Communicating Information Regarding IBD Remission to Patients: Evidence From a Survey of Adult Patients in the United States.

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.

Understanding Myeloma-Related Information Needs and Communication Preferences Within Black American Communities: An Exploratory Study.

Myeloma is the third most common blood cancer and one of the most complex and expensive cancers to treat. Black Americans face health disparities related to myeloma incidence, age at diagnosis, access to novel treatments, and mortality. To help reduce health disparities among Black Americans through education and outreach, the Leukemia & Lymphoma Society has implemented its Myeloma Link initiative.

Reducing risk for chronic disease: evaluation of a collective community approach to sustainable evidence-based health programming.

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.

Attitudes and Experiential Factors Associated with Completion of mt-sDNA Test Kit for Colorectal Cancer Screening.

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.

Awareness, perceptions, and choices of physicians pertaining to human papillomavirus (HPV) vaccination in India: A formative research study.

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.

Development of a Patient Preference Survey for Wearable Kidney Replacement Therapy Devices.

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.

Patients' Experiences with Cancer Care: Impact of the COVID-19 Pandemic.

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%).

Managing uncertainty and responding to difficult emotions: Cancer patients' perspectives on clinician response during the COVID-19 pandemic.

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.

Oncology patients' communication experiences during COVID-19: comparing telehealth consultations to in-person visits.

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.

Perceptions of Health Care, Information, and Social Support Among Women Affected by Zika Virus Infection During Pregnancy in Two U.S. States.

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.

Addiction Treatment and Telehealth: Review of Efficacy and Provider Insights During the COVID-19 Pandemic.

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.

Impact of the Coronavirus Pandemic on Substance Use Disorder Treatment: Findings from a Survey of Specialty Providers in California.

Background: As the coronavirus pandemic public health emergency begins to ebb in the United States, policymakers and providers need to evaluate how the addiction treatment system functioned during the public health emergency and draw lessons for future emergencies. One important question is whether the pandemic curtailed the use of addiction treatment and the extent to which telehealth was able to mitigate access barriers.

Methods: To begin to answer this question, we conducted a survey of specialty addiction treatment providers in California from June 2020 through July 2020.

Assessing Assessments: Substance use disorder treatment providers' perceptions of intake assessments.

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. Semi-structured interviews were conducted with 30 California treatment providers who routinely perform SUD assessments for Medicaid beneficiaries.

Is implementation of ASAM-based addiction treatment assessments associated with improved 30-day retention and substance use?

Background: The American Society of Addiction Medicine (ASAM) criteria were developed to provide a systematic, evidence-based, and transparent approach to addiction treatment assessment and level-of-care recommendations. In 2017, California began a Medicaid demonstration that required that providers in participating counties to adopt ASAM-based intake assessments and level-of-care criteria. We hypothesized that ASAM implementation would increase the proportion of patients retained in addiction treatment and successfully completing their treatment plan.

Overcoming Barriers to Clinical Trial Participation: Outcomes of a National Clinical Trial Matching and Navigation Service for Patients With a Blood Cancer.

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.

Be Well Communities™: mobilizing communities to promote wellness and stop cancer before it starts.

Purpose: Increasingly, cancer centers are delivering population-based approaches to narrow the gap between known cancer prevention strategies and their effective implementation. Leveraging successful healthy community initiatives, MD Anderson developed Be Well Communities™, a model that implements evidence-based actions to directly impact people's lives.

Methods: In partnership with local organizations, MD Anderson's Be Well Communities team executed and evaluated 16 evidence-based interventions to address community priorities in healthy diets, physical activity, and sun safety.

"The assessment really helps you with the first step in recovery." What do clients think substance use disorder treatment intake assessments should look like?

In general, research has found that patient-centered substance use disorder treatment is positively correlated with improved patient outcomes. However, little research has examined what factors make intake assessments-the first step in addiction treatment-patient-centered. We conducted interviews with 30 Medicaid-enrolled individuals who received addiction treatment in California about their experiences with the intake assessment process.

Effectively Communicating About HIV and Other Health Disparities: Findings From a Literature Review and Future Directions.

Despite significant progress in the prevention and treatment of HIV, disparities in rates of infection remain among key groups in the United States, including blacks and African Americans; Hispanics/Latinos; and men who have sex with men (MSM). The U.S.

How Patient Centered Are Addiction Treatment Intake Processes?

Objectives: The substance use disorder (SUD) treatment field has conducted significant research on creating intake tools and processes that best match patients to the most appropriate treatment setting, but less research has been conducted on how those tools impact the patient experience. The study took advantage of a natural experiment in California to evaluate whether the implementation of American Society of Addiction Medicine (ASAM) assessment criteria and a computer-facilitated intake assessment based on the ASAM criteria affects patient experiences and patient-centeredness during intake relative to patients receiving intake assessments not based on ASAM criteria.

Methods: We analyzed surveys completed by 851 patients covered by Medi-Cal who were receiving specialty SUD treatment at 33 providers across 10 California counties about their experiences and perceptions of the intake assessment process.

Meeting the Information and Support Needs of Blood Cancer Patients and Caregivers: A Longitudinal Study of a Model of Patient-Centered Information Delivery.

Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later.

Supporting informed clinical trial decisions: Results from a randomized controlled trial evaluating a digital decision support tool for those with intellectual disability.

Background: Informed consent requires that individuals understand the nature of the study, risks and benefits of participation. Individuals with intellectual disabilities (ID) have cognitive and adaptive impairments that may affect their ability to provide informed consent. New treatments and clinical trials for fragile X syndrome, the most commonly known inherited cause of ID, necessitate the development of methods to improve the informed consent process.

Information needs across the family planning continuum: A survey of women with chronic autoimmune inflammatory conditions.

Objective: This study assessed the information needs of women with chronic autoimmune inflammatory conditions across the pregnancy continuum.

Methods: We conducted a web-based survey with women about information needs related to family planning. Eligible participants were female, aged 18-44, had a diagnosis of a chronic inflammatory condition, and were at one of three pregnancy stages (planning, currently pregnant, or postpartum).

Perceived Impact of Incentives for Chronic Disease Prevention.

Introduction: This study evaluates the effect of program and incentive characteristics on satisfaction with incentives and perceived impact of incentives on behavior change among Medicaid beneficiaries who participated in the Centers for Medicare and Medicaid Services Medicaid Incentives for Prevention of Chronic Diseases program.

Methods: In 2014-2015, an English- and Spanish-language survey was administered to Medicaid Incentives for Prevention of Chronic Diseases program participants about their satisfaction with incentives and perceived impact of incentives. Completed surveys were received from 2,276 eligible sample members (response rate=52.