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.

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.

MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients--a randomized cluster trial.

BACKGROUND: Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement. METHODS/DESIGN: We are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness. DISCUSSION: This study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02138448.

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.

Internet use for prediagnosis symptom appraisal by colorectal cancer patients.

BACKGROUND: This study explored the characteristics of colorectal cancer (CRC) patients who accessed Internet-based health information as part of their symptom appraisal process prior to consulting a health care provider. METHOD: Newly diagnosed CRC patients who experienced symptoms prior to diagnosis were interviewed. Brief COPE was used to measure patient coping. Logistic and linear regressions were used to assess Internet use and appraisal delay. RESULTS: Twenty-five percent of the sample (61/242) consulted the Internet prior to visiting a health care provider. Internet use was associated with having private health insurance (odds ratio [OR] = 2.55; 95% confidence interval [CI] = 1.20-5.43) and experiencing elimination symptoms (OR = 1.43; 95% CI = 1.14-1.80) and was marginally associated with age (OR = 0.96; 95% CI = 0.93-0.99). Internet use was not related to delayed medical care seeking. CONCLUSION: Internet use did not influence decisions to seek medical care. The Internet provided a preliminary information resource for individuals who experienced embarrassing CRC symptoms, had private health insurance, and were younger.

Breast cancer patients' use of health information in decision making and coping.

BACKGROUND: Breast cancer patients are some of today's most proactive healthcare consumers. Given how the media has highlighted the many issues involved in breast cancer, the unprecedented rise of consumerism in general, and the rise of healthcare consumerism specifically, a plethora of information on breast cancer has emerged in both scientific and popular media. It is timely and appropriate to consider breast cancer patients' perspectives regarding their search for health-related information and its use for treatment decision making and coping. OBJECTIVE: The present study explores health information-seeking behaviors (passive and active), use of health information, sources of health information, and how such information is or is not used in patients' decision making about their treatment. METHODS: This study used a secondary analysis of data regarding health information-seeking behaviors and treatment decisions from 2 separate but compatible qualitative data sets based on in-depth interviews with a total of 35 breast cancer survivors. Data were analyzed using thematic analysis. RESULTS: The majority of participating women were active information seekers (n = 26). Of the subsets of women who described their level of involvement in treatment decision making, the largest number (n = 13) reported a shared responsibility for decision making with their physician, and the next largest subset (n = 9) reported making the final decision themselves. CONCLUSION: These findings provide an enhanced understanding of the preferred source and method of delivery of information given health information-seeking behaviors and decision-making strategies. IMPLICATIONS FOR PRACTICE: How health information is delivered in the future given these findings is discussed with specific attention to matching patient preferences with delivery methods to potentially enhance patients' sense of agency with regard to treatment, which has been shown to improve patients' psychosocial outcomes.

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.

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.

Men's tobacco and alcohol use during and after pregnancy.

Men's health risk behaviors are rarely considered as a component of their partners' prenatal care. Men living with a pregnant partner completed telephone surveys at two time points, during pregnancy and postpartum, answering questions about tobacco and alcohol use behaviors and other sociodemographic variables. Men's smoking did not change significantly from pregnancy (46.9%) to postpartum (45.8%). Hazardous drinking (five or more drinks/day in a month) changed from 27.1% to 22.9%. Nonsmoking status of men was significantly related to a pregnant partner's quitting smoking during pregnancy and remaining quit at postpartum (p = .019). Household prohibitions from indoor smoking increased from 62.5% at pregnancy to 76% postpartum (p = .009). Pregnancy alone does not appear sufficient for men to quit smoking or change hazardous drinking. Continued exclusion of young men during prenatal care is a missed opportunity to address health risk behaviors and improve paternal, maternal, and family health.

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.

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 patient safety systems.

CONTEXT: Since the Institute of Medicine (IOM) reports on medical errors and quality, national attention has focused on improving patient safety through changes in "systems" of care. These reports resulted in a new paradigm that, rather than centering on individual errors, focuses on the "systems" necessary to facilitate and enhance quality and protect patients. OBJECTIVES: To assess the status of hospital patient safety systems since the release of the IOM reports and to identify changes over time in 2 states that collaborated on a patient safety project funded by the Agency for Healthcare Research and Quality. DESIGN, SETTING, AND PARTICIPANTS: Survey of all acute care hospitals in Missouri and Utah at 2 points in time, in 2002 and 2004, using a 91-item comprehensive questionnaire (n = 126 for survey 1 and n = 128 for survey 2). To assess changes over time, we also studied the cohort of 107 hospitals that responded to both surveys. MAIN OUTCOME MEASURES: Responses to the 91-question survey as well as changes in responses to the survey questions over an 18-month period. Seven latent variables were constructed to represent the most important patient safety constructs studied: computerized physician order entry systems, computerized test results, and assessments of adverse events; specific patient safety policies; use of data in patient safety programs; drug storage, administration, and safety procedures; manner of handling adverse event/error reporting; prevention policies; and root cause analysis. For each hospital, the 7 latent variables were summed to give an overall measure of the patient safety status of the hospital. RESULTS: Development and implementation of patient safety systems is at best modest. Self-reported regression in patient safety systems was also found. While 74% of hospitals reported full implementation of a written patient safety plan, nearly 9% reported no plan. The area of surgery appears to have the greatest level of patient safety systems. Other areas, such as medications, with a long history of efforts in patient safety and error prevention, showed improvements, but the percentage of hospitals with various safety systems was already high at baseline for many systems. Some findings are surprising, given the overall trends; for example, while a substantial percentage of hospitals have medication safety systems, only 34.1% [corrected] reported full implementation at survey 2 of computerized physician order entry systems for medications, despite the growth of computer technology in general and in hospital billing systems in particular. CONCLUSIONS: The current status of hospital patient safety systems is not close to meeting IOM recommendations. Data are consistent with recent reports that patient safety system progress is slow and is a cause for great concern. Efforts for improvement must be accelerated.

A pilot study of smoking and associated behaviors of low-income expectant fathers.

Pregnancy is considered a teachable moment for helping women who smoke to quit, yet few studies have examined smoking behavior of expectant fathers. The present study considers the possibility that pregnancy is a teachable moment for expectant fathers as well and describes smoking and associated behaviors of men during their partner's pregnancy. Participants were 138 low-income men living with their pregnant partners. Using telephone interviews, we found 63% of the men had smoked at least 100 cigarettes in their lifetime. Current smoking was reported by 49.3% of expectant fathers (39.1% daily smoking; 10.2% some days). Expectant fathers' current smoking was associated with having a lower level of education (p<.0001), pregnant partner being a current smoker (p=.0002), higher quantity of alcohol consumption per day of drinking (p=.0003), and absence of smoking prohibitions inside the home (p<.0001). In the past year, 70.1% of the current smokers tried to quit. We found high rates of smoking in low-income expectant fathers, and an expectant father's smoking during his partner's pregnancy was associated with his pregnant partner continuing to smoke. A majority of expectant fathers identified as current smokers tried to quit in the past year or indicated an intention to quit in the near future. Intervention during pregnancy that targets pregnant women and expectant fathers who smoke could lead to more households without tobacco use and thus have positive implications for paternal, maternal, and family health. Further clinical and research attention is needed to address the smoking behaviors of both expectant fathers and their pregnant partners.

Health care system and insurer support for smoking cessation guideline implementation.

Physician use of clinical practice guidelines (CPGs) is disappointingly low in the United States. Much emphasis historically has been placed on the individual clinician to implement use of guidelines in practice. Recently, the Public Health Service issued an updated set of smoking cessation guidelines that include recommendations not only for patients and physicians, but also for health care administrators, insurers, and purchasers. A random sample of Missouri family physicians and general internists was used to determine, for the first time empirically, whether physicians receiving external support for guideline implementation were more likely to adopt and adhere to guidelines in practice. Fewer than 20 percent of physicians receive system support consistent with the updated guideline for smoking cessation. Only 32 percent of physicians who are unaware of the guidelines receive any of the recommended external support, while nearly 60 percent of physicians who adhere to the guidelines in practice are receiving some form of external support. Thus, the fundamental issue that requires national attention is that successful guideline implementation is highly dependent on administrative supports from health care organizations and insurers.