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Purpose: Cognitive dysfunction is a known complication following cellular therapies (CT), which can be assessed through performance based and patient-reported measures. We performed a systematic scoping review to assess self-reported cognitive function measures used among adult CT patients and describe long-term results, including associations with clinical outcomes. Methods: Library databases were searched from inception to February 2020 according to PRISMA guidelines. Additional studies were identified through reference lists and trial protocols. Two members of the research team screened titles and abstracts and resolved discrepancies. Articles that met eligibility criteria continued to full-text review, with 25% double screening. Articles were removed if they (1) were not original research, peer-reviewed articles; (2) were the wrong disease, age, or treatment-specific patient population; (3) did not use patient-reported outcomes; (4) did not separately report cognitive function outcomes. Results: Of the1952 articles, 56 were included. Twenty-one patient-reported measures of cognitive function were used; most frequently the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30), which includes a two-item cognitive function subscale (57%; n = 32). Thirteen studies collected performance-based and self-reported measures and of those (n = 6) who assessed associations found moderate correlations (range r =.13-.58). Longitudinal patterns showed declines in cognitive function soon after treatment (< 1 month) returning to baseline at 1 year. Cognitive function was often associated with other quality of life measures, chiefly depression (n = 5). Conclusions: EORTC-QLQ-C30 is the most commonly used to measure, though there remain numerous measures used, including several measures with little previous validation and investigator developed items. [ABSTRACT FROM AUTHOR]

BACKGROUND: Cognitive interviewing is a technique that can be used to improve and refine questionnaire items. We describe the basic methodology of cognitive interviewing and illustrate its utility through our experience using cognitive interviews to refine a questionnaire assessing parental understanding of concepts related to preterm birth. METHODS: Cognitive interviews were conducted using current best practices. Results were analyzed by the multidisciplinary research team and questionnaire items that were revealed to be problematic were revised. RESULTS: Revisions to the questionnaire items were made to improve clarity and to elicit responses that truly reflected the participants understanding of the concept. CONCLUSION: Cognitive interviewing is a useful methodology for improving validity of questionnaire items, we recommend researchers developing new questionnaire items design and complete cognitive interviews to improve their items and increase confidence in study conclusions. [ABSTRACT FROM AUTHOR]

Background: Patient contextual data (PCD) are often missing from electronic health records, limiting the opportunity to incorporate preferences and life circumstances into care. Engaging patients through tools that collect and summarize such data may improve communication and patient activation. However, differential tool adoption by race might widen health care disparities. Objective: Determine if a digital tool designed to collect and present PCD improves communication and patient activation; secondarily, evaluate if use impacts outcomes by race. Design, Setting, and Participants: A pragmatic, two-armed, non-blinded, randomized controlled trial conducted during 2019 in a primary care setting. Intervention: The PCD tool (PatientWisdom) invited patients to identify preferences, values, goals, and barriers to care. Patients were randomized to a standard pre-visit email or facilitated enrollment with dedicated outreach to encourage use of the tool. Main Outcomes and Measures: Outcomes of interest were post-visit patient communication and patient activation measured by the Communication Assessment Tool (CAT) and Patient Activation Measure (PAM), respectively. Outcomes were evaluated using treatment-on-the-treated (TOT) and intention-to-treat (ITT) principles. Key Results: A total of 301 patients were enrolled. Facilitated enrollment resulted in a five-fold increase in uptake of the PCD tool. TOT analysis indicated that the PCD tool was associated with notable increases in specific CAT items rated as excellent: "treated me with respect" (+ 13 percentage points; p = 0.04), "showed interest in my ideas" (+ 14 percentage points; p = 0.03), "showed care and concern" (+ 16 percentage points; p = 0.02), and "spent about the right amount of time with me" (+ 11 percentage points; p = 0.05). There were no significant pre/post-visit differences in PAM scores between arms (− 4.41 percentage points; p = 0.58). ITT results were similar. We saw no evidence of the treatment effect varying by race in ITT or TOT analyses. Conclusions and Relevance: The inclusion of PCD enhanced essential aspects of patient-provider communication but did not affect patient activation. Outcomes did not differ by race. Trial Registration: Clincaltrials.gov identifier: NCT03766841 [ABSTRACT FROM AUTHOR]

This paper examines the relationship between student characteristics of online learning readiness and student outcomes in online courses at two higher educational institution. Data were collected from student surveys (student characteristics of readiness and outcomes) and merged with institutional student information systems data (e.g., demographics and course grades). Multiple regression analyses revealed that several student characteristics of online learning readiness significantly influenced student outcomes. MANOVA analyses were conducted to examine between group differences of each student characteristics among underrepresented student groups. Significant findings are reported for minorities and for students with disabilities. [ABSTRACT FROM AUTHOR]

Background: Allogeneic hematopoietic stem cell transplantation (alloHCT) is potentially curative but with known negative effects on quality of life. In the current study, the authors investigated whether patients expressed regret after undergoing HCT and the relationships between clinical outcomes and quality of life.Methods: Center for International Blood and Marrow Transplant Research data from 184 adults who completed the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) before undergoing alloHCT and at day 100 were used. Additional time points were 6 months and 12 months. Regret was measured using a FACT-BMT item not included in scoring: "I regret having the bone marrow transplant." The authors evaluated FACT-BMT scores and regret using Student t-tests. Covariance pattern models were used to determine predictors of regret over time, including baseline characteristics and post-alloHCT outcomes (acute or chronic graft-versus-host-disease, disease recurrence).Results: At 100 days, 6 months, and 12 months, approximately 6% to 8% of patients expressed regret; a total of 15% expressed regret at any time point. Regret was found to be associated with lower FACT-BMT scores at 6 months and 12 months (P < .001). Higher baseline FACT-BMT and social well-being scores were associated with a reduced risk of expressing regret. The risk of regretting transplantation was 17.5 percentage points (95% confidence interval, 5.5-29.7 percentage points) greater in patients who developed disease recurrence after HCT compared with patients who did not.Conclusions: Among patients who underwent alloHCT and lived to 100 days, the majority did not report regretting their transplantation. Regret was found to be related to disease recurrence. Social connectedness may serve as a protective factor against later regret. Future work should explore regret in other patient groups and use qualitative methods to inform best practices for reducing regret. [ABSTRACT FROM AUTHOR]

Background: Effective communication is integral to patient-centered care, yet external pressures can impede the ability to discuss important topics. One strategy to facilitate communication is pre-visit collection and sharing of patient contextual data (PCD), including life circumstances such as their beliefs, needs, and concerns.Objective: To understand how patients and care team members perceive the electronic collection of PCD and its impact on communication in the context of a large academic health system that implemented PatientWisdom, a new technology that elicits PCD from patients and integrates within the electronic health record (EHR).Methods: We conducted focus groups with patients (n = 26) and semi-structured interviews with primary care team members (n = 20). Qualitative analysis of focus group/interviews included an iterative and reflexive inductive technique to uncover emergent themes.Results: Four themes were reflected among both patient and care team: (1) the technology enhances the patient's voice; (2) the technology creates a safe space for patients to share sensitive topics; (3) PCD facilitates rapport not only between patient and provider but the entire care team; (4) PCD aligns patient and clinician goals. Two unique themes emerged among patients: (1) PCD provides opportunity for reflection; (2) PCD humanizes patients in the clinical context. One theme was evident in provider comments: collecting PCD may potentially undermine trust if not reviewed by clinical teams.Conclusion: PCD collected directly from patients and available within the EHR was seen by patients and care team members as beneficial to communication. PCD collection supports a paradigm shift towards coproduction of health information and a shared responsibility for information gathering but requires investment from patients and care team to ensure the data are effectively utilized.Practice Value: PCD may be useful for team-based care, enabling physicians and non-physician staff to more quickly and responsively connect with patients. [ABSTRACT FROM AUTHOR]

Background: The Center for International Blood and Marrow Transplant Research (CIBMTR) provides a 1-year overall survival calculator to estimate outcomes for individual patients before they undergo allogeneic hematopoietic cell transplantation (HCT) to inform risk. The calculator considers pre-HCT clinical and demographic characteristics, but not patient-reported outcomes (PROs). Because pre-HCT PRO scores have been associated with post-HCT outcomes, the authors hypothesized that adding PRO scores to the calculator would enhance its predictive power. Methods: Clinical data were obtained from the CIBMTR and the Blood and Marrow Transplant Clinical Trials Network. The PRO measures used were the 36-Item Short Form Survey (SF-36) and the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation. One thousand thirty-three adult patients were included. Results: When adjusted for clinical characteristics, the SF-36 physical component score was significantly predictive of 1-year survival (hazard ratio [HR], 0.88; 95% confidence interval [CI], 0.81-0.95; p = .0015), whereas the mental component score was not (HR, 1.02; 95% CI, 0.95-1.10; p = 0.6396). The baseline single general health question on the SF-36 was also significantly associated with mortality (HR, 1.91 for those reporting fair/poor health vs. good, very good, or excellent health; 95% CI, 1.33-2.76; p = .0005). The addition of PRO scores to the calculator did not result in a significant change in the model's predictive ability. Self-reported pre-HCT scores were strongly predictive of self-reported health status (odds ratio, 3.35; 95% CI, 1.66-6.75; p = .0007) and quality of life (odds ratio, 3.24; 95% CI, 1.93-5.41; p < .0001) after HCT. Conclusions: The authors confirmed the significant, independent association of pre-HCT PRO scores with overall survival, although adding PRO scores to the survival calculator did not improve its performance. They also demonstrated that a single general health question was as accurate as the full measure for predicting survival, an important finding that may reduce respondent burden and promote its inclusion in routine clinical practice. Validation of these findings should be performed. [ABSTRACT FROM AUTHOR]

Background: Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease. Method: Twenty patients and ten professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. Results: The impact of AL amyloidosis on patients' life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients' and from the perspectives of professionals who care for patients with AL amyloidosis. Conclusion: These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis. [ABSTRACT FROM AUTHOR]

The Patient Activation Measure (PAM) assesses a person's level of knowledge, skills, and confidence to self-manage their day-to-day health. We conducted a mediation analysis to examine potential direct effects of race on significantly lower baseline PAM scores in Black than in White participants (p<0.001) who were a subset of 184 adults who participated in a randomized controlled trial. In the mediation analysis, using natural indirect effects, the continuous outcome was the PAM score. The mediators were income, education, ability to pay bills, and health literacy; race (Black or White) was the "exposure." The results indicate that income (p=0.025) and difficulty paying monthly bills (p=0.04) mediated the relationship between race and baseline PAM score, whereas health literacy (p=0.301) and education (p=0.436) did not. Researchers must further investigate the role of economic diversity as an underlying mechanism of patient activation and differences in outcomes. Clinical Trial Registration: Avoiding Health Disparities When Collecting Patient Contextual Data for Clinical Care and Pragmatic Research: NCT03766841 https://clinicaltrials.gov/ct2/show/NCT03766841?term=crotty&draw=2&rank=1 [ABSTRACT FROM AUTHOR]

The purpose of this study was to describe associations between relationship status, anxiety, and sexual function and satisfaction in lesbian, gay, and bisexual (LGB) adults. Linear regression determined associations between sexual function, relationship characteristics and anxiety in 979 LGB participants. Relationship status was not related to sexual interest in gay men. Partnered relationship status was associated with higher sexual satisfaction for gay men, lesbians, and bisexual women. Anxiety symptoms were negatively associated with sexual interest, satisfaction, and orgasm pleasure for gay men but not associated with sexual outcomes in lesbian women. Using a nationally representative sample of LGB adults, differences were found in factors related to sexual function and satisfaction by gender and sexual orientation. [ABSTRACT FROM AUTHOR]

Objective: Use the RE-AIM framework to examine the implementation of a patient contextual data (PCD) Tool designed to share patients' needs, values, and preferences with care teams ahead of clinical encounters.Materials& Methods: Observational study that follows initial PCD Tool scaling across primary care at a Midwestern academic health network. Program invitations, enrollment, patient submissions, and clinician views were tracked over a 1-year study period. Logistic regression modeled the likelihood of using the PCD Tool, accounting for patient covariates.Results: Of 58,874 patients who could be contacted by email, 9,183 (15.6%) became PCD Tool users. Overall, 76% of primary care providers had patients who used the PCD Tool. Older age, female gender, non-minority race, patient portal activation, and Medicare coverage were significantly associated with increased likelihood of use. Number of office visits, medical issues, and behavioral health conditions also associated with use. Primary care staff viewed 18.7% of available PCD Tool summaries, 1.1% to 57.6% per clinic.Discussion: The intervention mainly reached non-minority patients and patients who used more health services. Given the requirement for an email address on file, some patients may have been underrepresented. Overall, patient reach and adoption and clinician adoption, implementation, and maintenance of this Tool were modest but stable, consistent with a non-directive approach to fostering adoption by introducing the Tool in the absence of clear expectations for use.Conclusion: Healthcare organizations must implement effective methods to increase the reach, adoption, implementation, and maintenance of PCD tools across all patient populations. Assisting people, particularly racial minorities, with PCD Tool registration and actively supporting clinician use are critical steps in implementing technology that facilitates care. [ABSTRACT FROM AUTHOR]

Background: Limited patient-provider communication about sexual health is a crucial barrier to patients receiving treatment for sexual problems, and little is known about how patient sexual orientation is associated with patient-provider communication about sexual problems.Objective: To describe the prevalence of patient-provider communication about sexual problems and the associations between communication and (1) persistent sexual problems and (2) whether those who identified as lesbian, gay, or bisexual had disclosed their sexual orientation to their clinicians.Design: Cross-sectional, online survey PARTICIPANTS: 4325 English-speaking US adults from KnowledgePanel®, a probability-based sample of the civilian, noninstitutionalized population.Main Measures: Sexual orientation, disclosure of sexual orientation (being "out") to a health care provider, communication with health care providers regarding sexual problems or concerns, and persistent sexual problems or concerns.Key Results: In the past year, 8-15% of US adults discussed a sexual problem or concern with a health care provider. Between 23 and 42% of US adults reported persistent sexual problem(s) in the past year, and of those, 18% of gay/lesbian women, 20% of heterosexual women, 22% of bisexual women, 30% of gay men, 31% of heterosexual men, and 37% of bisexual men had discussed a sexual concern with a clinician. Eighty percent of gay/lesbian women and 70% of gay men had disclosed their sexual orientation to their regular health care provider, versus only 24% of bisexual men and women. Among those who were "out," 30% had ever talked to a clinician about a sexual problem compared with 17% of those who were not "out." A smaller proportion of lesbian women had ever received care or treatment for a sexual problem, 6% compared with 14-23% in the other groups.Conclusions: There are significant unmet needs among US adults with regard to patient-provider communication about sexual problems or concerns. Improving patient-provider communication about sexual health is critical. [ABSTRACT FROM AUTHOR]