Perceptions of clinical care and research among African-American patients with lymphoma.

Across lymphoma subtypes, African Americans experience disparities in clinical trial enrollment and outcomes. Understanding the needs of this population can aid addressing these disparities. Semi-structured interviews were conducted with 14 self-identified Black/African-American lymphoma patients to determine their perceptions and attitudes about aspects of treatment and research. Constant-comparative methods identified themes including trust in medical staff, lack of diagnosis information, interest in research, research priorities, and potentially unaddressed emotional needs. Patients trusted their doctors and desired more diagnosis information. Participants often did not consider the emotions surrounding their diagnoses and concentrated on positive attitudes during treatment. Most participants were interested in clinical trials to help future lymphoma patients. Participants suggested a range of future research topics emphasizing lymphoma etiology. Building on trusting doctor-patient relationships, expanding clinical trials information, addressing emotional needs, and aligning research objectives with patient concerns are potential strategies for increasing clinical trial enrollment among Black lymphoma patients.

Supporting Decision-Making on Fertility Preservation Among Adolescent and Young Adult Women With Cancer.

Adolescents and young adults (AYAs) with cancer constitute approximately 70,000 patients diagnosed each year. Survival rates for AYAs with cancer have increased steadily in recent decades due to improvements in therapeutic regimens and early detection. Given the large and growing number of AYA cancer survivors, additional research is needed on the immediate and long-term psychosocial support required for this population including family planning and fertility. Fertility and fertility preservation in female AYAs, in particular, is historically understudied and has psychologically relevant ramifications distinct from male AYAs. Decision science can contribute to this area of oncological care and has implications for clinical encounters and research concerning female AYA patients with cancer. Patient-centered care and shared decision-making that integrates recent research regarding fertility preservation in the context of cancer.

A Hope-Based Intervention to Address Disrupted Goal Pursuits and Quality of Life Among Young Adult Cancer Survivors.

Over 70,000 US young adults are diagnosed with cancer annually, disrupting important life transitions and goal pursuits. Hope is a positive psychology construct associated with better quality of life (QOL) that focuses on goal-oriented thinking. We developed and tested Achieving Wellness After Kancer in Early life (AWAKE), a scalable 8-week app-based program consisting of educational videos, mood/activity tracking, and telephone-based coaching to promote hope and QOL in young adult cancer survivors (YACS, 18-40 years old). A two-arm RCT was used to examine the feasibility, acceptability, and potential efficacy of AWAKE (n = 38) versus attention control (AC; n = 18) among YACS within 2 years of completing treatment and recruited from two NCI-designated cancer centers. Outcomes including hope (Trait Hope Scale), QOL (36-Item Short Form Health Survey; Functional Assessment of Cancer Therapy-General), depressive symptoms (Patient Health Questionnaire-9), and substance use were assessed at baseline, 8 weeks, and 6 months. Participants were an average of 32.55 (SD = 5.45) years old; 75.0% were female, and 80.4% White. The most common cancers were breast cancer (28.6%), melanoma (16.1%), and leukemia/lymphoma (12.5%). High retention, engagement, and satisfaction rates were documented in both conditions; AWAKE versus AC participants rated video content as more relevant (p = 0.007) and reported greater likelihood of talking positively about the program (p = 0.005). Many efficacy change scores showed positive trends in AWAKE versus AC. Reorienting to one's goal pursuits after cancer diagnosis and treatment is critical and may be supported through hope-based interventions. Findings suggest that the AWAKE warrants subsequent research testing its efficacy, effectiveness, and scalability.

Priorities for Rural Lymphoma Survivors: A Qualitative Study.

BACKGROUND: We gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies. PATIENTS AND METHODS: We conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development. RESULTS: The greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities. CONCLUSION: These findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.

Barriers to mammography screening among racial and ethnic minority women.

RATIONALE: Breast cancer is the second leading cause of cancer death among women. Disparities in breast cancer mortality rates adversely affect racial/ethnic minority women. Mammography screening is the most effective early detection method and means of reducing mortality rates. Yet, barriers prevent racial/ethnic minority women from participating in regular screening. OBJECTIVE: This review aimed to summarize self-reported barriers to mammography screening in racial/ethnic minority women in studies using open-ended assessments and closed-ended assessments. METHOD: Literature searches were conducted in two databases, PsycINFO and PubMed. Barriers were detailed in full by barrier type (psychological/knowledge-related, logistical, cultural/immigration-related, and social/interpersonal) and summarized briefly by race/ethnicity (African American/Black, Asian/Pacific Islander, Hispanic, American Indian/Native American, and Middle Eastern). RESULTS: Twenty-two open-ended and six closed-ended studies were identified as eligible for this review. Overall, racial/ethnic minority women identified common logistical and psychological/knowledge-related barriers. Additionally, women reported cultural/immigration-related and social/interpersonal barriers that were closely tied to their racial/ethnic identities. CONCLUSIONS: It was concluded that cultural/immigration-related barriers may be the only barrier type that is unique to racial/ethnic minority women. Thus, designing studies of barriers around race and ethnicity is not always appropriate, and other demographic factors are sometimes a more important focus. The variability in 'barrier' definitions, how data were collected and reported, and the appropriateness of closed-ended measures were also examined. This literature may benefit from detailed and strategically designed studies that allow more clear-cut conclusions and better comparison across studies as well as improving closed-ended measures by incorporating insights from investigations using open-ended inquiry.

Patient and caregiver perceptions of lymphoma care and research opportunities: A qualitative study.

BACKGROUND: Although the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities. METHODS: In the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes. RESULTS: The majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship-oriented research and more studies regarding quality of life and mental health. CONCLUSIONS: The results of the current study identified unmet needs in clinical care and patient-oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well-being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.

Influenza Vaccination Documentation Rates During the First Year After Diagnosis of Diffuse Large B Cell Lymphoma.

INTRODUCTION: Influenza infection causes significant morbidity and mortality in patients with cancer, and annual influenza vaccination for individuals with cancer is recommended. We sought to examine the documentation rate of influenza vaccine administration, refusal, or counseling in the first year after diagnosis of diffuse large B cell lymphoma (DLBCL) for patients across 3 hospitals in 2 health care systems. PATIENTS AND METHODS: Documentation of vaccine administration, refusal, or counseling by physicians, advanced practice providers, or nursing staff during the first period of influenza vaccine availability after diagnosis (August to April) was assessed in medical records of patients diagnosed with DLBCL between February 2015 and October 2017 who presented to Emory St. Joseph Hospital (community hospital), Winship Cancer Institute of Emory University (academic medical center), or Grady Memorial Hospital (county hospital). RESULTS: Of the 57% (61/107) of newly diagnosed patients with DLBCL who had vaccine-related documentation, 43% refused vaccination. Counseling was not documented for any patient. Inpatient nursing performed 75% of all documentation. Primary oncologists documented vaccination in 4% of all cases. CONCLUSION: Despite the limited immunization documentation and high refusal rates observed in this study, the influenza vaccine refusal rate was lower than the average for the United States, the state of Georgia, and the previous studies of patients with cancer. Although routine outpatient vaccination occurs, improvements in screening, strategies for sharing patient vaccine-related information, and counseling of patients who refuse the vaccine are needed. Further work is also needed to determine the effectiveness of influenza vaccination in patients receiving anti-cancer therapy.

Ecological momentary assessment of various tobacco product use among young adults.

INTRODUCTION: Young adults are at high risk for using traditional and novel tobacco products. However, little is known about daily/weekly use patterns or psychosocial triggers for using various tobacco products. METHODS: This ecological momentary assessment (EMA) study examined timing, tobacco cravings, affect, social context, and other substance use (alcohol, marijuana) in relation to use of cigarettes, electronic nicotine delivery systems (ENDS), and any tobacco product (i.e., cigarettes, ENDS, cigars, hookah), respectively. We also examined interactions between these predictors, sex, and race/ethnicity. From a longitudinal study of 3418 18-25 year-olds from seven Georgia colleges/universities, we recruited 72 reporting current tobacco use to participate in the 21-day EMA study; 43 participated, of which 31 completed ≥66% assessments and were analyzed. Cravings, affect, social context, and substance use were assessed daily across four four-hour windows. RESULTS: Of the 31 participants, average age was 21.10 years (SD = 1.95), 45.2% were female, and 71.0% non-Hispanic White; 71.0% used cigarettes, 58.1% ENDS, 38.7% cigars, and 25.8% hookah (25.6% used one product, 46.5% two, 27.9% ≥ three). Predictors of cigarette use included higher anxiety, greater odds of marijuana and alcohol use, and higher boredom levels among women. Predictors of ENDS use included being non-White and greater odds of marijuana use, as well as higher tobacco cravings among women and higher boredom among men. Predictors of any tobacco product use included being non-White, higher boredom levels, and greater odds of marijuana and alcohol use. CONCLUSIONS: Distinct interventions may be needed to address use of differing tobacco products among young adults.

Initiation, continuation of use and cessation of alternative tobacco products among young adults: A qualitative study.

INTRODUCTION: Diverse non-cigarette alternative tobacco products are increasingly popular in the United States. This study investigates the reasons why young adults initiate and continue the use of these products, as well as potential motivations and approaches for quitting. Products assessed include cigarettes, little cigars/cigarillos (LCCs), smokeless tobacco, e-cigarettes, and hookahs. METHODS: We conducted 60 telephone interviews, of 30-minute duration, with tobacco users enrolled in colleges in Georgia. Qualitative analysis was used to identify themes emerging from the data. RESULTS: Reasons for initiation, continued use, and (potential) cessation showed similarities and differences across products. Most commonly cited reasons for initiation included: peer influence (all products), flavors/tastes (all products except cigarettes), and easy environmental access and/or low costs (LCCs, smokeless tobacco, and e-cigarettes). Participants discussed several influences on continued use, such as peer influence (cigarettes, LCCs, and hookahs), stress management (all products except hookahs), and use with other substances (cigarettes, LCCs, and hookahs). Primary motivations for cessation mentioned by participants were family responsibilities (cigarettes, e-cigarettes, and hookahs) and health concerns (all products except e-cigarettes). Frequently used cessation strategies included avoidance of other tobacco users (cigarettes, LCCs, and hookahs) and a reduction of nicotine intake (cigarettes and e-cigarettes). CONCLUSIONS: Our findings suggest that researchers should consider the differences in reasons for use and discontinued use of tobacco products in order to develop targeted messaging strategies, particularly noting the differential impact of interpersonal influences and health concerns. We also point to a need for regulatory action that limits diversification and accessibility of different products.

Perceptions of Alternative Tobacco Products, Anti-tobacco Media, and Tobacco Regulation among Young Adults: A Qualitative Study.

Objectives With increased alternative tobacco product (ATP) use and lagging public health action, we explored perceptions of ATPs, anti-tobacco messaging, and tobacco regulation among young adults. Methods Semi-structured interviews were conducted with 60 Georgia college students aged 18-25 using: (1) cigarettes, little cigars/cigarillos (LCCs), smokeless tobacco, or e-cigarettes ≥15 days of the past 30; or (2) hookah ≥10 of the past 30 days (due to lower frequency of use). Of 99 participants recruited, 80 consented, and 60 participated. Results Participants were on average 21.01 years old (SD = 2.07), 56.7% women, and 65.0% black; 56.7% reported current use of cigarettes, 43.3% LCCs, 26.7% smokeless tobacco, 45.0% e-cigarettes, and 41.7% hookah. Cigarettes were perceived as most harmful to health and most addictive. E-cigarettes and hookah were generally regarded as lowest risk. Many indicated that ATP risk information was limited or inaccessible and that most anti-tobacco campaigns were irrelevant to ATPs. Participants requested more research and dissemination of evidence regarding ATP risks and need for ATP regulation. Conclusions In light of low risk perceptions regarding ATPs among young adults, research, anti-tobacco campaigns, and regulation must address their known and potential risks.

Marijuana Use among Young Adults: Who Quits and Why?

OBJECTIVE: In this study, we examined: (1) differences among never, current, and former young adult marijuana users; and (2) reasons for use and cessation. METHODS: We conducted interviews with 57 young adults (including 46 marijuana users) enrolled in a longitudinal study of 3418 young adults and a survey in this cohort (N = 2866). Participants reporting former but not current use on the survey (N = 607) completed the Reasons for Marijuana Cessation section. RESULTS: Interview data indicated reasons for initiating (or not initiating) use, continued use, and quitting. The Reasons for Marijuana Cessation scale included 2 factors: (1) Instrumentality and 2) Social/Legal reasons. CONCLUSIONS: These findings might inform theoretical frameworks upon which marijuana cessation occurs and direct future intervention studies.

Resilience and biomarkers of health risk in Black smokers and nonsmokers.

OBJECTIVES: Blacks are disproportionately affected by tobacco-related illnesses as well as traumatic events associated with psychiatric conditions and smoking. We examined the potential protective nature of resilience within this context, hypothesizing resilience differentially moderates the associations of traumatic experiences to depressive symptoms and to biomarkers of health risk among Black ever versus never smokers. METHOD: Measures of resilience, traumatic experiences, depressive symptoms, and biomarkers (interleukin-6 [IL-6], C-reactive protein [CRP], allostatic load) were obtained among 852 Blacks recruited from Grady Memorial Hospital in Atlanta. RESULTS: Ever smokers experienced more trauma (p < .001) and depressive symptoms (p = .01). Structural equation modeling indicated that, in ever smokers, childhood trauma was positively associated with depressive symptoms (p < .001); resilience was negatively associated with depressive symptoms (p = .01). Depressive symptoms were positively associated with IL-6 (p = .03), which was positively associated with allostatic load (p = .01). Adulthood trauma was associated with higher CRP levels (p = .03). In never smokers, childhood (p < .001) and adulthood trauma (p = .01) were associated with more depressive symptoms. Adulthood trauma was also associated with higher CRP levels (p < .001), which was positively associated with allostatic load (p < .001). Never smokers with higher resilience had a negative association between childhood trauma and depressive symptoms whereas those with lower resilience had a positive association between childhood trauma and depressive symptoms. Resilience was negatively associated with CRP levels (p < .001). CONCLUSIONS: Interventions targeting resilience may prevent smoking and adverse health outcomes. (PsycINFO Database Record

Integrating Pregnancy Ambivalence and Effectiveness in Contraceptive Choice.

Approximately 70% of pregnancies among young unmarried women living in the United States are unintended. Unintended pregnancy results in negative health and economic outcomes for infants, children, women, and families. Further research into the decision-making process of contraceptive selection is needed to meet young women's contraceptive needs in the United States. Overall, 53 women ages 18-24 years completed in-depth qualitative interviews. Researchers used analytical techniques from grounded theory and HyperRESEARCH 3.5.2 qualitative data analysis software to identify emergent themes. Problematic integration theory provided a theoretical lens to identify young women's probabilistic and evaluative orientations toward contraception. Researchers identified two profound values at stake to participants regarding their contraceptive decisions: avoiding pregnancy in the present, and protecting future fertility. Participants resisted long-acting reversible contraception (LARC) methods (e.g., the intrauterine device and the implant) due to concerns about safety and fears about infertility. Participants experienced ambivalence toward the idea of pregnancy, which complicated contraceptive decisions, especially regarding long-term methods. Uncertainty led participants to rationalize their use of less effective methods and reduced information seeking. Findings from this study offer practical suggestions for practitioners and health communication campaign planners. Contraceptive access campaigns should focus on the effectiveness, safety, and convenience of LARC methods. Messages should help young women make contraceptive choices that better fit their needs in order to reduce unintended pregnancy.

Voices of the "99 Percent": The Role of Online Narrative to Improve Health Care.

CONTEXT: Communal blogs facilitate online narratives by providing opportunities for individuals to co-construct meaning and to engage in discussion about lived health experiences. OBJECTIVE: To examine the role of health as a connective narrative among individuals organizing collectively in an online community. The "We are the 99 percent" Tumblr blog emerged as a spontaneous community platform of the Occupy Wall Street movement in the US. DESIGN: Researchers conducted a qualitative content analysis of a total of 2003 blog posts. MAIN OUTCOME MEASURES: Data analysis included a process of data reduction, display, and conclusion drawing and verification. RESULTS: Bloggers discussed medical crises and the role of injury and illness in maintaining financial solvency. The difficulty of obtaining health care and the lack of accessible quality care emerged as themes. In particular, unemployment and underemployment limited access to health insurance coverage. The bloggers expressed dissatisfaction with the health care system and the impact of financial status on health. These challenges were exacerbated for marginalized populations, such as women and veterans. CONCLUSION: Findings offer implications for the value of online narrative to improve health care initiatives and to provide insight to integrated health care systems, including health care practitioners, nonprofit organizations, hospitals, and policy makers. Results suggest opportunities to address the health care gaps of marginalized populations and to develop public health policy.

A Qualitative Study of Young Women's Beliefs About Intrauterine Devices: Fear of Infertility.

INTRODUCTION: Approximately 80% of college-aged women are at risk of unintended pregnancy. The American College of Obstetricians and Gynecologists recommends long-acting reversible contraceptive (LARC) methods, including intrauterine devices (IUDs), as first-line pregnancy prevention for adolescents and young women. Yet, less than 5% of 15- to 19-year-old women using a method of contraception use LARC. Limited research explores young women's concerns about IUDs. METHODS: As part of a larger women's health research study, researchers conducted 53 in-depth interviews with women, aged 18 to 24 years enrolled in a midsized liberal arts college in the southeastern United States. Analytical techniques from the grounded theory approach were used to code line-by-line and identify themes emerging from these data. RESULTS: Fear of causing harm or infertility through IUD use emerged as a significant barrier to uptake. Negative and often unfounded beliefs about IUDs led to silence and limited observability of IUDs in daily life and health care contexts. Identity as a fertile woman emerged as an antecedent factor to the compatibility of IUDs with participants' values and beliefs. DISCUSSION: The link between fear of infertility and perceived identity was found to be a major factor in young women's contraceptive decision making. In order to increase uptake of IUDs, the beliefs of women must be addressed.