Socioeconomic and Demographic Disparities in Caregiving Intensity and Quality of Life in Informal Caregivers: A First Look at the National Study of Caregiving.

Informal caregiving is an integral component of the health care system, saving the national economy more than $522 billion annually. The current study examined how the association between caregiving intensity and caregiver quality of life varies by sociodemographic factors through a secondary analysis of the National Study of Caregiving. Generalized linear models assessed the associations among four aspects of caregiving intensity, three aspects of caregiver quality of life, and key sociodemographic factors. Compared to White individuals, Black individuals had higher levels of overall caregiving intensity (ß = 0.293, 95% confidence interval [CI] [0.140, 0.447]), number of instrumental activities of daily living performed (ß = 0.060, 95% CI [0.030, 0.090]), and hours spent caregiving per month (ß = 0.025, 95% CI [0.002, 0.049]), yet experienced significantly fewer negative impacts on quality of life. Understanding how informal caregiving affects caregiver quality of life is critical to inform public health policies and programs designed to support caregivers and protect this critical component of the U.S. health care system. [Journal of Gerontological Nursing, 43(6), 17-24.].

Engaging primary care patients to use a patient-centered personal health record.

PURPOSE: Health care leaders encourage clinicians to offer portals that enable patients to access personal health records, but implementation has been a challenge. Although large integrated health systems have promoted use through costly advertising campaigns, other implementation methods are needed for small to medium-sized practices where most patients receive their care. METHODS: We conducted a mixed methods assessment of a proactive implementation strategy for a patient portal (an interactive preventive health record [IPHR]) offered by 8 primary care practices. The practices implemented a series of learning collaboratives with practice champions and redesigned workflow to integrate portal use into care. Practice implementation strategies, portal use, and factors influencing use were assessed prospectively. RESULTS: A proactive and customized implementation strategy designed by practices resulted in 25.6% of patients using the IPHR, with the rate increasing 1.0% per month over 31 months. Fully 23.5% of IPHR users signed up within 1 day of their office visit. Older patients and patients with comorbidities were more likely to use the IPHR, but blacks and Hispanics were less likely. Older age diminished as a factor after adjusting for comorbidities. Implementation by practice varied considerably (from 22.1% to 27.9%, P <.001) based on clinician characteristics and workflow innovations adopted by practices to enhance uptake. CONCLUSIONS: By directly engaging patients to use a portal and supporting practices to integrate use into care, primary care practices can match or potentially surpass the usage rates achieved by large health systems.

Interactive preventive health record to enhance delivery of recommended care: a randomized trial.

PURPOSE: Americans receive only one-half of recommended preventive services. Information technologies have been advocated to engage patients. We tested the effectiveness of an interactive preventive health record (IPHR) that links patients to their clinician's record, explains information in lay language, displays tailored recommendations and educational resources, and generates reminders. METHODS: This randomized controlled trial involved 8 primary care practices. Four thousand five hundred patients were randomly selected to receive a mailed invitation to use the IPHR or usual care. Outcomes were measured using patient surveys and electronic medical record data and included IPHR use and service delivery. Comparisons were made between invited and usual-care patients and between users and nonusers among those invited to use the IPHR. RESULTS: At 4 and 16 months, 229 (10.2%) and 378 (16.8%) of invited patients used the IPHR. The proportion of patients up-to-date with all services increased between baseline and 16 months by 3.8% among intervention patients (from 11.4% to 15.2%, P <.001) and by 1.5% among control patients (from 11.1% to 12.6%, P = .07), a difference of 2.3% (P = .05). Greater increases were observed among patients who used the IPHR. At 16 months, 25.1% of users were up-to-date with all services, double the rate among nonusers. At 4 months, delivery of colorectal, breast, and cervical cancer screening increased by 19%, 15%, and 13%, respectively, among users. CONCLUSIONS: Information systems that feature patient-centered functionality, such as the IPHR, have potential to increase preventive service delivery. Engaging more patients to use systems could have important public health benefits.

Designing a patient-centered personal health record to promote preventive care.

BACKGROUND: Evidence-based preventive services offer profound health benefits, yet Americans receive only half of indicated care. A variety of government and specialty society policy initiatives are promoting the adoption of information technologies to engage patients in their care, such as personal health records, but current systems may not utilize the technology's full potential. METHODS: Using a previously described model to make information technology more patient-centered, we developed an interactive preventive health record (IPHR) designed to more deeply engage patients in preventive care and health promotion. We recruited 14 primary care practices to promote the IPHR to all adult patients and sought practice and patient input in designing the IPHR to ensure its usability, salience, and generalizability. The input involved patient usability tests, practice workflow observations, learning collaboratives, and patient feedback. Use of the IPHR was measured using practice appointment and IPHR databases. RESULTS: The IPHR that emerged from this process generates tailored patient recommendations based on guidelines from the U.S. Preventive Services Task Force and other organizations. It extracts clinical data from the practices' electronic medical record and obtains health risk assessment information from patients. Clinical content is translated and explained in lay language. Recommendations review the benefits and uncertainties of services and possible actions for patients and clinicians. Embedded in recommendations are self management tools, risk calculators, decision aids, and community resources--selected to match patient's clinical circumstances. Within six months, practices had encouraged 14.4% of patients to use the IPHR (ranging from 1.5% to 28.3% across the 14 practices). Practices successfully incorporated the IPHR into workflow, using it to prepare patients for visits, augment health behavior counseling, explain test results, automatically issue patient reminders for overdue services, prompt clinicians about needed services, and formulate personalized prevention plans. CONCLUSIONS: The IPHR demonstrates that a patient-centered personal health record that interfaces with the electronic medical record can give patients a high level of individualized guidance and be successfully adopted by busy primary care practices. Further study and refinement are necessary to make information systems even more patient-centered and to demonstrate their impact on care. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT00589173.

Health information seeking, receipt, and use in diabetes self-management.

PURPOSE: Diabetes self-management is essential for diabetes control, yet little is known about patient preferences for sources of health information or about the extent to which information is sought directly or received passively through various media sources. The aim of this qualitative study was to identify how individuals with diabetes seek and use health care information. METHODS: Using a health information model to guide our research, we conducted 9 focus groups with 46 adults with a diagnosis of diabetes and then analyzed the transcripts and notes from these focus groups. RESULTS: Five themes emerged: (1) passive receipt of health information about diabetes is an important aspect of health information behavior; (2) patients weave their own information web depending on their disease trajectory; (3) patients' personal relationships help them understand and use this information; (4) a relationship with a health care professional is needed to cope with complicated and sometimes conflicting information; and (5) health literacy makes a difference in patients' ability to understand and use information. CONCLUSIONS: Patients make decisions about diabetes self-management depending on their current needs, seeking and incorporating diverse information sources not traditionally viewed as providing health information. Based on our findings, we have developed a new health information model that reflects both the nonlinear nature of health information-seeking behavior and the interplay of both active information seeking and passive receipt of information.

Baby BEEP: A randomized controlled trial of nurses' individualized social support for poor rural pregnant smokers.

OBJECTIVES: We tested the effect of nurse-delivered telephone individualized social support ("Baby BEEP") and eight mailed prenatal smoking cessation booklets singly and in combination (2 x 2 factorial design) on smoking cessation in low-income rural pregnant women (N = 695; 75% participation). METHODS: Participants randomized to Baby BEEP groups (n = 345) received weekly calls throughout pregnancy plus 24-7 beeper access. Saliva cotinine samples were collected monthly from all groups by other nurses at home visits up to 6 weeks post-delivery. Primary outcomes were point prevalence abstinence (cotinine < 30 ng/ml) in late pregnancy and post-delivery. RESULTS: Only 47 women were lost to follow-up. Intent-to-treat analyses showed no difference across intervention groups (17-22%, late pregnancy; 11-13.5%, postpartum), and no difference from the controls (17%, late pregnancy; 13%, postpartum). Post hoc analyses of study completers suggested a four percentage-point advantage for the intervention groups over controls in producing early and mid-pregnancy continuous abstainers. Partner smoking had no effect on late pregnancy abstinence (OR = 1.7, 95% CI = 0.95, 3.2), but post-delivery, the effect was pronounced (OR = 3.2, 95% CI = 1.8, 5.9). CONCLUSIONS: High abstinence rates in the controls indicate the power of biologic monitoring and home visits to assess stress, support, depression, and intimate partner violence; these elements plus booklets were as effective as more intensive interventions. Targeting partners who smoke is needed.

Engaging Patients in Decisions About Cancer Screening: Exploring the Decision Journey Through the Use of a Patient Portal.

INTRODUCTION: Engaging patients to make informed choices is paramount but difficult in busy practices. This study sought to engage patients outside the clinical setting to better understand how they approach cancer screening decisions, including their primary concerns and their preferences for finalizing their decision. METHODS: Twelve primary care practices offering patients an online personal health record invited eligible patients to complete a 17-item online interactive module. Among 11,458 registered users, invitations to complete the module were sent to adults aged 50-74 years who were overdue for colorectal cancer screening and to women aged 40-49 years and men aged 55-69 who had not undergone a recent mammogram or prostate-specific antigen test, respectively. RESULTS: The module was started by 2,355 patients and completed by 903 patients. Most respondents (76.8%) knew they were eligible for screening. Preferred next steps were talking to the clinician (76.6%), reading/research (28.6%), and consulting trusted friends/family (16.4%). Priority topics included how much screening improves life expectancy, comparative test performance, and the prevalence/health risks of the cancer. Leading fears were getting cancer/delayed detection (79.2%), abnormal results (40.5%), and testing complications (39.1%), the last referring to false test results, medical complications, or unnecessary treatments. Men eligible for prostate-specific antigen screening were more likely than women eligible for mammography to express concerns about testing complications and to prioritize weighing pros and cons over gut feelings (p<0.05). CONCLUSIONS: Although this sample was predisposed to screening, most patients wanted help in finalizing their decision. Many wanted to weigh the pros and cons and expressed fears of potential harms from screening. Understanding how patients approach decisions may help design more effective engagement strategies.

Rural hospital patient safety systems implementation in two States.

CONTEXT AND PURPOSE: With heightened attention to medical errors and patient safety, we surveyed Utah and Missouri hospitals to assess the "state of the art" in patient safety systems and identify changes over time. This study examines differences between urban and rural hospitals. METHODS: Survey of all acute care hospitals in Utah and Missouri at 2 points in time (2002 and 2004). Factor analysis was used to develop 7 latent variables to summarize the data, comparing rural and urban hospitals at each point in time and on change between the 2 survey times. FINDINGS: On 3 of the 7 latent variables, there was a statistically significant difference between rural and urban hospitals at the first survey, with rural hospitals indicating lower levels of implementation. The differences remained present on 2 of those latent variables at the second survey. In both cases, 1 of those variables was computerized physician order entry (CPOE) systems. Rural hospitals reported more improvement in systems implementation between the 2 survey times, with the difference statistically significant on 1 of the 7 latent variables; the greatest improvement was in implementation of "root cause analysis." CONCLUSIONS: Adoption of patient safety systems overall is low. Although rates of adoption among rural versus urban hospitals appear lower, most differences are not statistically significant; the gap between rural and urban hospitals relative to quality measures is narrowing. Change in rural and urban hospitals is in the right direction, with the rate of change higher in rural hospitals for many systems.

Hospital patient safety: characteristics of best-performing hospitals.

Hospitals have made slow progress in meeting the Institute of Medicine's patient safety goals, and implementation of safety systems has been inconsistent. The next logical question is this: What organizational characteristics predict greater implementation of patient safety systems, in terms of both extent of systems and progress over time? To answer this question, a survey was administered to 107 hospitals at two points in time. Data were consolidated into seven latent variables measuring progress in specific areas. Using the overall measure, Joint Commission-accredited hospitals showed statistically significant improvement, as reflected in the sum score (p = .01); nonaccredited hospitals did not show statistically significant improvement (p = .21). Joint Commission accreditation was the key predictor of patient safety system implementation. Management type and urban/rural status were secondary predictors. Several factors may account for the strong association between accreditation and patient safety system implementation. In 2003, the Joint Commission began tying accreditation to patient safety goals. Also, Joint Commission data are now widely available to the public and may stimulate hospitals to address safety issues. Healthcare executives, hospital trustees, regulators, and policymakers should encourage Joint Commission accreditation and reward hospital efforts toward meeting Joint Commission standards. The Joint Commission should continually strive to maintain evidence-based and state-of-the-art standards that advance the aim of providing the best possible care for hospitalized patients.

Coping With Prediagnosis Symptoms of Colorectal Cancer: A Study of 244 Individuals With Recent Diagnosis.

BACKGROUND: Colorectal cancer (CRC) symptoms are often vague and vary in severity, intensity, type, and timing. Receipt of medical care is dependent on symptom recognition and assessment, which may impede timely diagnosis. OBJECTIVE: The aim of this study was to describe and categorize how CRC patients coped with symptoms prior to seeking medical care, examine sociodemographic differences in these coping strategies, and determine the strategies associated with time to seek medical care and overall time to diagnosis. METHODS: Two hundred forty-four white and African American patients in Virginia and Ohio who received a diagnosis of CRC and who experienced symptoms prior to diagnosis were administered a semistructured interview and the Brief COPE questionnaire. RESULTS: Eighty-three percent used more than 1 coping strategy. Common symptom-specific coping strategies were to "wait-and-see," self-treat, and rationalize symptoms. Males were more likely to wait and see (P < .001); African Americans and Medicaid recipients were more likely to self-treat via lifestyle changes (P's < .01). Younger individuals (<50 years old) had higher Brief COPE reframing, planning, and humor scores; those with lower education and income had higher denial scores (P's < .01). Using more symptom-specific coping strategies and engaging in avoidance/denial were associated with longer time to seek medical care and overall time to diagnosis (P's < .01). CONCLUSIONS: Individuals experiencing CRC symptoms use multiple, diverse coping strategies that are influenced by sociodemographic characteristics. Denial is particularly relevant for delay in seeking care and timely diagnosis. IMPLICATIONS FOR PRACTICE: Public health campaigns could focus on secondary prevention of CRC by targeting at-risk groups such as males, African Americans, or Medicaid recipients, who choose waiting or self-treatment in response to initial symptoms.

Education and patient preferences for treating type 2 diabetes: a stratified discrete-choice experiment.

PURPOSE: Diabetes is a chronic condition that is more prevalent among people with lower educational attainment. This study assessed the treatment preferences of patients with type 2 diabetes by educational attainment. METHODS: Patients with type 2 diabetes were recruited from a national online panel in the US. Treatment preferences were assessed using a discrete-choice experiment. Participants completed 16 choice tasks in which they compared pairs of treatment profiles composed of six attributes: A1c decrease, stable blood glucose, low blood glucose, nausea, treatment burden, and out-of-pocket cost. Choice models and willingness-to-pay (WTP) estimates were estimated using a conditional logit model and were stratified by educational status. RESULTS: A total of 231 participants with a high school diploma or less education, 156 participants with some college education, and 165 participants with a college degree or more completed the survey. Participants with a college degree or more education were willing to pay more for A1c decreases ($58.84, standard error [SE]: 10.6) than participants who had completed some college ($28.47, SE: 5.53) or high school or less ($17.56, SE: 3.55) (p≤0.01). People with a college education were willing to pay more than people with high school or less to avoid nausea, low blood glucose events during the day/night, or two pills per day. CONCLUSION: WTP for aspects of diabetes medication differed for people with a college education or more and a high school education or less. Advanced statistical methods might overcome limitations of stratification and advance understanding of preference heterogeneity for use in patient-centered benefit-risk assessments and personalized care approaches.

Engaging Patients in Decision-Making and Behavior Change to Promote Prevention.

Effectively engaging patients in their care is essential to improve health outcomes, improve satisfaction with the care experience, reduce costs, and even benefit the clinician experience. This chapter will address the topic of patient engagement directly and review the relationships between health literacy and patient engagement. While there are many ways to define patient and family engagement, this chapter will consider engagement as "patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system - direct care, organizational design and governance, and policy making - to improve health and health care [1]." We will specifically focus on the patient engagement and health literacy needs for three scenarios (1) decision-making, (2) health behavior change, and (3) chronic disease management; we will include the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing. We will close by describing the future of patient engagement, which extends beyond the traditional domains of decision-making and self-care to describe how patient engagement can influence the design of the healthcare delivery system; local, state, and national health policies; and future research relevant to the needs and experiences of patients.

Identifying and Prioritizing the Barriers and Facilitators to the Self-Management of Type 2 Diabetes Mellitus: A Community-Centered Approach.

OBJECTIVE: Self-management of type 2 diabetes mellitus is crucial to controlling the disease and preventing harm. Multiple factors have been identified in the literature as potential barriers and facilitators to self-management, but the magnitude and directionality of these factors are seldom studied. We sought to develop and test an instrument to identify and quantify the barriers and facilitators to self-management of type 2 diabetes. METHODS: A community-centered approach was used to design, implement, and interpret the results of a stated-preference study. All activities were guided by a diverse stakeholder board. Based on previously reported development work, a novel survey instrument consisting of 13 potential barriers and facilitators was pretested and piloted in our local community. Participants were asked to discuss, rate, and rank each factor. A simple self-explicated method was used to quantify the data and Z scores were used for hypothesis testing. RESULTS: In total, 25 patients with self-reported type 2 diabetes (64% female; 92% minorities) participated in the pretest and pilot. Time commitments (Z = -3.72), lack of active support groups (Z = -3.39) and other resources in the local community (Z = -2.96), and language/culture (Z = -2.69) were identified as barriers to self-management. Access to healthy food (Z = +5.68), personal understanding (Z = +4.81), and communication with healthcare providers (Z = +4.62) were identified as facilitators. CONCLUSION: We demonstrate that factors impacting self-management can be quantified and categorized as barriers and facilitators. While further refinement to some factors and investigation into alternative prioritization methods is necessary, our stakeholder board endorsed moving this to a large nationally representative study to see how these factors vary across different people.

Issues in pay for performance: the case of diabetes self-management.

Pay for performance is a concept recently on the agenda of many health care providers, administrators, insurers, and payors in their search for methods to provide the best care at the most efficient price. At the same time it promises to promote quality care by paying financial incentives to providers who perform well clinically. As the fields continue to debate this approach, the following article explores how the pay-for-performance concept may be applied to one of the most prevalent chronic illnesses: diabetes. It identifies some of the issues and problems that may be faced with diseases such as diabetes, in which outcomes rely greatly on the role of the patient in self-management. Such considerations must be taken into account in the event of the refinement and implementation of pay for performance.

Addressing the insidious health and financial burden of tobacco use in Missouri: the role of medical and public health professionals.

Despite the widespread knowledge that tobacco use causes death and debilitating disease, tobacco control efforts in Missouri remain inadequate. No other health issue combines the prevalence, lethality, and neglect of tobacco addiction. This paper discusses comprehensive tobacco-use prevention and cessation programs that could, if implemented, effectively reduce tobacco-related health problems. Successful tobacco control efforts change society by creating an environment in which nonsmoking is the norm and quitting smoking is supported. This paper concludes that it is time for medicine and public health professionals to communicate, collaborate, and assume leadership in reducing the health burden of tobacco use in Missouri.

The long road to patient safety: A status report on Missouri acute-care hospitals.

We surveyed Missouri's acute-care hospitals twice to assess the "state of the art" in patient safety systems. We found improvements in all areas studied, but progress is modest and falls short of national recommendations. We urge all Missourians to become more knowledgeable and assertive consumers of hospital care, and we ask them to support Missouri hospitals in their patient safety efforts, including provision of financial resources to put necessary systems in place.

Characteristics of smoking cessation guideline use by primary care physicians.

This study, based on a random sample mail survey of Missouri primary care physicians, identifies: (1) the extent and predictors of these physicians' awareness, agreement, adoption, and adherence to tobacco cessation guidelines; and (2) their knowledge/ beliefs about tobacco interventions. While primary care physicians play a key role in helping patients quit smoking, guidelines are not widely followed. "Reliance on respected colleagues for advice" was the one variable consistently identified as a predictor of guideline compliance.

Perceived Barriers and Potential Strategies to Improve Self-Management Among Adults with Type 2 Diabetes: A Community-Engaged Research Approach.

OBJECTIVE: Type 2 diabetes (T2D) is a leading cause of morbidity and mortality that disproportionately affects adults living in urban areas in the USA. Our goal was to actively engage community members in research to identify strategies to improve T2D self-management in an urban community in Baltimore, MD. METHODS: We partnered with the Johns Hopkins Community Research Advisory Council to establish our stakeholder advisory board-the Diabetes Action Board (DAB). In response to input from DAB members regarding the best approaches for conducting community-centered T2D research, we conducted three 90-min focus groups of local adults living with T2D to identify ways to improve self-management. DAB members were involved in each stage of the research, including development of the protocol and materials, participant recruitment, and interpretation and dissemination of findings. RESULTS: In total, 24 adults with self-reported T2D (75 % participation rate; 79 % female) residing in the local area participated in focus groups. Participants reported that barriers within their daily home and work environments, inadequate neighborhood resources, and suboptimal healthcare quality hindered their self-management. Reported strategies that may help to improve self-management included social support from family members, providers, and community members; improved access to healthy food; and wide availability of free or low-cost T2D educational materials and classes within the local area. CONCLUSION: Our study demonstrates a successful mechanism for engaging community members in the design, implementation, and dissemination of T2D research. This research approach was beneficial for building a sustainable partnership to support future work in the local community.

A Qualitative Study of Vulnerable Patient Views of Type 2 Diabetes Consumer Reports.

BACKGROUND: The Patient Protection and Affordable Care Act (ACA) mandates the release of publicly available consumer reports to highlight differences in quality of care and reduce healthcare disparities. However, little is known about patient perceptions of the value of such reports. OBJECTIVE: This study aims to identify whether vulnerable populations with type 2 diabetes perceive consumer reports as helpful in making decisions about diabetes care. METHODS: We conducted a brief demographic survey and qualitative study of 18 focus groups: six each of African American, Hispanic, and non-Hispanic White consumers diagnosed with type 2 diabetes (n = 92). We analysed focus group transcripts to identify recurring themes, which were summarized and compared across population groups. RESULTS: Participants expressed minimal interest in currently available consumer reports. They instead listed personal referrals and interpersonal interactions among the most important factors when choosing a physician. Further, in place of information to aid in physician selection, participants articulated strong desires for more basic, straightforward disease-specific information that would promote diabetes self-management. CONCLUSIONS: This study's results call into question the value of consumer reports as defined by the ACA. Participants reported little interest in comparative provider performance data. Instead, they were more interested in information to assist in diabetes self-management. This suggests that consumer reports may not be as important a tool to improve outcomes and reduce health disparities as policy makers imagine them to be.