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BackgroundPatient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients’ context into their communication and care with patients. Patient contextual data (PCD) encompass social determinants of health and patients’ needs, values, goals, and preferences relevant to their care. PCD can be challenging to collect as a routine component of the time-limited primary care visit. ObjectiveThis study aims to determine if patient-provider communication and patient activation are different for patient users and patient nonusers of an electronic health record (EHR)–integrated PCD tool and assess if the impact of using PCD on patient-provider communication and patient activation differs for Black and White patients. MethodsWe describe a randomized controlled trial of a prospective cohort of non-Hispanic White and Black patients who receive primary care services at a midwestern academic health care system in the United States. We will evaluate whether providing PCD through a consumer informatics tool enhances patient-provider communication, as measured by the Communication Assessment Tool, and we will evaluate patient activation, as measured by the Patient Activation Measure for PCD tool users and nonusers. Furthermore, owing to racial disparities in care and communication, we seek to determine if the adoption and use of the tool might narrow the differences between patient groups. ResultsThe trial was funded in November 2017 and received local ethics review approval in February 2019. The study began recruitment in April 2019 and enrollment concluded in October 2019 with 301 participants. The analysis was completed in May 2020, and trial results are expected to be published in winter 2020. ConclusionsRecently, there has been increased attention to the role of health information technology tools to enable patients to collaborate with providers through the sharing of PCD. The adoption of such tools may overcome the barriers of current EHRs by directly engaging patients to submit their contextual data. Effectively, these tools would support the EHR in providing a more holistic understanding of the patient. Research further supports that individuals who have robust digital engagement using consumer informatics tools have higher participation in treatment follow-up and self-care across populations. Therefore, it is critical to investigate interventions that elicit and share patients’ social risks and care preferences with the health care team as a mechanism to improve individualized care and reduce the gap in health outcomes. Trial RegistrationClinicalTrials.gov NCT03766841; https://clinicaltrials.gov/ct2/show/NCT03766841 International Registered Report Identifier (IRRID)RR1-10.2196/20309

The Center for International Blood and Marrow Transplant Research (CIBMTR) prepares an annual set of summary slides to summarize the trends in transplantation and cellular therapies. For the first time in the 2023 summary slides, the CIBMTR incorporated data for patients receiving chimeric antigen receptor T cell (CAR-T) infusions. In addition, data on patient-reported outcomes (PROs) are included. This report aims to update the annual trends in US hematopoietic cell transplantation (HCT) activity and incorporate data on the use of CAR-T therapies. A second aim is to present and describe the development, implementation, and current status of PRO data collection. In August 2020, the CIBMTR launched the Protocol for Collection of Patient-Reported Outcomes Data (CIBMTR PRO Protocol). The CIBMTR PRO Protocol operates under a centralized infrastructure to reduce the burden to centers. Specifically, PRO data are collected from a prospective convenience sample of adult HCT and CAR-T recipients who received treatment at contributing centers and consented for research. Data are merged and stored with the clinical data and used under the governance of the CIBMTR Research Database Protocol. Participants answer a series of surveys developed by the Patient Reported Outcomes Measurement Information System (PROMIS) focusing on physical, social and emotional, and other measures assessing financial well-being, occupational functioning, and social determinants of health. To complement traditionally measured clinical outcomes, the surveys are administered at the same time points at which clinical data are routinely collected. As of September 2023, PRO data have been collected from 993 patients across 25 different centers. With the goal of incorporating these important patient perspectives into standard clinical care, the CIBMTR has added the PRO data to Data Back to Centers (DBtC). Through expanding the data types represented in the registry, the CIBMTR aims to support holistic research accounting for the patients' perspective in improving patient outcomes. CIBMTR PRO data aim to provide a foundation for future large-scale, population-level evaluations to identify areas for improvement, emerging disparities in access and health outcomes (eg, by age, race, and ethnicity), and new therapies that may impact current treatment guidelines. Continuing to collect and grow the PRO data is critical for understanding these changes and identifying methods for improving patients' quality of life., (Copyright © 2024 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Hematopoietic cell transplantation (HCT) has undergone many advances over the decades. Trends in HCT utilization have been impacted by research based on the data and samples collected by the Center for International Blood and Marrow Transplant Research (CIBMTR). Here, we provide a summary report of the CIBMTR Biorepository resource and describe the biospecimen inventory along with collection and request procedures. The diversity captured in this inventory reflects transplant activity, and these samples can be leveraged for secondary analyses to generate more data and insights to advance the field. We describe how our resources have already impacted HCT practice and elaborate on possibilities for further collaboration and utilization to maximize capabilities and research opportunities. Hematopoietic cell transplant data and biorepository resources at the CIBMTR have been and continue to be leveraged to improve patient outcomes., (Copyright © 2024. Published by Elsevier Inc.)

Objective: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD)., Methods: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used., Results: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports., Conclusions: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care., (© 2024. The Author(s), under exclusive licence to Springer Nature America, Inc.)

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., (© 2024 American Cancer Society.)

Background: Decisions for how to resolve infertility are complex and may lead to regret. We examined whether couples and individuals who sought a consultation from a reproductive specialist for infertility later expressed decisional regret about their family-building choices and whether regret was associated with parental role, family-building paths, or outcomes., Methods: This longitudinal mixed methods study included women and their partners who completed a questionnaire prior to their initial consultation with a reproductive specialist and 6 years later. The six-year questionnaire included the Ottawa Decision Regret Scale referencing "the decisions you made about how to add a child to your family." A score of 25+ indicates moderate-to-severe regret. Additional items invited reflections on family-building decisions, treatments, and costs. A systematic content analysis assessed qualitative themes., Results: Forty-five couples and 34 individuals participated in the six-year questionnaire (76% retention rate), Half (n = 61) of participants expressed no regret, which was similar by role (median 0 for women and supporting partners, F = .08; p = .77). One in 5 women and 1 in 7 partners expressed moderate-to-severe regret. Women who did not pursue any treatment had significantly higher regret (median 15; F = 5.6, p < 0.01) compared to those who pursued IVF (median 0) or other treatments (median 0). Women who did not add a child to their family had significantly higher regret (median 35; F = 10.1, p < 0.001) than those who added a child through treatment (median 0), through fostering/adoption (median 0), or naturally (median 5). Among partners, regret scores were not associated with family-building paths or outcomes. More than one-quarter of participants wished they had spent less money trying to add a child to their family. Qualitative themes included gratitude for parenthood despite the burdensome process of family-building as well as dissatisfaction or regret about the process. Results should be confirmed in other settings to increase generalizability., Conclusion: This longitudinal study provides new insight into the burden of infertility. For women seeking parenthood, any of the multiple paths to parenthood may prevent future decision regret. Greater psychosocial, financial, and decision support is needed to help patients and their partners navigate family-building with minimal regret., (© 2023. The Author(s).)

Background and Objectives: There is a lack of research regarding the use of sleep aids after hematopoietic stem cell transplantation (HCT). We describe the prevalence of sleep aid administration in the HCT unit and identify associations with patient or clinical characteristics., Patients and Methods: In this retrospective analysis of sequential inpatient HCTs from July 1 to December 31, 2016 we describe whether and when patients were prescribed sleep aid medications. Chi-square tests determined significant differences between patient characteristics, sleep aid prescription, and time of prescription., Results: Of the 225 patients identified, 193 (86%) were prescribed sleep aids. Significantly more women received prescriptions for sleep aids (90.4%) than men (81%; P = .047). One hundred patients (44%) received prescriptions exclusively while in the hospital., Conclusion: Findings show a high prevalence of sleep medication use in patients undergoing inpatient HCT, primarily during hospitalization. Future efforts toward standardized recommendations to optimize peri-transplant sleep would help clinicians and patients.

Hematopoietic cell transplantation (HCT) is a complex treatment used in malignancies and some non-malignant diseases. The informed consent process for HCT can also be complex due to patient- and process-related barriers. The informed consent process needs to be a dynamic and ongoing process, not simply a checklist. As a result of the realities of HCT, we highlight some potential pitfalls to the informed consent process including uncertainty, sociocultural and communication barriers, and decisional regret. The purpose of this comprehensive review is to highlight unique situations which can result in failure of the informed consent process. We also offer potential solutions to these pitfalls, primarily making the informed consent more patient focused through dynamic and continuous processes to mitigate decisional regret., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

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., (© 2022. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Toxicities after chimeric antigen receptor T cell (CAR-T) therapy are well known, yet the patient experience during and after CAR-T therapy has not been well described outside of the trial setting. We explored the patient experience after CAR-T therapy to inform the patient-reported outcomes (PRO) measurement approach for the Center for International Blood and Marrow Transplant Research (CIBMTR). We recruited (1) adult patients diagnosed with a hematologic malignancy 14 days to 6 months after receiving a commercial CAR T cell product who had agreed to be contacted by the CIBMTR, (2) caregivers of those patients, and (3) clinical experts in CAR-T therapy. Telephone interviews were conducted following a semistructured guide that included open-ended questions about symptoms and functioning. We conducted a systematic content analysis of each transcript using prespecified codes representing common domains of health, as well as open coding for emergent themes. Forty patients at 29 centers, 15 of their caregivers, and 15 experts from 9 centers participated, representing diversity with respect to age, sex, race/ethnicity, and years in practice (experts). Patients, caregivers, and experts shared largely consistent impressions of the patient experience after CAR-T therapy. Commonly described themes included anxiety, cognitive dysfunction, depression, fatigue, pain, impaired physical function, gastrointestinal symptoms, sexual dysfunction, sleep difficulties, need for support, financial impact, hospitalization, communication with healthcare providers, and the COVID-19 pandemic. Limitations in patients' ability to participate in social roles and activities was the most prevalent theme, found in nearly all interviews. In the setting of CAR-T therapy, a multidimensional approach to PRO measurement is needed that includes physical, mental, and social health, as well as the financial impact of this novel treatment. High-quality existing PRO tools are available to measure these concepts. Results will inform the CIBMTR measurement of PROs after CAR-T therapy and may be applicable to other CAR-T studies that aim to represent patient experiences., (Copyright © 2023 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

Objectives: 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., Methods: Linear regression determined associations between sexual function, relationship characteristics and anxiety in 979 LGB participants., Results: 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., Conclusion: Using a nationally representative sample of LGB adults, differences were found in factors related to sexual function and satisfaction by gender and sexual orientation., Competing Interests: The authors declare that they have no conflict of interest or competing interest., (© 2023 Taylor & Francis Group, LLC.)

For myelodysplastic syndrome (MDS), allogeneic hematopoietic cell transplantation (alloHCT) is the only available curative therapy. The Blood and Marrow Transplant Clinical Trials Network study 1102 (BMT CTN 1102, NCT02016781) was a multicenter, biologic assignment trial based on matched donor availability in adults aged 50-75 with higher risk de novo MDS who were candidates for reduced-intensity conditioning (RIC) alloHCT. The primary analysis showed that those who received alloHCT had a survival benefit, but whether this is at the cost of worse quality of life (QOL) has not been described in detail. English- and Spanish-speaking trial participants completed the Functional Assessment of Cancer Therapy-General (FACT-G), the SF-36, and the EQ-5D, at enrollment, every 6 months until 24 months, and 36 months. We compared patient-reported outcome (PRO) scores between study arms using an inverse probability weighted-independent estimating equation (IPW-IEE) model. Between January 2014 and November 2018, 384 subjects (median age 66.7 years, range: 50.1-75.3) enrolled at 34 centers. PRO completion rates were generally high at 65%-78%. The PRO trajectories for both arms were similar, with most decreasing or stable from baseline to 6 months and improving thereafter. Baseline PRO scores were the most consistent independent predictors of subsequent QOL outcomes and survival, even after controlling for clinical and patient-level factors. For older adults with MDS, the survival advantage associated with donor availability and alloHCT did not come at the cost of worse QOL. These results should reassure older patients and clinicians who prefer a curative approach to treating MDS., (© 2022 Wiley Periodicals LLC.)

Objectives: While patient interest in telehealth increases, clinicians' perspectives may influence longer-term adoption. We sought to identify facilitators and barriers to continued clinician incorporation of telehealth into practice., Methods: A cross-sectional 24-item web-based survey was emailed to 491 providers with ≥50 video visits (VVs) within an academic health system between 1 March 2020 and 31 December 2020. We quantitatively summarised the characteristics and perceptions of respondents by using descriptive and test statistics. We used systematic content analysis to qualitatively code open-ended responses, double coding at least 25%., Results: 247 providers (50.3%) responded to the survey. Seventy-nine per cent were confident in their ability to deliver excellent clinical care through VV. In comparison, 48% were confident in their ability to troubleshoot technical issues. Most clinicians (87%) expressed various concerns about VV. Providers across specialties generally agreed that VV reduced infection risk (71%) and transportation barriers (71%). Three overarching themes in the qualitative data included infrastructure and training, usefulness and expectation setting for patients and providers., Discussion: As healthcare systems plan for future delivery directions, they must address the tension between patients' and providers' expectations of care within the digital space. Telehealth creates new friction, one where the healthcare system must fit into the patient's life rather than the usual dynamic of the patient fitting into the healthcare system., Conclusion: Telehealth infrastructure and patient and clinician technological acumen continue to evolve. Clinicians in this survey offered valuable insights into the directions healthcare organisations can take to right-size this healthcare delivery modality., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Hematopoietic cell transplantation (HCT) has been successfully used to treat many malignant and nonmalignant conditions. As supportive care, donor selection, and treatment modalities evolve, documenting HCT trends and outcomes is critical. This report from the Center for International Blood and Marrow Transplant Research (CIBMTR) provides an update on current transplantation activity and survival rates in the United States. Additional data on the use and outcomes of HCT in the adolescent and young adult (AYA) population are included. AYA patients more frequently receive peripheral blood stem cell grafts than pediatric patients, which may reflect differences in practice in pediatric versus adult treatment centers. The proportions of donor types also differ those in adult and pediatric populations. Outcomes for patients in the AYA age range are similar to those of pediatric patients for acute myelogenous leukemia but worse for acute lymphoblastic leukemia. Outcomes for both leukemias are better in AYA patients compared with older adults. Comparing the time periods 2000 to 2009 and 2010 to 2019 revealed significant improvement in overall survival across the age spectrum, but the greatest improvement in the AYA age group., (Copyright © 2022. Published by Elsevier Inc.)

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., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

The importance of patient-reported outcomes (PROs) in cellular therapies, including hematopoietic cell transplantation (HCT) is highlighted in this study. Longitudinal collection of PROs in a registry is recommended for several reasons, yet to date, PROs are not routinely collected from HCT patients to augment clinical registry data. The aim of this study was to determine the feasibility of electronic PRO data collection by a national clinical outcomes registry, by assessing differences between who does and does not report PROs. We conducted a cross-sectional pilot collection of PROs from HCT recipients after treatment using computer-adapted tests from the Patient-Reported Outcome Measurement Information System (PROMIS). We implemented centralized data collection through the Center for International Blood and Marrow Transplant Research (CIBMTR) among patients who underwent HCT for myelodysplastic syndromes (MDS), were at least 6 months post-HCT, and spoke English or Spanish. The main objective was identifying patient, disease, and transplant-related differences associated with completion of electronic PROs. Patients were excluded from analysis if they were determined to be ineligible (deceased, did not speak English or Spanish, refused to be contacted by the CIBMTR). A total of 163 patients were contacted and potentially eligible to participate; of these, 92 (56%) enrolled and 89 (55%) completed the PRO assessment. The most frequent reason for incomplete surveys was inability to contact patients (n = 88), followed by declining to participate in the study (n = 37). There were no sociodemographic or age differences between those who completed the PRO survey (n = 89) and eligible nonresponders (n = 155). Patient scores were within 3 points of the US average of 50 for all symptoms and functioning except physical functioning. Responders and nonresponders did not exhibit meaningfully different sociodemographic characteristics. Difficulty contacting patients posed the greatest barrier and also provided the greatest opportunity for improvement. Once enrolled, survey completion was high. These results support standardizing centralized PRO data collection through the CIBMTR registry., (Copyright © 2021 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

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.

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., (© 2021. Society of General Internal Medicine.)

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: NCT03766841https://clinicaltrials.gov/ct2/show/NCT03766841?term=crotty&draw=2&rank=1.

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., Competing Interests: Declaration of Competing Interest I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story. Bradley Crotty reports serving as an advisor to Buoy Health. Gregory Makoul and Jennifer Moore report employment with PatientWisdom Inc. Rachel Cusatis, Jeana Holt, Onur Asan, Joni Williams, Sandile Nukuna, Kathryn E. Flynn, Joan Neuner, declare no conflicts of interest., (Copyright © 2019 Elsevier B.V. All rights reserved.)

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.

Background: There are known gender differences in the impacts infertility has on quality of life and well-being. Less is known about how infertile couples spend time on fertility-related tasks and associations with quality of life. The purpose of this study is to evaluate whether time spent on tasks related to family-building decision-making (including research, reflection, discussions with partner, discussions with others, and logistics) were associated with fertility-specific quality of life or anxiety among new patients., Methods: Couples or individuals (N = 156) with upcoming initial consultations with a reproductive specialist completed the Fertility Quality of Life (FertiQoL) tool, which produces a Core (total) score and four subscales: Emotional, Relational, Social, and Mind-Body. We developed questions to measure time spent in the previous 24 h on tasks related to family-building. We tested for differences by gender in time use (McNemar's Test) and used ordinary least squares regression to analyze the relationship between time use and FertiQoL scores., Results: In the week before a new consultation, a higher percentage of women reported time spent in the past 24 h in research, reflecting, discussion with others, and logistics compared to male partners (all p < 0.05). In adjusted models, more time spent reflecting was associated with worse FertiQoL scores for both men and women, as well as with higher anxiety for men. Time spent in discussion with others was associated with higher anxiety for women but better Social FertiQoL scores for men., Conclusions: Couples seeking infertility consultation with a specialist reported spending time on tasks related to family-building before the initial visit. There were gender differences in the amount of time spent on these tasks, and time was associated with fertility-specific quality of life and anxiety.

Inequality in socioeconomic status (SES)-education, income, and occupation-may further exacerbate the health gap between the "haves" and "have nots" by shaping health behaviors such as physical activity. For example, those in higher socioeconomic positions are consistently found to engage in more physical activity according to public health reports that focus on leisure activity. However, previous research investigating the role of SES in shaping engagement in housework, childcare, and paid work suggests different opportunities for physical activity. This discrepancy in how researchers ask questions about physical activity and the pathways people take to healthy activity raises the question: Do socioeconomic differences in physical activity look different when we look at other domains of physical activity beyond leisure? And, does how we measure SES matter? We draw on data from the American Time Use Survey (ATUS) to assess the roles of education, income, and occupation in the amount of time individuals spend in different types of physical activity. Results demonstrate that socioeconomic differences in physical activity change depending on the activity domain and, therefore, when all domains of physical activity are accounted for compared to leisure-only. Further, the measurement of SES matters: key indicators of SES (education, income, and occupation) have varying associations with levels and types of physical activity. Findings from this research have important implications for the assessment of physical activity across SES, ultimately impacting survey research and public health.

US health surveys consistently report that men and those with higher socioeconomic status (SES) engage in more physical activity than women and lower SES counterparts, using questions that ask about physical activity during leisure time. However, social characteristics such as gender and SES shape understandings of and access to leisure-based physical activity as well as other domains where healthy activity is available - namely house work, care work, and paid work. Thus, the physical activity of US adults may look different when what counts as physical activity expands beyond leisure activity. The current study uses Amazon's Mechanical Turk platform to conduct a 2-by-2-by-2 factorial experiment that crosses three types of physical activities: leisure, house or care work, and paid work. We find that physical activity questions that prime respondents - that is, ask respondents - to consider house/care work or paid work lead to increased minutes reported of physical activity compared to not priming for physical activity, while asking about leisure is no different from having no physical activity primed. The effect on reported physical activity of priming with house/care work is stronger for women than men, demonstrating support for gendered specialization of time spent in the house and care work domain. The effects on reported physical activity of priming with house/care work and paid work are stronger for those with less education compared to more education, consistent with socioeconomic divisions in access to physical activity in house/care work and employment. This study highlights the contingence of our understanding of the physical activity of US adults on both its measurement in surveys and the social forces which shape understanding of and access to physical activity.