An Examination of John Henryism in Adults Living with Sickle Cell Disease.

BACKGROUND: John Henryism (JH) is a behavioral predisposition for high-effort coping with adversity. JH has been associated with hypertension in Black Americans with low socioeconomic status (SES) and is also found to be associated with psychological well-being. Sickle cell disease (SCD), a rare genetic disease largely affecting Black Americans in the United States, presents as a chronic condition that may benefit from a deeper understanding of the impact of JH on overall health. PURPOSE: This study examined the association between high and low JH and diastolic blood pressure, systolic blood pressure, hypertension prevalence, and sleep function. We relied on the biopsychosocial transaction model to adjust for relevant clinical and sociodemographic variables. METHODS: This was a cross-sectional secondary analysis of 274 adults with SCD living in the United States and recruited between 2014 and 2020. Study visits consisted of physical examinations, medical history, demographic, and psychosocial questionnaires. Adjusted linear regressions estimated associations between high and low JH and diastolic and systolic blood pressure as well as self-reported sleep function. Multivariable logistic regression was used to examine associations with hypertension prevalence. RESULTS: High JH was significantly associated with lower diastolic blood pressure (ß = - 2.98; 95% confidence interval = - 5.92, - 0.04) but higher sleep dysfunction (ß = 2.76; 95% confidence interval = 1.45, 4.07). CONCLUSIONS: Overall, we found positive psychological coping resources associated with high JH, with the exception of sleep. CLINICALTRIALS: gov Identifier: NCT02156102.

Navigating Access to Cancer Care: Identifying Barriers to Precision Cancer Medicine.

OBJECTIVE: Precision medicine is revolutionizing cancer treatment. However, there has been limited investigation of barriers patients endure to access precision cancer medicine. This study aims to report the experiences of underserved patient populations with limited access to genomic testing, clinical trials, and precision cancer treatment. METHODS: A mixed-method study was employed to quantitatively evaluate patients (N=300) seeking precision cancer medicine between January 2014- August 2017. Qualitatively, we conducted semi-structured interviews with eight case managers who navigate the health care and health insurance systems to provide patients with access to precision cancer medicine care. All interviews were analyzed to identify themes. RESULTS: Within our patient cohort, 69% were diagnosed in stage I of cancer disease. Overall, 27 patients (9%) were denied treatment as a final outcome of their case due to insurance denials, 35 patients (12%) died before gaining access to precision cancer medicine, and 6 patients (2%) received precision cancer medicine through clinical trials. Four broad thematic areas emerged from the qualitative analysis: 1) lack of patient, provider and insurer knowledge of precision cancer medicine; 2) barriers to clinical trial participation; 3) lack of patient health literacy; and 4) barriers to timely access to care. CONCLUSION: Our combined analyses suggest that both system-level and patient-level barriers limit patient access to precision cancer medicine options. Additionally, we found that these barriers may exist not only for traditionally underserved patients, but also for resourced and insured patients trying to access precision cancer medicine.

Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.

INTRODUCTION: Many research programs are challenged to accommodate low-resource research participants' (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP. METHODS: A semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants. RESULTS: Three content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance. CONCLUSION: Support to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.

Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing.

Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions.