Communication breakdowns in cancer care are common and represent a failure in patient-centered care. While multiple studies have elicited patients’ perspectives on these breakdowns, little is known about cancer care providers’ attitudes regarding the causes and potential solutions.
To examine providers’ (1) perceptions of the nature and causes of communication breakdowns with patients in cancer care and (2) suggestions for managing and preventing breakdowns.
Qualitative study of nine focus groups held at three sites (Massachusetts, Georgia and Washington).
Fifty-nine providers: 33 % primary care physicians, 14 % oncologists, 36 % nurses, and 17 % nurse practitioners, physician assistants, and others.
Directed content analysis of focus group transcripts.
Providers’ perceptions of the causes of communication breakdowns fell into three categories: causes related to patients, providers, or healthcare systems. Providers perceived that patients sometimes struggle to understand cancer and health-related information, have unrealistic expectations, experience emotional and psychological distress that interferes with information exchange; and may be reticent to share their confusion or concerns. Providers described their own and colleagues’ contributions to these breakdowns as sharing inaccurate, conflicting, or uncoordinated information. Providers also described the difficulty in balancing hope with reality in discussions of prognosis. System issues named by providers included insufficient time with patients, payment systems, and changing protocols that inhibit communication and coordination of care. Potential solutions included greater patient engagement, team coordination, and systems that promote patient feedback.
Providers described multiple causes for communication breakdowns at the patient, provider, and system level. Multi-level interventions that coordinate care and encourage feedback may help to address or prevent communication breakdowns.
patient-centered care; medical errors; care management; cancer
Uropathogenic Escherichia coli (UPEC) is the primary cause of community-acquired urinary tract infections (UTIs). UPEC bind the bladder using type 1 pili, encoded by the fim operon in nearly all E. coli. Assembled type 1 pili terminate in the FimH adhesin, which specifically binds to mannosylated glycoproteins on the bladder epithelium. Expression of type 1 pili is regulated in part by phase-variable inversion of the genomic element containing the fimS promoter, resulting in phase ON (expressing) and OFF (nonexpressing) orientations. Type 1 pili are essential for virulence in murine models of UTI; however, studies of urine samples from human UTI patients demonstrate variable expression of type 1 pili. We provide insight into this paradox by showing that human urine specifically inhibits both expression and function of type 1 pili. Growth in urine induces the fimS phase OFF orientation, preventing fim expression. Urine also contains inhibitors of FimH function, and this inhibition leads to a further bias in fimS orientation toward the phase OFF state. The dual effect of urine on fimS regulation and FimH binding presents a potential barrier to type 1 pilus-mediated colonization and invasion of the bladder epithelium. However, FimH-mediated attachment to human bladder cells during growth in urine reverses these effects such that fim expression remains ON and/or turns ON. Interestingly, FimH inhibitors called mannosides also induce the fimS phase OFF orientation. Thus, the transduction of FimH protein attachment or inhibition into epigenetic regulation of type 1 pilus expression has important implications for the development of therapeutics targeting FimH function.
Urinary tract infections (UTIs) are extremely common infections, frequently caused by uropathogenic Escherichia coli (UPEC), that are treated with antibiotics but often recur. Therefore, UTI treatment both is complicated by and contributes to bacterial antibiotic resistance. Thus, it is important to understand UTI pathogenesis to devise novel strategies and targets for prevention and treatment. Based on evidence from disease epidemiology and mouse models of infection, UPEC relies heavily on type 1 pili to attach to and invade the bladder epithelium during initial stages of UTI. Here, we demonstrate that the negative effect of planktonic growth in human urine on both the function and expression of type 1 pili is overcome by attachment to bladder epithelial cells, representing a strategy to subvert this alternative innate defense mechanism. Furthermore, this dually inhibitory action of urine is a mechanism shared with recently developed anti-type 1 pilus molecules, highlighting the idea that further development of antivirulence strategies targeting pili may be particularly effective for UPEC.
To explore patients’ and family members’ views on communication during cancer care, and to identify those aspects of clinician-patient communication which were most important to patients and family members.
We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory.
Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient’s experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, while excellent listening could foster the relationship. Information exchange and relationship were also integral to decision making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients’ needs beyond the immediate medical encounter were valued.
The complexity of cancer care today suggest that efforts to improve communication must be multi-level, acknowledging and addressing patient, clinician, organizational and policy barriers and facilitators. Measurement tools are needed to assess cancer patients’ and family members’ experiences with communication over the course of cancer care in order to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer.
Chaperone-usher pathway (CUP) pili are extracellular organelles produced by Gram-negative bacteria that mediate bacterial pathogenesis. Small-molecule inhibitors of CUP pili, termed pilicides, were rationally designed and shown to inhibit type 1 or P piliation. Here, we show that pilicide ec240 decreased the levels of type 1, P, and S piliation. Transcriptomic and proteomic analyses using the cystitis isolate UTI89 revealed that ec240 dysregulated CUP pili and decreased motility. Paradoxically, the transcript levels of P and S pilus genes were increased during growth in ec240, even though the level of P and S piliation decreased. In contrast, the most downregulated transcripts after growth in ec240 were from the type 1 pilus genes. Type 1 pilus expression is controlled by inversion of the fimS promoter element, which can oscillate between phase on and phase off orientations. ec240 induced the fimS phase off orientation, and this effect was necessary for the majority of ec240’s inhibition of type 1 piliation. ec240 increased levels of the transcriptional regulators SfaB and PapB, which were shown to induce the fimS promoter phase off orientation. Furthermore, the effect of ec240 on motility was abolished in the absence of the SfaB, PapB, SfaX, and PapX regulators. In contrast to the effects of ec240, deletion of the type 1 pilus operon led to increased S and P piliation and motility. Thus, ec240 dysregulated several uropathogenic Escherichia coli (UPEC) virulence factors through different mechanisms and independent of its effects on type 1 pilus biogenesis and may have potential as an antivirulence compound.
CUP pili and flagella play active roles in the pathogenesis of a variety of Gram-negative bacterial infections, including urinary tract infections mediated by UPEC. These are extremely common infections that are often recurrent and increasingly caused by antibiotic-resistant organisms. Preventing piliation and motility through altered regulation and assembly of these important virulence factors could aid in the development of novel therapeutics. This study increases our understanding of the regulation of these virulence factors, providing new avenues by which to target their expression.
To assess the impact of Guide to Decide (GtD), a web-based, personally-tailored decision aid designed to inform women’s decisions about prophylactic tamoxifen and raloxifene use.
Postmenopausal women, age 46–74, with BCRAT 5-year risk ≥1.66% and no prior history of breast cancer were randomized to one of three study arms: intervention (n = 690), Time 1 control (n = 160), or 3-month control (n = 162). Intervention participants viewed GtD prior to completing a post-test and 3 month follow-up assessment. Controls did not. We assessed the impact of GtD on women’s decisional conflict levels and treatment decision behavior at post-test and at 3 months, respectively.
Intervention participants had significantly lower decisional conflict levels at post-test (p < 0.001) and significantly higher odds of making a decision about whether or not to take prophylactic tamoxifen or raloxifene at 3-month follow-up (p < 0.001) compared to control participants.
GtD lowered decisional conflict and helped women at high risk of breast cancer decide whether to take prophylactic tamoxifen or raloxifene to reduce their cancer risk.
Web-based, tailored decision aids should be used more routinely to facilitate informed medical decisions, reduce patients’ decisional conflict, and empower patients to choose the treatment strategy that best reflects their own values.
Decision aids; Tamoxifen; Raloxifene; Breast cancer prevention; Tailoring
We sought to examine issues of generalizability in research on adolescent and young adult (AYA) cancer survivorship that relies on using community-based healthcare delivery system data.
Individuals aged 15 to 39 diagnosed with cancer between 1992 and 2006 were identified using data from community-based healthcare systems in California and Seattle. Loss to follow-up was defined as the first disenrollment (the end) of membership in the healthcare systems after cancer. Censoring occurred at death or study end (2009). We used Kaplan–Meier analysis to quantify follow-up, and multiple Cox regression to examine the association of follow-up loss with demographic and cancer characteristics.
Of 6828 eligible AYAs, most (93%) were aged between 20 and 39 years at diagnosis; 62% were female and 39% were non-White. Solid tumors accounted for 81% of diagnoses. The majority (89%) of patients continued to be members of the healthcare systems and available for follow-up 1 year after diagnosis. Approximately 60% remained enrolled 5 years after diagnosis. Loss to follow-up was associated with younger age at diagnosis, male gender, and African American or Hispanic race/ethnicity.
Data from community-based healthcare delivery systems offer an efficient way to identify large and diverse samples of AYA-onset cancer survivors. Differential loss to follow-up can threaten the generalizability of results from these studies and should be assessed quantitatively. Healthcare system data offer an alternative to studies requiring direct contact with participants.
survivorship; epidemiologic methods; healthcare research; bias
Guidelines on apology and disclosure after adverse events and errors have been in place for over five years. This study examines whether patients consider recommended responses to be appropriate and desirable, and whether clinicians' actions after adverse events are consistent with recommendations.
Patients who believed that something had gone wrong during their cancer care were identified. During in-depth interviews, patients described the event, clinicians' responses, and their reactions.
78 patients were interviewed. Patients' valued apology and expressions of remorse, empathy and caring, explanation, acknowledgement of responsibility, and efforts to prevent recurrences, but these key elements were often missing. For many patients, actions and evidence of clinician learning were most important.
Patients' reports of apology and disclosure when they believe something has gone wrong in their care suggest that clinicians' responses continue to fall short of expectations.
Clinicians preparing to talk with patients after an adverse event or medical error should be aware that patients expect their actions to be congruent with their words of apology and caring. Healthcare systems need to support clinicians throughout the disclosure process, and facilitate both system and individual learning to prevent recurrences.
This project aimed to develop an open-access website providing adaptable resources to facilitate best practices for multisite research from initiation to closeout.
A web-based assessment was sent to the leadership of the Clinical and Translational Science Award (CTSA) Community Engagement Key Functions Committee (n = 38) and the CTSA-affiliated Primary Care Practice-based Research Networks (PBRN, n = 55). Respondents rated the benefits and barriers of multisite research, the utility of available resources, and indicated their level of interest in unavailable resources. Then, existing research resources were evaluated for relevance to multisite research, adaptability to other projects, and source credibility.
Fifty-five (59%) of invited participants completed the survey. Top perceived benefits of multisite research were the ability to conduct community-relevant research through academic–community partnerships (34%) and accelerating translation of research into practice (31%). Top perceived barriers were lack of research infrastructure to support PBRNs and community partners (31%) and inadequate funding to support multisite collaborations (26%). Over 200 resources were evaluated, of which 120 unique resources were included in the website.
The PRIMER Research Toolkit (www.researchtoolkit.org) provides an array of peer-reviewed resources to facilitate translational research for the conduct of multisite studies within PBRNs and community-based organizations.
practice-based research network; clinical research; resource
Few studies have examined how specific emotions may affect decision-making processes. Anxiety may be especially relevant in health decisions such as those related to cancer in which thoughts of illness or death may be abundant. We examined associations between women’s anxiety about developing breast cancer and variables related to their decision to take a medication that could reduce their chances of the disease. Six-hundred and thirty-two American women, who had an increased risk of breast cancer, reviewed a web-based decision aid about tamoxifen. We examined associations between their baseline, self-reported anxiety about developing the disease and post decision aid measures including knowledge about tamoxifen, attitude toward the medication, and behavioral intentions to look for more information and take the medication. Results showed that anxiety was not associated with knowledge about tamoxifen, but it was associated with attitude toward the medication such that women who were more anxious about developing breast cancer were more likely to think the benefits were worth the risks. Greater anxiety was also associated with greater behavioral intentions to look for additional information and take the medication in the next few months. Secondary analyses showed that behavioral intentions were related to knowledge of tamoxifen and attitude toward the medication only for women who were reporting low levels of anxiety. Overall, the findings suggest that anxiety about breast cancer may motivate interest in tamoxifen and not necessarily through affecting knowledge or attitudes.
U.S.; Anxiety; Behavioral decision-making; Breast cancer; Tamoxifen
To examine the psychometric properties of two new health literacy tests, and to evaluate score validity.
Adults aged 40 to 71 completed the Cancer Message Literacy Test-Listening (CMLT- Listening), the Cancer Message Literacy Test-Reading (CMLT-Reading), the REALM, the Lipkus numeracy test, a brief knowledge test (developed for this study) and five brief cognitive tests. Participants also self-reported educational achievement, current health, reading ability, ability to understand spoken information, and language spoken at home.
Score reliabilities were good (CMLT-Listening: alpha = .84) to adequate (CMLT-Reading: alpha =.75). Scores on both CMLT tests were positively and significantly correlated with scores on the REALM, numeracy, cancer knowledge and the cognitive tests. Mean CMLT scores varied as predicted according to educational level, language spoken at home, self-rated health, self-reported reading, and self-rated ability to comprehend spoken information.
The psychometric findings for both tests are promising. Scores appear to be valid indicators of comprehension of spoken and written health messages about cancer prevention and screening.
The CMLT-Listening will facilitate research into comprehension of spoken health messages, and together with the CMLT-Reading will allow researchers to examine the unique contributions of listening and reading comprehension to health-related decisions and behaviors.
Health literacy; Cancer prevention; Psychometrics
Tamoxifen and raloxifene are chemopreventive drugs that can reduce women's relative risk of primary breast cancer by 50%; however, most women eligible for these drugs have chosen not to take them. The reasons for low uptake may be related to women's knowledge or attitudes towards the drugs. We aimed to examine the impact of an online breast cancer chemoprevention decision aid (DA) on informed intentions and decisions of women at high risk of breast cancer.
We conducted a randomized clinical trial, assessing the effect of a DA about breast cancer chemoprevention on informed choices about chemoprevention. Women (n = 585), 46- to 74-years old old, completed online baseline, post-test, and three-month follow-up questionnaires. Participants were randomly assigned to either an intervention group, a standard control group that answered questions about chemoprevention at baseline, or a three-month control group that did not answer questions about chemoprevention at baseline. The main outcome measures were whether women's intentions and decisions regarding chemoprevention drugs were informed, and whether women who viewed the DA were more likely to make informed decisions than women who did not view the DA, using a dichotomous composite variable 'informed choice' (yes/no) to classify informed decisions as those reflecting sufficient knowledge and concordance between a woman's decision and relevant attitudes.
Analyses showed that more intervention than standard control participants (52.7% versus 5.9%) made informed decisions at post-test, P <0.001. At the three-month follow-up, differences in rates of informed choice between intervention (16.9%) and both control groups (11.8% and 8.0%) were statistically non-significant, P = 0.067.
The DA increased informed decision making about breast cancer chemoprevention, although the impact on knowledge diminished over time. This study was not designed to determine how much knowledge decision makers must retain over time. Examining informed decisions increases understanding of the impact of DAs. A standard for defining and measuring sufficient knowledge for informed decisions is needed.
Although tamoxifen can prevent primary breast cancer, few women use it as a preventive measure. A second option, raloxifene, has recently been approved. The objective of the study was to determine women’s interest in tamoxifen and raloxifene after reading a decision aid describing the risks and benefits of each medication. Women with 5-year risk of breast cancer ≥1.66 from two large health maintenance organizations were randomized to receive a decision aid versus usual care. After reading an on-line decision aid that discussed the risks and benefits of tamoxifen and raloxifene, women completed measures of risk perception, decisional conflict, behavioral intentions and actual behavior related to tamoxifen and raloxifene. 3 months following the intervention, 8.1% of participants had looked for additional information about breast cancer prevention drugs and 1.8% had talked to their doctor about tamoxifen and/or raloxifene. The majority, 54.7%, had decided to not take either drug, 0.5% had started raloxifene, and none had started tamoxifen. Participants were not particularly worried about taking tamoxifen or raloxifene and did not perceive significant benefits from taking these drugs. Over 50% did not perceive a change in their risk of getting breast cancer if they took tamoxifen or raloxifene. After reading a DA about tamoxifen and raloxifene, few women were interested in taking either breast cancer prevention drug.
decision aids; patient education; tamoxifen; raloxifene; breast cancer prevention
Tamoxifen reduces primary breast cancer incidence, yet has serious side effects. To date, few women with increased breast cancer risk have elected to use tamoxifen for chemoprevention. The objective of the study was to determine women’s knowledge of and attitudes toward tamoxifen following exposure to a tailored decision aid (DA).
632 women with a 5-year risk of breast cancer ≥1.66% (Mean=2.56, range=1.7-17.3) were recruited from 2 healthcare organizations. Participants viewed an online DA that informed them about their 5-year risk of breast cancer and presented individually-tailored content depicting the risks/benefits of tamoxifen prophylaxis. Outcome measures included behavioral intentions (to seek additional information about tamoxifen, to talk to a physician about tamoxifen, and to take tamoxifen); knowledge; and perceived risks and benefits of tamoxifen.
After viewing the DA, 29% of participants said they intended to seek more information or talk to their doctor about tamoxifen, and only 6% believed they would take tamoxifen. Knowledge was considerable, with 63% of women answering at least 5 of 6 knowledge questions correctly. Participants were concerned about the risks of tamoxifen and many believed that the benefits of tamoxifen did not outweigh the risks.
This study is the largest to date to test women’s preferences for taking tamoxifen and one of the largest to have tested the impact of a tailored decision aid. After viewing the DA, women demonstrated good understanding of tamoxifen’s risks and benefits, but most were not interested in taking tamoxifen for breast cancer chemoprevention.
decision aids; patient education; tamoxifen; breast cancer prevention
Ability to understand spoken health information is an important facet of health literacy, but to date, no instrument has been available to quantify patients’ ability in this area. We sought to develop a test to assess comprehension of spoken health messages related to cancer prevention and screening to fill this gap, and a complementary test of comprehension of written health messages.
We used the Sentence Verification Technique to write items based on realistic health messages about cancer prevention and screening, including media messages, clinical encounters and clinical print materials. Items were reviewed, revised, and pre-tested. Adults aged 40 to 70 participated in a pilot administration in Georgia, Hawaii, and Massachusetts.
The Cancer Message Literacy Test-Listening is self-administered via touchscreen laptop computer. No reading is required. It takes approximately 1 hour. The Cancer Message Literacy Test-Reading is self-administered on paper. It takes approximately 10 minutes.
These two new tests will allow researchers to assess comprehension of spoken health messages, to examine the relationship between listening and reading literacy, and to explore the impact of each form of literacy on health-related outcomes.
Researchers and clinicians now have a means of measuring comprehension of spoken health information.
Health literacy; Cancer prevention; Instrument development
Chronic and recurrent urinary tract infections pose a serious medical problem because there are few effective treatment options. Patients with chronic urinary tract infections are commonly treated with long-term prophylactic antibiotics that promote the development of antibiotic-resistant forms of uropathogenic Escherichia coli (UPEC), further complicating treatment. We developed small–molecular weight compounds termed mannosides that specifically inhibit the FimH type 1 pilus lectin of UPEC, which mediates bacterial colonization, invasion, and formation of recalcitrant intracellular bacterial communities in the bladder epithelium. Here, we optimized these compounds for oral bioavailability and demonstrated their fast-acting efficacy in treating chronic urinary tract infections in a preclinical murine model. These compounds also prevented infection in vivo when given prophylactically and strongly potentiated the activity of the current standard of care therapy, trimethoprim-sulfamethoxazole, against clinically resistant PBC-1 UPEC bacteria. These compounds have therapeutic efficacy after oral administration for the treatment of established urinary tract infections in vivo. Their unique mechanism of action—targeting the pilus tip adhesin FimH—circumvents the conventional requirement for drug penetration of the outer membrane, minimizing the potential for the development of resistance. The small–molecular weight compounds described herein promise to provide substantial benefit to women suffering from chronic and recurrent urinary tract infections.
Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events.
Patients and Methods
In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something “went wrong” during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event.
Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns.
Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.
Improving health literacy is one key to buoying our nation’s troubled health care system. As system-level health literacy improvement strategies take the stage among national priorities for health care, the patient-centered medical home (PCMH) model of care emerges as a compelling avenue for their widespread implementation. With a shared focus on effective communication and team-based care organized around patient needs, health literacy principles and the PCMH are well aligned. However, their synergy has received little attention, even as PCMH demonstration projects and health literacy interventions spring up nationwide. While many health literacy interventions are limited by their focus on a single point along the continuum of care, creating a “room” for health literacy within the PCMH may finally provide a multi-dimensional, system-level approach to tackling the full range of health literacy challenges. Increasing uptake coupled with federal support and financial incentives further boosts the model’s potential for advancing health literacy. On the journey toward a revitalized health care system, integrating health literacy into the PCMH presents a promising opportunity that deserves consideration.
communication; health literacy; patient-centered care; medical home
Uropathogenic Escherichia coli (UPEC), which accounts for 85% of urinary tract infections (UTI), assembles biofilms in diverse environments, including the host. Besides forming biofilms on biotic surfaces and catheters, UPEC has evolved an intracellular pathogenic cascade that culminates in the formation of biofilm-like intracellular bacterial communities (IBCs) within bladder epithelial cells. Rapid bacterial replication during IBC formation augments a build-up in bacterial numbers and persistence within the host. Relatively little is known about factors mediating UPEC biofilm formation and how these overlap with IBC formation. To address this gap, we screened a UPEC transposon mutant library in three in vitro biofilm conditions: Luria broth (LB)-polyvinyl chloride (PVC), YESCA (yeast extract-Casamino Acids)-PVC, and YESCA-pellicle that are dependent on type 1 pili (LB) and curli (YESCA), respectively. Flagella are important in all three conditions. Mutants were identified that had biofilm defects in all three conditions but had no significant effects on the expression of type 1 pili, curli, or flagella. Thus, this approach uncovered a comprehensive inventory of novel effectors and regulators that are involved in UPEC biofilm formation under multiple conditions. A subset of these mutants was found to be dramatically attenuated and unable to form IBCs in a murine model of UTI. Collectively, this study expands our insights into UPEC multicellular behavior that may provide insights into IBC formation and virulence.
Over the past two decades, the health research enterprise has matured rapidly, and many recognize an urgent need to translate pertinent research results into practice, to help improve the quality, accessibility, and affordability of U.S. health care. Streamlining research operations would speed translation, particularly for multi-site collaborations. However, the culture of research discourages reusing or adapting existing resources or study materials. Too often, researchers start studies and multi-site collaborations from scratch—reinventing the wheel. Our team developed a compendium of resources to address inefficiencies and researchers’ unmet needs and compiled them in a research toolkit website (www.ResearchToolkit.org). Through our work, we identified philosophical and operational issues related to disseminating the toolkit to the research community. We explore these issues here, with implications for the nation’s investment in biomedical research.
The concept of patient-centered care has received increased attention in recent years and is now considered an essential aspiration of high-quality health care systems. Because of technologic advances as well as changes in the organization and financing of care delivery, contemporary health care has evolved tremendously since the concept of patient-centeredness was introduced in the late 1980s. Historically, those advocating patient-centered care have focused on the relationship between the patient and the physician or care team. Although that relationship is still integral, changes to the health care system suggest that a broader range of factors may affect the patient-centeredness of health care experiences. A multidimensional conceptualization of patient-centered care and examples from our health care system illustrate how clinical, structural, and interpersonal attributes can collectively influence the patient's experience. The proposed framework is designed to enable any health system to identify ways in which care could be more patient-centered and move toward a goal of making it a “systems property.”
The cancer care system is increasingly complex, marked by multiple hand-offs between primary care and specialty providers, inadequate communication among providers, and lack of clarity about a “medical home” (the ideal accountable care provider) for cancer patients. Patients and families often cite such difficulties as information deficits, uncoordinated care, and insufficient psychosocial support. This article presents a review of the challenges of delivering well coordinated, patient-centered cancer care in a complex modern healthcare system. An examination is made of the potential role of information technology (IT) advances to help both providers and patients. Using the published literature as background, a review is provided of selected work that is underway to improve communication, coordination, and quality of care. Also discussed are additional challenges and opportunities to advancing understanding of how patient data, provider and patient involvement, and informatics innovations can support high-quality cancer care.
Many health communications target African Americans in an attempt to remediate race-based health disparities. Such materials often assume that African Americans are culturally homogeneous; however, research indicates that African Americans are heterogeneous in their attitudes, behaviors, and beliefs. The Black Identity Classification Scale (BICS) was designed as a telephone-administered tool to segment African American audiences into 16 ethnic identity types. The BICS was pretested using focus groups, telephone pretests, and a pilot study (n=306). The final scale was then administered to 625 Black adults participating in a dietary intervention study, where it generally demonstrated good internal consistency reliability. The construct validity of the BICS was also explored by comparing participants’ responses to culturally associated survey items. The distribution of the 16 BICS identity types in the intervention study is presented, as well as select characteristics for participants with core identity components. Although additional research is warranted, these findings suggest that the BICS has good psychometric properties and may be an effective tool for identifying African American audience segments.
Women at high risk of breast cancer face a difficult decision whether to take medications like tamoxifen to prevent a first breast cancer diagnosis. Decision aids (DAs) offer a promising method of helping them make this decision. But concern lingers that DAs might introduce cognitive biases.
We recruited 663 women at high risk of breast cancer and presented them with a DA designed to experimentally test potential methods of identifying and reducing cognitive biases that could influence this decision, by varying specific aspects of the DA across participants in a factorial design.
Participants were susceptible to a cognitive bias—an order effect—such that those who learned first about the risks of tamoxifen thought more favorably of the drug than women who learned first about the benefits. This order effect was eliminated among women who received additional information about competing health risks.
We discovered that the order of risk/benefit information influenced women’s perceptions of tamoxifen. This bias was eliminated by providing contextual information about competing health risks.
Changes in several regions within the brain have been associated with progression from healthy aging to Alzheimer's disease (AD), including the hippocampus, entorhinal cortex, and more recently, the inferior parietal lobule (IPL). In this study, the IPL was divided into three subregions: the gyrus, the banks of the sulcus, and the fundus to determine if these regions are independent of medial temporal regions in the progression of AD. Participants of the Alzheimer's Disease Neuroimaging Initiative (ADNI; n=54) underwent a structural MRI scan and neuropsychological exam, and were categorized as normal controls, mild cognitively impaired (MCI), or AD. FreeSurfer was initially used to identify the boundaries of the IPL. Each subregion was then manually traced based on FreeSurfer curvature intensities. Multivariate analyses of variance were used to compare groups. Results suggest that changes in thickness of the banks of the inferior parietal lobule are occurring early in the progression from normal to MCI, followed by changes in the gyrus and fundus, and these measures are related to neuropsychological performance.
Alzheimer's disease; MCI; MRI; Inferior parietal lobule
The improvement of health outcomes for both individual patients and entire populations requires improvement in the array of structures that support decisions and activities by healthcare practitioners. Yet, many gaps remain in how even sophisticated healthcare organizations manage knowledge. Here we describe the value of a trans-institutional network for identifying and capturing how-to knowledge that contributes to improved outcomes. Organizing and sharing on-the-job experience would concentrate and organize the activities of individual practitioners and subject their rapid cycle improvement testing and refinement to a form of collective intelligence for subsequent diffusion back through the network. We use the existing Cancer Research Network as an example of how a loosely structured consortium of healthcare delivery organizations could create and grow an implementation registry to foster innovation and implementation success by communicating what works, how, and which practitioners are using each innovation. We focus on the principles and parameters that could be used as a basis for infrastructure design. As experiential knowledge from across institutions builds within such a system, the system could ultimately motivate rapid learning and adoption of best practices. Implications for research about healthcare IT, invention, and organizational learning are discussed.
Implementation registry; Communities of practice; Healthcare practice improvement; Cancer Research Network