Towards a framework for patient-centred care coordination: a scoping review protocol.

INTRODUCTION: Patient-centred care and care coordination are each key priority areas for delivering high quality healthcare. However, the intersection between these two concepts is poorly characterised. We theorise that greater advancements in healthcare quality could be realised when care is organised in a way that aligns with patients' preferences, needs and values across every level of the healthcare system. There is currently no published review that describes the intersection of patient-centred care and care coordination. We will undertake a scoping review that will be foundational to the development of a conceptual framework for patient-centred care coordination that integrates and synthesises the overlap between these two concepts and describe how it manifests across levels of the healthcare system. METHODS AND ANALYSIS: A multidisciplinary team of reviewers will conduct a scoping review of published and grey literature to identify and synthesise key concepts at the intersection of patient-centred care and care coordination, following Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews guidance for scoping reviews. Databases we will use in our search include PubMed, CINAHL, Embase, Social Sciences Abstracts, Nursing and Allied Health Premium, Health and Medical Collection, and PsycINFO. Articles will be included that are English-language; published during or after 2001; describe a theory, conceptual model, theoretical framework or definition that addresses both patient-centred care and care coordination. Articles will be excluded if they do not address the intersection of patient-centred care and care coordination; discuss a patient-centred medical home without discussion on patient-centred care concepts; or discuss a paediatric, inpatient or palliative care setting. A data extraction template will facilitate qualitative thematic analysis and findings will be synthesised into a conceptual framework. ETHICS AND DISSEMINATION: This work does not require ethics approval. A preliminary framework will be presented to a group of patient stakeholders for refinement before dissemination through a peer-reviewed journal and conference presentations.

Understanding Decision Making about Breast Cancer Prevention in Action: The Intersection of Perceived Risk, Perceived Control, and Social Context: NRG Oncology/NSABP DMP-1.

BACKGROUND: Literature on decision making about breast cancer prevention focuses on individual perceptions and attitudes that predict chemoprevention use, rather than the process by which women decide whether to take risk-reducing medications. This secondary analysis aimed to understand how women's perceptions of breast cancer risk and locus of control influence their decision making. METHODS: Women were accrued as part of the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project 1, a study aimed at understanding contributors to chemoprevention uptake. Thirty women participated in qualitative in-depth interviews after being counseled about chemoprevention. Deductive codes grouped women based on dimensions of risk perception and locus of control. We used a constant comparative method to make connections among inductive themes focused on decision making, deductive codes for perceived risk and perceived locus of control, and the influence of explanatory models within and across participants. RESULTS: Participants were predominantly non-Hispanic white (63%), with an average age of 50.9 years. Decision making varied across groups: the high-perceived risk/high-perceived control group used "social evidence" to model the behaviors of others. High-perceived risk/low-perceived control women made decisions based on beliefs about treatment, rooted in the experiences of social contacts. The low-perceived risk/low-perceived control group interpreted signs of risk as part of the normal continuum of bodily changes in comparison to others. Low-perceived risk/high-perceived control women focused on maintaining a current healthy trajectory. CONCLUSION: "Social evidence" plays an important role in the decision-making process that is distinct from emotional aspects. Attending to patients' perceptions of risk and control in conjunction with social context is key to caring for patients at high risk in a way that is evidence based and sensitive to patient preferences.

Evaluating the implementation of a national disclosure policy for large-scale adverse events in an integrated health care system: identification of gaps and successes.

BACKGROUND: Many healthcare organizations have developed disclosure policies for large-scale adverse events, including the Veterans Health Administration (VA). This study evaluated VA's national large-scale disclosure policy and identifies gaps and successes in its implementation. METHODS: Semi-structured qualitative interviews were conducted with leaders, hospital employees, and patients at nine sites to elicit their perceptions of recent large-scale adverse events notifications and the national disclosure policy. Data were coded using the constructs of the Consolidated Framework for Implementation Research (CFIR). RESULTS: We conducted 97 interviews. Insights included how to handle the communication of large-scale disclosures through multiple levels of a large healthcare organization and manage ongoing communications about the event with employees. Of the 5 CFIR constructs and 26 sub-constructs assessed, seven were prominent in interviews. Leaders and employees specifically mentioned key problem areas involving 1) networks and communications during disclosure, 2) organizational culture, 3) engagement of external change agents during disclosure, and 4) a need for reflecting on and evaluating the policy implementation and disclosure itself. Patients shared 5) preferences for personal outreach by phone in place of the current use of certified letters. All interviewees discussed 6) issues with execution and 7) costs of the disclosure. CONCLUSIONS: CFIR analysis reveals key problem areas that need to be addresses during disclosure, including: timely communication patterns throughout the organization, establishing a supportive culture prior to implementation, using patient-approved, effective communications strategies during disclosures; providing follow-up support for employees and patients, and sharing lessons learned.

Surgeons' Disclosures of Clinical Adverse Events.

Importance: Surgeons are frequently faced with clinical adverse events owing to the nature of their specialty, yet not all surgeons disclose these events to patients. To sustain open disclosure programs, it is essential to understand how surgeons are disclosing adverse events, factors that are associated with reporting such events, and the effect of disclosure on surgeons. Objective: To quantitatively assess surgeons' reports of disclosure of adverse events and aspects of their experiences with the disclosure process. Design, Setting, and Participants: An observational study was conducted from January 1, 2011, to December 31, 2013, involving a 21-item baseline questionnaire administered to 67 of 75 surgeons (89%) representing 12 specialties at 3 Veterans Affairs medical centers. Sixty-two surveys of their communication about adverse events and experiences with disclosing such events were completed by 35 of these 67 surgeons (52%). Data were analyzed using mixed linear random-effects and logistic regression models. Main Outcomes and Measures: Self-reports of disclosure assessed by 8 items from guidelines and pilot research, surgeons' perceptions of the adverse event, reported personal effects from disclosure, and baseline attitudes toward disclosure. Results: Most of the surgeons completing the web-based surveys (41 responses from men and 21 responses from women) used 5 of the 8 recommended disclosure items: explained why the event happened (55 of 60 surveys [92%]), expressed regret for what happened (52 of 60 [87%]), expressed concern for the patient's welfare (57 of 60 [95%]), disclosed the adverse event within 24 hours (58 of 60 [97%]), and discussed steps taken to treat any subsequent problems (59 of 60 [98%]). Fewer surgeons apologized to patients (33 of 60 [55%]), discussed whether the event was preventable (33 of 60 [55%]), or how recurrences could be prevented (19 of 59 [32%]). Surgeons who were less likely to have discussed prevention (33 of 60 [55%]), those who stated the event was very or extremely serious (40 of 61 surveys [66%]), or reported very or somewhat difficult experiences discussing the event (16 of 61 [26%]) were more likely to have been negatively affected by the event. Surgeons with more negative attitudes about disclosure at baseline reported more anxiety about patients' surgical outcomes or events following disclosure (odds ratio, 1.54; 95% CI, 1.16-2.06). Conclusions and Relevance: Surgeons who reported they were less likely to discuss preventability of the adverse event, or who reported difficult communication experiences, were more negatively affected by disclosure than others. Quality improvement efforts focused on recognizing the association between disclosure and surgeons' well-being may help sustain open disclosure policies.

Sustaining nurse-rapid HIV testing in the U.S. Department of Veterans Affairs: lessons learned from a comparative evaluation.

Routine HIV testing in primary care is now recommended in the United States. The U.S. Department of Veterans Affairs (VA) has increased the number of patients tested for HIV, but overall HIV testing rates remain low. A promising intervention for increasing HIV testing is nurse-initiated rapid testing (NRT). The purpose of this study was to build upon our previous research by implementing NRT in primary care clinics at two geographically distinct VA medical centers, and then conduct an evaluation to identify the barriers and facilitators to implementing and sustaining it. Semistructured telephone interviews were conducted with providers and stakeholders at two VA medical centers, one each on the East Coast and in the Southwest. Fieldnotes were developed following each interview and qualitatively coded for emerging themes. Findings indicate NRT was well integrated in both settings. NRT took little time to conduct, was well received by patients, and did not disrupt clinical scheduling. However, there were some sustainability challenges, including difficulties using the electronic medical record, and the challenges of new care practice structures. Implementing NRT is feasible in VA primary care settings. However, organizational challenges should be taken into account for subsequent efforts to implement NRT in VA primary care settings.

The role of comorbidities in patients' hypertension self-management.

OBJECTIVE: We sought to understand barriers to hypertension self-management in patients with hypertension and comorbidities. METHODS: We conducted semi-structured, qualitative interviews with 48 patients with uncontrolled hypertension and at least one comorbidity to learn about beliefs and behaviors that might affect hypertension self-management. Using a grounded theory strategy, we analyzed interview transcripts detailing patients' hypertension self-management behaviors vis-à-vis a framework including Explanatory Models-a patient's understanding of the pathophysiology, cause, course, treatment, and severity of an illness, such as hypertension. RESULTS: We identified four factors that interfered with hypertension self-management. (1) Interdependence: Participants saw hypertension as interconnected to their comorbidities and subsequently had difficulty separating information about their illnesses. (2) Low priority: Compared to other conditions, participants assigned hypertension a lower priority. (3) Conflicts: Participants struggled with conflicts between hypertension self-management practices and those for comorbidities. (4) Managing multiple medications: Polypharmacy led to patients' confusion and concern about taking medications as prescribed. DISCUSSION: Participants did not experience hypertension as a discreet clinical condition; rather, they self-managed hypertension concurrently with other conditions, leading to a breakdown in hypertension self-management. We provide strategies to address each of the four barriers to better equip providers in addressing their clinically salient concerns.

Understanding the context of patient experiences in order to explore adherence to secondary prevention guidelines after heart surgery.

After coronary artery bypass surgery, many patients do not incorporate healthy behaviors into their postoperative lifestyle or enroll in cardiac rehabilitation, key aspects of secondary prevention. This qualitative study examined patients' post-coronary artery bypass surgery experiences to explore barriers in adhering to dietary and activity guidelines. We conducted semi-structured, in-depth interviews with 30 male patients from a military veteran's hospital, using emergent, thematic analysis to identify experiences that led to poor adherence. RESULTS were grouped according to barriers to diet, activities, and enrolling in cardiac rehabilitation. Overall, understandings of postoperative health, priorities that diverged from guidelines, and the context of household members and other health conditions impacted postoperative health behaviors. Many participants were familiar with secondary prevention guidelines. However, postoperative perceptions of health as well as the context of recovery influenced self-management. Providers must consider a patient's context when discussing secondary prevention. Venues such as cardiac rehabilitation may provide an opportunity to improve adherence to secondary prevention guidelines by expanding available class times, engaging patients' household members, or tailoring recommendations to also address other health conditions.

'It's easier said than done': perspectives on mammography from women with intellectual disabilities.

PURPOSE: Women with intellectual disabilities (or mental retardation) are living longer, receiving primary care in the community, and have equal rates of breast cancer compared with women in the general population, but they have lower rates of mammography. Although several public campaigns have successfully raised the mammography rate for racial and ethnic minority women, they have not penetrated the community of women with intellectual disabilities. No research to date has explored potential barriers to mammography for these women by involving the women themselves as participants. METHODS: We undertook a qualitative study to explore the perceptions and understanding of mammography for women with intellectual disabilities and some of the potential reasons they would or would not have the test. Twenty-seven intellectually disabled women were recruited through a variety of community groups and interviewed using a semistructured interview guide. Data were analyzed using qualitative techniques from grounded theory. RESULTS: Participants in this study described being poorly prepared for mammography: they did not understand its purpose and were not prepared for the logistics of the experience. The latter was more upsetting to participants and contributed to their negative perceptions of mammography. Participants reported feeling unprepared and singled out for being unprepared, despite their desire to have at least 1 mammogram, as do other women their age. CONCLUSIONS: Women with intellectual disabilities perceive mammography differently than do women who do not have intellectual disabilities, and their perception is informed by inadequate knowledge, anxiety, and inadequate preparation. These themes should be considered when planning cancer prevention interventions with this population and when counseling individual women in the clinical setting.

No less a man: reconstructing identity after prostate cancer.

Few diagnoses present as great a challenge to one's life as cancer. Many men each year are confronted with a diagnosis of early stage prostate cancer and find themselves making decisions about treatment in the face of side effects that present often devastating effects, including problems controlling one's urine and an inability to perform sexually. In this paper, we explore the narratives of men who, having chosen and undergone treatment for early stage prostate cancer, are living with the consequences. Faced with what Charmaz calls an 'identity dilemma', how do these men linguistically construct their identities in the face of challenges to their bodily, personal, and social integrity? Drawing upon theories of social languages and Discourses, we examine how men linguistically resolve the identity dilemmas they encounter and in turn construct an identity in response to a question about the quality of their lives in the face of the adverse event of prostate cancer. We present an analysis of the interview narratives of two men and show how they 're-collage' an identity in the face of fundamental changes in their functioning as men. We argue that these men draw upon alternative discourses to construct themselves as whole, competent, and 'no less a man'.

Patients' perceptions of quality of life after treatment for early prostate cancer.

PURPOSE: Treatment for early prostate cancer produces problematic physical side effects, but prior studies have found little influence on patients' perceived health status. We examined psychosocial outcomes of treatment for early prostate cancer. PATIENTS AND METHODS: Patients with previously treated prostate cancer and a reference group of men with a normal prostate-specific antigen (PSA) level and no history of prostate cancer completed questionnaires. Innovative scales assessed behavioral consequences of urinary dysfunction, sexuality, health worry, PSA concern, perceived cancer control, treatment decision making, decision regret, and cancer-related outlook. Urinary, bowel, and sexual dysfunction were assessed with symptom indexes; health status was assessed by the Physical and Mental Summaries of the Short Form (SF-12) Health Survey. RESULTS: Compared with men without prostate cancer, prostate cancer patients reported greater urinary, bowel, and sexual dysfunction, but similar health status. They reported worse problems of urinary control, sexual intimacy and confidence, and masculinity, and greater PSA concern. Perceptions of cancer control and treatment decisions were positive, but varied by treatment: prostatectomy patients indicated the highest and observation patients indicated the lowest cancer control. Bowel and sexual dysfunction were associated with poorer sexual intimacy, masculinity, and perceived cancer control; masculinity and PSA concern were associated with greater confidence in treatment choice; and diminished sexual intimacy and less interest in PSA were associated with greater regret. CONCLUSION: The lack of change in global measures of health status after treatment for early prostate cancer obscures important influences in men's lives; cancer diagnosis and treatment complications may result in complex outcomes. Aggressive treatment may confer confidence in cancer control, yet be countered by diminished intimate relationships and masculinity, which accompany sexual dysfunction.

Measuring patients' perceptions of the outcomes of treatment for early prostate cancer.

BACKGROUND: Compared with careful attention to the physical (eg, urinary, bowel, sexual) dysfunction that may follow treatment, little attention has been given to the behavioral, emotional, and interpersonal changes that the diagnosis of early prostate cancer and subsequent physical dysfunction may bring. OBJECTIVE: To construct patient-centered measures of the outcomes of treatment for early prostate cancer. RESEARCH DESIGN: Qualitative study followed by survey of early prostate cancer patients and group of comparable patients with no history of prostate cancer. Analysis of focus groups identified relevant domains of quality of life, which were represented by Likert scale items included in survey questionnaires. Psychometric analyses of survey data defined scales evaluated with respect to internal consistency and validity. RESULTS: Qualitative analysis identified three domains: urinary control, sexuality, and uncertainty about the cancer and its treatment. Psychometric analysis defined 11 scales. Seven were generically relevant to most older men: urinary control (eg, embarrassment with leakage), sexual intimacy (eg, anxiety about completing intercourse), sexual confidence (eg, comfort with sexuality), marital affection (eg, emotional distance from spouse/partner), masculine self esteem (eg, feeling oneself a whole man), health worry (eg, apprehensiveness about health changes), and PSA concern (eg, closely attending to one's PSA). Four scales were specific to the treatment experience: perceived cancer control, quality of treatment decision making, regret of treatment choice, and cancer-related outlook. CONCLUSION: The scales provide definition and metrics for patient-centered research in this area. They complement measures of physical dysfunction and bring into resolution outcomes of treatment that have gone unnoticed in previous studies.