Oncologists' Perspectives on Cancer Survivorship: What Role Should Primary Care Play?

Background: Despite calls for an enhanced role for primary care for individuals with a history of cancer, primary medical care's role in adult survivorship care continues to be marginal.Methods: We conducted in-depth interviews with 8 medical oncologists with interest in cancer survivorship from 7 National Cancer Institute designated comprehensive cancer centers to understand perspectives on the role of primary care in cancer survivorship.Results: Two salient overarching thematic patterns emerged. (1) Oncologist's perspectives diverge on if, how, and when primary care clinicians should be involved in survivorship, ranging from involvement of primary care throughout treatment to a standardized hand-off years post-therapy. (2) Oncologist's lack understanding about primary care's expertise and subsequent value in survivorship care.Conclusion: As oncology continues to be overwhelmed by rising numbers of aging cancer survivors with multi-morbidities, NCI-designated cancer centers should take a leadership role in integrating primary care engaged cancer survivorship.

Cancer Survivorship Care in Advanced Primary Care Practices: A Qualitative Study of Challenges and Opportunities.

Importance: Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors. Objective: To explain why primary care has not begun to integrate comprehensive cancer survivorship services. Design, Setting, and Participants: Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes. Main Outcomes and Measures: Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care. Results: The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care. Conclusions and Relevance: To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.

Breast and prostate cancer survivors' experiences of patient-centered cancer follow-up care from primary care physicians and oncologists.

PURPOSE: Patient-physician relationships impact health care seeking and preventive screening behaviors among patients. At the end of active treatment some cancer survivors report feeling disconnected from their care team. This study explores cancer survivors' experiences of patient-centered cancer follow-up care provided by primary care physicians (PCP) and oncologists (ONC). METHODS: Three hundred five early stage, breast and prostate cancer survivors at least 2 years post treatment were surveyed from four community hospital oncology programs in New Jersey. Participants reported receipt of patient-centered care measured by care coordination, comprehensiveness of care, and personal relationship with PCPs and ONCs. RESULTS: PCPs received higher ratings for coordination of care and comprehensive care than ONCs from all survivors (P < 0.01). However, prostate and breast cancer survivors rated strengths of their personal bonds with the physicians differently. While prostate cancer survivors rated PCPs significantly higher for all items (P < 0.028), breast cancer survivors rated ONCs significantly higher on four out of seven items including having been through a lot together, understanding what is important regarding health, knowing their medical history and taking their beliefs and wishes into account (P < 0.036). CONCLUSIONS: Prostate and breast cancer survivors report different experiences with their PCPs and oncologists around the comprehensiveness and coordination of their cancer follow-up care in addition to the strength of their relationships with their physicians. IMPLICATIONS FOR CANCER SURVIVORS: There are important differences in the experience of patient-centered care among cancer survivors that should be considered when planning care models and interventions for these different populations.

Understanding Care Integration from the Ground Up: Five Organizing Constructs that Shape Integrated Practices.

PURPOSE: To provide empirical evidence on key organizing constructs shaping practical, real-world integration of behavior health and primary care to comprehensively address patients' medical, emotional, and behavioral health needs. METHODS: In a comparative case study using an immersion-crystallization approach, a multidisciplinary team analyzed data from observations of practice operations, interviews, and surveys of practice members, and implementation diaries. Practices were drawn from 2 studies of practices attempting to integrate behavioral health and primary care: Advancing Care Together, a demonstration project of 11 practices located in Colorado, and the Integration Workforce Study, a study of 8 practices across the United States. RESULTS: We identified 5 key organizing constructs influencing integration of primary care and behavioral health: 1) Integration REACH (the extent to which the integration program was delivered to the identified target population), 2) establishment of continuum of care pathways addressing the location of care across the range of patient's severity of illness, 3) approach to patient transitions: referrals or warm handoffs, 4) location of the integration workforce, and 5) participants' mental model for integration. These constructs intertwine within an organization's historic and social context to produce locally adapted approaches to integrating care. Contextual factors, particularly practice type, influenced whether specialty mental health and substance use services were colocated within an organization. CONCLUSION: Interaction among 5 organizing constructs and practice context produces diverse expressions of integrated care. These constructs provide a framework for understanding how primary care and behavioral health services can be integrated in routine practice.

REACH of Interventions Integrating Primary Care and Behavioral Health.

PURPOSE: This study reports REACH (the extent to which an intervention or program was delivered to the identified target population) of interventions integrating primary care and behavioral health implemented by real-world practices. METHODS: Eleven practices implementing integrated care interventions provided data to calculate REACH as follows: 1) Screening REACH defined as proportion of target patients assessed for integrated care, and 2) Integrated care services REACH-defined as proportion of patients receiving integrated services of those who met specific criteria. Difference in mean REACH between practices was evaluated using t test. RESULTS: Overall, 26.2% of target patients (n = 24,906) were assessed for integrated care and 41% (n = 836) of eligible patients received integration services. Practices that implemented systematic protocols to identify patients needing integrated care had a significantly higher screening REACH (mean, 70%; 95% CI [confidence interval], 46.6-93.4%) compared with practices that used clinicians' discretion (mean, 7.9%; 95% CI, 0.6-15.1; P = .0014). Integrated care services REACH was higher among practices that used clinicians' discretion compared with those that assessed patients systematically (mean, 95.8 vs 53.8%; P = .03). CONCLUSION: REACH of integrated care interventions differed by practices' method of assessing patients. Measuring REACH is important to evaluate the extent to which integration efforts affect patient care and can help demonstrate the impact of integrated care to payers and policy makers.

Cancer Survivors and the Patient-Centered Medical Home.

Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients' understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and NCI designated comprehensive cancer centers, ranging from non-activated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the Patient-Centered Medical Home as a conceptual framework, we propose a research, policy and practice agenda that advocates for multi-faceted decision support to enhance cancer survivorship and follow-up care.

'They don't ask me so I don't tell them': patient-clinician communication about traditional, complementary, and alternative medicine.

PURPOSE: Although high rates of traditional medicine and complementary and alternative medicine (TM/CAM) use have been well documented, there has been less attention to the factors influencing communication between patients and their primary care clinicians about TM/CAM. Such communication can be important in anticipating possible drug-herb interactions and in assuring agreement about therapeutic plans. METHODS: We used sequential, multistage, qualitative methods, including focus groups, in-depth interviews, and a video vignette, to explore communication about TM/CAM between patients and their primary care clinicians. The study was conducted in RIOS Net (Research Involved in Outpatient Settings Network), a Southwestern US practice-based research network, situated largely in Hispanic and American Indian communities where TM/CAM is an important part of self-care. RESULTS: One hundred fourteen patients, 41 clinic staff members, and 19 primary care clinicians in 8 clinic sites participated. The degree and nature of TM/ CAM communication is based on certain conditions in the clinical encounter. We categorized these findings into 3 themes: acceptance/nonjudgment, initiation of communication, and safety/efficacy. Perceived clinician receptivity to and initiation of discussion about TM/CAM strongly influenced patients' decisions to communicate; perceived clinician expertise in TM/CAM was less important. Clinicians' comfort with patients' self-care approaches and their level of concern about lack of scientific evidence of effectiveness and safety of TM/CAM influenced their communication about TM/CAM with patients. CONCLUSIONS: Specific communication barriers limit patient-clinician communication about TM/CAM. Clinicians who wish to communicate more effectively with their patients about these topics and better integrate the types of care their patients use can change the communication dynamic with simple strategies designed to overcome these barriers.

Understanding healing relationships in primary care.

PURPOSE: Clinicians often have an intuitive understanding of how their relationships with patients foster healing. Yet we know little empirically about the experience of healing and how it occurs between clinicians and patients. Our purpose was to create a model that identifies how healing relationships are developed and maintained. METHODS: Primary care clinicians were purposefully selected as exemplar healers. Patients were selected by these clinicians as having experienced healing relationships. In-depth interviews, designed to elicit stories of healing relationships, were conducted with patients and clinicians separately. A multidisciplinary team analyzed the interviews using an iterative process, leading to the development of case studies for each clinician-patient dyad. A comparative analysis across dyads was conducted to identify common components of healing relationships RESULTS: Three key processes emerged as fostering healing relationships: (1) valuing/creating a nonjudgmental emotional bond; (2) appreciating power/consciously managing clinician power in ways that would most benefit the patient; and (3) abiding/displaying a commitment to caring for patients over time. Three relational outcomes result from these processes: trust, hope, and a sense of being known. Clinician competencies that facilitate these processes are self-confidence, emotional self-management, mindfulness, and knowledge. CONCLUSIONS: Healing relationships have an underlying structure and lead to important patient-centered outcomes. This conceptual model of clinician-patient healing relationships may be generalizable to other kinds of healing relationships.

Colorectal cancer screening among obese versus non-obese patients in primary care practices.

BACKGROUND: Obesity is associated with increased colorectal cancer incidence and mortality. Previous studies using telephone survey data showed that obese women were less likely to receive colorectal cancer screening. It is unknown if this is true among patients in primary care practices. METHODS: Retrospective chart reviews were conducted in 2003-2004 of men and women in 22 suburban New Jersey and Pennsylvania primary care practices. Data from patients age 50 years and over (n=1297) were analyzed using hierarchical logistic regression. The outcome measure was receipt of colorectal cancer screening (fecal occult blood test within 1 year, sigmoidoscopy within 5 years, colonoscopy within 10 years, or barium enema within 5 years) among obese and non-obese patients. RESULTS: Overall, 39% of patients were obese and 29% received colorectal cancer screening. After controlling for age, gender, total number of co-morbidities, number of visits in the past 2 years, and number of years in the practice, obese patients had 25% decreased odds of being screened for colorectal cancer compared to non-obese patients (OR 0.75, 95% CI, 0.62-0.91). The relationship of obesity and colorectal cancer screening did not differ according to gender. Number of visits (OR 1.04, 95% CI, 1.01-1.06) and male gender (OR 1.53, 95% CI, 1.19-1.97) was associated with increased odds of receiving colorectal cancer screening. CONCLUSION: Identification of physician and patient barriers to colorectal cancer screening is needed, particularly in obese patients, so that effective interventions may be developed to increase screening in this high-risk group.

Healing landscapes: patients, relationships, and creating optimal healing places.

Healing can be both an intensely personal and a social and community event that often surprises us when it emerges from the landscape of everyday life. This observation raises at least three questions that serve as the focus for this paper's reflections about creating optimal healing places. Who are patients? What relationships and features of those relationships help patients toward healing? How do we understand and facilitate the emergence of healing over time and place? Using existing literature and our own past and current studies of patients, clinical encounters, and primary care practices, we explore each of these questions. We identify four different aspects or faces of patients: patients as human animals, patients as persons, patients as techno-consumers, and patients as patients. We highlight 10 lessons or observations about patients and their healing experiences. Key features of relational process are described, and nine interdependent relationship characteristics that appear to promote healing are discussed. The idea of healing landscapes as an emergent life space is introduced as a way of conceptualizing and further investigating these observations. A reflective action process for facilitating the emergence of healing landscapes and creating an ecology of hope is presented, and recommendations for future research are briefly shared.

Case study research: the view from complexity science.

Many wonder why there has been so little change in care quality despite substantial quality improvement efforts. Questioning why current approaches are not making true changes draws attention to the organization as a source of answers. The authors bring together the case study method and complexity science to suggest new ways to study health care organizations. The case study provides a method for studying systems. Complexity theory suggests that keys to understanding the system are contained in patterns of relationships and interactions among the system's agents. They propose some of the "objects" of study that are implicated by complexity theory and discuss how studying these using case methods might provide useful maps of the system. They offer complexity theory, partnered with case study method, as a place to begin the daunting task of studying a system as an integrated whole.

Research guidelines for assessing the impact of healing relationships in clinical medicine.

This paper charts a course for assessing the impact of healing relationships in clinical medicine. The system of healing relationships is multidimensional, longitudinal, contextual, and emergent. In a new conceptual model, healing relationships are identified in terms of the conditions of healing intention, motivation, and information transfer, and in terms of the attributes of emotional engagement, mindfulness, and trust. Five components of quality in healing relationships--adaptability, cohesion, growth, caring-in-relation, and commitment--are noted, and the importance of timing, attunement, and cultural meaning systems are described. Communication, clinical method, caring, competence, and treatment characteristics are differentiated as mediating processes; expectancy and conditioning are positioned as antecedents of healing relationships. Multiple personal and contextual outcomes are addressed with a recommendation for assessing a minimal set of each, including symptom resolution, health status, sense of coherence, patient enablement, cost effectiveness, quality of care, efficiency, access, and healer satisfaction. A wheel of knowledge connects 3 ways of knowing--personal, connected, and objective--with appropriate methodology and research designs. Applying this wheel to the issue of assessing impact in healing relationships reveals the need for multiple methods, perspectives, and triangulations. A critical multiplist strategy is one means for advancing this area of research. A double-helix trial design is introduced, in which one strand consists of a standard quantitative approach and the other consists of qualitative methods. The 2 strands are bonded by the questions addressed and by the participants in the study.

Understanding organizational designs of primary care practices.

During the past decade, many hospitals experienced difficulty integrating primary care practices into their health systems. We hypothesized that this difficulty may be, in part, a result of limited understanding of practice organizational designs. The structure and function of practices have not been well studied. In this article, we answer the following questions: Are practices all the same, or do variations in their organizational design exist? Do hospital designs predict the designs of affiliated practices? If variation exists, what are the management implications? Eighteen family practices, including nine affiliated with five separate hospital systems, were studied using an in-depth comparative case study design. A content analysis of the rich descriptive data from these cases indicates that a great variety exists in the organizational design of primary care practices, and this variety appears to be influenced by the initial conditions under which the practice was organized. Hospital system design in and of itself did not predict the design of affiliated practices. In fact, both affiliated and independent practices exhibited a range of design characteristics, some of which did not fit traditional models. Hospital systems that allowed greater flexibility of practice organizational designs were more effective at integrating and managing practices. Practices response to environmental change was greater when practice autonomy was highest. These findings suggest that a science of practice organizational design separate from that of hospitals is needed to help explain the success and failure of practices within health systems and to provide information for planning practice change.