"They don't care to study it": Trust, race, and health care experiences among patient-caregiver dyads with multiple myeloma.

BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival. STUDY PURPOSE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena. METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc). RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns. CONCLUSION: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

Translation, cross-cultural adaptation and validation of the sickle cell self-efficacy scale (SCSES)

ABSTRACT Objective: To translate, cross-culturally adapt and validate the Sickle Cell Self-Efficacy Scale for application in the Brazilian cultural context. Methods: This is a methodological study performed in 6 steps: 1- Forward translation; 2- Translation synthesis; 3- Back-translation; 4- Assessment by expert committee, with computation of the Content Validity Index (CVI); 5- Cultural adequacy (pre-test); 6- Reproducibility. A pre-test was performed with the participation of 10 adolescents/young adults with sickle cell disease through a telephone call and their responses were recorded on a form in a web platform. The instrument validation step was carried out with 55 adolescents/young adults with sickle cell disease, 43 of them having participated in the retest. The analysis of internal consistency and reproducibility was calculated using the Cronbach's alpha coefficient and the Intraclass Correlation Coefficient (ICC), in the R statistical programming environment. Results: The translated instrument had good acceptance among the experts, reaching an average CVI of 1.0. In assessing reliability, the scale showed acceptable internal consistency, with a Cronbach's alpha of 0.84. In the agreement analysis, the ICC was 0.923 (95% CI: 0.857 to 0.958), which indicates good temporal reproducibility. Conclusions: Following the process of translation, cross-cultural adaptation and validation, we obtained the Brazilian version of the Sickle Cell Self-Efficacy Scale, considered valid and reliable to be applied to adolescents and young adults with sickle cell disease in Brazil.

Social ecological approach to factors influencing perinatal mental health service provision among providers in Bulloch County, GA.

Perinatal mental illness pertains to pregnancy-related mental health complications, which could last as long as one year post-delivery. Despite the high prevalence of PMI, there remains a poor accessibility and utilization of mental health services, especially in the rural America. Hence, using the Social Ecological Model (SEM), we aim to identify factors influencing perinatal mental health service provision among providers in Bulloch County, GA. Using a random sampling method, we recruited 15 mental health providers in Bulloch County through professional networks who completed open-ended surveys between January 31 and March 5 of 2021. The open-ended survey was guided by the SEM constructs, which included Individual, Interpersonal, Organizational, Community, and Policy factors. The Qualitative thematic analysis was conducted using NVivo software. Major barriers among providers include lack of available resources and lack of rapport among patients and providers. Major facilitator themes included increase in mental health screening, rapport building, education, and awareness. This study suggests the introduction of group therapies in public communal areas is helpful. Findings from this study will be useful in developing tailored interventions to address barriers to perinatal mental health-care utilization experienced by both women and perinatal mental health-care providers.

Translation, cross-cultural adaptation and validation of the sickle cell self-efficacy scale (SCSES).

OBJECTIVE: To translate, cross-culturally adapt and validate the Sickle Cell Self-Efficacy Scale for application in the Brazilian cultural context. METHODS: This is a methodological study performed in 6 steps: 1- Forward translation; 2- Translation synthesis; 3- Back-translation; 4- Assessment by expert committee, with computation of the Content Validity Index (CVI); 5- Cultural adequacy (pre-test); 6- Reproducibility. A pre-test was performed with the participation of 10 adolescents/young adults with sickle cell disease through a telephone call and their responses were recorded on a form in a web platform. The instrument validation step was carried out with 55 adolescents/young adults with sickle cell disease, 43 of them having participated in the retest. The analysis of internal consistency and reproducibility was calculated using the Cronbach's alpha coefficient and the Intraclass Correlation Coefficient (ICC), in the R statistical programming environment. RESULTS: The translated instrument had good acceptance among the experts, reaching an average CVI of 1.0. In assessing reliability, the scale showed acceptable internal consistency, with a Cronbach's alpha of 0.84. In the agreement analysis, the ICC was 0.923 (95% CI: 0.857 to 0.958), which indicates good temporal reproducibility. CONCLUSIONS: Following the process of translation, cross-cultural adaptation and validation, we obtained the Brazilian version of the Sickle Cell Self-Efficacy Scale, considered valid and reliable to be applied to adolescents and young adults with sickle cell disease in Brazil.

College Students' Experiences of Race-Related Bias or Hatred in Their Lifetimes and COVID-19 Era.

OBJECTIVE: The primary aim of this study was to investigate whether students in minority race categories are more likely to experience race-related bias and hatred in their lifetime and since the onset of COVID-19, after controlling the effect of demographic and other variables. METHODS: This quantitative study used primary data from the survey of 1249 college students at one of the universities in Georgia during April and May 2020. We performed multinomial logistic regression, computing 2 models for the 2 ordinal dependent variables concerning students' experience of race-related bias and hatred-(a) during their lifetime and (b) since the onset of COVID-19 in March 2020-both measured as "never," "rarely," "sometimes," and "fairly often or very often." RESULTS: During their lifetime, 47.5% of students had experienced some level of bias or hatred, ranging from "rarely" to "very often." Since the onset of COVID-19 on March 2 in Georgia, in a short period of 1 to 2 months, 17.6% of students reported experiencing race-related bias or hatred. Univariate statistics revealed substantial differences in race-related bias and hatred by race, experienced during students' lifetime as well as since the onset of COVID-19. Results of multinomial logistic regression showed that the odds of having experienced bias or hatred during their lifetime were significantly higher (P < .05) for the Black students than for White students (adjusted odds ratio [AOR] = 75.8, for very often or often vs never; AOR = 42 for sometimes vs never). Compared with White students, the odds of hatred and bias were also significantly higher for students who were Asian, multiple races, or another non-White race. The odds of having experienced race-related bias and hatred since the onset of COVID-19 were also higher for Black Asian, multiple races, and other non-White students. CONCLUSIONS: This study adds critical scientific evidence about variation in the perception of bias and hatred that should draw policy attention to race-related issues experienced by college students in the United States.

Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.

BACKGROUND: Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the unavailability of descriptions of the selection process and copies of final data collection tools, coupled with incomplete representation of the SCD population hampers further research progress. This manuscript describes the SCDIC (Sickle Cell Disease Implementation Consortium) Registry development and makes the SCDIC Registry baseline and first follow-up data collection forms available for other SCD research efforts. RESULTS: Study data on 2400 enrolled patients across eight sites was stored and managed using Research Electronic Data Capture (REDCap). Standardized data collection instruments, recruitment and enrollment were refined through consensus of consortium sites. Data points included measures taken from a variety of validated sources (PHENX, PROMIS and others). Surveys were directly administered by research staff and longitudinal follow-up was coordinated through the DCC. Appended registry forms track medical records, event-related patient invalidation, pregnancy, lab reporting, cardiopulmonary and renal functions. CONCLUSIONS: The SCDIC Registry strives to provide an accurate, updated characterization of the adult and adolescent SCD population as well as standardized, validated data collecting tools to guide evidence-based research and practice.

Development of a sickle cell disease readiness for transition assessment.

BACKGROUND: Instrumentation with established reliability and validity is not yet routinely utilized to assess readiness for transition from pediatric to adult care for youth and young adults with chronic conditions, including sickle cell disease (SCD). OBJECTIVE: The aim of this study was to develop a SCD specific readiness for transition assessment tool. SUBJECTS: Fifty-seven youths with SCD, ages 15-21 years, completed the initial version of the Transition Intervention Program - Readiness for Transition (TIP-RFT) assessment; 113 youths/young adults with SCD, ages 14-26 years, at two distinct sites of care completed a refined version of the TIP-RFT. METHODS: The TIP-RFT was constructed based on a literature review, provider and patient consensus and assessed domains including knowledge and skills in medical self-care, social support, health benefits and independent living and educational/vocational skills. We used principal components factor analysis to evaluate TIP-RFT responses and assessed differences in TIP-RFT scores in relation to age, gender, sickle cell diagnosis and site of care. RESULTS: The original TIP-RFT, which had demonstrated face validity, was reduced from 56 to 22 items. The revised instrument consisting of four subscales demonstrated good internal consistency reliability and construct validity. CONCLUSION: Our results support that the TIP-RFT is a valid and reliable tool for the assessment of transition readiness for youths with SCD. The TIP-RFT assessment can guide interventions to improve transition readiness and can provide a foundation for future research on other variables that might be associated with transition readiness.

Self-efficacy and readiness for transition from pediatric to adult care in sickle cell disease.

BACKGROUND: Theories of self-care management, particularly the development of self-efficacy or confidence in one's ability to manage health-related goals, tasks, and challenges may provide a useful framework for developing programs to improve transition from pediatric to adult care for youth and young adults with sickle cell disease (SCD). OBJECTIVE: The aim of this study was to evaluate the hypothesis stating that ratings of self-efficacy is positively associated with self-ratings of transition readiness. SUBJECTS: A total of 113 individuals with SCD aged 14-26 years at two distinct sites of care were recruited for the study. MATERIALS AND METHODS: Participants completed the Transition Intervention Program Readiness for Transition (TIP-RFT) assessment, the Sickle Cell Self-Efficacy Scale and the Sickle Cell Stress -Adolescent scale. RESULTS: In multivariate regression models, self-efficacy was positively associated with scores on the total TIP-RFT and on the Education/Vocation Planning and Independent Living Skills scales. Older age was independently associated with higher scores on the Independent Living Skills scale and higher stress levels were independently associated with lower scores on Education/Vocation Planning scale. CONCLUSION: The TIP-RFT assessment, along with measures of self-efficacy and stress, appear to be useful measures of overall transition readiness for youth and young adults with SCD. Future studies should evaluate whether self-management skill development and health outcomes are indeed affected by programs to improve readiness for transition from pediatric to adult care.

"When everything changes:" Parent perspectives on the challenges of accessing care for a child with a disability.

BACKGROUND: Health disparities exist among individuals living in rural and urban contexts in terms of access to health care and overall mortality. These disparities are typically greater for youth with disabilities living in rural areas, who face additional barriers in receiving health and support services specific to their disability. Parents are typically the ones responsible for coordinating the care needed by children with a disability; however, with numerous barriers present families are not provided adequate support to care for a child with disabilities. OBJECTIVE: The purpose of this study was to examine barriers and facilitators to accessing health and support services among urban and rural families of children with disabilities. METHODS: In-depth interviews were conducted with parents who provide care for an adolescent with a disability. The sample was comprised of parents from one rural county (N = 9) and one urban county (N = 10) in Georgia. Parental interviews were conducted face to face by a trained researcher. Each interview was audio-recorded. The recordings were transcribed and content analysis used to create codes and identify emerging themes. RESULTS: The common themes found during the analysis include accessibility of health and support resources, transitions, and social isolation. CONCLUSIONS: When comparing urban and rural areas, barriers to access do differ in terms of availability, but analysis revealed more similarities existed among parents from both contexts. Efforts must be made to increase opportunities for youth with disabilities to become connected with the local community in order to improve quality of life for families.

Healthcare Coordination and Transition for Individuals with Genetic Conditions.

This study aimed to examine insurance coverage, use of the healthcare system, satisfaction with care, transition from pediatric to adult healthcare services, and social and emotional support for individuals with genetic conditions. In June 2013, the National Genetics Education and Consumer Network surveyed US individuals with genetic conditions about their healthcare experiences. Chi square statistics were used to compare use of the healthcare system, satisfaction, social and emotional support of children (0-17 years) and adults (18 + years) with genetic conditions. There were 1895 valid responses (53.0 % individuals with genetic conditions, 47.0 % parents of these individuals). The findings suggest several potential areas to impact the quality of care received by this population. The majority of respondents reported that they had: (1) more than one health professional they considered to be their personal doctor or nurse (70.5 % children; 57.8 % adults); (2) providers that listened carefully to their needs always or most of the time (82.2 % children; 83.5 % adults); and (3) providers that usually or always involved them as partners in their care (78.4 % children; 66.6 % adults). However, several significant differences around care and support received between children versus adults and areas of need were reported. Most persons surveyed received care from a system of providers that was self- or parent- coordinated and lacked sufficient social and emotional support. Data from this study will inform practice and identifies further research needed to improve care provided to individuals with genetic conditions who require a combination of specialty and primary care.

State-based surveillance for selected hemoglobinopathies.

PURPOSE: The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies. METHODS: The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information. RESULTS: In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina. CONCLUSION: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.

Self-reported transition readiness among young adults with sickle cell disease.

BACKGROUND: A growing body of literature addresses the need for transition programs for young adults with sickle cell disease (SCD); however, studies assessing transition readiness are limited and there are few validated instruments to use. OBJECTIVE: To conduct a pilot study to assess transition readiness of patients with SCD in our transition program and to evaluate a SCD-specific assessment tool that measures 5 knowledge skill sets (medical, educational/vocational, health benefits, social, and independent living), and 3 psychological assessments (feelings, stress, and self-efficacy). RESULTS: Of the 47 SCD patients between the ages of 18 and 22 seen in our facility, 33 completed the assessment tool. The majority of patients reported good medical knowledge of SCD and said they were motivated to pursue a career despite the burden of living with the disease. We identified knowledge gaps in the area of independent living and health benefits skills sets. A majority of patients reported being worried that their SCD would prevent them from doing things in their life; however, few respondents said they were worried or anxious about their transition to adult care. CONCLUSIONS: Adolescents beginning a transition intervention program reported a high level of knowledge of their disease and demonstrated a positive attitude toward transition with good self-efficacy.

Educational attainment as a social determinant of health.

A review of the current literature on the relationship between health outcomes and level of education provides points for consideration by providers and policymakers wishing to address social and economic determinants of health and health disparities.

Transition and sickle cell disease.

Sickle cell disease (SCD), the most common genetic disease screened for in the newborn period, occurs in ~1 in 2400 newborns in the general population and 1 in 400 individuals of African descent in the United States. Despite the relative high prevalence and low pediatric mortality rate of SCD when compared with other genetic diseases or chronic diseases in pediatrics, few evidence-based guidelines have been developed to facilitate the transition from pediatrics to an internal medicine or family practice environment. As with any pediatric transition program, common educational, social, and health systems themes exist to prepare for the next phase of health care; however, unique features characterizing the experience of adolescents with SCD must also be addressed. These challenges include, but are not limited to, a higher proportion of SCD adolescents receiving public health insurance when compared with any other pediatric genetic or chronic diseases; the high proportion of overt strokes or silent cerebral infarcts (~30%) affecting cognition; risk of low high school graduation; and a high rate of comorbid disease, including asthma. Young adults with SCD are living longer; consequently, the importance of transitioning from a pediatric primary care provider to adult primary care physician has become a critical step in the health care management plan. We identify how the primary care physicians in tandem with the pediatric specialist can enhance transition interventions for children and adolescents with SCD.

Screening U.S. college athletes for their sickle cell disease carrier status.

There are many issues surrounding the screening of collegiate athletes for their sickle cell disease carrier status (or sickle cell trait), a genetic condition. This paper summarizes the establishment of expert advice given to the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) on the issue. The SACHDNC has developed a report to advise the Secretary of the USDHHS about the 2010 rule of the National Collegiate Athletic Association (NCAA) requiring testing for sickle cell trait in all incoming Division I student athletes. The SACHDNC does not support the NCAA's rule to screen collegiate athletes for sickle cell trait.

Knowledge and perceptions of couples' voluntary counseling and testing in urban Rwanda and Zambia: a cross-sectional household survey.

BACKGROUND: Most incident HIV infections in sub-Saharan Africa occur between cohabiting, discordant, heterosexual couples. Though couples' voluntary HIV counseling and testing (CVCT) is an effective, well-studied intervention in Africa, <1% of couples have been jointly tested. METHODS: We conducted cross-sectional household surveys in Kigali, Rwanda (n = 600) and Lusaka, Zambia (n = 603) to ascertain knowledge, perceptions, and barriers to use of CVCT. RESULTS: Compared to Lusaka, Kigali respondents were significantly more aware of HIV testing sites (79% vs. 56%); had greater knowledge of HIV serodiscordance between couples (83% vs. 43%); believed CVCT is good (96% vs. 72%); and were willing to test jointly (91% vs. 47%). Stigma, fear of partner reaction, and distance/cost/logistics were CVCT barriers. CONCLUSIONS: Though most respondents had positive attitudes toward CVCT, the majority were unaware that serodiscordance between cohabiting couples is possible. Future messages should target gaps in knowledge about serodiscordance, provide logistical information about CVCT services, and aim to reduce stigma and fear.

Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research.

Transition of young adults with sickle cell disease (SCD) from pediatric to adult medical care is an important priority, given medical advances that have transformed SCD into a lifelong chronic condition, rather than a disease of childhood. Successful transfer from pediatric to adult care has its foundation in collaboration among the young adult, the family, and the health care system to support building skills in positive disease management and independent living. Systemic issues in transition from pediatric to adult care for individuals with SCD include limited access to adult providers with the skills and/or interest in caring for people with SCD; poor communication and follow-up between pediatric and adult providers; and insurance coverage and reimbursement for care coordination. Family and patient issues in transition include lack of skill development for successful transition into adulthood; absence of financial independence; fear of the unknown; and increasing morbidity with age. The design and evaluation of successful transition programming in SCD requires clarity in conceptual frameworks and consistent measurement, both before and after transfer to adult care. Strategies used by three SCD transition programs and future directions for research and program development are presented.

Findings from a community education needs assessment to facilitate the integration of genomic medicine into primary care.

PURPOSE: To assess the lay public's knowledge of, and beliefs about, genetics and genetic testing to create an educational initiative that promotes acceptance and utilization of genomic medicine in primary health care. METHODS: A telephone survey of English-speaking adults in Guilford County, North Carolina was conducted in 2006 to identify community members' educational needs regarding genetics and genetic testing. RESULTS: Most respondents recognized the connection between family history and disease risk. A majority did not appear to know about: (1) basic principles of inheritance, (2) laws prohibiting genetic discrimination, and (3) the availability and limitations of genetic tests. About 25% thought that they could not reduce their risk if they have a genetic predisposition for disease. Knowledge level was affected by education, experience, age, and race. CONCLUSION: If primary care providers use family history as a risk assessment tool, community education programs must address (1) the collection of family health history, (2) legislation regarding genetic nondiscrimination, (3) benefits and limitations of existing genetic tests, and (4) genetic determinism. Programs emphasizing practical, "how to" information can be targeted to individuals likely to collect family history information and address misperceptions about discrimination, testing, and determinism.

Implementation of culturally and linguistically competent policies by state Title V Children with Special Health Care Needs (CSHCN) programs.

OBJECTIVE: This descriptive study was intended to identify actual actions, steps and processes of Children with Special Health Care Needs (CSHCN) programs to develop, implement, sustain and assess culturally and linguistically competent policies, structures and practices. METHODS: An online 52-item mixed format survey of Maternal and Child Health (MCH) CSHCN directors was conducted. In April 2003 and May 2004, 59 directors were solicited to participate in the survey and 42 (86%) responded. Standard quantitative and qualitative analyses of the data were conducted to address key questions linked to the study's overall objective. RESULTS: Findings indicated that almost all respondents are implementing some actions to provide culturally and linguistically competent services including adapting service practices, addressing workforce diversity, providing language access, engaging communities and including requirements in contracts. These individual actions were less often supported by processes such as self-assessment and creating an ongoing structure to systematically address cultural and linguistic competence. Programs are challenged to implement cultural and linguistic competence by state agency organization and budget restrictions. CONCLUSIONS: The results of the study indicate a continued need for support within state MCH CSHCN programs in order to maintain or enhance the systematic incorporation of culturally and linguistically competent efforts.