Have screening harms become newsworthy? News coverage of prostate and colorectal cancer screening since the 2008 USPSTF recommendation changes.

In 2008, the US Preventive Services Task Force updated its recommendations to discourage screening for prostate cancer in men over 75 and for colorectal cancer in adults over 85. We aimed to determine whether newspapers portrayed these screenings differently after these recommendation changes. A quantitative content analysis included articles on prostate-specific antigen (PSA) testing or colonoscopy in US newspapers from 2005 to 2012. Outcomes included the number of benefits and harms mentioned and the gist expert and lay readers might get from articles. Benefits in PSA articles (n = 222) and harms and benefits in colonoscopy articles (n = 65) did not change over time. Mentions of PSA harms increased after 2008 (p < .01). Expected expert gist of PSA articles became more negative after 2008 (p < .01). Expected lay gist was positive and did not change. News coverage of PSA testing harms increased without a decrease in the discussion of benefits. Consumers, especially lay consumers, are receiving unbalanced information on cancer screening.

Conflicting medication information: prevalence, sources, and relationship to medication adherence.

Conflicting medication information has been defined as contradictory information about a medication topic from two or more sources. The objective of this study was to determine whether arthritis patients are exposed to conflicting medication information, to document sources of conflicting information, and to explore whether conflicting information is associated with sociodemographic factors, clinical characteristics, and medication adherence. Using an online survey, arthritis patients (N = 328) reported how often they received conflicting information about 12 medication topics as well as sources of conflicting information, demographic/clinical characteristics, and medication adherence. A linear regression model, which controlled for various demographic/clinical factors, determined whether conflicting information was associated with medication adherence. The majority of patients (80.1%) received conflicting information and were most likely to receive conflicting information about medication risks. Physicians, media sources, and the Internet were the most common sources of conflicting information. Less conflicting information (B =-0.13, p < .05), more information source use (B = 0.22, p < .01), and lower perceived regimen complexity (B =-0.17, p < .05) were associated with better medication adherence. In conclusion, conflicting medication information is pervasive, comes from a variety of sources, and may negatively affect patient health outcomes. To potentially decrease exposure to conflicting information, providers should direct patients to high-quality medication information sources.

The impact of vasculitis on patients' social participation and friendships.

OBJECTIVES: Our objective is to explore how vasculitis affects patients' friendships and social participation. METHODS: Vasculitis patients (n=221) completed an online questionnaire that asked if, and how, relationships with friends have changed since receiving a vasculitis diagnosis. Participants' written responses were imported into Atlas.ti, and two independent researchers used both structured and unstructured coding to identify themes. After reaching 100% consensus on the themes present in each participant's responses, the coders determined how themes were interrelated across participants. RESULTS: Over half of patients (52%) expressed that vasculitis negatively impacted their friendships and 25% noted a negative impact on their social participation. At times, this negative impact was related to structural changes in patients' social networks due to loss of friendships. Reduced social participation was also associated with friends' inability to understand vasculitis and its effects, vasculitis-related fatigue, and lifestyle changes such as not being able to drink alcohol and avoiding infection-prone events. Additionally, patients withdrew from social engagements due to fatigue or because of physical symptoms and side effects. CONCLUSIONS: The unique circumstances associated with a rare chronic illness like vasculitis can create significant barriers to friendships, including loss of these relationships. Interventions designed to help patients cope with the social impact of vasculitis are implicated, especially if they increase patients' ability to engage in dialogue about their illness with their friends.

Fluid manipulation among individuals with lower urinary tract symptoms: a mixed methods study.

AIMS AND OBJECTIVE: To determine, qualitatively and quantitatively, how individuals use fluid manipulation to self-manage the urinary symptoms of daytime frequency, urgency and urine leakage and the underlying rationale for this behaviour. BACKGROUND: Lower urinary tract symptoms are prevalent and burdensome, and little is known about how individuals with lower urinary tract symptoms manipulate their fluid intake. DESIGN: A mixed methods design included statistical analysis of data from a population-based survey of urologic symptoms and qualitative analysis of in-depth interviews. METHOD: Quantitative data came from 5503 participants of the baseline Boston Area Community Health Survey, a population-based, random sample epidemiologic survey of urologic symptoms. Qualitative data came from in-depth interviews with a random subsample from Boston Area Community Health of 152 black, white and Hispanic men and women with LUTS. RESULTS: Qualitative data showed that some respondents restricted fluid intake while others increased it, in both cases with the expectation of improved symptoms. Quantitative data showed that fluid intake was greater in men and women reporting frequency (p < 0·001). Women with frequency drank significantly more water (p < 0·001), while women with urgency drank significantly less water (p = 0·047). CONCLUSIONS: This study found divergent expectations of the role of fluids in alleviating symptoms, leading some individuals to restrict and others to increase fluid intake. Individuals with lower urinary tract symptoms may need guidance in fluid management. RELEVANCE TO CLINICAL PRACTICE: Nurses should be aware that patients may self-manage lower urinary tract symptoms by restricting fluid intake, putting them at risk for dehydration, constipation and urinary tract infection, but also that they may be increasing their fluid intake, which could worsen symptoms. This study pinpoints a specific area of need among patients with lower urinary tract symptoms and provides a practical opportunity for nurses to assist their patients with behavioural and fluid management by emphasising the clinical guidelines.

Moderating perceptions of bother reports by individuals experiencing lower urinary tract symptoms.

We compared reports of symptom bother for the same urinary symptoms to understand why symptom severity and bother do not correspond in a straightforward manner. We used a grounded theory approach to analyze qualitative data from 123 individual interviews and developed a conceptual framework, identifying three symptom perceptions that might moderate symptom bother: causal, relative, and uncertainty. Symptom bother was lower for respondents who viewed symptoms causally (symptoms seemed explainable or "normal") or relatively (urinary symptoms were compared to other symptoms or conditions). Bother tended to be higher for respondents who viewed symptoms with uncertainty (when symptom etiology and course were unknown). A greater portion of respondents in the causal perception group had not sought health care for their symptoms. This conceptual framework is useful for understanding the relationship between reactions to and health care seeking for other symptoms.

Beyond incontinence: the stigma of other urinary symptoms.

AIM: This paper is a report of a study conducted to characterize the stigma of urinary frequency and urgency and differentiate it from the stigma of incontinence and to describe race/ethnic and gender differences in the experience of stigma among a diverse sample of individuals. BACKGROUND: Lower urinary tract symptoms, including frequency, urgency and incontinence, are susceptible to stigma, but previous stigma research has focused almost exclusively on incontinence. METHOD: The Boston Area Community Health Survey is a population-based, random sample epidemiological survey of urologic symptoms (N = 5503). Qualitative data for this study came from in-depth interviews conducted between 2007 and 2008 with a random subsample of 151 black, white and Hispanic men and women with urinary symptoms. FINDINGS: Respondents reported stigma associated with frequency and urgency - not just incontinence. The stigma of frequency/urgency is rooted in social interruption, loss of control of the body, and speculation as to the nature of a non-specific 'problem'. Overall, the stigma of urinary symptoms hinged upon whether or not the problem was 'perceptible'. Men felt stigmatized for making frequent trips to the bathroom and feared being seen as impotent. Women feared having an unclean body or compromised social identity. Hispanic people in particular voiced a desire to keep their urinary symptoms a secret. CONCLUSION: The stigma of urinary symptoms goes beyond incontinence to include behaviours associated with frequency and urgency. Healthcare practitioners should assess for stigma sequelae (e.g. anxiety, depression) in individuals with frequency and urgency, and stress treatment options to circumvent stigmatization.

Researchers, patients, and other stakeholders' perspectives on challenges to and strategies for engagement.

BACKGROUND: There is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders as research partners in study planning, conduct, and dissemination. This requirement, unique among large healthcare research funders in the US, provides an opportunity to learn about challenges encountered and specific strategies used by PCORI-funded study teams. The primary objective of this study is to describe -- from the perspective of PCORI investigators and research partners-the most common engagement challenges encountered in the first two years of the projects and promising strategies to prevent and overcome these challenges. METHODS: Descriptive information about investigators, partners, and their engagement was collected from investigators via annual (N = 235) and mid-year (N = 40) project progress reporting to PCORI, and from their partners (N = 260) via voluntary survey. Qualitative data were analyzed using content and thematic analyses. RESULTS: Investigators and partners most often described engagement challenges in three domains: (1) infrastructure to support engagement, (2) building relationships, and (3) maintaining relationships. Infrastructure challenges related to financial and human resources, including funding support and dedicated staff, identifying diverse groups of partners, and partners' logistical needs. Challenges for both building and maintaining relationships encompass a variety of aspects of authentic, positive interactions that facilitate mutual understanding, full participation, and genuine influence on the projects. Strategies to prevent or mitigate engagement challenges also corresponded overall to the same three domains. Both groups typically described strategies more generally, with applicability to a range of challenges rather than specific actions to address only particular challenges. CONCLUSION: Meaningful engagement of patients and other stakeholders comes with challenges, as does any innovation in the research process. The challenges and promising practices identified by these investigators and partners, related to engagement infrastructure and the building and maintenance of relationships, reveal actionable areas to improve engagement, including organizational policies and resources, training, new engagement models, and supporting engagement by viewing it as an investment in research uptake and impact.

Assessing symptoms of hypogonadism by self-administered questionnaire: qualitative findings in patients and controls.

BACKGROUND: Current screening instruments for hypogonadism lack adequate specificity and diagnostic accuracy. A new self-administered questionnaire of hypogonadism symptoms is being developed to address this need. The process for questionnaire development and results from the first (qualitative) phase are presented. METHODS: Qualitative interviews were conducted based on a new conceptual model of hypogonadism and according to standards for questionnaire development. An item pool was generated from focus groups and in-depth interviews with two groups of hypogonadal patients, treated (N = 26) and untreated (N = 26), and age-equivalent controls (N = 28). Standardized scoring of the qualitative interviews was used to confirm conceptual domains in the model and to generate questionnaire items for further validation. RESULTS: Key domains identified in both patients and controls included: (a) physical function; (b) bodily signs and symptoms; (c) sexual function and libido; (d) sleep function; (e) mood and affective function; (f) memory and cognitive function. The final domain is distress or bother associated with hypogonadism symptoms. This domain was only relevant to the patient groups. CONCLUSIONS: The first stage in the design of a new hypogonadism screener has been completed. Seven domains were identified and draft items were developed in each domain according to current standards of patient-reported outcomes.

Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews.

OBJECTIVES: Examine Peer Support (PS) for complex, sustained health behaviors in prevention or disease management with emphasis on diabetes prevention and management. DATA SOURCES AND ELIGIBILITY: PS was defined as emotional, motivational and practical assistance provided by nonprofessionals for complex health behaviors. Initial review examined 65 studies drawn from 1442 abstracts identified through PubMed, published 1/1/2000-7/15/2011. From this search, 24 reviews were also identified. Extension of the search in diabetes identified 30 studies published 1/1/2000-12/31/2015. RESULTS: In initial review, 54 of all 65 studies (83.1%) reported significant impacts of PS, 40 (61.5%) reporting between-group differences and another 14 (21.5%) reporting significant within-group changes. Across 19 of 24 reviews providing quantifiable findings, a median of 64.5% of studies reviewed reported significant effects of PS. In extended review of diabetes, 26 of all 30 studies (86.7%) reported significant impacts of PS, 17 (56.7%) reporting between-group differences and another nine (30.0%) reporting significant within-group changes. Among 19 of these 30 reporting HbA1c data, average reduction was 0.76 points. Studies that did not find effects of PS included other sources of support, implementation or methodological problems, lack of acceptance of interventions, poor fit to recipient needs, and possible harm of unmoderated PS. CONCLUSIONS: Across diverse settings, including under-resourced countries and health care systems, PS is effective in improving complex health behaviors in disease prevention and management including in diabetes.

The relationship between partner information-seeking, information-sharing, and patient medication adherence.

OBJECTIVES: We describe the medication information-seeking behaviors of arthritis patients' partners and explore whether partner medication information-seeking and information-sharing are associated with patient medication adherence. METHODS: Arthritis patients and their partners (n = 87 dyads) completed an on-line questionnaire. Partners indicated how often they obtained medication information from 14 sources, how much they trusted these sources, and whether they shared medication information with the patient. Patients reported their medication adherence. Bivariate associations were calculated to explore the relationships between partner information-seeking, information-sharing, and patient medication adherence. RESULTS: Partners sought little information about the patient's medications. Partners sought more information if the patient's medication regimen was more complex (r = 0.33, p = 0.002). Most partners (∼ 98%) shared medication information with the patient; older partners shared more information with the patient (r = 0.25, p = 0.03). Neither partner information-seeking (r = 0.21, p = 0.06) nor partner information-sharing (r = 0.12, p = 0.31) were significantly associated with patient medication adherence. CONCLUSIONS: Although partners of arthritis patients do not seek large amounts of medication information, the vast majority share this information with the patient. PRACTICE IMPLICATIONS: Involving partners in medical consultations can help them better understand the patient's medications, have questions answered by providers, and engage in more informed discussions with patients about their medications.

Clinicians' perceptions of the benefits and harms of prostate and colorectal cancer screening.

BACKGROUND: Clinicians' perceptions of screening benefits and harms influence their recommendations, which in turn shape patients' screening decisions. We sought to understand clinicians' perceptions of the benefits and harms of cancer screening by comparing 2 screening tests that differ in their balance of potential benefits to harms: colonoscopy, which results in net benefit for many adults, and prostate-specific antigen (PSA) testing, which may do more harm than good. METHODS: In this cross-sectional study, 126 clinicians at 24 family/internal medicine practices completed surveys in which they listed and rated the magnitude of colonoscopy and PSA testing benefits and harms for a hypothetical 70-year-old male patient and then estimated the likelihood that these tests would cause harm and lengthen the life of 100 similar men in the next 10 years. We tested the hypothesis that the availability heuristic would explain the association of screening test to perceived likelihood of benefit/harm and a competing hypothesis that clinicians' gist of screening tests as good or bad would mediate this association. RESULTS: Clinicians perceived PSA testing to have a greater likelihood of harm and a lower likelihood of lengthening life relative to colonoscopy. Consistent with our gist hypothesis, these associations were mediated by clinicians' gist of screening (balance of perceived benefits to perceived harms). LIMITATIONS: Generalizability beyond academic clinicians remains to be established. CONCLUSIONS: Targeting clinicians' gist of screening, for example through graphical displays that allow clinicians to make gist-based relative magnitude comparisons, may influence their risk perception and possibly reduce overrecommendation of screening.

What do physicians gain (and lose) with experience? Qualitative results from a cross-national study of diabetes.

An empirical puzzle has emerged over the last several decades of research on variation in clinical decision making involving mixed effects of physician experience. There is some evidence that physicians with greater experience may provide poorer quality care than their less experienced counterparts, as captured by various quality assurance measures. Physician experience is traditionally narrowly defined as years in practice or age, and there is a need for investigation into precisely what happens to physicians as they gain experience, including the reasoning and clinical skills acquired over time and the ways in which physicians consciously implement those skills into their work. In this study, we are concerned with 1) how physicians conceptualize and describe the meaning of their clinical experience, and 2) how they use their experience in clinical practice. To address these questions, we analyzed qualitative data drawn from in-depth interviews with physicians from the United States, United Kingdom, and Germany as a part of a larger factorial experiment of medical decision making for diabetes. Our results show that common measures of physician experience do not fully capture the skills physicians acquire over time or how they implement those skills in their clinical work. We found that what physicians actually gain over time is complex social, behavioral and intuitive wisdom as well as the ability to compare the present day patient against similar past patients. These active cognitive reasoning processes are essential components of a forward-looking research agenda in the area of physician experience and decision making. Guideline-based outcome measures, accompanied by underdeveloped age- and years-based definitions of experience, may prematurely conclude that more experienced physicians are providing deficient care while overlooking the ways in which they are providing more and better care than their less experienced counterparts.

Adopting best practices: lessons learned in the Collaborative Initiative to Help End Chronic Homelessness (CICH).

The Collaborative Initiative to Help End Chronic Homelessness (CICH) was established to provide housing and supportive services for individuals experiencing chronic homelessness. As part of this initiative, 11 projects across the country received funding to apply models of best practices to support their clients in housing. This paper reports on the experiences of the CICH projects in their use of Assertive Community Treatment (ACT) and Motivational Interviewing (MI), clinical practice models commonly used by CICH projects. A qualitative analysis identified five areas of challenge for the projects: (1) Incomplete and underdeveloped staff teams; (2) Incomplete understanding of the practice models; (3) Using the elements of the practice models; (4) Interagency teaming; and (5) Competing expectations of multiple federal agencies. The paper describes the specific challenges in each of the five areas as well as training approaches and gaps in training and the perceived benefits of the practice models as reported by project staff.