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Background: Previous research suggests patients living with inflammatory bowel disease (IBD) understand IBD remission differently than healthcare professionals, which could influence patient expectations and clinical outcomes. We investigated 3 questions to better understand this: (1) How do patients currently understand remission; (2) Do patients currently face any barriers to communicating with their healthcare professional about remission; and (3) Can existing educational material be improved to help patients feel more prepared to discuss remission and treatment goals with their healthcare professional?, Methods: We sent a web-based survey to adult patients with IBD in the United States. This survey included an educational experiment where patients were randomly assigned to 1 of 3 improved versions of existing educational material., Results: In total, 1495 patients with IBD completed the survey. The majority of patients (67%) agreed that remission is possible in IBD, but there was significant diversity in how they defined it with the most common being "my symptoms are reduced" (22%) and "I am no longer experiencing any symptoms" (14%). Patients reported being able to communicate openly with their healthcare professionals. Exposure to improved educational material did not have a statistically significant effect on patients' feelings of preparedness for discussing different aspects of their care with their healthcare professionals., Conclusions: Our study confirms that patients tend to define remission in terms of resolving symptoms. We found little evidence of barriers preventing patients from discussing remission with their healthcare professionals. This suggests that educational material could be used to resolve this discrepancy in understanding., (© 2024 Crohn’s & Colitis Foundation. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation.)

Background: Community initiatives can shape health behaviors, such as physical activity and dietary habits, across a population and help reduce the risk of developing chronic disease. To achieve this goal and impact health outcomes, Pasadena Vibrant Community aimed to engage communities in an ongoing dialogue about the importance of healthy behaviors, implement and advance community-based strategies to promote health, and improve diet and physical activity behaviors. The initiative was centered around a collaboration between a backbone organization, steering committee, and 7 collaborating organizations funded to implement multicomponent, evidence-based programs.. The common agenda was detailed in a community action plan, which included 19 interventions targeting healthy eating and active living among adults and youth in Pasadena, Texas., Methods: A mixed methods evaluation of the initiative was conducted over 4 years. Data sources included document reviews of quarterly progress reports (n = 86) and supplemental data reports (n = 16) provided by collaborating organizations, annual Steering Committee surveys (n = 4), and interviews conducted with staff from a subset of Collaborating Organizations (n = 4)., Results: The initiative reached over 50,000 community members per year through 19 evidence-based interventions and impacted health outcomes, including knowledge and adoption of healthy eating practices and increased physical activity. Thirty-one systems-level changes were implemented during the initiative, including 16 environmental changes. Steering Committee meetings and shared goals enabled connections, communication, and cooperation, which allowed Collaborating Organizations to address challenges and combine resources to deliver their programs., Conclusions: Community initiatives can effectively permeate the community by reaching individuals, improving physical activity and dietary habits, and ensuring sustainability. Based on the experience reported here, the success of a community initiative can be facilitated if collaborating organizations come together to implement evidence-based interventions and tailor them to the community, and if they are empowered by significant leadership and supportive collaboration and aligned by a common agenda., (© 2024. The Author(s).)

Colorectal cancer (CRC) is the third leading cause of cancer-related deaths in the United States. Despite the availability of multiple screening options, CRC screening is underutilized. We conducted a survey of patients (n = 2973) who were prescribed the multi-target stool DNA (mt-sDNA) screening test (commercialized as Cologuard ® and manufactured by Exact Sciences Corporation) to understand attitudes and experiences that influence test completion and likelihood of future test completion. Using exploratory factor analyses, we developed three scales: Perceived Effectiveness, Perceived Ease of Use, and Perceived Comfort., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)

Introduction: India accounts for one-fifth of the global burden of cervical cancer cases and mortality. A safe and effective vaccine to prevent human papillomavirus (HPV) infections, the primary cause of cervical malignancies, is available in India but multiple barriers lead to its low uptake in the country. Physicians are a key stakeholder and communicator in the Indian health system and have the potential to increase HPV vaccine uptake., Objective: We undertook formative research to understand awareness, perceptions and choices of physicians when recommending the HPV vaccine to parents of adolescent girls., Methods: We conducted in-depth interviews with 32 physicians in two districts of West Bengal. Data collection was carried out between July and August 2019. The data was transcribed, coded, and analyzed using NVivo software using the thematic analysis technique., Results: Our findings suggest that while physicians are generally aware about the burden of cervical cancer and its prevention by HPV vaccination, they face several barriers to recommending the HPV vaccine routinely and strongly. These include the lack of national-level guidance on the age eligibility and dosage, lack of practice-level opportunities such as well or non-sick visits and other routine adolescent vaccines, practice-level barriers like out-of-pocket cost and vaccine availability, and perceived parental hesitancy arising from reluctance to discuss cervical cancer, its prevention, and HPV vaccination., Conclusions: Physicians in our study exhibited hesitancy when recommending the HPV vaccine. They also faced logistical barriers. It is important that the barriers pertaining to when and how physicians recommend the vaccine be tackled through further education, policy change, and development and implementation of interventions that are evidenced-based., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2022 The Authors.)

Objective: Patients undergoing cancer treatment during the COVID-19 pandemic have experienced stress and uncertainty with respect to disruptions in cancer care and COVID-19 related risks. We examined whether clinicians' responsiveness to patients' uncertainty and difficult emotions were associated with better health and well-being., Methods: Patients were recruited from cancer support communities and a market research firm. Respondents assessed clinicians communication that addressed uncertainty and difficult emotions. Health status measures included mental and physical health, coping during the pandemic, and psychological distress., Results: 317 respondents participated in the study. Patients' perceptions of their clinicians responsiveness to patient uncertainty and negative emotions were associated with better mental health, physical health, coping, and less psychological distress (all p-values <0.001). Respondents with greater self-efficacy and social support also reported better health., Conclusion: Even when controlling for patients' personal and health-related characteristics, clinicians' communication addressing patients' uncertainty and difficult emotions predicted better health, better coping, and less psychological distress. Access to social support and self-efficacy also were associated with better health status., Practice Implications: Clinicians' communication focused on helping with uncertainty and difficult emotions is important to cancer patients, especially during the pandemic. Clinicians should also direct patients to resources for social support and patient empowerment., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Purpose: The COVID-19 pandemic created significant disruptions in cancer care, much of which was transitioned to telehealth. Because telehealth alters the way clinicians and patients interact with one another, this investigation examined patients' perceptions of their communication with clinicians during the pandemic., Method: Patients were recruited from the Cancer Support Community, Fight Colorectal Cancer, and a market research firm to participate in an online survey. In addition to demographic and health-related information, respondents completed measures of patient-centered communication and evaluated how their communication in telehealth sessions compared with in-person visits., Results: From October to December 2020, 227 respondents (65.6% female, 64.6% Non-Hispanic White, 33.5% had 6 or more telehealth sessions, 55% were 50 or older) reported having some of their cancer care provided via telehealth. Respondents who were of racial/ethnic minorities, male, had more telehealth sessions, or had poorer mental health reported less patient-centered communication with clinicians. Most patients thought communication in telehealth sessions was "about the same" as in-person visits with respect to good communication (59%). However, patients thinking communication in telehealth sessions was "better" than in-person visits were more likely to be Hispanic (49%), Non-Hispanic Black (41%), under 50 years of age (32%), male (40%), and had more telehealth sessions (34%)., Conclusion: Respondents reporting less patient-centered communication during the pandemic-e.g., persons of racial/ethnic minorities and males-were also more likely to evaluate communication in telehealth sessions as better than in-person visits. Further research is needed to understand reasons underlying this finding. Cancer care clinicians should take into account patient preferences regarding telehealth care, which may be particularly important for racial and ethnic minority patients., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: Recent innovations have the potential to disrupt the current paradigm for kidney failure treatment. The US Food and Drug Administration is committed to incorporating valid scientific evidence about how patients weigh the benefits and risks of new devices into their decision making, but to date, premarket submission of patient preference information (PPI) has been limited for kidney devices. With input from stakeholders, we developed a survey intended to yield valid PPI, capturing how patients trade off the potential benefits and risks of wearable dialysis devices and in-center hemodialysis., Methods: We conducted concept elicitation interviews with individuals receiving dialysis to inform instrument content. After instrument drafting, we conducted two rounds of pretest interviews to evaluate survey face validity, comprehensibility, and perceived relevance. We pilot tested the survey with in-center hemodialysis patients to assess comprehensibility and usability further. Throughout, we used participant input to guide survey refinements., Results: Thirty-six individuals receiving in-center or home dialysis participated in concept elicitation ( N =20) and pretest ( N =16) interviews. Participants identified reduced fatigue, lower treatment burden, and enhanced freedom as important benefits of a wearable device, and many expressed concerns about risks related to device disconnection-specifically bleeding and infection. We drafted a survey that included descriptions of the risks of serious bleeding and serious infection and an assessment of respondent willingness to wait for a safer device. Input from pretest interviewees led to various instrument modifications, including treatment descriptions, item wording, and risk-level explanations. Pilot testing of the updated survey among 24 in-center hemodialysis patients demonstrated acceptable survey comprehensibility and usability, although 50% of patients required some assistance., Conclusions: The final survey is a 54-item web-based instrument that will yield estimates of the maximal acceptable risk for the described wearable device and willingness to wait for wearable devices with lower risk., Competing Interests: K.L. Cavanaugh reports consultancy for the Kidney Health Initiative, REATA Pharmaceuticals, and Responsum Health; ownership interest in HCA Healthcare; and an advisory or leadership role for the National Kidney Foundation (KDQOI education committee), Clinical Journal of American Society of Nephrology (editorial board), American Journal of Kidney Diseases (editorial board), Kidney360 (associate editor), and Medical Decision Making (editorial board). J.E. Flythe reports consultancy for AstraZeneca and Fresenius Medical Care Medical Advisory Board; research funding from National Institutes of Health/National Heart, Lung, and Blood Institute, National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases, Patient-Centered Outcomes Research Institute, Renal Research Institute (subsidiary of Fresenius Medical Care, North America), and Robert Wood Johnson Foundation; honoraria from the American Society of Nephrology, National Kidney Foundation, and numerous universities; and an advisory or leadership role for the American Journal of Kidney Diseases (editorial board 2017–2021), Clinical Journal of American Society of Nephrology (editorial board 2017–), Hemodialysis (theme editor 2018–), KDIGO Executive Committee (2020–), Kidney Health Initiative (board of directors 2019–), Kidney Health Initiative (Patient Preferences Project chairperson 2019–), Kidney Medicine (editorial board 2019–), Kidney360 (associate editor 2019–), and Nephrology Dialysis and Transplantation (editorial board). D. Forfang reports employment by the American Society of Nephrology Kidney Health Initiative; consultancy for Ardelyx, Inc., Scientific Advisory Board, the American Society of Nephrology and Responsum, CareDX, HSAG, and University of North Carolina Kidney Center; honoraria from the American Society of Nephrology, European Association for Dialysis, HSAG ESRD Network #17, National Kidney Foundation; an advisory or leadership role for Arbor Research, HSAG ESRD Network #17 (board member), Kidney Health Initiative (Patient Advisory Committee), National Forum of ESRD Networks (board member), National Forum of ESRD Networks Kidney Patient Advisory Council (chair); National Kidney Foundation, SONG Group, and Unity Health Toronto OPPUS, UCSF Kidney Project (patient advisor); and other interests or relationships as a volunteer for the Forum of ESRD Networks as Kidney Patient Advisory Council chair and board member, a volunteer for ESRD Network #17 as Patient Advisory Committee Chair and Network board member, a volunteer for the National Kidney Foundation as a member of their Public Policy Committee, and a volunteer for the National Kidney Foundation as a Regional Leader of their Kidney Advocacy Committee, Kidney Health Initiative PFPC member. N. Gedney reports honoraria from the American Society of Nephrology, IDEAs, and the University of Washington. R.C. Harris reports consultancy for Bayer, Fibrocor, and Nicoya; ownership interest in Apple; research funding from Bayer; patents or royalties from eNOS db/db mouse; an advisory or leadership role for the Kidney Health Initiative (paid); and other interests or relationships with the Kidney Health Initiative (co-chair, board of directors). F.P. Hurst reports employment by the Food and Drug Administration/Center for Drug Evaluation and Research, and other interests or relationships with a US government employee. C. Mansfield reports the employment by RTI Health Solutions, which receives funding from for-profit pharmaceutical companies to conduct research. C.Y. Neuland reports being a member of the board of directors for the Kidney Health Initiative, representing the Food and Drug Administration/Center for Devices and Radiological Health during this time period. A. Saha reports employment by the Food and Drug Administration. C.S. Soloe reports employment by RTI International. G. Squillaci reports consultancy for The Griff Group. M.E. Tarver reports employment by the Food and Drug Administration/Center for Devices and Radiological Health. K. Treiman reports employment by RTI International. M.L. Unruh reports consultancy for Cara Therapeutics to chair of Data Monitoring Committee; a consulting agreement between Cara and the University of New Mexico; research funding from DCI; and honoraria related to lectures from the American Society of Nephrology, National Kidney Foundation, and Renal Research Institute. M. West reports employment by the American Society of Nephrology. D.M. White reports employment by Debevoise & Plimpton; consultancy for the Kidney Transplant Collaborative, the National Committee for Quality Assurance, and Responsum Health; ownership interest in Amgen, Inc.; honoraria from AstraZeneca, Hennepin Healthcare, the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institutes of Health, New York Academy of Medicine, and PFCC partners; and other interests or relationships with the American Association of Kidney Patients, American Society of Transplantation, Kidney Health Initiative, National Kidney Foundation, National Patient Advocate Foundation, Patient Advocate Foundation, and Quality Insights. C. Wilkie reports employment by Kuhns Law Firm, PLLC; consultancy for the University of North Carolina, University of Pennsylvania, and University of Pittsburg; ownership interest in Kuhns Law Firm, PLLC; an advisory or leadership role for the Kidney Health Initiative, University of Pennsylvania with the HOPE Consortium, and University of Pittsburgh; and other interests or relationships with the Kidney Health Initiative, National Kidney Foundation, University of Pennsylvania with the HOPE Consortium, University of North Carolina at Chapel Hill, and University of Pittsburgh. D. Wood reports employment by RTI International. The remaining authors have nothing to disclose., (Copyright © 2022 by the American Society of Nephrology.)

Objective: Addiction treatment via telehealth expanded to unprecedented levels during the COVID-19 pandemic. This study aimed to clarify whether the research evidence on the efficacy of telehealth-delivered substance use disorder treatment and the experience of providers using telehealth during the pandemic support continued use of telehealth after the pandemic and, if so, under what circumstances., Methods: Data sources included a literature review on the efficacy of telehealth for substance use disorder treatment, responses to a 2020 online survey from 100 California addiction treatment providers, and interviews with 30 California treatment providers and other stakeholders., Results: Eight published studies were identified that compared addiction treatment via telehealth with in-person treatment. Seven found telehealth treatment as effective but not more effective than in-person treatment in terms of retention, therapeutic alliance, and substance use. One Canadian study found that telehealth facilitated methadone prescribing and improved retention. In the survey results reported here, California addiction treatment providers said that more than 50% of their patients were being treated via telehealth for intensive outpatient treatment, individual counseling, group counseling, and intake assessment. They were most confident that individual counseling via telehealth was as effective as in-person individual counseling and less sure about the relative effectiveness of telehealth-delivered medication management, group counseling, and intake assessments., Conclusions: Telehealth may help engage patients in addiction treatment by improving access and convenience. Additional research is needed to confirm that benefit and to determine how best to tailor telehealth to each patient's circumstances and with what mix of in-person and telehealth services.

The COVID-19 pandemic heightened the psychosocial impact of a cancer diagnosis as patients face concerns about the risk of infection and serious disease and uncertainties about the impact on their treatment. We conducted an online survey (n = 317) and focus groups (n = 19) with patients to examine their experiences with cancer care during the pandemic. Most survey respondents (68%) reported one or more disruptions or delays in care, including appointments switched to telehealth (49%). Patients perceived both benefits (e.g., convenience) and drawbacks (e.g., more impersonal) to telehealth. For many patients, COVID-19-related restrictions on bringing family members to support them during appointments was a major concern and left them feeling alone and vulnerable during treatment. Patients' self-reported coping during the pandemic was positively associated with age, education, and income ( P  < .05 for each) and better communication with their doctors during telehealth sessions ( P  < .001). Study findings highlight the importance of patient-centered care and communication to help patients cope with the challenges of the pandemic. Further research is needed to develop guidelines for use of telehealth as part of patient-centered cancer care., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2022.)

Background: Assessments to determine patients' treatment needs and preferences when they begin substance use disorder (SUD) treatment are essential. The objectives of this paper are to identify the perspectives of providers who conduct assessments on (1) assessments' utility in determining the level of care where patients will receive treatment, (2) strategies to engage patients in treatment during assessments, and (3) assessment strengths and shortcomings. Methods: Semi-structured interviews were conducted with 30 California treatment providers who routinely perform SUD assessments for Medicaid beneficiaries. Interviews asked about the utility of assessment tools in determining appropriate levels of care, patient engagement during assessments, and strengths and shortcomings of intake assessment processes. Interviews were audio-recorded, transcribed, and analyzed by multiple researchers using template analysis. Results: Providers reported that assessments linked to level-of-care decision rules sometimes generate recommendations inconsistent with their clinical judgment, and that the timing of assessments can influence the quality of the information collected. Providers described engagement strategies that help patients feel more comfortable during assessments and that encourage more thoughtful and accurate responses. Providers valued assessments that helped ensure comprehensive collection of patient information, that allowed flexibility to probe for additional information and context, and that facilitated treatment planning. Providers did not like assessments that were long and repetitive or those that did not collect detailed information about patients' mental health and recovery environments. Conclusions: Assessments can be improved if providers conduct them in a manner that makes patients feel comfortable while building trust and rapport. Ensuring that assessments are not long or repetitive and giving comprehensive assessments once patients have developed trusting relationships with treatment programs can improve assessment processes. Further research is needed to optimize SUD assessments.

Purpose: There are numerous barriers to cancer clinical trial participation in the United States. This paper describes the approach and outcomes of The Leukemia & Lymphoma Society's Clinical Trial Support Center (CTSC), whose nurse navigators assist patients with a blood cancer and their oncologists by identifying all appropriate trials based on clinical data and patient preference, facilitating informed and shared decision making, and minimizing enrollment barriers., Methods: Data on patients served from October 2017 to October 2019 were analyzed using bivariate and multivariate analyses to determine demographic and clinical characteristics associated with enrollment. Reasons for nonenrollment were examined., Results: The CTSC opened 906 patient cases during this time frame. Among all US patients with a closed case (n = 750), the clinical trial enrollment rate was 16.1%. Among those with a known enrollment outcome after a trial search (n = 537), the enrollment rate was 22.5%. Multivariate analysis controlling for variables significant in bivariate analyses (insurance, treatment status, Eastern Cooperative Oncology Group performance status, and urban or rural residence) revealed that patients with Medicaid were less likely to enroll than those with private or commercial insurance (adjusted odds ratio, 0.054; CI, 0.003 to 0.899), and patients in treatment or maintenance were less likely to enroll than those relapsed or refractory to most recent therapy (adjusted odds ratio, 0.312; CI, 0.139 to 0.702). Primary reasons for nonenrollment were preference for standard of care (66.3%) and patient passed away (16.1%)., Conclusion: The CTSC is an effective, replicable model for addressing multilevel barriers to clinical trial participation. The findings highlight the need to increase opportunities for trial participation sooner after diagnosis and among patients with Medicaid., Competing Interests: Maria Sae-HauStock and Other Ownership Interests: Moderna Inc. (I), Acceleron Pharma (I), argenx (I), Beam Therapeutics (I), BridgeBio Pharma (I), Schrodinger (I), Applied DNA Sciences (I)Research Funding: Bristol Myers Squibb/Celgene (Inst), AstraZeneca (Inst), Amgen (Inst), AbbVie (Inst) Elisa S. WeissResearch Funding: AbbVie (Inst), AstraZeneca (Inst), Amgen (Inst), Bristol Myers Squibb/Celgene (Inst)No other potential conflicts of interest were reported.

Objectives: To understand the information needs and experiences with health care and social support among women with confirmed or possible Zika virus infection during pregnancy., Methods: We conducted in-depth interviews with 18 women whose pregnancies were part of surveillance efforts in two states, Pennsylvania and Virginia. Using a semi-structured guide available in English and Spanish, we asked women about their experiences. We conducted a thematic analysis using NVivo 11., Results: Only one participant reported that her infant had been diagnosed with health problems related to congenital Zika virus infection. Most participants said they received the information they needed about Zika virus and their infant's medical care. Most participants primarily spoke Spanish and described satisfactory experiences communicating with providers, either using a mix of Spanish and English or using an interpreter. Coordination of care and clear communication among different providers was a key factor in participants' satisfaction with health care received. Participants noted high levels of stress around the uncertainty associated with Zika virus exposure during pregnancy., Conclusions for Practice: Although participants reported satisfaction with care, they also reported high levels of anxiety and challenges coping with the uncertainties along their journeys. Study findings support the need for guidance for providers about how to talk with women about Zika virus infection during pregnancy and specifically how to discuss the uncertainties about diagnosis and outcomes., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)