Herman G. Canady: A reintroduction.

For nearly four decades, Herman G. Canady actively promoted psychological science in the public interest. A skillful leader and administrator, Canady helped to establish one of the first national organizations of Black psychologists and was purportedly one of the founding members of the West Virginia State Psychological Association.

Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease: A Consensus Statement.

Importance: The introduction of gene therapies into the clinical care landscape for individuals living with sickle cell disease (SCD) represents a momentous achievement with the potential to rewrite the story of the world's most prevalent heritable blood disorder. This disease, which was first described in 1910 and did not see a US Food and Drug Administration-approved therapeutic until 1998, is poised to be among the first to realize the promise of gene therapy and genome editing. However, the future of these treatments now rests on how evidence of safety, outcomes, and acceptance in clinical practice unfolds in SCD.

Daily Loneliness Affects Quality of Life in Sickle Cell Disease.

Background: Loneliness is related to psychosomatic challenges in chronic illnesses; however, very little research focuses on loneliness in sickle cell disease (SCD), the most common genetic blood disorder. This study used a daily diary method to illustrate how loneliness and quality of life co-occur in the day-to-day lives of people living with SCD.

Method: Seventy-nine adults living with SCD (63 women; mean age = 31.

Illness Intrusiveness in Adults with Sickle Cell Disease: The Role of Fatigue.

Chronic illness experiences often interfere with daily functioning (a concept known as illness intrusiveness) and health-related quality of life (HRQoL). However, less is known about the role of specific symptoms in predicting illness intrusiveness in sickle cell disease (SCD). This exploratory study examined associations between common SCD-related symptoms (i.

Psychosocial and Clinical Risk Factors Associated with Substance Use in Observational Cohort of Patients with Sickle Cell Disease.

Patients with sickle cell disease (SCD) experience high rates of chronic pain, and have a high burden of mental health comorbidities shown to negatively influence health. There is limited research on substance use among individuals with SCD. The aim of this study is to measure the prevalence of substance use in patients with SCD and determine whether psychosocial or clinical risk factors are associated with substance use.

Marijuana use and health behaviors in a US clinic sample of patients with sickle cell disease.

Introduction: As marijuana use becomes more common, it is essential clinicians understand the relationship between marijuana use and health behaviors.

Methods: Using a retrospective cohort of adolescents and adults with sickle cell disease (SCD) stratified into a young (<25 years) and older cohort (> = 25 years), we conducted multiple linear regression examining relationship of marijuana use (independent variable) on each dependent variable (SCD self-management score and pain management).

Results: Among young cohort, 16.

Sickle Cell Disease, More Than Just Pain: The Mediating Role of Psychological Symptoms.

Objectives: Perceived stress is associated with sickle cell disease (SCD) pain; however, little is known about psychological mechanisms that may clarify this link among adult patients. This study explored whether anxiety and depression symptoms explained the relation between perceived stress and SCD pain episode frequency among 70 African-American adults (51.4% women, mean age 35.

Metabolic syndrome among adults living with sickle cell disease.

Metabolic syndrome (MetS) is a key risk factor for cardiovascular disease (CVD) incidence and all-cause mortality. MetS prevalence among adults with sickle cell disease (SCD) is not well known. We report initial findings from a cross-sectional study that examined MetS risk factors within a cohort of adults living with SCD.

Communalism Moderates the Association Between Racial Centrality and Emergency Department Use for Sickle Cell Disease Pain.

Sickle cell disease (SCD) is a genetic blood disorder that predominantly affects people of African descent. However, there is limited information on how social and cultural contexts affect SCD-related health care use. We explored whether communalism moderated the relation between racial centrality and emergency department use for SCD pain in a sample of 62 adults who were seen at a comprehensive clinic.

Depressive symptoms and sickle cell pain: The moderating role of internalized stigma.

Recent studies describe the clinical implications of sickle cell disease (SCD) stigma. However, little is known about its link to depressive symptoms or its relative influence on the association between depressive symptoms and SCD pain. We examined whether internalized stigma about SCD moderated the relation between depressive symptoms and pain among 69 adults attending a SCD clinic who reported pain episodes and healthcare use over the past three months.

Multiple Levels of Suffering: Discrimination in Health-Care Settings is Associated With Enhanced Laboratory Pain Sensitivity in Sickle Cell Disease.

Objective: People living with sickle cell disease (SCD) experience severe episodic and chronic pain and frequently report poor interpersonal treatment within health-care settings. In this particularly relevant context, we examined the relationship between perceived discrimination and both clinical and laboratory pain.

Methods: Seventy-one individuals with SCD provided self-reports of experiences with discrimination in health-care settings and clinical pain severity, and completed a psychophysical pain testing battery in the laboratory.

Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.

Background: Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known.

Objective: Our aim was to evaluate the association between perceived discrimination from healthcare providers and nonadherence to physician recommendations among persons with SCD, and to test the potentially mediating role of patient trust.

The Measure of Sickle Cell Stigma: Initial findings from the Improving Patient Outcomes through Respect and Trust study.

Research about the influence of stigma on health outcomes in sickle cell disease is limited. We administered the recently developed Measure of Sickle Cell Stigma to 262 patients in the United States. The Measure of Sickle Cell Stigma yielded very good internal consistency and four interpretable factors.

An unequal burden: poor patient-provider communication and sickle cell disease.

Objective: To assess disparities in the quality of healthcare provider communication experienced by African-American adults with and without sickle cell disease (SCD) in the U.S.

Methods: Poor provider communication was assessed by the Provider Communication subscale of the Consumer Assessment of Healthcare Plans and Systems survey.

Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.

Context: Perceived discriminatory experiences in society have been associated with a higher burden of pain among some minority patient populations.

Objectives: To describe the extent to which patients with sickle cell disease (SCD) perceive discrimination from health care providers and to examine the association of these experiences with the burden of chronic SCD pain.

Methods: Cross-sectional analysis of data collected at baseline of a prospective cohort study of SCD patient experiences of care (n = 291).

Attitudes toward clinical trials among patients with sickle cell disease.

Background A substantial number of planned clinical trials for sickle cell disease (SCD) have terminated early due to insufficient patient enrollment. Purpose To describe attitudes toward clinical trials among a sample of adults with SCD and identify patient-level factors associated with these attitudes. Methods Our data came from a sample (N = 291) of primarily adults with SCD participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) study, which is a federally funded observational study of SCD patient experiences in seeking healthcare.

Race and social attitudes about sickle cell disease.

Objective: Sickle cell disease is perhaps the most racialized condition in the history of modern medicine, yet very little research has focused on how racial perceptions influence social attitudes about the disease. Subsequently, the implications of these perceptions for public health prevention efforts and the provision of clinical care are not well known.

Design: In this brief commentary, we posit that social cognitive and media framing theories provide useful approaches for assessing relations between race and social attitudes about sickle cell disease.

Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease.

The attitudes of patients with sickle cell disease (SCD) toward the use of hydroxyurea (HU) therapy may contribute to the underutilization of HU in the United States, yet our understanding of these attitudes is limited. We examined the attitudes and beliefs of 94 adult SCD patients, comparing those who never used HU (n 5 37), formerly used HU (n 5 23), and were currently using HU (n 5 34). Seventy percent of current HU users reported some level of improvement from the drug ("average" or "very much") and 80% reported little or no trouble from side effects.

Predictors of employment status among African Americans with sickle cell disease.

Adults living with sickle cell disease (SCD) have extremely high rates of unemployment; however, very little is known about factors that contribute to their vocational outcomes. This study examined demographic, illness perception, and psychological variables as predictors of employment status among 115 adult respondents who completed a cross-sectional survey as part of the Cooperative Study of Sickle Cell Disease. Logistic regression analysis indicated that gender, assertiveness, and perceived impact of SCD were unique predictors of employment status.

Problematic hospital experiences among adult patients with sickle cell disease.

Background: Adults with sickle cell disease (SCD) have often reported difficulties obtaining care during vaso-occlusive crisis (VOC) in qualitative studies.

Methods: We measured the experiences of 45 SCD patients who received in-hospital care for VOC using the Picker Patient Experience Questionnaire (PPE-15), and used the one sample binomial test to compare with national norms.

Results: Most SCD patients reported that they were insufficiently involved in decisions (86%), staff gave conflicting information (64%), it wasn't easy to find someone to discuss concerns (61%), doctors' answers to questions were not clear (58%), nurses' answers to questions were not clear (56%), doctors did not always discuss fears and anxieties (53%), and nurses did not always discuss fears and anxieties (52%).

Religious coping and hospital admissions among adults with sickle cell disease.

Although a well-established literature implicates religiosity as a central element of the African American experience, little is known about how individuals from this group utilize religion to cope with specific health-related stressors. The present study examined the relation between religious coping and hospital admissions among a cohort of 95 adults with sickle cell disease-a genetic blood disorder that, in the United States, primarily affects people of African ancestry. Multiple regression analyses indicated that positive religious coping uniquely accounted for variance in hospital admissions after adjusting for other demographic and diagnostic variables.

Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care.

Background: Patient self-discharge from hospitals has been associated with a number of negative clinical outcomes. Research suggests that low patient trust and poor quality interpersonal experiences with care may be associated with hospital self-discharge. Although adults with sickle-cell disease (SCD) often report poorer quality healthcare experiences, research examining hospital self-discharge and its associations with both patient trust and quality of healthcare experiences is lacking for this patient population.

The association of provider communication with trust among adults with sickle cell disease.

Background: Adults with sickle cell disease often report poor interpersonal healthcare experiences, including poor communication with providers. However, the effect of these experiences on patient trust is unknown.

Objective: To determine the association between patient ratings of the previous quality of provider communication and current trust in the medical profession among adults with sickle cell disease.

Sickle cell disease in a "postracial" America.

Sickle cell disease was first identified as a clinical syndrome in the United States nearly 100 years ago. Since that time, perhaps no other medical condition has been as strongly associated with the concept of "race." In this commentary, the authors integrate multidisciplinary perspectives to argue for more rigorous analyses of how perceiving sickle cell disease through racial lenses impacts its public image and, more importantly, its perception among health care providers.