Mental health, pain and likelihood of opioid misuse among adults with sickle cell disease.

Depressive symptoms are prevalent in individuals living with sickle cell disease (SCD) and may exacerbate pain. This study examines whether higher depressive symptoms are associated with pain outcomes, pain catastrophizing, interference and potential opioid misuse in a large cohort of adults with SCD. The study utilized baseline data from the 'CaRISMA' trial, which involved 357 SCD adults with chronic pain. Baseline assessments included pain intensity, daily mood, the Patient Health Questionnaire (PHQ), the Generalized Anxiety Disorders scale, PROMIS Pain Interference, Pain Catastrophizing Scale, the Adult Sickle Cell Quality of Life Measurement Information System and the Current Opioid Misuse Measure. Participants were categorized into 'high' or 'low' depression groups based on PHQ scores. Higher depressive symptoms were significantly associated with increased daily pain intensity, negative daily mood, higher pain interference and catastrophizing, poorer quality of life and a higher likelihood of opioid misuse (all p < 0.01). SCD patients with more severe depressive symptoms experienced poorer pain outcomes, lower quality of life and increased risk of opioid misuse. Longitudinal data from this trial will determine whether addressing depressive symptoms may potentially reduce pain frequency and severity in SCD.

Early Patient-Centered Outcomes Research Experience With the Use of Telehealth to Address Disparities: Scoping Review.

BACKGROUND: Health systems and providers across America are increasingly employing telehealth technologies to better serve medically underserved low-income, minority, and rural populations at the highest risk for health disparities. The Patient-Centered Outcomes Research Institute (PCORI) has invested US $386 million in comparative effectiveness research in telehealth, yet little is known about the key early lessons garnered from this research regarding the best practices in using telehealth to address disparities. OBJECTIVE: This paper describes preliminary lessons from the body of research using study findings and case studies drawn from PCORI seminal patient-centered outcomes research (PCOR) initiatives. The primary purpose was to identify common barriers and facilitators to implementing telehealth technologies in populations at risk for disparities. METHODS: A systematic scoping review of telehealth studies addressing disparities was performed. It was guided by the Arksey and O'Malley Scoping Review Framework and focused on PCORI's active portfolio of telehealth studies and key PCOR identified by study investigators. We drew on this broad literature using illustrative examples from early PCOR experience and published literature to assess barriers and facilitators to implementing telehealth in populations at risk for disparities, using the active implementation framework to extract data. Major themes regarding how telehealth interventions can overcome barriers to telehealth adoption and implementation were identified through this review using an iterative Delphi process to achieve consensus among the PCORI investigators participating in the study. RESULTS: PCORI has funded 89 comparative effectiveness studies in telehealth, of which 41 assessed the use of telehealth to improve outcomes for populations at risk for health disparities. These 41 studies employed various overlapping modalities including mobile devices (29/41, 71%), web-based interventions (30/41, 73%), real-time videoconferencing (15/41, 37%), remote patient monitoring (8/41, 20%), and store-and-forward (ie, asynchronous electronic transmission) interventions (4/41, 10%). The studies targeted one or more of PCORI's priority populations, including racial and ethnic minorities (31/41, 41%), people living in rural areas, and those with low income/low socioeconomic status, low health literacy, or disabilities. Major themes identified across these studies included the importance of patient-centered design, cultural tailoring of telehealth solutions, delivering telehealth through trusted intermediaries, partnering with payers to expand telehealth reimbursement, and ensuring confidential sharing of private information. CONCLUSIONS: Early PCOR evidence suggests that the most effective health system- and provider-level telehealth implementation solutions to address disparities employ patient-centered and culturally tailored telehealth solutions whose development is actively guided by the patients themselves to meet the needs of specific communities and populations. Further, this evidence shows that the best practices in telehealth implementation include delivery of telehealth through trusted intermediaries, close partnership with payers to facilitate reimbursement and sustainability, and safeguards to ensure patient-guided confidential sharing of personal health information.

Opening Pandora's Box: From Readmissions to Transitional Care Patient-Centered Outcome Measures.

BACKGROUND: Measuring the effectiveness of transitional care interventions has historically relied on health care utilization as the primary outcome. Although the Care Transitions Measure was the first outcome measure specifically developed for transitional care, its applicability beyond the hospital-to-home transition is limited. There is a need for patient-centered outcome measures (PCOMs) to be developed for transitional care settings (ie, TC-PCOMs) to ensure that outcomes are both meaningful to patients and relevant to the particular care transition. The overall objective of this paper is to describe the opportunities and challenges of integrating TC-PCOMs into research and practice. METHODS AND RESULTS: This narrative review was conducted by members of the Patient-Centered Outcomes Research Institute (PCORI) Transitional Care Evidence to Action Network. We define TC-PCOMs as outcomes that matter to patients because they account for their individual experiences, concerns, preferences, needs, and values during the transition period. The cardinal features of TC-PCOMs should be that they are developed following direct input from patients and stakeholders and reflect their lived experience during the transition in question. Although few TC-PCOMs are currently available, existing patient-reported outcome measures could be adapted to become TC-PCOMs if they incorporated input from patients and stakeholders and are validated for the relevant care transition. CONCLUSION: Establishing validated TC-PCOMs is crucial for measuring the responsiveness of transitional care interventions and optimizing care that is meaningful to patients.

Implementation of Complex Interventions: Lessons Learned From the Patient-Centered Outcomes Research Institute Transitional Care Portfolio.

BACKGROUND: Despite the well-documented risks to patient safety associated with transitions from one care setting to another, health care organizations struggle to identify which interventions to implement. Multiple strategies are often needed, and studying the effectiveness of these complex interventions is challenging. OBJECTIVE: The objective of this study was to present lessons learned in implementing and evaluating complex transitional care interventions in routine clinical care. RESEARCH DESIGN: Nine transitional care study teams share important common lessons in designing complex interventions with stakeholder engagement, implementation, and evaluation under pragmatic conditions (ie, using only existing resources), and disseminating findings in outlets that reach policy makers and the people who could ultimately benefit from the research. RESULTS: Lessons learned serve as a guide for future studies in 3 areas: (1) Delineating the function (intended purpose) versus form (prespecified modes of delivery of the intervention); (2) Evaluating both the processes supporting implementation and the impact of adaptations; and (3) Engaging stakeholders in the design and delivery of the intervention and dissemination of study results. CONCLUSION: These lessons can help guide future pragmatic studies of care transitions.

Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care.

Importance: Sickle cell disease (SCD) is the most common inherited red blood cell disorder in the United States, and previous studies have shown that individuals with SCD are affected by multiple health disparities, including stigmatization, inequities in funding, and worse health outcomes, which may preclude their ability to access quality health care. This needs assessment was performed as part of the Sickle Cell Disease Implementation Consortium (SCDIC) to assess barriers to care that may be faced by individuals with SCD. Objective: To assess the SCD-related medical care experience of adolescents and adults with SCD. Design, Setting, and Participants: This one-time survey study evaluated pain interference, quality of health care, and self-efficacy of 440 adults and adolescents (aged 15 to 50 years) with SCD of all genotypes and assessed how these variables were associated with their perceptions of outpatient and emergency department (ED) care. The surveys were administered once during office visits by trained study coordinators at 7 of 8 SCDIC sites in 2018. Results: The SCDIC sites did not report the number of individuals approached to participate in this study; thus, a response rate could not be calculated. In addition, respondents were not required to answer every question in the survey; thus, the response rate per question differed for each variable. Of 440 individuals with SCD, participants were primarily female (245 [55.7%]) and African American (428 [97.3%]) individuals, with a mean (SD) age of 27.8 (8.6) years. The majority of participants (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S ß0-thalassemia. Most respondents (361 of 437 [82.6%]) reported access to nonacute (usual) SCD care, and the majority of respondents (382 of 413 [92.1%]) noted satisfaction with their usual care physician. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Respondents were less pleased with their ED care than their usual care clinician, with approximately half (146 of 287 [50.9%]) being satisfied with or perceiving having adequate quality care in the ED. Participants also noted that when they experienced severe pain or clinician lack of empathy, this was associated with a negative quality of care. Age group was associated with ED satisfaction, with younger patients (<19 vs 19-30 and 31-50 years) reporting better ED experiences. Conclusions and Relevance: These results suggested that a negative perception of care may be a barrier for patients seeking care. These findings underscore the necessity of implementation studies to improve access to quality care for this population, especially in the acute care setting.

Blood Transfusion: Knowledge, Perspectives, and Experience of Individuals With Sickle Cell Disease.

Patient voice and perspective were needed to inform effective, comprehensive strategies for reducing preventable transfusion-associated complications. This report presents the results of interviews with sickle cell disease (SCD) patients and implications for strategies to reduce transfusion complications in this population. Twenty-two participants were recruited from 2 comprehensive SCD treatment centers in Georgia and interviewed regarding knowledge about transfusions and potential complications, attitudes about data storage and sharing, and the transfusion experience. Participants had general knowledge of physiology, blood products, and blood transfusions, including knowing the risk of complications, but varied in comprehension of complex health information and level of misinformation. Patients also varied in preferences for how they would like their transfusion information stored. They saw both advantages and disadvantages to wallet cards, smartphone applications, and registries. There is a need for a patient-centered approach that involves transfusion education and shared decision-making. Education should range from essential and simple to more in-depth to accommodate varying education and comprehension levels. Multiple tracking methods should be offered to store sensitive patient information.

Facilitators and Barriers to Minority Blood Donations: A Systematic Review.

BACKGROUND: Minority blood donations have historically been low in the United States; however, increasing the proportion of minority blood donations is essential to reducing blood transfusion complications-particularly in African Americans with sickle cell disease and thalassemia. OBJECTIVES: The research question was as follows: What are the facilitators and barriers to blood donation in minority populations? METHODS: Beginning August 2017, we conducted a literature search using the following electronic databases: CINAHL Plus with Full Text, Academic Search Complete, MEDLINE, PsycINFO, Sociological Collection, Cochrane Library, ProQuest Dissertation and Theses, and PubMed, which continued through December 2017. Based on primarily descriptive data in the articles (n = 15), the systematic review proceeded as a meta-synthesis. An inductive approach was used to analyze commonalities, differences, patterns, and themes in the study findings; interpret the findings; and synthesize the findings to generate new knowledge about the phenomena of study. RESULTS: The themes included (a) knowing a blood recipient; (b) identifying with culture, race/ethnicity, and religious affiliation; and (c) medical mistrust and misunderstanding. All were prominent in the descriptions of minorities on blood donation and exist as facilitators and barriers. DISCUSSION: The reviewed studies demonstrated that facilitators and barriers to minority blood donations are complex and exist concurrently. Community education and communication about blood donation have a positive effect on fellow community members, including friends and family, in racial and ethnic minorities that are underrepresented among blood donors. Findings further suggest the need to rebuild trust among minority communities.

Defining "Community" from the Perspectives of Individuals with Sickle Cell Disease in Rural Georgia.

Individuals with sickle cell disease (SCD) often struggle to transition from pediatric to adult-centered medical environments. One probable cause is that many transition programs do not focus on what happens when patients leave the medical environment and return to their communities. Little is known about how individuals with SCD define community. Therefore, we worked with health care providers at four rural Georgia SCD outreach clinics to conduct qualitative interviews with 21 individuals who had transitioned to adult SCD care. The biopsychosocial ecological model was the framework for the study. Findings indicated that individuals with SCD describe five aspects of community that span across the family, community, and society-levels of the biopsychosocial ecological model: 1) immediate family, friends, and social circle; 2) relationships with medical providers; 3) geographic community/neighbors; 4) church/spiritual support; and 5) society. Interventions designed to improve SCD in rural communities may be most effective if they include not only support from family but also enhanced neighborhood supports and links between adults with SCD and relevant community organizations.

Trends in the Use of Volunteers in US Hospices: 2000 to 2010.

PURPOSE: Using a longitudinal sample of freestanding Medicare-certified hospices in the 50 US states and the District of Columbia, this study sought to explore the factors associated with volunteer demand and describe how volunteer use has changed from 2000 to 2010. RESULTS: A temporal decline in the extent of use of volunteers in freestanding hospices was observed over the study period. Findings indicated that both organizational and environmental factors influence the use of volunteers in US freestanding hospices. CONCLUSION: Given the importance of volunteers, both in the preservation of hospices' philanthropic traditions and in reducing health care expenditure at the end of life, research is needed to further evaluate the factors associated with this decline. Emphasis should be placed on improving the retention of the existing hospice volunteer workforce.

Evaluation of Diverse Community Asthma Interventions: Balancing Health Outcomes with Developing Community Capacity for Evidence-Based Program Measurement.

The challenge of evaluating community asthma management programs is complicated by balancing the emphasis on health outcomes with the need to build community process capacity for conducting and monitoring evidence-based programs. The evaluation of a Georgia Childhood Asthma Management Program, a Healthcare Georgia Foundation-supported initiative for multiple diverse programs and settings, provides an example of an approach and the results that address this challenge. A "developmental evaluation" approach was applied, using mixed methods of quantitative and qualitative data collection and analysis, to assess the progress of community asthma prevention programs in building community within the context of: where the community is starting, community-level systems changes, and the community's progress toward becoming more outcome measurement oriented and evidence based. Initial evaluation efforts revealed extensive mobilization of community assets to manage childhood asthma. However, there were minimal planned efforts to assess health outcomes and systems changes, and the lack of a logic model-based program design linking evidence-based practices to outcomes. Following developmental technical assistance within evaluation efforts, all programs developed logic models, linking practices to outcomes with data collection processes to assess progress toward achieving the selected outcomes. This developmental approach across diverse projects and communities, along with a quality improvement benchmarking approach to outcomes, created a focus on health status outcome improvement. Specifically, this approach complemented an emphasis on an improved community process capacity to identify, implement, and monitor evidence-based asthma practices that could be used within each community setting.

Athletes' perceptions of National Collegiate Athletic Association-mandated sickle cell trait screening: insight for academic institutions and college health professionals.

OBJECTIVE: The study objective was to explore athletes' perspectives of National Collegiate Athletic Association (NCAA)-mandated sickle cell trait (SCT)-screening policy by examining race- and gender-related differences in athletes' perceptions regarding risk of having SCT and concern about loss of playing time. PARTICIPANTS: Participants were 259 athletes at a southeastern United States campus during April-August of 2010. METHODS: Athletes completed a 21-question survey. RESULTS: The majority of athletes (81.7%) perceived that they would have a high level of concern if found to carry the SCT. African Americans were 9.07 times more likely than Caucasians to perceive risk of having the SCT. The majority of athletes disagreed (38.4%) or did not know (50.8%) if they would lose playing time related to carrying the SCT. CONCLUSION: Campus health professionals must be aware of athletes' perspectives on NCAA's SCT screening so that athletes are not unnecessarily subjected to stress or harm.