Measuring the therapeutic bond in genetic counseling: Testing measurement error in the bond subscale of the Working Alliance Inventory.

The therapeutic relationship is a key component of successful genetic counseling. In psychotherapy, a strong therapeutic relationship can improve patient health outcomes and a poor relationship can worsen psychological functioning. Investigation of the therapeutic relationship in genetic counseling has shown evidence for a similar pattern. Reliable measurement of the therapeutic relationship is necessary for consistency across studies in the genetic counseling context. One measure that has been adapted for use in genetic counseling is the Working Alliance Inventory (WAI). However, there have been no studies of the factor structure or item-level method bias analyses for the genetic counseling-adapted version of the WAI. The goal of this study was to test the factor structure of the WAI observer version (WAI-O) bond subscale and assess method bias in a genetic counseling context. We hypothesized that differences in factor structures would exist for items that were positively (n = 9) versus negatively (n = 3) worded (reverse coded). Secondary data analysis was performed on two data sets that utilized the WAI-O in genetic counseling contexts. Data set 1 used simulated genetic counseling sessions that were judged by analog clients recruited through crowdsourcing platforms (N = 861). Data set 2 was conducted with genetic counseling clients, and sessions were evaluated by a research team (N = 120). Principal axis factor analysis with oblique oblimin rotation supported a two-factor solution for the WAI-O bond subscale across data sets. Items factored based on wording, with the positively worded items loading together and the negatively worded items loading on the second factor. Confirmatory factor analyses supported the removal of all negatively worded items from the instrument across data sets. Results suggest that the negatively worded items on the WAI-O may be capturing a construct inconsistent with the positively worded items and support rewording and/or excluding them from use for a more reliable measure of the therapeutic bond.

Effects of Implicit Racial Bias and Standardized Patient Race on Genetic Counseling Students' Patient-Centered Communication.

Clinician racial bias has been associated with less patient-centered communication, but little is known about how it affects trainees' communication. We investigated genetic counseling students' communication during sessions with Black or White standardized patients (SPs) and the extent to which communication was associated with SP race or student scores on the Race Implicit Association Test (IAT). Sixty students conducted a baseline SP session and up to two follow-up sessions. Students were randomly assigned to a different White or Black SP and one of three clinical scenarios for each session. Fifty-six students completed the IAT. Session recordings were coded using the Roter Interaction Analysis System. Linear regression models assessed the effects of IAT score and SP race on a variety of patient-centered communication indicators. Random intercept models assessed the within-student effects of SP race on communication outcomes during the baseline session and in follow-up sessions (n = 138). Students were predominantly White (71%). Forty students (71%) had IAT scores indicating some degree of pro-White implicit preference. Baseline sessions with White relative to Black SPs had higher patient-centeredness scores. Within-participant analyses indicate that students used a higher proportion of back-channels (a facilitative behavior that cues interest and encouragement) and conducted longer sessions with White relative to Black SPs. Students' stronger pro-White IAT scores were associated with using fewer other facilitative statements during sessions with White relative to Black SPs. Different patterns of communication associated with SP race and student IAT scores were found for students than those found in prior studies with experienced clinicians.

Genetic counseling students' use of patient-centered communication skills predicts standardized patient satisfaction during virtual simulated sessions.

Communication is essential to effective genetic counseling, but few studies have systematically evaluated methods of assessing communication skills among genetic counseling trainees. The study's objective is to compare the strength of associations between standardized patient (SP) satisfaction with simulated genetic counseling sessions and student skill use during the sessions, as reported by SPs and students. We hypothesized that (1) Both SP- and student-reported skill use will be significantly associated with SP satisfaction ratings during the baseline simulation and (2): SP ratings of student skill use will show a stronger relationship to SP satisfaction than student self-rating of skill use. Sixty genetic counseling students and recent graduates (referred to as "students") from accredited U.S. and Canadian programs participated in the study and completed a baseline virtual-simulated genetic counseling session. Both students and SPs completed post-session questionnaires about communication skill use (a 22-item checklist) and SPs completed a satisfaction questionnaire based on the session (a 14-item Likert scale). Multilevel regression models assessed associations between SP satisfaction during the baseline session and SP- or student-reported skill use. SP satisfaction was significantly associated with skill use reported by both SPs and students, but the model based on SP report explained a higher proportion of the variance in SP satisfaction than student-reported skill use (SP model fixed effects R2  = 27%, adjusted R2  = 21%; vs. student model R2  = 7%, adjusted R2  = -2%). For both the SP and student models, use of more skills from the LISTEN domain (which focused on eliciting the patient's perspective) was associated with higher SP satisfaction, while other skill category domains were not. These findings support the SP satisfaction measure as sensitive to variation in student performance of key communication skills, especially those eliciting the patient's perspective. Moreover, SP assessment of session satisfaction can be a useful assessment of student communication performance and a meaningful proxy for actual patient satisfaction.

Acceptability of an online communication training intervention for genetic counseling students.

Technology provides opportunities to enhance communication skills training for genetic counseling graduate students. We assessed the acceptability of an online communication training program. Graduate student volunteers completed five online training modules on basic communication skills with opportunities to practice the skills within three simulated/standardized patient (SP) sessions. Participants completed online questionnaires reporting on acceptability, perceived usefulness, and realism of the modules and SP sessions. They also reported on the ease of transferring skills from the modules to clinical practice. Out of the 60 students who completed the baseline session, 35 (58%) completed all five training modules. Out of these 35 students, most found the modules to be useful (94%) and agreed that they were relevant to clinical practice (97%). At least 88% of participants found the genetic counselors, patient, and case scenarios to be realistic. Twenty-eight students had participated in clinical rotations since completing the intervention. Of these, 17 (61%) reported that it was at least slightly easy to use the skills in actual clinical cases. Most students also reported being able to transfer the skills they had learned into clinical practice. While the training was well-received, the relatively low completion rate of 58% raises concern that the intervention may need formal integration into the program curriculum to succeed due to the time and effort demands on students.

Applying the practice-based competencies to evaluate and characterize the contracting process within genetic counseling sessions.

Contracting is a skill used by genetic counselors (GCs) to establish a shared vision for the session. Ensuring that patients and GCs are aligned on expectations for the encounter allows GCs to meet patient needs and support patient autonomy. Although contracting is described in the practice-based competencies (PBCs), the process has not been systematically observed in practice. We sought to further elucidate the skills used for contracting within genetic counseling sessions through directed content analysis of transcripts from 148 simulated prenatal and cancer genetic counseling sessions. An a priori codebook and rating scale were developed based on four contracting sample skills described in the PBCs: (a) describing the genetic counseling process, (b) eliciting client concerns, (c) applying client concerns to a session agenda, (d) modifying the agenda in response to emerging concerns. The rating scale described the quality of each skill on a 4-point scale of "absent," "minimal," "adequate," and "excellent." The codebook and rating scale were pilot tested with 40% of transcripts (n = 60). Three authors independently coded and rated the final 60% of transcripts (n = 88), resolving discrepancies via a consensus process. We found that the four PBC skills were present in most sessions (88%-98%), and on average, GCs received "adequate" scores on all four skills. We also identified three additional components of contracting not described in the PBCs: assessing whether client concerns were met, inviting to interrupt, and providing opportunity for partner concerns. This study represents the first attempt to evaluate GC performance of a PBC during a genetic counseling session. Our findings demonstrate that the PBC sample contracting skills reflect practice and suggest that they can be used in assessment of the genetic counseling contracting process. This type of analysis could be adapted in the future to provide support for other standards of practice in the genetic counseling field.

Assessing genetic counselor communication in response to virtual, asynchronous simulated video prompts.

Online methods of teaching and assessing communication skills meet not only the need for remote education during the COVID-19 pandemic but also future demand for flexible training methods. This study aimed to explore the utility of standardized video prompts intended to elicit samples of genetic counselors' (GCs') interpersonal, psychosocial, and counseling skills by describing variation in GCs' socioemotional communication during their responses to a series of videotaped communication challenges. We analyzed the previously recorded communication of 43 GCs responding to a set of videotaped simulated client prompts related to a cancer or prenatal counseling session. We applied the Roter Interaction Analysis System to the prompts and GCs' responses, focusing on the proportion of socioemotional content as an indicator of interpersonal, psychosocial, and counseling skill use. We analyzed the responses of 21 GCs to the cancer prompts and 22 GCs to the prenatal prompts. Two-sample t tests explored differences in the proportion of socioemotional content in GCs' responses to prompts within and across the two scenarios. Overall, socioemotional statements accounted for 31% (SD = 8%) of all GC statements in response to the prenatal prompts and 36% (SD = 9%) of statements in response to the cancer prompts (Bonferroni-adjusted p=.49). The proportion of socioemotional communication in individual prompt responses varied from 4% (SD = 12%) to 76% (SD = 26%) across the cancer prompt series and 10% (SD = 13%) to 76% (SD = 30%) across the prenatal prompt series. Across the two scenarios, two of 10 matched prompts showed significant differences in the proportion of GCs' socioemotional content of the prompt responses (p's < 0.001). These differences appear related to differences in the socioemotional nature of the prompts. These findings inform online methods of communication assessment that are useful during restrictions to in-person learning due to COVID-19, as well as future hybrid training and research efforts.

Awareness and Discussions About Chronic Kidney Disease Among African-Americans with Chronic Kidney Disease and Hypertension: a Mixed Methods Study.

BACKGROUND: Routine primary care visits provide an educational opportunity for African-Americans with chronic kidney disease (CKD) and CKD risk factors such as hypertension. The nature of patient-physician discussions about CKD and their impact on CKD awareness in this population have not been well explored. OBJECTIVE: To characterize patient CKD awareness and discussions about CKD between patients and primary care physicians (PCPs). DESIGN: Mixed methods study. PATIENTS: African-American patients with uncontrolled hypertension (≥ 140/90 mmHg) and CKD (albuminuria or eGFR < 60 ml/min/1.73 m2) recruited from an urban primary care clinic. MAIN MEASURES: We assessed patient CKD awareness with questionnaires and audio-recorded patients-PCP discussions during a routine visit. We characterized discussions and used multivariate regression analysis to identify independent patient and visit predictors of CKD awareness or CKD discussions. RESULTS: Among 48 African-American patients with uncontrolled hypertension and CKD, 29% were aware of their CKD. After adjustment, CKD awareness was associated with moderate-severe CKD (stages 3-4) (vs. mild CKD [stages 1-2]) (prevalence ratio [PR] 2.82; 95% CI 1.18-6.78) and inversely associated with diabetes (vs. without diabetes) (PR 0.28; 95% CI 0.10-0.75). CKD discussions occurred in 30 (63%) visits; most focused on laboratory assessment (n = 23, 77%) or risk factor management to delay CKD progression (n = 19, 63%). CKD discussions were associated with moderate-severe CKD (vs. mild CKD) (PR 1.57; 95% CI 1.04-2.36) and diabetes (vs. without diabetes) (PR 1.42; 95% CI 1.09-1.85), and inversely associated with uncontrolled hypertension (vs. controlled) (PR 0.58; 95% CI 0.92-0.89). In subgroup analysis, follow-up CKD awareness did not change by presence or absence of CKD discussion (10.5% vs. 7.7%, p = 0.8). CONCLUSIONS: In patients at risk of CKD progression, few were aware of CKD, and CKD discussions were not associated with CKD awareness. More resources may be needed to enhance the clarity of clinical messages regarding CKD and its significance for patients' health. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01902719.

Hypertension Self-management in Socially Disadvantaged African Americans: the Achieving Blood Pressure Control Together (ACT) Randomized Comparative Effectiveness Trial.

BACKGROUND: Effective hypertension self-management interventions are needed for socially disadvantaged African Americans, who have poorer blood pressure (BP) control compared to others. OBJECTIVE: We studied the incremental effectiveness of contextually adapted hypertension self-management interventions among socially disadvantaged African Americans. DESIGN: Randomized comparative effectiveness trial. PARTICIPANTS: One hundred fifty-nine African Americans at an urban primary care clinic. INTERVENTIONS: Participants were randomly assigned to receive (1) a community health worker ("CHW") intervention, including the provision of a home BP monitor; (2) the CHW plus additional training in shared decision-making skills ("DoMyPART"); or (3) the CHW plus additional training in self-management problem-solving ("Problem Solving"). MAIN MEASURES: We assessed group differences in BP control (systolic BP (SBP) < 140 mm Hg and diastolic BP (DBP) < 90 mmHg), over 12 months using generalized linear mixed models. We also assessed changes in SBP and DBP and participants' BP self-monitoring frequency, clinic visit patient-centeredness (i.e., extent of patient-physician discussions focused on patient emotional and psychosocial concerns), hypertension self-management behaviors, and self-efficacy. KEY RESULTS: BP control improved in all groups from baseline (36%) to 12 months (52%) with significant declines in SBP (estimated mean [95% CI] - 9.1 [- 15.1, - 3.1], - 7.4 [- 13.4, - 1.4], and - 11.3 [- 17.2, - 5.3] mmHg) and DBP (- 4.8 [- 8.3, - 1.3], - 4.0 [- 7.5, - 0.5], and - 5.4 [- 8.8, - 1.9] mmHg) for CHW, DoMyPART, and Problem Solving, respectively). There were no group differences in BP outcomes, BP self-monitor use, or clinic visit patient-centeredness. The Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 18.7 [4.0, 87.3]) and self-efficacy scores (OR [95% CI] 4.7 [1.5, 14.9]) at 12 months compared to baseline, while other groups did not. Compared to DoMyPART, the Problem Solving group had higher odds of high hypertension self-care behaviors (OR [95% CI] 5.7 [1.3, 25.5]) at 12 months. CONCLUSION: A context-adapted CHW intervention was correlated with improvements in BP control among socially disadvantaged African Americans. However, it is not clear whether improvements were the result of this intervention. Neither the addition of shared decision-making nor problem-solving self-management training to the CHW intervention further improved BP control. TRIAL REGISTRY: ClinicalTrials.gov Identifier: NCT01902719.

Feasibility, face validity, and sensitivity of a web-based simulation tool for assessing genetic counseling communication.

We conducted a test of concept study to explore feasibility, face validity, and sensitivity of an interactive web-based video tool designed to assess communication practices of genetic counselors in response to standardized video prompts. A convenience sample of genetic counselors was recruited from the National Society of Genetic Counselors to respond verbally to a set of brief standardized video prompts from a virtual client in a prenatal genetic counseling session and a cancer genetic counseling session, embedded in an interactive online platform. Participant verbal responses to prompts were captured through a secure voicemail service. A total of 89 participants attempted to use the online tool and 51 (57%) successfully completed the simulation and produced an audio record of their responses. The average length of recordings was 12.2 min. Face validity was high; participants rated the virtual client as similar to clients seen in practice (75% agree; 12% strongly agree, 7% neutral, 6% disagree) and rated their own responses to the virtual client prompts as similar to those in practice (63% agree; 19% strongly agree; 12% neutral, 6% disagree). Feasibility was assessed by ratings of ease of use (57% agreed, 24% strongly agreed, 17% were neutral, and none disagreed). Content checklists showed that the tool was sensitive enough to detect variation in frequency of certain topics discussed by participants that was similar to previous descriptive studies. The test of concept demonstrated feasibility, face validity, and sensitivity of this communication tool with possible applications in research, training, and program evaluation.

Genetic counselor implicit bias and its effects on cognitive and affective exchanges in racially discordant simulations.

Previous studies have linked clinicians' implicit racial bias with less patient-centered communication between healthcare providers and patients in a variety of healthcare contexts. The current study extends this research by exploring the influence of implicit racial bias in genetic counselors' (GCs') facilitation of simulated clients' cognitive and emotional processing during genetic counseling sessions. We conducted a secondary analysis of a nationally representative sample of genetic counseling sessions of White and ethnic and/or racial minority (Black and Latinx) simulated clients with a subset of 60 GCs who had completed a Race Implicit Association Test (IAT). Linguistic Inquiry Word Count (LIWC) was applied to session transcripts to identify word use by the simulated client consistent with emotional and cognitive processing. The Roter Interaction Analysis System (RIAS) was used to link GC statements consistent with facilitation of emotional and cognitive processing, as used in previous studies. Multiple linear regression analyses were performed to relate LIWC and RIAS variables to GC IAT scores, client race/ethnicity, and statistical interaction between GC IAT scores and client race/ethnicity. GCs used more cognitive facilitation strategies with ethnic and/or racial minority than with White clients (p = .04). There were no statistically significant associations between GCs' pro-White implicit bias and GCs' facilitation of cognitive and emotional processing or clients' use of positive, negative, or cognitive process words. While implicit bias may affect some communication processes, our analysis did not show a relationship between GC IAT score and how GCs help clients process emotional or cognitive information conveyed during a session. It is also possible that the LIWC measure of cognitive and emotional processing is not a sensitive enough measure to capture an implicit bias effect if indeed one is present.

A Multicenter Comparison of Complementary and Alternative Medicine (CAM) Discussions in Oncology Care: The Role of Time, Patient-Centeredness, and Practice Context.

BACKGROUND: Little is known about how complementary and alternative medicine (CAM) is discussed in cancer care across varied settings in the U.S. METHODS: In two practices affiliated with one academic medical center in southern California (SoCal), and one in the upper Midwest (UM), we audio-recorded patient-clinician interactions in medical oncology outpatient practices. We counted the frequency and duration of CAM-related conversations. We coded recordings using the Roter Interaction Analysis System. We used chi-square tests for bivariate analysis of categorical variables and generalized linear models for continuous variables to examine associations between dialogue characteristics, practice setting, and population characteristics with the occurrence of CAM discussion in each setting followed by multivariate models adjusting for clinician clustering. RESULTS: Sixty-one clinicians and 529 patients participated. Sixty-two of 529 (12%) interactions included CAM discussions, with significantly more observed in the SoCal university practice than in the other settings. Visits that included CAM were on average 6 minutes longer, with CAM content lasting an average of 78 seconds. In bivariate tests of association, conversations containing CAM included more psychosocial statements from both clinicians and patients, higher patient-centeredness, more positive patient and clinician affect, and greater patient engagement. In a multivariable model including significant bivariate terms, conversations containing CAM were independently associated with higher patient-centeredness, slightly longer visits, and being at the SoCal university site. CONCLUSION: The frequency of CAM-related discussion in oncology varied substantially across sites. Visits that included CAM discussion were longer and more patient centered. IMPLICATIONS FOR PRACTICE: The Institute of Medicine and the American Society of Clinical Oncology have called for more open discussions of complementary and alternative medicine (CAM). But little is known about the role population characteristics and care contexts may play in the frequency and nature of those discussions. The present data characterizing actual conversations in practice complements a much larger literature based on patient and clinician self-report about CAM disclosure and use. It was found that CAM discussions in academic oncology visits varied significantly by practice context, that the majority were initiated by the patient, and that they may occur more when visit time exists for lifestyle, self-care, and psychosocial concerns.

Discussion of memory during primary care visits of older adults with cognitive impairment and accompanying family.

OBJECTIVES: Cognitive impairment is underdiagnosed in primary care. Understanding factors that precipitate memory-related discussion could inform strategies to improve diagnosis and counseling. We assessed whether: 1) having a cognitive impairment or dementia diagnosis, 2) ratings of cognition by clinicians, or 3) ratings of cognition by family companions were associated with memory-related discussion during primary care visits. METHODS: We examined audio-recorded primary care visits of cognitively impaired patients aged 65 years and older, family companions (n = 93 dyads), and clinicians (n = 14). Cognitive impairment and dementia diagnoses were extracted from the electronic health record. Clinicians and family rated patient cognition on a 10-point scale in postvisit surveys. We measured memory-related discussion using a ratio of memory-related discussion episodes to total visit statements. RESULTS: We observed more memory-related discussion during primary care visits of patients with a diagnosis of mild cognitive impairment (+7.8% episodes; P < .001) or dementia (+26.3% episodes; P < .001) than no diagnosis. Clinician and family ratings of cognition varied by diagnosis: among patients with no diagnosis, family rated worse impairment than clinicians (average: 2.4 versus 1.3; P = .004) while for patients with a dementia diagnosis, clinicians rated worse impairment than family (average: 7.1 versus 5.5; P = .006). Each unit increase in clinician-rated severity of cognitive impairment was associated with more memory-related discussion (+2.6% episodes; P < .001); this association was attenuated for family (+0.7% episodes; P = .095). CONCLUSIONS: Discussion of cognitive impairment appears largely driven by clinician ratings of cognition and presence of an established diagnosis. Findings suggest potential benefit of engaging family to improve cognitive impairment detection in primary care.

Patient-Family Agenda Setting for Primary Care Patients with Cognitive Impairment: the SAME Page Trial.

BACKGROUND: Establishing priorities for discussion during time-limited primary care visits is challenging in the care of patients with cognitive impairment. These patients commonly attend primary care visits with a family companion. OBJECTIVE: To examine whether a patient-family agenda setting intervention improves primary care visit communication for patients with cognitive impairment DESIGN: Two-group pilot randomized controlled study PARTICIPANTS: Patients aged 65 + with cognitive impairment and family companions (n = 93 dyads) and clinicians (n = 14) from two general and one geriatrics primary care clinic INTERVENTION: A self-administered paper-pencil checklist to clarify the role of the companion and establish a shared visit agenda MEASUREMENTS: Patient-centered communication (primary); verbal activity, information disclosure including discussion of memory, and visit duration (secondary), from audio recordings of visit discussion RESULTS: Dyads were randomized to usual care (n = 44) or intervention (n = 49). Intervention participants endorsed an active communication role for companions to help patients understand what the clinician says or means (90% of dyads), remind patients to ask questions or ask clinicians questions directly (84% of dyads), or listen and take notes (82% of dyads). Intervention dyads identified 4.4 health issues for the agenda on average: patients more often identified memory (59.2 versus 38.8%; p = 0.012) and mood (42.9 versus 24.5%; p = 0.013) whereas companions more often identified safety (36.7 versus 18.4%; p = 0.039) and personality/behavior change (32.7 versus 16.3%; p = 0.011). Communication was significantly more patient-centered in intervention than in control visits at general clinics (p < 0.001) and in pooled analyses (ratio of 0.86 versus 0.68; p = 0.046). At general clinics, intervention (versus control) dyads contributed more lifestyle and psychosocial talk (p < 0.001) and less biomedical talk (p < 0.001) and companions were more verbally active (p < 0.005). No intervention effects were found at the geriatrics clinic. No effect on memory discussions or visit duration was observed. CONCLUSION: Patient-family agenda setting may improve primary care visit communication for patients with cognitive impairment. TRIAL REGISTRATION: ClinicalTrials.gov : NCT02986958.

"Let him speak:" a descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment.

OBJECTIVE: Cognitive impairment poses communication challenges in primary care. Although family "companions" commonly attend primary care visits of older adults with cognitive impairment, little is known about how their involvement affects communication. Therefore, we sought to understand how companion involvement affects the quality of primary care visit communication for older adults with cognitive impairment. METHODS: Cross-sectional, descriptive qualitative study participants were as follows: (1) English-speaking adults age 65 or older with mild, moderate, or severe cognitive impairment; (2) family members or other unpaid companions who accompany older adults to primary care visits; and (3) primary care clinicians. Twenty semi-structured and in-depth qualitative interviews of older adults and their companions (N = 20 dyads) and two focus groups (N = 10 primary care clinicians) were conducted. Interviews and focus groups were transcribed and analyzed thematically. RESULTS: Family companions commonly facilitate communication by advocating for patients, ensuring the accuracy of information exchange and understanding, and preserving rapport. Significant communication challenges were also identified, including patient and companion role ambiguity, competing visit agendas, and primary care clinician confusion regarding the most accurate source of information. Patients, companions, and clinicians each identified strategies to improve communication, chief among them being to identify, differentiate, and respect both patient and companion priorities and perspectives. CONCLUSIONS: Family companions actively participate in primary care visits of older adults with cognitive impairment in ways that promote and inhibit effective communication. Findings suggest the need for strategies that more effectively and purposefully involve family in the care of primary care patients with cognitive impairment. Copyright © 2017 John Wiley & Sons, Ltd.

Evaluation of the Informational Content, Readability and Comprehensibility of Online Health Information on Monogenic Diabetes.

The purpose of this study was to assess the informational content, readability, suitability and comprehensibility of websites offering educational information about monogenic diabetes available to patients. The top 20 results from 15 queries in four search engines were screened. Content analysis was performed by two independent coders. Readability was determined using Flesch-Kincaid grade level (FKGL) and Simplified Measure of Goobledygook (SMOG). The Comprehensibility Assessment of Materials (SAM + CAM) scale was utilized to evaluate website suitability and comprehensibility. Only 2% (N = 29) of 1200 screened websites met inclusion criteria. Content analysis showed that 16 websites presented information on at least the most common forms of MODY (1, 2 and 3), four addressed the utility of genetic counseling, and none included support resources for patients. All websites exceeded the consensus readability level (6th grade) as assessed by FKGL (10.1 grade) and SMOG (12.8 ± 1.5 grades). Although the majority (N = 20) of websites had an overall "adequate" to "superior" quality score (SAM + CAM score > = 40%), more than one-third scored "not suitable" in categories of content, literacy demand, graphics, and learning motivation. The online educational resources for monogenic diabetes have a high readability level and require improvement in ease of use and comprehensibility for patients with diabetes.

Communication Predictors of Patient and Companion Satisfaction with Alzheimer's Genetic Risk Disclosure.

The objective of this study was to identify how features of Alzheimer's disease (AD) genetic risk disclosure communication relate to patient and visit companion satisfaction. We conducted secondary analyses of 79 session recordings from the fourth REVEAL Study, a randomized-controlled trial of AD genetic risk disclosure among patients with mild cognitive impairment. Patient and companion satisfaction were ascertained from postdisclosure surveys. The Roter Interaction Analysis System (RIAS) was used to code triadic communication between the counselor, patient, and companion. High satisfaction was evident for 24% of patients (N = 19) and 48% of companions (N = 38). Multivariate logistic regressions showed that high patient satisfaction was associated with patients' expression of emotions (OR = 1.1, 95% CI: 1.0-1.1) and companions' questions about psychosocial and lifestyle topics (OR = 1.8, 95% CI: 1.1-2.8). High companion satisfaction was positively related to the RIAS overall patient-centeredness score for the session (OR = 4.0, 95% CI: 1.0-15.6) (all p-values <0.05). Communication predictors of patient and companion satisfaction reflect specific or summary indicators of patient-centeredness. Findings also suggest that visit companions positively influence patient satisfaction. The study results support the growing literature and policy attention directed toward delivering family-centered care.

The Role of Patient-Provider Communication in Engagement and Re-engagement in HIV Treatment in Bamako, Mali: A Qualitative Study.

Mounting evidence in sub-Saharan Africa suggests poor patient-provider communication (PPC) negatively impacts patient engagement (retention in care and adherence to medication) in antiretroviral therapy (ART) programs. In Bamako, Mali, where 36% of ART patients are lost to follow-up within 12 months of initiating treatment, we aimed to define features of positive PPC according to patient values and explore the mechanisms by which these features may sustain engagement and re-engagement according to patient and provider experiences. We conducted 33 in-depth interviews and 7 focus groups with 69 patients and 17 providers in five ART clinics. Regarding sustaining engagement, participants highlighted "establishing rapport" as a foundational feature of effective PPC, but also described how "responding to emotional needs", "eliciting patient conflicts and perspective" and "partnering to mitigate conflicts" functioned to address barriers to engagement and increase connectedness to care. Patients who had disengaged felt that "communicating reacceptance" may have prompted them re-engage sooner and that tailored "partnering to mitigate conflicts" would be more effective in sustaining re-engagement than the standard adherence education providers typically offer. Optimizing provider skills related to these key PPC features may help maximize ART patient engagement, ultimately improving health outcomes and decreasing HIV transmission in sub-Saharan Africa.

Social comparisons and quality of life following a prostate cancer diagnosis.

PURPOSE: The objective was to explore the relationships among cognitive appraisals of prostate cancer (challenge, threat, and harm/loss), social comparisons, and quality of life in men previously diagnosed. Design, Sample, & Methods: Men who had participated in prostate cancer support groups completed a cross-sectional questionnaire (N = 189). Multivariable linear regression was used to evaluate social comparisons as mediators of quality of life while controlling for uncertainty and optimism. FINDINGS: Positive and negative social comparisons were parallel mediators of the relationships between challenge or threat appraisals and quality of life, while only negative social comparisons mediated the relationship between harm/loss appraisals and quality of life. CONCLUSIONS: These findings demonstrate the importance of social comparisons in accounting for the effect of cognitive appraisals of prostate cancer on quality of life among men in support groups. Implications for Psychosocial Providers: Interventions to improve quality of life could address reduction of maladaptive comparisons, a strategy that could be tailored based on the patient's appraisal of prostate cancer.

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists.

BACKGROUND: To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. PATIENTS AND METHODS: A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. RESULTS: Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003); oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). CONCLUSIONS: Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.

Parent Satisfaction With Communication Is Associated With Physician's Patient-Centered Communication Patterns During Family Conferences.

OBJECTIVES: To evaluate the association between physician's patient-centered communication patterns and parental satisfaction during decision-making family conferences in the PICU. DESIGN: Single-site, cross-sectional study. SETTING: Forty-four-bed PICUs in a free-standing children's hospital. PARTICIPANTS: Sixty-seven English-speaking parents of 39 children who participated in an audiorecorded family conference with 11 critical care attending physicians. MEASUREMENTS AND MAIN RESULTS: Thirty-nine family conferences were audiorecorded. Sixty-seven of 77 (92%) eligible parents were enrolled. The conference recordings were coded using the Roter Interaction Analysis System and a Roter Interaction Analysis System-based patient-centeredness score, which quantitatively evaluates the conversations for physician verbal dominance and discussion of psychosocial elements, such as a family's goals and preferences. Higher patient-centeredness scores reflect higher proportionate dialogue focused on psychosocial, lifestyle, and socioemotional topics relative to medically focused talk. Parents completed satisfaction surveys within 24 hours of the conference. Conferences averaged 45 minutes in length (SD, 19 min), during which the medical team contributed 73% of the dialogue compared with parental contribution of 27%. Physicians dominated the medical team, contributing 89% of the team contribution to the dialogue. The majority of physician speech was medically focused (79%). A patient-centeredness score more than 0.75 predicted parental satisfaction (ß = 12.05; p < 0.0001), controlling for the length of conference, child severity of illness, parent race, and socioeconomic status. Parent satisfaction was negatively influenced by severity of illness of the patient (ß = -4.34; p = 0.0003), controlling for previously mentioned factors in the model. CONCLUSIONS: Parent-physician interactions with more patient-centered elements, such as increased proportions of empathetic statements, question asking, and emotional talk, positively influence parent satisfaction despite the child's severity of illness.