The purpose of this study was to assess the knowledge of prostate cancer and screening and its associated factors in young Black men aged 18 to 40 years. This was a cross-sectional study conducted in a convenience sample of 267 young Black men in Austin, Texas. Knowledge about prostate cancer and screening was operationalized through 14 items, including 12 items from the Knowledge about Prostate Cancer Screening Questionnaire (PC knowledge), and two items assessing dietary knowledge and prostate cancer screening controversy. PC knowledge scores were regressed on age, cues to action, health screening experience, and demographic/personal factors. Most participants were African American men of American origin (65.3%) and were college freshmen (18.9%). PC knowledge scores were low, with mean correct responses of 28.5%, mean knowledge score of 5.25 ± 3.81 (possible score range of 0 to 14, with higher scores indicating higher PC knowledge) and a median score of 5.00. On average, 47% of the respondents replied “Don’t Know” to the questions. Overall, PC knowledge scores were low among these young Black men, especially in domains related to risk factors, screening age guidelines, limitations, and diet. It is thus important that these men be educated more on these important domains of prostate cancer and screening so that the decision to screen or not will be an informed one. Health screening experience, residence area, major field of study, and academic classification were significant predictors of knowledge.
BackgroundCutaneous lupus erythematosus (CLE) is a rare dermatologic autoimmune disease marked by photosensitive lesions that can vary in appearance depending on the subtype. The extent to which CLE affects a patient’s quality of life (QoL) has not been fully characterized. Focus groups were conducted to explore patients’ perspectives of how CLE has affected their lives and to understand the unmet needs in regards to CLE treatment and care.MethodsThis qualitative study involved three focus groups with a total of 19 patients with CLE. A moderator guide containing open-ended questions was used to assess how CLE affects overall QoL. The focus groups were audio-recorded with notetaking. Data were content-analyzed to identify emergent themes.ResultsFour themes emerged as important to patients with CLE: disease sequelae, social interactions, functioning, and unmet needs. Most patients reported decreased QoL due to signs and symptoms such as dyspigmentation and scarring. Having CLE negatively affected patients’ mental health and personal relationships and led to negative coping strategies, such as recreational drug use. Issues related to body image were also elicited by patients. Patients cited unmet needs including lack of treatments to improve chronic skin lesions of CLE and inadequate patient education on living with CLE.ConclusionsProviders can look for signs of QoL impairment in patients with CLE by asking questions related to body image, mental health, social isolation, and coping mechanisms. Future QoL measures can include the effect of CLE-specific attributes such as scarring and dyspigmentation to empower patients’ voices in determining therapeutic efficacy in future clinical trials. Findings from our study have added a new understanding of daily experiences that were elicited directly from patients with CLE.
Cutaneous lupus erythematosus (CLE) is a chronic dermatological autoimmune disease marked by photosensitive lesions that can lead to hyperpigmentation changes, scarring and hair loss. Health-related quality of life (HRQoL) in patients with CLE is severely impaired. Given the heterogeneous nature of CLE, health perceptions of patients can differ significantly from those of clinicians. It is important to use subjective measures, such as patient-reported outcomes (PROs), to capture HRQoL data in patients with CLE. We conducted a systematic review of published PRO instruments used in measuring HRQoL in patients with CLE. Also, we examined the disease burden on HRQoL in patients with CLE. To identify studies, PubMed/MEDLINE, Web of Science and CINAHL were searched using 'CLE/cutaneous lupus erythematosus' in combination with PRO-related keywords such as 'quality of life', 'self-report' and 'instrument'. English-language articles published between 2003 and 2014 were identified. A total of 482 citations were identified in the initial search. Eleven studies met our inclusion criteria, and five PRO instruments were found to be used: Skindex (versions 16 and 29), Dermatology Life Quality Index, 36-Item Short-Form Health Survey, and visual analogue scales for pain and pruritus. Patients with CLE reported having poor quality of life and experienced symptoms ranging from pain, pruritus and fatigue to photosensitivity. There is a limited number of studies examining PRO in patients with CLE. While our findings suggest that quality of life in patients with CLE is poor, further studies are needed to understand better the impact of CLE from patients' perspectives.
Future research should assess LCC intended versus altered use and create culturally relevant intervention measures.
Objectives The objective of this paper is to describe the annual direct medical expenditures for cutaneous lupus erythematosus (CLE) patients, and to estimate the incremental health care expenditures and utilization associated with depression among adults with CLE, while controlling for covariates. Methods Using the 2014 Medical Expenditure Panel Survey (MEPS), we compared CLE patients with and without depression to determine differences in: (a) health care utilization-inpatient, outpatient, office-based and emergency room (ER) visits, and prescriptions filled; and (b) expenditures-total costs, inpatient, outpatient, office-based, ER, and prescription medication costs, and other costs using demography-adjusted and comorbidity-adjusted multivariate models (age, gender, race/ethnicity, marital status, education, perception of health status, poverty category, smoking status, and Charlson Comorbidity Index). Results The total direct medical expenditure associated with CLE is estimated at approximately $29.7 billion in 2014 US dollars. After adjusting for covariates, adults with CLE and depression had more hospital discharges (utilization ratio (UR) = 1.13, 95% confidence interval (CI) (1.00-1.28)), ER visits (UR = 1.17, 95% CI (1.09-1.37)), and prescribed medicines (UR = 2.15, 95% CI (1.51-3.05)) than those without depression. Adults with CLE and depression had significantly higher average annual total expenditure that those without depression ($19,854 vs. $9735). Conclusions High health care expenditures are significant for patients with CLE, especially among those with depression. Prescription drugs, inpatient visits, and ER visits contributed most to the total expenditures in CLE patients with depression. Early diagnosis and treatment of depression in CLE patients may reduce total health care expenditures and utilization in this population.
The purpose of this integrative review was to explore the impact of prostate cancer (PCa) on the quality of life (QoL) and factors that contribute to the QoL for Black men with PCa. Prostate is recognized as the prevalent cancer among men in the United States. Compared to other men, Black men are diagnosed more frequently and with more advanced stages of PCa. Black men also experience disproportionately higher morbidity and mortality rates of PCa, among all racial and ethnic groups. The initial diagnosis of PCa is often associated with a barrage of concerns for one’s well-being including one’s QoL. As a result, men must contend with various psychosocial and physiological symptoms of PCa survivorship. Whittemore and Knafl’s integrative review method was utilized to examine empirical articles from the electronic databases of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, PubMed, Project Muse, and Google Scholar. The time frame for the literature was January 2005 to December 2016. A synthesis of the literature yielded 18 studies that met the inclusion criteria for the integrative review. A conceptual framework that examined QoL among cancer survivors identified four domains that measured the QoL among Black PCa survivors: (a) physical; (b) psychological; (c) social; and (d) spiritual well-being. Social well-being was the dominant factor among the studies in the review, followed by physical, psychological, and spiritual. Results indicate the need for additional studies that examine the factors impacting the QoL among Black PCa survivors, using a theoretical framework so as to develop culturally appropriate interventions for Black PCa survivors.
ObjectiveAlthough SLE disproportionately affects minority racial groups, they are significantly under-represented in clinical trials in the USA. This may lead to misleading conclusions in race-based subgroup analyses. We conducted focus groups to evaluate the perceptions of diverse patients with lupus about clinical trial participation.MethodsA qualitative research design employed three 90 min focus groups led by a trained moderator and guided by the Theory of Planned Behaviour. Open-ended questions about trial participation included advantages and disadvantages (behavioural beliefs), approving and disapproving significant others (normative beliefs), and participation enhancers and barriers (control beliefs). Discussions were recorded, transcribed and analysed to identify emerging themes.ResultsPatients with SLE (n=23) aged 21–72, with increased proportion of minority groups (65%), participated. Reported advantages of trial participation included altruism and personal benefit. Disadvantages included uncertainties, disappointment, information burden, and life–health balance. Although some patients had discussed research participation with approving or disapproving family or friends, self-approval superseded external approval. Barriers included logistics and time, and facilitators included flexibility in scheduling, advance notice of studies, streamlined forms, and hope for SLE improvement.ConclusionsKnowledge about potential benefits of clinical trial participation was high. Minority patients demonstrated confidence in making their own informed decisions, but major barriers for all participants included burdensome forms, travel, childcare, and work. These suggest a major impact on minority and all recruitment from behavioural and control aspects, which should be considered in the logistics of trial design. This does not minimise the potential importance of improved access and education about clinical research.
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