management Providers universally believed that cirrhosis patients play an important role in self-management. Some interviewees reported a collaborative relationship where both PCP and patient need to work together to bring about changes. ‘‘[The patients] are part of the team. With a diagnosis of cirrhosis their role is to make it to their appointments, to ask questions as they come up, and to really play their role in preventing it from getting worse. So basically working hand-in-hand with the provider.’’
‘‘The patient is the one who will define how much we’re going to treat and how little we’re going to treat; how much he or she wants to participate in therapy and; how much he or she is going to let us do. There is no therapy that we can offer for cirrhosis that doesn’t require our patients’ active collaboration on a daily basis. The patient really is the one who will define whether cirrhosis is treated or not.’’ Another group of PCPs thought that the patient was the main motivating force and that treatment wouldn’t succeed if the patient didn’t want to make changes. ‘‘I think they need to take an active role, otherwise the management by the primary care provider is not really going to be helpful.’’ ‘‘I think they [the patients] have the primary role. They need to buy into treatment and try to keep themselves as healthy as they can. They’re gonna make the final decision.’’ PCPs generally agreed that patients make choices about whether to follow the recommendations of their healthcare team. Although PCPs desired to support their patients, they also believed that the decision to make healthy choices lay with the patients, themselves. ‘‘They gotta want to live more than they want to die.’’ ‘‘Well, like a lot of chronic medical conditions, I think their role is to really just to educate themselves so they understand, ‘Gosh, why do I need this medicine? Cause really why can’t I just have one glass of wine…or one beer? You meant I can’t have any’? I think sometimes it seems like they don’t quite get it.’’ Challenges to Caring for Patients with Cirrhosis PCPs described many challenges to caring for cirrhosis patients. The most commonly reported barriers to care (10 of 24 providers) centered on patient-related factors, such as low patient motivation and adherence, comorbid mental illness, or substance use. ‘‘The challenge from the patient, which applies everywhere—urban or rural, tertiary or primary—is that many patients are reluctant to participate fully in therapy or to make lifestyle changes which would facilitate the therapy. Particularly giving up alcohol but also just coming in for appointments and taking medicines which don’t make them feel good. So I think patient compliance or patient adherence or patient participation, whatever you want to call it, is a big barrier.’’ Some providers openly acknowledged a negative stereotype of cirrhosis patients.
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‘‘There’s a certain demographic of a lot of these guys… That’s a big, big one. Just…are they going to follow through? Usually there’s drug abuse issues or alcohol issues, mental health issues—the kind of things that affect adherence.’’ Another major category of challenge included logistical issues, such as travel concerns and getting patients timely access to medical services. ‘‘Some of the folks in our little area are miles away…so then they have to rely on the provider or the clinic that is near them. And it then would fall on what lab and things are available to them and the comfort level of the provider to titrate medication. So that could be a barrier. And it may be just the ability of the patient to be able to get in in a more frequent manner in an era when panels are growing and time is less available.’’ ‘‘We have a large area we cover. Distance and travel at times is very difficult for a lot of these patients because they live out in areas where they don’t have easy access to healthcare…so they don’t get [healthcare] or they don’t follow up when they should or they can’t afford to follow up. They can’t afford to travel in from a long ways out and so I think that’s a very large part of it.’’
Discussion PCPs perceive cirrhosis patients as extremely complex, with sometimes overwhelming interrelated medical and psychosocial issues. They place a heavy emphasis on patients’ own contributions to self-management, particularly with respect to substance use cessation and adherence to medical recommendations. The majority of PCPs did not believe that cirrhosis is harder to diagnose than other complex chronic conditions such as diabetes or chronic obstructive pulmonary disease, though 21 % reported encountering less than one cirrhosis patient per month. PCPs tended not to see themselves as the drivers of cirrhosisrelated care, instead strongly preferring that specialists take the lead in making major management decisions. They described important and distinct contributions compared to specialists—particularly coordinating care, educating patients about liver disease, and helping them navigate the medical system. PCPs’ tendency to perceive cirrhosis as a ‘‘specialty condition’’ has implications for the future care of patients with advanced liver disease. Liver disease care will likely shift increasingly to primary care due to growth in the prevalence of cirrhosis. Prior studies report higher rates of guideline-concordant care and better outcomes when PCPs
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collaborate with specialists across a range of conditions, including diabetes [14], post-myocardial infarction [15], and post-cancer care [16]. Given appropriate support, PCPs have demonstrated HCV treatment outcomes equivalent to those of liver specialists [17]. Level of PCP involvement inevitably varies depending on local resources, clinical culture, and availability of specialists. Fostering a more active PCP role in management of cirrhosis will require specialty mentorship and respectful multidisciplinary networks, and sufficient clinical time to care for these complex patients. Our analysis suggests that PCPs are open to improving their expertise in managing cirrhosis but require a cultural shift toward increased empowerment and support to do so. Future efforts to engage PCPs in cirrhosis management should capitalize on the important and practical skills they often bring to bear, such as effective communication. Qualitative studies in patients with HCV show a pattern of communication difficulties, with patients twice as likely to report poor communication with specialists versus generalists [18]. Because cirrhosis is a chronic condition, PCPs have the opportunity to establish trusting patient relationships over time, potentially leading to improved patient enablement. PCPs are also well situated to impact the subgroup abusing drugs or alcohol (e.g., through repeated brief alcohol intervention) even among patients who do not opt for formal addiction treatment [19]. Lastly, primary care providers may have access to additional practical resources that specialists lack. For example, VA primary care teams are designed to be multidisciplinary and typically include nursing, social work, pharmacy, and administrative support. The PCPs in our study reported patient-level factors as the most common barriers to care, including individual patient motivation, adherence to medical recommendations, and logistical concerns (e.g., inability to travel to visits). PCPs also repeatedly brought up conflicts with specialists as an issue. Previous studies demonstrate that relationships between PCPs and specialists in other disciplines are often fraught with problems [20–22]. Our interviewees expressed particular resentment when specialists delegated burdensome responsibilities to them, or left it to them to organize specialty-related follow-up. We note that the VA is a single integrated system that exclusively utilizes electronic medical records; we hypothesize that communication difficulties are likely magnified in private sector settings. Earlier work illustrates that PCPs’ priorities for successful collaboration with specialists include developing personal relationships and gaining mutual respect [23]. Though patients may assume that this type of professional collaboration is the norm, a recent study of commercial healthcare claims found that primary care providers rarely
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paired with the same specialist on more than one or two patients, leaving little opportunity for trusting, collegial relationships to develop [24]. Future efforts to foster better primary–specialty teamwork and to clarify roles and responsibilities would help to address these issues in cirrhosis care. One successful example is the New Mexico-based telemedicine program, Extension for Community Healthcare Outcomes, which provides specialty mentorship to develop PCPs’ skills and improve primary care–specialty communication for traditionally specialty-specific conditions. This project resulted in high levels of provider satisfaction as well as clinical outcomes equal to those of specialist [17] and has been implemented across much of the VA system. Although many of the patient-related barriers to cirrhosis care are likely generalizable, our findings should be corroborated outside the VA. The cirrhosis population in the Pacific Northwest is comparable to its non-VA counterpart with respect to disease etiology (predominantly from HCV and alcohol), and age (predominantly middleaged) (Table 2) [2, 3]. Nevertheless, further work is needed to determine additional barriers and facilitators to cirrhosis care outside the VA and the Pacific Northwest Region. Future study is needed to judge the pervasiveness and consequences of providers’ biases toward cirrhosis patients. Although many PCPs expressed compassion toward cirrhosis patients, others expressed more negative attitudes, especially frustration with patients’ perceived lack of insight into the changes necessary to improve their health. Although not unique to cirrhosis, provider biases may potentially affect clinical care and patients’ healthcare experiences. Prior work has shown that patients have correctly noted concerns about PCP’s limited knowledge of HCV, and a significant minority perceives frank stigmatization from their provider [25]. Patients with liver disease may be less likely to seek medical care if they encounter stigma during healthcare interactions [26]. We applaud efforts to offer training to promote behavior change, such as VA’s mandatory motivational interviewing workshops, but believe that continued work in this area is needed if provider biases are to be fully addressed. Strengths of our study include a diverse group of PCPs in terms of training background (physicians, nurse practitioners, physician assistant), practice locations (medical center, community-based outpatient clinic, domiciliary or rehabilitation center) and academic affiliation. Our interviewees were highly experienced PCPs with an average of 19 years in practice, and were generally US-educated. Several important limitations deserve mention. Many of the themes we discovered are likely generalizable outside the VA, but our results should be replicated in a more nationally representative sample. Next, PCPs in our study reported seeing relatively few patients with cirrhosis on a
monthly basis (21 % reported seeing less than one patient with cirrhosis per month). Despite their report that cirrhosis is no harder to diagnose than other complex conditions, we suspect that underdiagnosis of compensated cirrhosis remains common. Our results suggest a need for PCP-focused educational efforts, and improved role clarification between liver specialists and PCPs. Future work is needed to explore PCP biases, including those related to health disparities, the role of shared decision-making in negotiating treatment plans, and the relationship of provider characteristics (e.g., professional background, practice setting, etc.) to engagement with managing cirrhosis.
Conclusion PCPs perceive cirrhosis patients as medically and psychosocially complex. PCPs generally report that diagnosing cirrhosis is no more difficult than other chronic diseases, but tend not to see themselves as active drivers of cirrhosis-related management decisions, instead preferring to defer this role to specialists. Educational efforts directed at PCPs must address their lack of comfort with cirrhosis management and foster a sense of PCP empowerment. Acknowledgments The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs. Portions of this work were presented at The Liver Meeting (November 5, 2013), the annual meeting of the American Association for the Study of Liver Disease. This material is the result of work supported by resources from the VA Puget Sound Health Care System (Seattle, Washington). Funding was provided by the VA National Hepatitis C Resource Centers program, through the Office of HIV, Hepatitis C, and Public Health Pathogens. Conflict of interest
None.
Appendix: Interview Questions We are interested in your story about treating patients with cirrhosis: (1) (2)
How often do you encounter patients with cirrhosis or end-stage liver disease? What comes to mind when you think about cirrhosis patients?
We are interested in your role as a primary care provider: (3) (4) (5)
What do you think are the role(s) of primary care providers in managing patients with cirrhosis? Have you ever diagnosed cirrhosis before? If so, how did you make the diagnosis? How comfortable do you feel with making treatment decisions related to cirrhosis?
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(6)
Do you think cirrhosis is easy or difficult to diagnose compared to other conditions?
Follow-up: What makes you say this? (7)
What do you think is the role of the patient in selfmanagement of cirrhosis?
We are interested in problems that arise in caring for cirrhosis patients: (8)
What factors do you think tend to delay the diagnosis of cirrhosis? (9) What is the biggest challenge you face in caring for cirrhosis patients? (10) What do you think are barriers to managing cirrhosis patients after hospital discharge? We are interested in learning where you get information about cirrhosis: (11)
(12) (13)
Where do you get most of your information about cirrhosis? Is there a source you tend to rely on the most? Do you feel you can reach out for assistance if you have questions about a patient with cirrhosis? Is there anything you would like to add that would help us to understand your experience of diagnosing cirrhosis?
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ORIGINAL ARTICLE
Primary Care Providers Report Challenges to Cirrhosis Management and Specialty Care Coordination Lauren A. Beste • Bonnie K. Harp • Rebecca K. Blais • Ginger A. Evans Susan L. Zickmund
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Received: 23 September 2014 / Accepted: 17 February 2015 Springer Science+Business Media New York (Outside the USA) 2015
Abstract Background Two-thirds of patients with cirrhosis do not receive guideline-concordant liver care. Cirrhosis patients are less likely to receive recommended care when followed exclusively by primary care providers (PCPs), as opposed to specialty co-management. Little is known about how to optimize cirrhosis care delivered by PCPs. Aims We conducted a qualitative analysis to explore PCPs’ attitudes and self-reported roles in caring for patients with cirrhosis.
L. A. Beste (&) G. A. Evans Primary Care Service, VA Puget Sound Health Care System, 1660 S. Columbian Way, Seattle, WA 98108, USA e-mail: [email protected] L. A. Beste B. K. Harp Health Services Research and Development, VA Puget Sound Health Care System, Seattle, WA, USA L. A. Beste G. A. Evans Division of General Internal Medicine, University of Washington, Seattle, WA, USA R. K. Blais Mental Health Service, VA Puget Sound Health Care System, Seattle, WA, USA R. K. Blais Department of Psychology, Utah State University, Logan, UT, USA
Methods We recruited PCPs from seven Veterans Affairs facilities in the Pacific Northwest via in-service trainings and direct email from March to October 2012 (n = 24). Trained staff administered structured telephone interviews covering: (1) general attitudes; (2) roles and practices; and (3) barriers and facilitators to cirrhosis management. Two trained, independent coders reviewed each interview transcript and thematically coded responses. Results Three overarching themes emerged in PCPs’ perceptions of cirrhosis patients: the often overwhelming complexity of comorbid medical, psychiatric, and substance issues; the importance of patient self-management; and challenges surrounding specialty care involvement and co-management of cirrhosis. While PCPs felt they brought important skills to bear, such as empathy and care coordination, they strongly preferred to defer major cirrhosis management decisions to specialists. The most commonly reported barriers to care included patient behaviors, access issues, and conflicts with specialists. Conclusions PCPs perceive Veterans with cirrhosis as having significant medical and psychosocial challenges. PCPs tend not to see their role as directing cirrhosis-related management decisions. Educational efforts directed at PCPs must foster PCP empowerment and improve comfort with managing cirrhosis. Keywords Primary care health Specialty care Chronic liver disease Attitudes
S. L. Zickmund Center for Health Equity Research and Promotion, VA Pittsburgh Health Care System, Pittsburgh, PA, USA
Introduction
S. L. Zickmund Departments of Medicine and Clinical and Translational Science, University of Pittsburgh, Pittsburgh, PA, USA
Cirrhosis is the final common endpoint of chronic liver disease and is the 12th leading cause of death in the USA [1]. Alcoholic liver disease and viral hepatitis—particularly
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hepatitis C virus (HCV)—cause most cases of cirrhosis in the USA and in the Department of Veterans Affairs (VA) [2, 3]. Cirrhosis incidence is expected to rise dramatically in the coming decade as the HCV-infected cohort continues to age [4]. Given an anticipated shortage in the hepatology workforce [5], care for patients with cirrhosis will likely fall increasingly to primary care providers (PCPs). Therefore, strategies to improve quality of care for cirrhosis must target PCPs. Recommended care for patients with cirrhosis ranges from vaccination against hepatitis A and B, to more complex interventions including substance abuse treatment and surveillance for hepatocellular carcinoma and gastroesophageal varices [6]. Appropriate management can decrease morbidity and mortality from liver disease complications, but two-thirds of cirrhosis patients do not receive all recommended care [7]. Furthermore, despite evidence that PCPs are capable of providing high-quality care for other complex chronic diseases, [8] lack of specialist involvement in cirrhosis is associated with lower use of guideline-concordant outpatient cirrhosis care such as hepatocellular carcinoma surveillance and ascites management [9]. Little is known about how to optimize cirrhosis care delivered by PCPs. Possible explanations for shortfalls in the current state of care include lack of access to specialist support, poor communication between PCPs and specialist support, gaps in PCPs’ knowledge, and patient-related factors. We hypothesized that PCPs’ beliefs about cirrhosis patients in general and their own roles in managing chronic liver disease influence the nature of their patient interactions. The VA is the largest integrated healthcare delivery system in the USA and employs over 5000 PCPs [10]. We interviewed 24 experienced VA-based PCPs to gain a better understanding of generalists’ attitudes and perceptions toward patients with cirrhosis.
Materials and Methods Participants We recruited a purposive sample of PCPs from seven Veterans Affairs (VA) facilities in the Pacific Northwest during in-service programs and by direct email from March to October 2012. PCPs were drawn from diverse practice settings including both community-based and academic facilities, and from both rural and urban locales. The sites included a tertiary care facility (Seattle, WA), several lower-complexity regional facilities (Spokane and Walla Walla, WA; Boise, ID; and White City, OR), and affiliated community-based outpatient clinics. As the primary purpose of this endeavor was quality improvement, as
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determined by our VA Program Office, our local institutional review board was notified of the project but did not require a formal review. Interviews The structured qualitative interview consisted of 13 questions (‘‘Appendix’’). We selected interview questions based on the conceptual framework of the chronic care model, a six-element model for the primary care medical home [11]. The chronic care model underpins much of the patientcentered medical home movement, and we felt it would address multiple aspects of PCP experiences in caring for cirrhosis patients. The interview questions reflect several components of this model and addressed PCPs’ general attitudes and beliefs about cirrhosis, beliefs about their roles in cirrhosis care, barriers to management, and suggestions for ways to enhance management. The interview was piloted by three PCPs outside of the study sample to refine wording and clarity before full implementation. Interview Procedure Trained study staff engaged in private, structured telephone interviews with PCPs. We also collected data on participants’ demographic characteristics (age, sex, race), professional background (degree, number of years in practice, US or foreign medical training), and practice environment (medical center, community-based outpatient clinic, or rehabilitation facility). Interviews were transcribed verbatim from digital audiotapes and then de-identified for analysis. Interview texts were organized into sections based on the individual questions being asked. Coding We determined analytic themes using an ‘‘Editing analysis style’’ developed by Crabtree and Miller for qualitative analysis within the context of the healthcare environment, to systematically identify meaningful segments of text [12]. The PI (L.A.B.) generated a preliminary codebook by systematically reviewing the interviews and by listing topics as they emerged from the text using an open, iterative process. The codebook was further refined through review of emerging topics and discussion with other members of the study team, including a qualitative expert (S.L.Z). Two trained, independent coders reviewed each interview transcript and applied the final codebook aided by the qualitative software program, Atlas.ti 7 (Scolaris, Berlin, Germany). The transcripts were coded independently, and discrepancies were adjudicated via discussion between the two coders. When no consensus could be reached,
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differences were discussed with the PI in order to arbitrate and render a final decision. Inter-coder reliability was assessed using Cohen’s kappa (overall k = 0.93, withincode reliability [0.84–1.0]). The total mean k value demonstrates what Landis and Koch define as near-perfect inter-coder agreement [13]. The final adjudicated codes were used for the analysis. For the quantitative demographic data, we calculated means and percentages for participant demographics. The focus of our analysis involved identifying provider attitudes toward cirrhosis patients and their perceptions of PCPs’ roles in providing care. We classified attitudes as text segments that revealed personal feelings or opinions about cirrhosis patients; and roles as segments describing activities within the PCP’s professional purview related to cirrhosis. Particular attention was paid to discussion of the boundaries of care between generalists and specialists, and facilitators or barriers to providing care to cirrhosis patients.
remainder saw fewer or were unsure. Nearly one-third (30 %) practiced in federally designated rural areas. Characteristics of VA patients with cirrhosis in the northwest region, as of 2011, were obtained from prior work and are described in Table 2 [3]. Major Themes Three overarching themes emerged in PCPs’ perceptions of cirrhosis patients: the overwhelming complexity of their comorbid medical, psychiatric, and substance issues; the importance of patient self-management; and challenges surrounding specialty care involvement and co-management of cirrhosis. While PCPs felt they brought important additional skills to bear, such as empathy and care coordination, they strongly preferred to defer major cirrhosis management decisions to specialists. The most commonly reported barriers to care included patient-related factors, access issues, and conflicts with specialists. PCP Perceptions of Cirrhosis Patients
Results Sample Characteristics Twenty-four PCPs participated in the interviews, including 13 nurse practitioners, six physicians, one physician assistant, and four unspecified primary care providers. Participant sites included three medical centers and four community-based outpatient clinics in Washington, Oregon, Idaho, and Alaska. Characteristics of the PCP sample are presented in Table 1. The majority (79 %) self-reported seeing at least one cirrhosis patient per month, while the
PCPs almost universally described cirrhosis patients as medically and psychosocially complex. When asked what came to mind when they thought about cirrhosis, PCPs frequently described both medical and psychosocial features in tandem. ‘‘A lot of times, people who have cirrhosis are people with drug abuse, alcohol abuse…and so there’s a layer of social issues with these people from the get-go.
Table 2 Characteristics of VA patients with cirrhosis in the Pacific Northwest Region (n = 2088) (2011) [3] Table 1 Primary care provider characteristics (n = 24) Age [mean (SD)] (years) Female (%)
51.7 (5.2) 65 %
Professional designation (n)
Age [mean (SD)]
60.7 (8.0 %)
Male
96.7
Race White
77.3
Physician
6
Black
4.16
Nurse practitioner
13
Hispanic
2.77
Physician assistant
1
Other
15.1
Other/missing
4
Unknown
0.62
English speaking
100 %
Practice location (n)
Cirrhosis etiology Viral hepatitis
770 (26.7)
Community-based outpatient clinic
8
Alcohol
684 (23.7)
Hospital or medical center
13
Both
972 (33.7)
Other
458 (15.9)
Domiciliary or rehabilitation center
3
Federally designated rural area (%)
30 %
Decompensated cirrhosis
Years in practice [mean (SD)]
19.1 (8.9)
Seen by GI/hepatology in past year
35.8
International medical graduate (%)
12.5 %
56.8
Academic affiliation (%)
20.8 %
Primary care in medical center (as opposed to community-based outpatient clinic)
19.7
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There’s not always a drug-induced type of situation and then that’s different. But by and large there is that social component of self-destructive behavior.’’ ‘‘Many of my cirrhosis patients have very significant mental health issues…and so I would say that those make it harder to treat [their cirrhosis].’’ PCPs displayed great empathy to the patients’ experience of illness. They often described themselves as ‘‘translators’’ of medical information for their patients and specifically highlighted the attention they paid to helping patients understand the condition of cirrhosis. ‘‘I think about, first of all, a stigma that they feel…because a lot of providers and a lot of people in society, I think, look at cirrhosis as something that people bring on themselves. I think it’s similar to the way people look at lung cancer although cirrhosis is much more obvious.’’ ‘‘Mainly I think more about quality of life and getting toward what are they gonna do, and [explaining] end stage liver disease and options available to them. [How] each day goes, you know, and how do you get quality out of it…’’ Perceived Responsibilities of Specialists Versus Generalists in Cirrhosis Care PCPs were divided about their roles in caring for cirrhosis patients. However, the majority felt that cirrhosis management was the purview of specialists as opposed to generalists. Many PCPs commented on feeling overwhelmed by cirrhosis patients or feeling like they lacked the skills to manage them. ‘‘[I feel] a little anxiety because I don’t feel confident in caring for them.’’ ‘‘Well, without the training background, we [PCPs] just keep an eye on their liver function and make sure that they are getting their annual ultrasound screen, but other than that you know we usually rely on Hepatology.’’ Reliance on specialists was a common sentiment, with a third of interviewees reporting that their major role was as a gatekeeper to specialty liver services. ‘‘I usually depend on the recommendations of the GI specialist. If someone has a new diagnosis of cirrhosis of course I’ll be sending [the patient] to them [the specialist]. I’ll look at what the recommendations are and that’s how generally I’ll follow it.’’ ‘‘In hepatitis C I feel what I do is look at the enzymes, look at the hepatitis C viral load, and refer as fast as we can and get them to the [Hepatology] clinic…’’
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Only a handful of providers (n = 5) felt confident in their ability to manage cirrhosis. Of these, three were physicians and four were based at a medical center as opposed to a community-based clinic. ‘‘I think primary care providers probably should do most of the management of cirrhosis short of liver transplantation. The primary care providers would order the screening tests, the primary care providers would offer or coordinate dietary and lifestyle change advice, and primary care providers would be the ones to decide when to refer to an appropriate subspecialist for interventional therapy…’’ ‘‘It’s up to me to make sure they have their regular screening, such as the ultrasound every 6 months to rule out hepatocellular carcinoma. And to just care for their general health…’’ In terms of defining their role responsibilities versus specialists, PCPs often reported confusion negotiating who was responsible for various aspects of care. Much of this difficulty surrounded the perception that specialists tended to ‘‘delegate’’ responsibility for onerous tasks to PCPs, or to shunt the burden of ensuring continuity onto the PCPs’ shoulders. ‘‘I think the challenge I face a lot of times would be who’s responsible, the specialist or the provider. I see a lot of times where the specialist will say, you know, ‘Come back in 6 months’, and yet the coordination isn’t there…’’ ‘‘So I saw a chart note today. One of my patients was seen at the Hepatology clinic. The note says that he’s still drinking six beers a day, but he needs to follow up with his PCP to discuss alcohol cessation. Really? And I’m like, you know, what are you [the specialist] there for? Are you just there to prescribe medicine? … She [the specialist] will say like ‘‘oh, go see your PCP about drinking and get her to get you to quit.’’ Why can’t this specialist refer a patient for alcohol treatment? You [the specialist] care for that person and you [should] show that you care for that person. And if they [the patients] need to be talked to about why it’s important not to drink, well then that’s what you do that day, in my mind. Sometimes I wonder what is my role.’’ Without clear role responsibilities in cirrhosis, it was common for PCPs to report resentment toward specialists. Perceived Roles of PCPs PCPs considered their contributions important, but fundamentally different from the role of managing or directing cirrhosis-related care. Most (17 of 24) did not feel that
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diagnosing cirrhosis was inherently more difficult than other chronic diseases such as diabetes or chronic obstructive pulmonary disease. The PCPs’ most commonly reported role in cirrhosis was to monitor patients for medical complications or new symptoms. ‘‘[My role is] monitoring labs, monitoring symptoms, monitoring weight for if they have ascites.’’ PCPs often saw care coordination and advocacy as a major part of their role. ‘‘Most of my patients are followed in the Hepatology clinic…so [my role is] just to make sure that they’re following up as expected and not falling through the cracks.’’ ‘‘[My role is] to help communicate with the patient that you’re their advocate and to help them with comfort, and getting treatment if it’s possible.’’ PCPs placed a high value on educating patients and setting expectations about the typical natural history of cirrhosis. ‘‘[My role is] trying to educate the patient as to what are likely expectations…do they really understand that this could be the beginning of a poor prognosis.’’ PCPs reported needing to be flexible in adapting themselves to patients’ unique situations. ‘‘My role has taken on different things depending on the patient.’’ ‘‘I take care of whatever the patient needs from me. I don’t get to choose what illness the patient may have.’’ Lastly, many providers described their role in a preventive light, such as encouraging healthy behaviors and limiting further liver damage. ‘‘For some of them [my role is] trying to help them not drink or do lifestyle things…to help optimize their personal health.’’ ‘‘First of all there’s the primary care aspect of it—I need to be doing some preventative medicine.’’ Perceptions About Patients’ Roles in Self-Management Providers universally believed that cirrhosis patients play an important role in self-management. Some interviewees reported a collaborative relationship where both PCP and patient need to work together to bring about changes. ‘‘[The patients] are part of the team. With a diagnosis of cirrhosis their role is to make it to their appointments, to ask questions as they come up, and to really play their role in preventing it from getting worse. So basically working hand-in-hand with the provider.’’
‘‘The patient is the one who will define how much we’re going to treat and how little we’re going to treat; how much he or she wants to participate in therapy and; how much he or she is going to let us do. There is no therapy that we can offer for cirrhosis that doesn’t require our patients’ active collaboration on a daily basis. The patient really is the one who will define whether cirrhosis is treated or not.’’ Another group of PCPs thought that the patient was the main motivating force and that treatment wouldn’t succeed if the patient didn’t want to make changes. ‘‘I think they need to take an active role, otherwise the management by the primary care provider is not really going to be helpful.’’ ‘‘I think they [the patients] have the primary role. They need to buy into treatment and try to keep themselves as healthy as they can. They’re gonna make the final decision.’’ PCPs generally agreed that patients make choices about whether to follow the recommendations of their healthcare team. Although PCPs desired to support their patients, they also believed that the decision to make healthy choices lay with the patients, themselves. ‘‘They gotta want to live more than they want to die.’’ ‘‘Well, like a lot of chronic medical conditions, I think their role is to really just to educate themselves so they understand, ‘Gosh, why do I need this medicine? Cause really why can’t I just have one glass of wine…or one beer? You meant I can’t have any’? I think sometimes it seems like they don’t quite get it.’’ Challenges to Caring for Patients with Cirrhosis PCPs described many challenges to caring for cirrhosis patients. The most commonly reported barriers to care (10 of 24 providers) centered on patient-related factors, such as low patient motivation and adherence, comorbid mental illness, or substance use. ‘‘The challenge from the patient, which applies everywhere—urban or rural, tertiary or primary—is that many patients are reluctant to participate fully in therapy or to make lifestyle changes which would facilitate the therapy. Particularly giving up alcohol but also just coming in for appointments and taking medicines which don’t make them feel good. So I think patient compliance or patient adherence or patient participation, whatever you want to call it, is a big barrier.’’ Some providers openly acknowledged a negative stereotype of cirrhosis patients.
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‘‘There’s a certain demographic of a lot of these guys… That’s a big, big one. Just…are they going to follow through? Usually there’s drug abuse issues or alcohol issues, mental health issues—the kind of things that affect adherence.’’ Another major category of challenge included logistical issues, such as travel concerns and getting patients timely access to medical services. ‘‘Some of the folks in our little area are miles away…so then they have to rely on the provider or the clinic that is near them. And it then would fall on what lab and things are available to them and the comfort level of the provider to titrate medication. So that could be a barrier. And it may be just the ability of the patient to be able to get in in a more frequent manner in an era when panels are growing and time is less available.’’ ‘‘We have a large area we cover. Distance and travel at times is very difficult for a lot of these patients because they live out in areas where they don’t have easy access to healthcare…so they don’t get [healthcare] or they don’t follow up when they should or they can’t afford to follow up. They can’t afford to travel in from a long ways out and so I think that’s a very large part of it.’’
Discussion PCPs perceive cirrhosis patients as extremely complex, with sometimes overwhelming interrelated medical and psychosocial issues. They place a heavy emphasis on patients’ own contributions to self-management, particularly with respect to substance use cessation and adherence to medical recommendations. The majority of PCPs did not believe that cirrhosis is harder to diagnose than other complex chronic conditions such as diabetes or chronic obstructive pulmonary disease, though 21 % reported encountering less than one cirrhosis patient per month. PCPs tended not to see themselves as the drivers of cirrhosisrelated care, instead strongly preferring that specialists take the lead in making major management decisions. They described important and distinct contributions compared to specialists—particularly coordinating care, educating patients about liver disease, and helping them navigate the medical system. PCPs’ tendency to perceive cirrhosis as a ‘‘specialty condition’’ has implications for the future care of patients with advanced liver disease. Liver disease care will likely shift increasingly to primary care due to growth in the prevalence of cirrhosis. Prior studies report higher rates of guideline-concordant care and better outcomes when PCPs
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collaborate with specialists across a range of conditions, including diabetes [14], post-myocardial infarction [15], and post-cancer care [16]. Given appropriate support, PCPs have demonstrated HCV treatment outcomes equivalent to those of liver specialists [17]. Level of PCP involvement inevitably varies depending on local resources, clinical culture, and availability of specialists. Fostering a more active PCP role in management of cirrhosis will require specialty mentorship and respectful multidisciplinary networks, and sufficient clinical time to care for these complex patients. Our analysis suggests that PCPs are open to improving their expertise in managing cirrhosis but require a cultural shift toward increased empowerment and support to do so. Future efforts to engage PCPs in cirrhosis management should capitalize on the important and practical skills they often bring to bear, such as effective communication. Qualitative studies in patients with HCV show a pattern of communication difficulties, with patients twice as likely to report poor communication with specialists versus generalists [18]. Because cirrhosis is a chronic condition, PCPs have the opportunity to establish trusting patient relationships over time, potentially leading to improved patient enablement. PCPs are also well situated to impact the subgroup abusing drugs or alcohol (e.g., through repeated brief alcohol intervention) even among patients who do not opt for formal addiction treatment [19]. Lastly, primary care providers may have access to additional practical resources that specialists lack. For example, VA primary care teams are designed to be multidisciplinary and typically include nursing, social work, pharmacy, and administrative support. The PCPs in our study reported patient-level factors as the most common barriers to care, including individual patient motivation, adherence to medical recommendations, and logistical concerns (e.g., inability to travel to visits). PCPs also repeatedly brought up conflicts with specialists as an issue. Previous studies demonstrate that relationships between PCPs and specialists in other disciplines are often fraught with problems [20–22]. Our interviewees expressed particular resentment when specialists delegated burdensome responsibilities to them, or left it to them to organize specialty-related follow-up. We note that the VA is a single integrated system that exclusively utilizes electronic medical records; we hypothesize that communication difficulties are likely magnified in private sector settings. Earlier work illustrates that PCPs’ priorities for successful collaboration with specialists include developing personal relationships and gaining mutual respect [23]. Though patients may assume that this type of professional collaboration is the norm, a recent study of commercial healthcare claims found that primary care providers rarely
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paired with the same specialist on more than one or two patients, leaving little opportunity for trusting, collegial relationships to develop [24]. Future efforts to foster better primary–specialty teamwork and to clarify roles and responsibilities would help to address these issues in cirrhosis care. One successful example is the New Mexico-based telemedicine program, Extension for Community Healthcare Outcomes, which provides specialty mentorship to develop PCPs’ skills and improve primary care–specialty communication for traditionally specialty-specific conditions. This project resulted in high levels of provider satisfaction as well as clinical outcomes equal to those of specialist [17] and has been implemented across much of the VA system. Although many of the patient-related barriers to cirrhosis care are likely generalizable, our findings should be corroborated outside the VA. The cirrhosis population in the Pacific Northwest is comparable to its non-VA counterpart with respect to disease etiology (predominantly from HCV and alcohol), and age (predominantly middleaged) (Table 2) [2, 3]. Nevertheless, further work is needed to determine additional barriers and facilitators to cirrhosis care outside the VA and the Pacific Northwest Region. Future study is needed to judge the pervasiveness and consequences of providers’ biases toward cirrhosis patients. Although many PCPs expressed compassion toward cirrhosis patients, others expressed more negative attitudes, especially frustration with patients’ perceived lack of insight into the changes necessary to improve their health. Although not unique to cirrhosis, provider biases may potentially affect clinical care and patients’ healthcare experiences. Prior work has shown that patients have correctly noted concerns about PCP’s limited knowledge of HCV, and a significant minority perceives frank stigmatization from their provider [25]. Patients with liver disease may be less likely to seek medical care if they encounter stigma during healthcare interactions [26]. We applaud efforts to offer training to promote behavior change, such as VA’s mandatory motivational interviewing workshops, but believe that continued work in this area is needed if provider biases are to be fully addressed. Strengths of our study include a diverse group of PCPs in terms of training background (physicians, nurse practitioners, physician assistant), practice locations (medical center, community-based outpatient clinic, domiciliary or rehabilitation center) and academic affiliation. Our interviewees were highly experienced PCPs with an average of 19 years in practice, and were generally US-educated. Several important limitations deserve mention. Many of the themes we discovered are likely generalizable outside the VA, but our results should be replicated in a more nationally representative sample. Next, PCPs in our study reported seeing relatively few patients with cirrhosis on a
monthly basis (21 % reported seeing less than one patient with cirrhosis per month). Despite their report that cirrhosis is no harder to diagnose than other complex conditions, we suspect that underdiagnosis of compensated cirrhosis remains common. Our results suggest a need for PCP-focused educational efforts, and improved role clarification between liver specialists and PCPs. Future work is needed to explore PCP biases, including those related to health disparities, the role of shared decision-making in negotiating treatment plans, and the relationship of provider characteristics (e.g., professional background, practice setting, etc.) to engagement with managing cirrhosis.
Conclusion PCPs perceive cirrhosis patients as medically and psychosocially complex. PCPs generally report that diagnosing cirrhosis is no more difficult than other chronic diseases, but tend not to see themselves as active drivers of cirrhosis-related management decisions, instead preferring to defer this role to specialists. Educational efforts directed at PCPs must address their lack of comfort with cirrhosis management and foster a sense of PCP empowerment. Acknowledgments The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs. Portions of this work were presented at The Liver Meeting (November 5, 2013), the annual meeting of the American Association for the Study of Liver Disease. This material is the result of work supported by resources from the VA Puget Sound Health Care System (Seattle, Washington). Funding was provided by the VA National Hepatitis C Resource Centers program, through the Office of HIV, Hepatitis C, and Public Health Pathogens. Conflict of interest
None.
Appendix: Interview Questions We are interested in your story about treating patients with cirrhosis: (1) (2)
How often do you encounter patients with cirrhosis or end-stage liver disease? What comes to mind when you think about cirrhosis patients?
We are interested in your role as a primary care provider: (3) (4) (5)
What do you think are the role(s) of primary care providers in managing patients with cirrhosis? Have you ever diagnosed cirrhosis before? If so, how did you make the diagnosis? How comfortable do you feel with making treatment decisions related to cirrhosis?
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(6)
Do you think cirrhosis is easy or difficult to diagnose compared to other conditions?
Follow-up: What makes you say this? (7)
What do you think is the role of the patient in selfmanagement of cirrhosis?
We are interested in problems that arise in caring for cirrhosis patients: (8)
What factors do you think tend to delay the diagnosis of cirrhosis? (9) What is the biggest challenge you face in caring for cirrhosis patients? (10) What do you think are barriers to managing cirrhosis patients after hospital discharge? We are interested in learning where you get information about cirrhosis: (11)
(12) (13)
Where do you get most of your information about cirrhosis? Is there a source you tend to rely on the most? Do you feel you can reach out for assistance if you have questions about a patient with cirrhosis? Is there anything you would like to add that would help us to understand your experience of diagnosing cirrhosis?
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