Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients' Perspectives.

BACKGROUND: To improve care for individuals living with multiple chronic conditions, patients and providers must align care planning with what is most important to patients in their daily lives. We have a limited understanding of how to effectively encourage communication about patients' personal values during clinical care. OBJECTIVE: To identify what patients with multiple chronic conditions describe as most important to their well-being and health. DESIGN: We interviewed individuals with multiple chronic conditions in their homes and analyzed results qualitatively, guided by grounded theory. PARTICIPANTS: A total of 31 patients (mean age 68.7 years) participated in the study, 19 of which included the participation of family members. Participants were from Kaiser Permanente Washington, an integrated health care system in Washington state. APPROACH: Qualitative analysis of home visits, which consisted of semi-structured interviews aided by photo elicitation. KEY RESULTS: Analysis revealed six domains of what patients described as most important for their well-being and health: principles, relationships, emotions, activities, abilities, and possessions. Personal values were interrelated and rarely expressed as individual values in isolation. CONCLUSIONS: The domains describe the range and types of personal values multimorbid older adults deem important to well-being and health. Understanding patients' personal values across these domains may be useful for providers when developing, sharing, and following up on care plans.

Practical Approaches for Achieving Integrated Behavioral Health Care in Primary Care Settings.

Behavioral health problems are common, yet most patients do not receive effective treatment in primary care settings. Despite availability of effective models for integrating behavioral health care in primary care settings, uptake has been slow. The Behavioral Health Integration Implementation Guide provides practical guidance for adapting and implementing effective integrated behavioral health care into patient-centered medical homes. The authors gathered input from stakeholders involved in behavioral health integration efforts: safety net providers, subject matter experts in primary care and behavioral health, a behavioral health patient and peer specialist, and state and national policy makers. Stakeholder input informed development of the Behavioral Health Integration Implementation Guide and the GROW Pathway Planning Worksheet. The Behavioral Health Integration Implementation Guide is model neutral and allows organizations to take meaningful steps toward providing integrated care that achieves access and accountability.

How 3 rural safety net clinics integrate care for patients: a qualitative case study.

BACKGROUND: Integrated care focuses on care coordination and patient centeredness. Integrated care supports continuity of care over time, with care that is coordinated within and between settings and is responsive to patients' needs. Currently, little is known about care integration for rural patients. OBJECTIVE: To examine challenges to care integration in rural safety net clinics and strategies to address these challenges. RESEARCH DESIGN: Qualitative case study. PARTICIPANTS: Thirty-six providers and staff from 3 rural clinics in the Safety Net Medical Home Initiative. METHODS: Interviews were analyzed using the framework method with themes organized within 3 constructs: Team Coordination and Empanelment, External Coordination and Partnerships, and Patient-centered and Community-centered Care. RESULTS: Participants described challenges common to safety net clinics, including limited access to specialists for Medicaid and uninsured patients, difficulty communicating with external providers, and payment models with limited support for care integration activities. Rurality compounded these challenges. Respondents reported benefits of empanelment and team-based care, and leveraged local resources to support care for patients. Rural clinics diversified roles within teams, shared responsibility for patient care, and colocated providers, as strategies to support care integration. CONCLUSIONS: Care integration was supported by 2 fundamental changes to organize and deliver care to patients-(1) empanelment with a designated group of patients being cared for by a provider; and (2) a multidisciplinary team able to address rural issues. New funding and organizational initiatives of the Affordable Care Act may help to further improve care integration, although additional solutions may be necessary to address particular needs of rural communities.

Perspectives of cancer survivors on the role of different healthcare providers in an integrated delivery system.

PURPOSE: The purpose of this paper is to describe patient perspectives on survivorship care 1 year after cancer diagnosis. METHODS: The study was conducted at an integrated healthcare delivery system in western Washington State. Participants were patients with breast, colorectal, and lung cancer who had enrolled in a randomized control trial (RCT) of oncology nurse navigation to improve early cancer care. Those alive and enrolled in the healthcare system 1 year after diagnosis were eligible for this analysis. Participants completed surveys by phone. Questions focused on receipt of treatment summaries and care plans; discussions with different providers; patient opinions on who does and should provide their care; and patient perspectives primary care providers' (PCP) knowledge and skills related to caring for cancer survivors RESULTS: Of the 251 participants in the RCT, 230 (91.6%) responded to the 12-month phone survey and were included in this analysis; most (n = 183, 79.6%) had breast cancer. The majority (84.8%) considered their cancer specialist (e.g., medical, radiation, surgical or gynecological oncologist) to be their main provider for cancer follow-up and most (69.4%) had discussed follow-up care with that provider. Approximately half of patients were uncertain how well their PCP communicated with the oncologist and how knowledgeable s/he was in caring for cancer survivors. CONCLUSIONS: One year after diagnosis, cancer survivors continue to view cancer specialists as their main providers and are uncertain about their PCP's skills and knowledge in managing their care. Our findings present an opportunity to help patients understand what their PCPs can and cannot provide in the way of cancer follow-up care. IMPLICATIONS FOR CANCER SURVIVORS: Additional research on care coordination and delivery is necessary to help cancer survivors manage their care between primary care and specialty providers.

Physician support for diabetes patients and clinical outcomes.

BACKGROUND: Physician practical support (e.g. setting goals, pro-active follow-up) and communicative support (e.g., empathic listening, eliciting preferences) have been hypothesized to influence diabetes outcomes. METHODS: In a prospective observational study, patients rated physician communicative and practical support using a modified Health Care Climate Questionnaire. We assessed whether physicians' characteristic level of practical and communicative support (mean across patients) and each patients' deviation from their physician's mean level of support was associated with glycemic control outcomes. Glycosylated haemoglobin (HbA1c) levels were measured at baseline and at follow-up, about 2 years after baseline. RESULTS: We analysed 3897 patients with diabetes treated in nine primary care clinics by 106 physicians in an integrated health plan in Western Washington, USA. Physicians' average level of practical support (based on patient ratings of their provider) was associated with significantly lower HbA1c at follow-up, controlling for baseline HbA1c (p = .0401). The percentage of patients with "optimal" and "poor" glycemic control differed significantly across different levels of practical support at follow (p = .022 and p = .028). Communicative support was not associated with differences in HbA1c at follow-up. CONCLUSION: This observational study suggests that, in community practice settings, physician differences in practical support may influence glycemic control outcomes among patients with diabetes.

Diffusion of aromatase inhibitors for breast cancer therapy between 1996 and 2003 in the Cancer Research Network.

PURPOSE: Clinical trials demonstrated adjuvant aromatase inhibitor treatment is superior for decreasing breast cancer recurrence risk over adjuvant tamoxifen treatment as early as 2001. Yet clinical use for adjuvant treatment was not recommended by the American Society of Clinical Oncology until 2004. Aromatase inhibitor uptake after the first public presentation of randomized trial results but before the release of national guidelines is unclear. We evaluated diffusion of aromatase inhibitor dispensings for breast cancer treatment in integrated healthcare delivery systems across the United States. METHODS: We collected automated data for 13,245 women enrolled at seven integrated healthcare delivery systems in the Cancer Research Network. All women were aged >55 and diagnosed with estrogen receptor positive, invasive breast cancer between 1996 and 2003. We used electronic pharmacy data to identify aromatase inhibitor and tamoxifen dispensings through 2004. We evaluated the proportions of women who received hormone dispensings in two ways: (1) at any point after diagnosis to capture all use, and (2) in the two-year period following diagnosis to approximate adjuvant use. RESULTS: Over time, adjuvant aromatase inhibitor use increased whereas tamoxifen use decreased. Aromatase inhibitor dispensings within 2 years of diagnosis increased from 4.1% among women diagnosed in 2000 to 13% in 2001, 24% in 2002, and 40% in 2003. Tamoxifen use declined starting in 2001 at every system. CONCLUSION: Aromatase inhibitor use rose dramatically after 2001 while tamoxifen use decreased. It appears results from early clinical trials changed practice in these integrated healthcare systems before formal changes in national guidelines.

Racial differences in tumor stage and survival for colorectal cancer in an insured population.

BACKGROUND: Despite declining death rates from colorectal cancer (CRC), racial disparities have continued to increase. In this study, the authors examined disparities in a racially diverse group of insured patients. METHODS: This study was conducted among patients who were diagnosed with CRC from 1993 to 1998, when they were enrolled in integrated healthcare systems. Patients were identified from tumor registries and were linked to information in administrative databases. The sample was restricted to non-Hispanic whites (n = 10,585), non-Hispanic blacks (n = 1479), Hispanics (n = 985), and Asians/Pacific Islanders (n = 909). Differences in tumor stage and survival were analyzed by using polytomous and Cox regression models, respectively. RESULTS: In multivariable regression analyses, blacks were more likely than whites to have distant or unstaged tumors. In Cox models that were adjusted for nonmutable factors, blacks had a higher risk of death from CRC (hazard ratio [HR], 1.17; 95% confidence interval [95% CI], 1.06-1.30). Hispanics had a risk of death similar to whites (HR, 1.04; 95% CI, 0.92-1.18), whereas Asians/Pacific Islanders had a lower risk of death from CRC (HR, 0.89; 95% CI, 0.78-1.02). Adjustment for tumor stage decreased the HR to 1.11 for blacks, and the addition of receipt of surgical therapy to the model decreased the HR further to 1.06. The HR among Hispanics and Asians/Pacific Islanders was stable to adjustment for tumor stage and surgical therapy. CONCLUSIONS: The relation between race and survival from CRC was complex and appeared to be related to differences in tumor stage and therapy received, even in insured populations. Targeted interventions to improve the use of effective screening and treatment among vulnerable populations may be needed to eliminate disparities in CRC.

Finding common ground: patient-centeredness and evidence-based chronic illness care.

Health outcomes for patients with major chronic illnesses depend on the appropriate use of proven pharmaceuticals and other therapeutic technologies, and effective self-management by patients. Effective chronic illness care then bases clinical decisions on the best, rigorous scientific evidence, or evidence-based medicine. Effective support for patient self-management includes efforts to increase patient participation in care and collaborative goal-setting and planning of treatment. These interventions appear somewhat consistent with recent conceptualizations of patient-centered care. The consistent delivery of proven therapies and information and support for self-management requires practice systems organized for that purpose. The Chronic Care Model is a compilation of those practice system changes shown to improve chronic care. This paper explores the concept of patient-centeredness and its relationship to the Chronic Care Model. We conclude that the Model is both evidence-based and patient-centered and that these can be properties of health systems, and not just of individual practitioners.

Building a research consortium of large health systems: the Cancer Research Network.

Critical questions about cancer prevention, care, and outcomes increasingly require research involving large patient populations and their care delivery organizations. The Cancer Research Network (CRN) includes 11 integrated health systems funded by the National Cancer Institute (NCI) to conduct collaborative cancer research. This article describes the challenges of constructing a productive consortium of large health systems, and explores the CRN's responses. The CRN was initially funded through an NCI cooperative agreement in 1999 and has since received a second 4-year grant. Leadership and policy development are provided through a steering committee, subcommittees, and an external advisory committee. The CRN includes integral and affiliated research projects supported by a Scientific and Data Resources Core. Three characteristics of the CRN intensified the general challenges of consortium research: 1) its members are large health systems with legitimate concerns about confidentiality of data about enrollees, providers, and the organization; 2) CRN research projects often generate highly sensitive data about quality of care; and therefore 3) each participating organization wants a strong voice in CRN direction. CRN experience to date confirms that a consortium of health systems with internal research capacity can address a range of important cancer research questions that would be difficult to study in other venues. The advantages and challenges of consortium research are explored, with suggestions for the development, execution, and management of multisystem population laboratories.

Building a virtual cancer research organization.

BACKGROUND: The Cancer Research Network (CRN) comprises the National Cancer Institute and 11 nonprofit research centers affiliated with integrated health care delivery systems. The CRN, a public/private partnership, fosters multisite collaborative research on cancer prevention, screening, treatment, survival, and palliation in diverse populations. METHODS: The CRN's success hinges on producing innovative cancer research that likely would not have been developed by scientists working individually, and then translating those findings into clinical practice within multiple population laboratories. The CRN is a collaborative virtual research organization characterized by user-defined sharing among scientists and health care providers of data files as well as direct access to researchers, computers, software, data, research participants, and other resources. The CRN's research management Web site fosters a high-functioning virtual scientific community by publishing standardized data definitions, file specifications, and computer programs to support merging and analyzing data from multiple health care systems. RESULTS: Seven major types of standardized data files developed to date include demographics, health plan eligibility, tumor registry, inpatient and ambulatory utilization, medication dispensing, laboratory tests, and imaging procedures; more will follow. Data standardization avoids rework, increases multisite data integrity, increases data security, generates shorter times from initial proposal concept to submission, and stimulates more frequent collaborations among scientists across multiple institutions. CONCLUSIONS: The CRN research management Web site and associated standardized data files and procedures represent a quasi-public resource, and the CRN stands ready to collaborate with researchers from outside institutions in developing and conducting innovative public domain research.

Development and validation of the Patient Assessment of Chronic Illness Care (PACIC).

RATIONALE: There is a need for a brief, validated patient self-report instrument to assess the extent to which patients with chronic illness receive care that aligns with the Chronic Care Model-measuring care that is patient-centered, proactive, planned and includes collaborative goal setting; problem-solving and follow-up support. SAMPLE: A total of 283 adults reporting one or more chronic illness from a large integrated health care delivery system were studied. METHODS: Participants completed the 20-item Patient Assessment of Chronic Illness Care (PACIC) as well as measures of demographic factors, a patient activation scale, and subscales from a primary care assessment instrument so that we could evaluate measurement performance, construct, and concurrent validity of the PACIC. RESULTS: The PACIC consists of 5 scales and an overall summary score, each having good internal consistency for brief scales. As predicted, the PACIC was only slightly correlated with age and gender, and unrelated to education. Contrary to prediction, it was only slightly correlated (r = 0.13) with number of chronic conditions. The PACIC demonstrated moderate test-retest reliability (r = 0.58 during the course of 3 months) and was correlated moderately, as predicted (r = 0.32-0.60, median = 0.50, P < 0.001) to measures of primary care and patient activation. DISCUSSION: The PACIC appears to be a practical instrument that is reliable and has face, construct, and concurrent validity. The resulting questionnaire is in the public domain, and recommendations for its use in research and quality improvement are outlined.

Self-management aspects of the improving chronic illness care breakthrough series: implementation with diabetes and heart failure teams.

Self-management is an essential but frequently neglected component of chronic illness management that is challenging to implement. Available effectiveness data regarding self-management interventions tend to be from stand-alone programs rather than from efforts to integrate self-management into routine medical care. This article describes efforts to integrate self-management support into broader health care systems change to improve the quality of patient care in the Chronic Illness Care Breakthrough Series. We describe the general approach to system change (the Chronic Care Model) and the more specific self-management training model used. The process used in training organizations in self-management is discussed, and data are presented on teams from 21 health care systems participating in a 13-month-long Breakthrough Series to address diabetes and heart failure care. Available system-level data suggest that teams from a variety of health care organizations made improvements in support provided for self-management. Improvements were found for both diabetes and heart failure teams, suggesting that this improvement process may be broadly applicable. Lessons learned, keys to success, and directions for future research and practice are discussed.