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1.  Seniors' perceptions of prescription drug advertisements: A pilot study of the potential impact on informed decision making 
Objective
To conduct a pilot study exploring seniors' perceptions of direct-to-consumer advertising (DTCA) of prescription drugs and how the advertisements might prepare them for making informed decisions with their physicians.
Methods
We interviewed 15 seniors (ages 63-82) individually after they each watched nine prescription drug advertisements recorded from broadcast television. Grounded Theory methods were used to identify core themes related to the research questions.
Results
Four themes emerged from the interviews about DTCA: (1) awareness of medications was increased, (2) information was missing or misleading and drugs were often perceived as more effective than clinical evidence would suggest, (3) most seniors were more strongly influenced by personal or vicarious experience with a drug – and by their physician – than by DTCA, and (4) most seniors were circumspect about the information in commercial DTCA.
Conclusions
DTCA may have some limited benefit for informed decision making by seniors, but the advertisements do not provide enough detailed information and some information is misinterpreted.
Practical Implications
Physicians should be aware that many patients may misunderstand DTCA, and that a certain amount of time may be required during consultations to correct these misconceptions until better advertising methods are employed by the pharmaceutical industry.
doi:10.1016/j.pec.2010.10.008
PMCID: PMC3976601  PMID: 21044826
Direct-to-Consumer Advertising; prescription drugs; seniors; informed decision making
2.  How to ask: Older adults’ preferred tools in health outcome prioritization 
OBJECTIVE
To assess older adults’ attitudes toward eliciting health outcome priorities.
METHODS
This observational cohort study of 356 community-living adults age ≥ 65 included three tools: 1) Health Outcomes: ranking four outcomes (survival, function, freedom from pain, and freedom from other symptoms); 2) Now vs. Later: rating importance of current versus future quality of life; 3) Attitude Scale: agreement with statements about health outcomes and current versus future health.
RESULTS
Whereas 41% preferred Health Outcomes, 40% preferred the Attitude Scale. Only 7–12% rated any tool as very hard or hard. In bivariate analysis, participants of non-white race and with lower education, health literacy, and functional status were significantly more likely to rate at least one of the tools as easy (p<0.05). Across all tools, 17% of participants believed tools would change care. The main reason for thinking there would be no change was satisfaction with existing care (62%).
CONCLUSIONS
There is variability in how older persons wish to be asked about health outcome priorities. Few find this task difficult, and difficulty was not greater among participants with lower health literacy, education, or health status.
PRACTICE IMPLICATIONS
By offering different tools, healthcare providers can help patients clarify their health outcome priorities.
doi:10.1016/j.pec.2012.11.010
PMCID: PMC3594328  PMID: 23218242
Health priorities; organization and administration; decision-making; goals; patient participation
3.  Imagining life with an ostomy: Does a video intervention improve quality-of-life predictions for a medical condition that may elicit disgust?☆ 
Patient education and counseling  2012;91(1):113-119.
Objective
To test a video intervention as a way to improve predictions of mood and quality-of-life with an emotionally evocative medical condition. Such predictions are typically inaccurate, which can be consequential for decision making.
Method
In Part 1, people presently or formerly living with ostomies predicted how watching a video depicting a person changing his ostomy pouch would affect mood and quality-of-life forecasts for life with an ostomy. In Part 2, participants from the general public read a description about life with an ostomy; half also watched a video depicting a person changing his ostomy pouch. Participants’ quality-of-life and mood forecasts for life with an ostomy were assessed.
Results
Contrary to our expectations, and the expectations of people presently or formerly living with ostomies, the video did not reduce mood or quality-of-life estimates, even among participants high in trait disgust sensitivity. Among low-disgust participants, watching the video increased quality-of-life predictions for ostomy.
Conclusion
Video interventions may improve mood and quality-of-life forecasts for medical conditions, including those that may elicit disgust, such as ostomy.
Practice implications
Video interventions focusing on patients’ experience of illness continue to show promise as components of decision aids, even for emotionally charged health states such as ostomy.
doi:10.1016/j.pec.2012.10.015
PMCID: PMC3942785  PMID: 23177398
Ostomy; Video; Quality-of-life; Judgment
4.  More Than Words: Patients' Views on Apology and Disclosure When Things Go Wrong in Cancer Care 
Patient education and counseling  2011;90(3):341-346.
Objective
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.
Methods
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.
Results
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.
Conclusion
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.
Practice Implications
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.
doi:10.1016/j.pec.2011.07.010
PMCID: PMC3214230  PMID: 21824739
5.  Patient reported interpersonal processes of care and perceived social position: the Diabetes Study of Northern California (DISTANCE) 
Patient education and counseling  2011;90(3):392-398.
Objective
A patient’s sense of his/her standing in the social hierarchy may impact interpersonal processes of care (IPC) within the patient-provider encounter. We investigated the association of perceived social position with patient-reported IPC.
Methods
We used survey data from the Diabetes Study of Northern California (DISTANCE), studying 11,105 insured patients with diabetes cared for in an integrated healthcare delivery system. Perceived social position was based on the MacArthur subjective social status ladder. Patient-reported IPC was based on a combined scale adapted from the Consumer Assessment of Health Plans Study provider communication subscale and the Trust in Physicians scale.
Results
Lower perceived social position was associated with poorer reported IPC (p<0.001). The relationship remained statistically significant after controlling for age, sex, race/ethnicity, depressive symptoms, physical functioning, income and education.
Conclusion
Beyond objective measures of SES, patients’ sense of where they fall in the social hierarchy may represent a pathway between social position and patient satisfaction with the quality of patient-provider communication in chronic disease.
Practice Implications
Interventions to address disparities in communication in primary care should incorporate notions of patients’ social position.
doi:10.1016/j.pec.2011.07.019
PMCID: PMC3226874  PMID: 21855266
patient-physician communication; interpersonal processes of care; patient satisfaction; perceived social position; subjective socioeconomic status; diabetes
6.  An Academic-Marketing Collaborative to Promote Depression Care: A Tale of Two Cultures 
Patient education and counseling  2011;90(3):411-419.
Objectives
Commercial advertising and patient education have separate theoretical underpinnings, approaches, and practitioners. This paper aims to describe a collaboration between academic researchers and a marketing firm working to produce demographically targeted public service anouncements (PSAs) designed to enhance depression care-seeking in primary care.
Methods
An interdisciplinary group of academic researcherss contracted with a marketing firm in Rochester, NY to produce PSAs that would help patients with depressive symptoms engage more effectively with their primary care physicians (PCPs). The researchers brought perspectives derived from clinical experience and the social sciences and conducted empirical research using focus groups, conjoint analysis, and a population-based survey. Results were shared with the marketing firm, which produced four PSA variants targeted to gender and socioeconomic position.
Results
There was no simple, one-to-one relationship between research results and the form, content, or style of the PSAs. Instead, empirical findings served as a springboard for discussion and kept the creative process tethered to the experiences, attitudes, and opinions of actual patients. Reflecting research findings highlighting patients’ struggles to recognize, label, and disclose depressive symptoms, the marketing firm generated communication objectives that emphasized: a) educating the patient to consider and investigate the possibility of depression; b) creating the belief that the PCP is interested in discussing depression and capable of offering helpful treatment; and c) modelling different ways of communicating with physicians about depression. Before production, PSA prototypes were vetted with additional focus groups.
The winning prototype, “Faces,” involved a multi-ethnic montage of formerly depressed persons talking about how depression affected them and how they improved with treatment, punctuated by a physician who provided clinical information. A member of the academic team was present and consulted closely during production. Challenges included reconciling the marketing tradition of audience segmentation with the overall project goal of reaching as broad an audience as possible; integrating research findings across dimensions of words, images, music, and tone; and dealing with misunderstandings related to project scope and budget.
Conclusion
Mixed methods research can usefully inform PSAs that incorporate patient perspectives and are produced to professional standards. However, tensions between the academic and commercial worlds exist and must be addressed.
Practice implications
With certain caveats, implementation and dissemination researchers should consider opporutnities to join forces with marketing specialists. The results of such collaborations should be rigorously evaluated.
doi:10.1016/j.pec.2011.07.003
PMCID: PMC3235260  PMID: 21862274
7.  Factors that Influence Parents’ Experience with Results Disclosure after Newborn Screening Identifies Genetic Carrier Status for Cystic Fibrosis or Sickle Cell Hemoglobinopathy 
Patient education and counseling  2012;90(3):378-385.
Objectives
Newborn screening (NBS) identifies genetic carriers for sickle cell hemoglobinopathy and cystic fibrosis. We aimed to identify factors during initial NBS carrier results disclosure by primary care providers (PCPs) that influenced parents’ experiences and reactions.
Methods
Open-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods. Conventional content analysis identified influential factors; chi-square tests analyzed relationships between factors and parent-reported reactions.
Results
Parents reported positive (35%) or negative (31%) reactions to results disclosure. Parents’ experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p<0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p<0.05) with negative parental reactions. Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail.
Conclusions
Parents identified aspects of PCP communication which influenced their reactions and results disclosure experience.
Practice Implications
Our findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.
doi:10.1016/j.pec.2011.12.007
PMCID: PMC3328613  PMID: 22240007
Newborn screening; cystic fibrosis carrier; sickle cell trait; results disclosure; heterozygote; genetic carrier detection; psychosocial outcomes; genetic counseling; patient-provider communication; patient preferences; parental anxiety
8.  Frequency of high-quality communication behaviors used by primary care providers of heterozygous infants after newborn screening 
Patient education and counseling  2012;90(2):226-232.
Objective
To examine the quality of communication likely to be experienced by parents when being first informed about how newborn screening identified heterozygous “carrier” status for cystic fibrosis or sickle cell disease.
Methods
Primary care providers (PCPs) of infants found to have carrier status were telephoned over a 48-month period, and asked to rehearse with a standardized patient how they would inform the infants’ parent(s). 214 rehearsal transcripts were abstracted using explicit criteria methods to measure the frequency of five categories of high-quality communication behaviors.
Results
Overall, PCPs used large amounts of jargon and failed to use high quality communication behaviors. On average, PCPs used 18.6 total jargon words (8.7 unique words), but explained 2.4 jargon words. The most frequent assessment of understanding was the close-ended version, although it was only seen in 129 of 214 transcripts. The most common organizing behavior was importance emphasis (121/214). Precautionary empathy was rare; the most frequent behavior was “instruction about emotion” (33/214).
Conclusions
The limited use of high-quality communication behaviors in rehearsals raises concern about parental understanding, decision-making, and psychosocial outcomes after newborn screening.
Practice Implications
Measurement of specific behaviors may help PCPs to improve communication, and thereby improve the patient experience.
doi:10.1016/j.pec.2012.10.024
PMCID: PMC3566874  PMID: 23194821
9.  Effects of Tailored Knowledge Enhancement on Colorectal Cancer Screening Preference across Ethnic and Language Groups 
Patient education and counseling  2012;90(1):103-110.
Objective
Tailoring to psychological constructs (e.g. self-efficacy, readiness) motivates behavior change, but whether knowledge tailoring alone changes healthcare preferences - a precursor of behavior change in some studies - is unknown. We examined this issue in secondary analyses from a randomized controlled trial of a tailored colorectal cancer (CRC) screening intervention, stratified by ethnicity/language subgroups (Hispanic/Spanish, Hispanic/English, non-Hispanic/English).
Methods
Logistic regressions compared effects of a CRC screening knowledge-tailored intervention versus a non-tailored control on preferences for specific test options (fecal occult blood or colonoscopy), in the entire sample (N = 1164) and the three ethnicity/language subgroups.
Results
Pre-intervention, preferences for specific tests did not differ significantly between study groups (experimental, 64.5%; control 62.6%). Post-intervention, more experimental participants (78.6%) than control participants (67.7%) preferred specific tests (P <0.001). Adjusting for pre-intervention preferences, more experimental group participants than control group participants preferred specific tests post-intervention [average marginal effect (AME) = 9.5%, 95% CI 5.3-13.6; P <0.001]. AMEs were similar across ethnicity/language subgroups.
Conclusion
Knowledge tailoring increased preferences for specific CRC screening tests across ethnic and language groups.
Practice Implications
If the observed preference changes are found to translate into behavior changes, then knowledge tailoring alone may enhance healthy behaviors.
doi:10.1016/j.pec.2012.08.017
PMCID: PMC3522756  PMID: 22985627
10.  Genetics specialists’ perspectives on disclosure of genomic incidental findings in the clinical setting 
Patient education and counseling  2012;90(1):133-138.
Objective
Evidence documenting management of incidental findings (IFs) from clinical genomic testing is limited. The aim of this study was to examine genetics specialists’ perspectives regarding current and preferred disclosure of clinical genomic IFs.
Methods
50 genetics specialists, including medical geneticists, laboratory professionals, genetic counselors, and nurses participated in structured telephone interviews. Data were analyzed using qualitative content analysis and descriptive statistics.
Results
Most specialists had encountered IFs, but definitions of IFs varied. They discussed challenges with informing patients about the prospect of IFs and disclosing IFs to patients. Causing psychological harm to patients was a concern. Participants were divided on whether IFs needed to be clinically significant and/or actionable in order to be disclosed to patients. Creating formal disclosure guidelines was considered useful, but only if they were flexible. Additional counseling, more interdisciplinary communication, maintaining contact with patients, and a centralized database to interpret IFs were also proposed.
Conclusion
Genetics specialists offer insights into the challenges of defining IFs, knowing when and how to disclose them, and the potential need for flexible disclosure guidelines.
Practice Implications
Further discussion between practicing genetics specialists is needed to develop consensus on the development of best-practice guidelines for IF management.
doi:10.1016/j.pec.2012.09.010
PMCID: PMC3522795  PMID: 23068909
Genomics; incidental findings; clinical genetics; disclosure
11.  African American Prostate Cancer Survivors’ Treatment Decision-Making and Quality of Life 
Objective
To examine African-American prostate cancer (PCa) survivors’ involvement in treatment decision-making (TDM), and examine the association between TDM and quality of life (QOL), using secondary data.
Methods
African-American PCa survivors (181) were recruited from the North Carolina Central Cancer Registry. Participants completed a cross-sectional survey that asked about their chosen cancer treatment, TDM factors, and PCa-specific QOL (using the Expanded Prostate Cancer Index – EPIC). Multivariate analysis of covariance was conducted to determine the association between TDM and QOL, controlling for confounders.
Results
Most men reported being active (44.2%) or collaborative (38.1%) in TDM, while 14.4% preferred a passive role. Adjusting for marital status, education and treatment, passive patients reported somewhat better QOL compared to active patients in the following QOL domains: urinary summary (p=.04), urinary function (p=.01), and urinary incontinence (p=.03).
Conclusion
Most African-American PCa survivors preferred to be, and were, actively or collaboratively involved in TDM. However, those who preferred a passive role reported better PCa-specific QOL for the urinary domain compared to others.
Practice Implications
It is important to assess patients’ TDM preference. Patients’ QOL may differ by their TDM role, such that active patients may be more bothered by treatment side effects than other patients.
doi:10.1016/j.pec.2012.08.007
PMCID: PMC3536017  PMID: 22940374
prostate cancer; quality of life; treatment decision making
12.  Comparison of Body Perceptions between Obese Primary Care Patients and Physicians: Implications for Practice 
Patient education and counseling  2008;73(1):10.1016/j.pec.2008.04.002.
Objective
To compare the body image and weight perceptions of primary care patients and their physicians as a first step toward identifying a potential tool to aid physician communication.
Methods
Patients with a body mass index (BMI) ≥ 30 (n = 456, 66% female) completed body image and weight status measures after office visits; physicians (n = 29) rated the body figures and weight status of these same patients after office visits.
Results
Controlling for BMI, female patients and their physicians showed little or no difference in body figure selection or weight status classification, whereas male patients were significantly less likely than their physicians to self-identify with larger body figures (z = 3.74, p < .01) and to classify themselves as obese or very obese (z = 4.83, p < .0001).
Conclusion
Findings reveal that physicians and female patients have generally concordant views of the patient’s body size and weight status, whereas male patients perceive themselves to be smaller than do their physicians. The discrepancy between male patient and physician views is especially evident at increasingly larger body figure/weight status categories.
Practice Implications
When counseling male patients on weight loss, it could be helpful to assess body image and use this information to raise patient awareness of their size and to facilitate communication about weight.
doi:10.1016/j.pec.2008.04.002
PMCID: PMC3864616  PMID: 18583089
men’s health; primary care; body image; obesity; weight management
13.  Tailored telephone counseling to improve adherence to follow-up regimens after an abnormal pap smear among minority, underserved women 
Patient education and counseling  2013;93(3):10.1016/j.pec.2013.08.008.
Objective
The present study explored the impact of a tailored telephone counseling intervention on increasing follow-up adherence after an abnormal Pap smear result among low-income, minority women, which may reduce cervical cancer disparity.
Methods
Participants (N = 211) were randomly assigned to receive: (1) a telephone reminder that included an assessment of barriers to adherence, as well as counseling tailored to the barriers elicited; (2) telephone reminder and barriers assessment, followed by a mailed home tailored barriers print brochure; or (3) enhanced standard care comprising telephone reminder and barriers assessment. Assessments were obtained at initial contact and 1-week later, as well as at 6- and 12-months after the initial colposcopy.
Results
The telephone counseling group showed greater adherence to follow-up recommendations than did the combined other two groups (p < 0.05). For the initial colposcopy, tailored telephone barriers counseling was more effective among women with a high school education or less.
Conclusion
Tailored telephone barriers counseling improves adherence to initial colposcopy, as well as to longer-term medical follow-up, among low-income, inner-city women.
Practice Implications
Dissemination of barriers counseling into ongoing telephone reminder calls and contacts may decrease disparities in cancer outcomes, especially among women with less than postsecondary education.
doi:10.1016/j.pec.2013.08.008
PMCID: PMC3852173  PMID: 24007767
Cervical cancer screening; Follow up adherence; Tailored counseling
14.  Negotiating complementary and alternative medicine use in primary care visits with older patients 
Patient education and counseling  2012;89(3):368-373.
Objective
To empirically investigate the ways in which patients and providers discuss Complementary and Alternative Medicine (CAM) treatment in primary care visits.
Methods
Audio recordings from visits between 256 adult patients aged 50 years and older and 28 primary care physicians were transcribed and analyzed using discourse analysis, an empirical sociolinguistic methodology focusing on how language is used to negotiate meaning.
Results
Discussion about CAM occurred 128 times in 82 of 256 visits (32.0%). The most frequently discussed CAM modalities were non-vitamin, non-mineral supplements and massage. Three physician–patient interactions were analyzed turn-by-turn to demonstrate negotiations about CAM use. Patients raised CAM discussions to seek physician expertise about treatments, and physicians adopted a range of responses along a continuum that included encouragement, neutrality, and discouragement. Despite differential knowledge about CAM treatments, physicians helped patients assess the risks and benefits of CAM treatments and made recommendations based on patient preferences for treatment.
Conclusion
Regardless of a physician's stance or knowledge about CAM, she or he can help patients negotiate CAM treatment decisions.
Practice implications
Providers do not have to possess extensive knowledge about specific CAM treatments to have meaningful discussions with patients and to give patients a framework for evaluating CAM treatment use.
doi:10.1016/j.pec.2012.02.020
PMCID: PMC3630233  PMID: 22483672
Discourse analysis; Primary care visits; Complementary medicine; Alternative medicine; Patient participation; Treatment decision making
15.  Health Beliefs, Treatment Preferences and Complementary and Alternative Medicine for Asthma, Smoking and Lung Cancer Self-Management in Diverse Black Communities 
Patient education and counseling  2012;89(3):489-500.
Objectives
The purpose of this literature review is to characterize unconventional health beliefs and complementary and alternative medicine (CAM) for asthma, smoking and lung cancer as those that are likely safe and those that likely increase risk in diverse Black communities. These findings should provide the impetus for enhanced patient-provider communication that elicits patients’ beliefs and self-management preferences so that they may be accommodated, or when necessary, reconciled through discussion and partnership.
Methods
Original research articles relevant to this topic were obtained by conducting a literature search of the PubMed Plus, PsychINFO and SCOPUS databases using combinations of the following search terms: asthma, lung cancer, emphysema, chronic obstructive pulmonary disease (COPD), smoking, beliefs, complementary medicine, alternative medicine, complementary and alternative medicine (CAM), explanatory models, African American, and Black.
Results
Using predetermined inclusion and exclusion criteria, 51 original research papers were retained. Taken together, they provide evidence that patients hold unconventional beliefs about the origins of asthma and lung cancer and the health risks of smoking, have negative opinions of standard medical and surgical treatments, and have favorable attitudes about using CAM. All but a small number of CAM and health behaviors were considered safe.
Conclusions
When patients’ unconventional beliefs and preferences are not identified and discussed, there is an increased risk that standard approaches to self-management of lung disease will be sub-optimal, that potentially dangerous CAM practices might be used and that timely medical interventions may be delayed.
Practice implications
Providers need effective communication skills as the medical dialogue forms the basis of patients’ understanding of disease and self-management options. The preferred endpoint of such discussions should be agreement around an integrated treatment plan that is effective, safe and acceptable to both.
doi:10.1016/j.pec.2012.05.003
PMCID: PMC3463761  PMID: 22683293
16.  “People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy☆ 
Patient Education and Counseling  2013;93(3):420-425.
Objective
Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences.
Methods
Content analysis on the 100 most viewed videos from over 4000 identified in a search for ‘CCSVI’, and qualitative thematic analysis on popular ‘channels’ demonstrating patients’ experiences.
Results
Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS.
Conclusion
Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of ‘evidence’ built on a hybrid of personal experience and medical knowledge.
Practice implications
Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered ‘evidence-based’, practitioners should enhance their understanding of what ‘experiential-evidence’ is deemed significant to patients, particularly in contested areas of healthcare.
doi:10.1016/j.pec.2013.06.006
PMCID: PMC3863946  PMID: 23830239
YouTube; Experience; Evidence; Multiple sclerosis; Activism
17.  The development and testing of a brief (‘gist-based’) supplementary colorectal cancer screening information leaflet☆ 
Patient Education and Counseling  2013;93(3):619-625.
Objective
To design and user-test a ‘gist-based’ colorectal cancer screening information leaflet, which promotes comprehension of the screening offer.
Methods
Twenty-eight individuals approaching screening age were recruited from organisations in deprived areas of England. Using a between-subjects design, we tested iterations of a newly-designed gist-based information leaflet. Participants read the leaflet and answered 8 ‘true’ or ‘false’ comprehension statements. For the leaflet to be considered fit-for-purpose, all statements had to be answered correctly by at least 80% of participants in each round. Alterations were made if this threshold was not met and additional rounds of testing were undertaken.
Results
At round 1, answers to 2/8 statements did not meet the threshold. After changes, answers in round 2 did not reach the threshold for 1/8 statements. In round 3, all answers were adequate and the leaflet was deemed fit-for-purpose. Qualitative data offered solutions such as language and layout changes which led to improved comprehension of the leaflet.
Conclusion
User-testing substantially improved the design and subsequent comprehensibility of a theory-driven gist-based colorectal cancer screening information leaflet.
Practical implications
This leaflet will be evaluated as part of a large national randomised controlled trial designed to reduce socioeconomic inequalities in colorectal cancer screening participation.
doi:10.1016/j.pec.2013.08.013
PMCID: PMC3863947  PMID: 24007765
User-testing; Colorectal cancer; Screening; Fuzzy-trace theory; Health literacy; Information design; Numeracy
18.  Measuring the effects of online health information for patients: Item generation for an e-health impact questionnaire 
Patient Education and Counseling  2013;93(3):433-438.
Objective
The internet is a valuable resource for accessing health information and support. We are developing an instrument to assess the effects of websites with experiential and factual health information. This study aimed to inform an item pool for the proposed questionnaire.
Methods
Items were informed through a review of relevant literature and secondary qualitative analysis of 99 narrative interviews relating to patient and carer experiences of health. Statements relating to identified themes were re-cast as questionnaire items and shown for review to an expert panel. Cognitive debrief interviews (n = 21) were used to assess items for face and content validity.
Results
Eighty-two generic items were identified following secondary qualitative analysis and expert review. Cognitive interviewing confirmed the questionnaire instructions, 62 items and the response options were acceptable to patients and carers.
Conclusion
Using a clear conceptual basis to inform item generation, 62 items have been identified as suitable to undergo further psychometric testing.
Practice implications
The final questionnaire will initially be used in a randomized controlled trial examining the effects of online patient's experiences. This will inform recommendations on the best way to present patients’ experiences within health information websites.
doi:10.1016/j.pec.2013.03.012
PMCID: PMC3863952  PMID: 23598293
E-health; Patients’ experiences; Information; Secondary data analysis; Cognitive debrief interviews
19.  Assessment of a Motivational Interviewing Curriculum for Year 3 Medical Students Using a Standardized Patient Case 
Patient education and counseling  2010;84(1):10.1016/j.pec.2010.10.029.
Objective
We sought to evaluate a year 3 motivational interviewing (MI) curriculum using a standardized patient case.
Methods
The 2-hour small group MI curriculum included a didactic presentation followed by interactive role plays. During a clinical skills assessment at the end of year 3 the MI skills of 80 students who had participated in the curriculum were compared with those of 19 students who had not participated.
Results
The standardized patient reliably rated the students on their performance of 8 items. Students who had participated in the MI curriculum were significantly more proficient than nonparticipating students in the performance of 2 strategic MI skills, importance and confidence rulers (ps < .006). The groups did not differ in their use of patient-centered counseling skills or collaborative change planning commonly used in MI.
Conclusions
Third year medical students can learn to use MI skills that specifically aim to enhance patients’ motivations for change.
Practice Implications
Medical schools should consider providing students with MI training and MI skill assessments using standardized patient cases to help students prepare to counsel patients for behavior change.
doi:10.1016/j.pec.2010.10.029
PMCID: PMC3836602  PMID: 21123019
20.  The role of hope in adaptation to uncertainty: The experience of caregivers of children with Down syndrome 
Patient education and counseling  2011;87(2):10.1016/j.pec.2011.08.015.
Objective
The goal of this study was to investigate the relationships between perceived uncertainty, hope, and adaptation in caregivers of children with Down syndrome (DS).
Methods
A total of 546 caregivers were recruited from local and national DS groups and from a DS clinic list. A cross-sectional survey examined caregivers’ levels of perceived uncertainty, hope, and adaptation. The hope that caregivers had for their child was also measured.
Results
Uncertainty, hope and adaptation were all significantly correlated, with uncertainty and hope independently predicting caregiver adaptation. Caregivers’ motivation to reach goals for their child was higher than their ability to think of ways to meet those goals, and their lessened ability to think of ways to reach goals was significantly related to decreased adaptation levels.
Conclusion
Findings from this study suggest that having hope in the face of uncertainty is important in adaptation but that caregivers struggle with having hope related to thinking of ways to reach goals for their child.
Practice implications
The results of this study indicate that perceived uncertainty and hope may be important targets for improving psychological well-being. Interventions that assist caregivers in setting and attaining appropriate goals may be of particular interest.
doi:10.1016/j.pec.2011.08.015
PMCID: PMC3816013  PMID: 21937189
Uncertainty; Hope; Adaptation; Down syndrome; Caregiver; Parent
21.  Exploring communication pathways to better health: Clinician communication of expectations for acupuncture effectiveness 
Patient education and counseling  2012;89(2):245-251.
Objective
This study tested a pathway whereby acupuncturists’ communication of optimism for treatment effectiveness would enhance patients’ satisfaction during treatment, which in turn would contribute to better pain and function outcomes for patients with osteoarthritis of the knee.
Methods
Secondary analysis from a 2 arm (real vs. sham acupuncture, high vs. neutral expectations) RCT. 311 patients with knee osteoarthritis received acupuncture over 10–12 sessions. Coders rated the degree to which acupuncturists communicated optimism for the treatment’s effectiveness. Satisfaction with acupuncture was assessed 4 weeks into treatment. Pain and function were assessed 6 weeks following treatment.
Results
Patients experiencing better outcomes were more satisfied with acupuncture during treatment, were younger, and had better baseline pain and function scores. Satisfaction during treatment was greater when patients interacted with more optimistic clinicians and had higher pretreatment expectations for acupuncture efficacy.
Conclusion
Acupuncturists’ communication of optimism about treatment effectiveness contributed to pain and function outcomes indirectly through its effect on satisfaction during treatment. Future research should model pathways through which clinician-patient communication affects mediating variables that in turn lead to improved health outcomes.
Practical Implications
While clinicians should not mislead patients, communicating hope and optimism for treatment effectiveness has therapeutic value for patients.
doi:10.1016/j.pec.2012.06.032
PMCID: PMC3489966  PMID: 22857778
22.  Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication 
Objective
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.
Methods
Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.
Results
Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.
Conclusion
Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.
Practice implications
Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.
doi:10.1016/j.pec.2012.04.004
PMCID: PMC3414649  PMID: 22554387
empathy; hospice; family caregiver
23.  Factors Associated with Patient Reports of Positive Physician Relational Communication 
Patient education and counseling  2012;89(1):96-101.
Objective
To evaluate the patient, physician, and visit-related factors associated with patient ratings of positive physician relational communication.
Methods
Pre- and post-visit surveys were conducted with 485 patients attending a routine periodic health exam with one of 64 participating physicians. The audio-recorded visits were coded for elements of patient-physician communication including assertive responses, partnership building, question asking, supportive talk, and expressions of concern.
Results
Patient reports of positive physician relational communication were associated with patient perceptions of how well the physician understood the patient’s health care preferences and values, a patient-physician interaction outside of the exam room, and physician-prompted patient expressions of concern.
Conclusion
In addition to a patient’s perception of their relationship with their physician going into the visit, relatively simple acts like extending the interaction beyond the exam room and ensuring that patients feel invited to express concerns they may have during the visit may influence patient perceptions of physician relational communication.
Practice Implications
This study offers preliminary support for the idea that relational communication and its associated benefits may be fostered through simple physician-driven acts such as interacting with patients outside of the exam room and encouraging patients to express concerns within the visit.
doi:10.1016/j.pec.2012.04.003
PMCID: PMC3431455  PMID: 22554386
24.  Patient Comprehension and Attitudes toward Maintenance Chemotherapy for Lung Cancer 
Patient education and counseling  2012;89(1):102-108.
Objective
Maintenance chemotherapy is a recently approved approach to the treatment of advanced non-small cell lung cancer (NSCLC). We sought to gain insight into patients’ perceptions of maintenance chemotherapy using qualitative methods.
Methods
We conducted thematic content analysis of focus groups at a freestanding cancer center and at an associated safety-net county hospital. Patients with advanced NSCLC who had started but not yet completed first-line platinum doublet chemotherapy were provided visual and written explanations of maintenance chemotherapy before being guided in group discussion.
Results
Key themes to emerge for consideration of maintenance chemotherapy included (1) survival benefits, disease control, and “buying time”; (2) the importance of “doing something”; (3) quality of life concerns; (4) the role of provider opinion/preference; and (5) the importance of logistics.
Conclusions
Patients undergoing first-line chemotherapy for advanced NSCLC were able to understand the concept of maintenance chemotherapy, distinguish it from traditional treatment paradigms, identify pros and cons of this approach, and convey reasons for considering it.
Practice Implications
Advances in oncology care that alter therapy modalities and delivery may significantly impact patient perceptions and treatment experiences. Clinical team members may wish to elicit treatment preferences of first-line patients through clinical discussions that anticipate these considerations.
doi:10.1016/j.pec.2012.04.013
PMCID: PMC3443304  PMID: 22632736
Non-small cell lung cancer; Maintenance chemotherapy; Patient perceptions; Thematic analysis; Dallas; TX
25.  Talking about smoking in primary care medical practice – Results of experimental studies from the US, UK and Germany 
Objective
To analyze effects of patient and physician characteristics on questions and advice about smoking in primary care practice and to examine country differences.
Methods
We conducted a factorial experiment, employing filmed scenarios in which actors played the role of patients with symptoms of coronary heart disease (CHD) or type 2 diabetes. Versions were filmed with patient-actors of different gender, age, race, and socioeconomic status. The videotapes were presented to primary care physicians in the US, UK and Germany. Physicians were asked whether they would ask questions about smoking or give cessation advice.
Resultst
Female and older CHD patients are less likely to be asked or get advice about smoking in all three countries. Effects of physician attributes are weak and inconsistent. Compared to physicians in the US and the UK, German doctors are least likely to ask questions or give advice.
Conclusions
Although all physicians viewed the same cases their questioning and advice giving differed according to patient attributes and country. Due to the experimental design external validity of the study may be limited.
Practice implications
Findings have implications for medical education and professional training of physicians as well as for the organization and financing of health care.
doi:10.1016/j.pec.2012.04.011
PMCID: PMC3444567  PMID: 22595655
primary care physicians; questions about smoking; cessation advice; comparative study

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