Colorectal cancer (CRC) is the third leading cause of cancer death among African Americans. Less than 50% of African Americans have had CRC screening. This study examined the relationships between family support and influence, cultural identity, CRC beliefs, and a screening informed decision among 129 urban African Americans. Family support (p < .01) significantly predicted CRC beliefs and CRC beliefs significantly predicted informed decision (p < .01). Based on study results, practitioners should routinely assess family support and CRC beliefs with African Americans patients. This may improve patient-provider shared decision-making satisfaction and CRC screening adherence among African American patients.
colorectal cancer screening; family support; African Americans; decision-making
Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions.
In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients’ RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback.
Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients’ psychological well-being and finances. Views of African American and non-African American participants were largely similar.
Educational resources addressing the influence of RRT selection on patients’ morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients’ personal relationships and finances could enhance resources’ cultural relevance for African Americans.
Decision-making; Renal replacement therapy; Family members; African American
This randomized controlled trial tested an intervention, Sharing Patients’ Illness Representations to Increase Trust (SPIRIT), designed to enhance communication regarding end-of-life care between African Americans with end-stage renal disease (ESRD) and their chosen surrogate decision makers (N = 58 dyads). We used surveys and semi-structured interviews to determine the feasibility, acceptability, and preliminary effects of SPIRIT on patient and surrogate outcomes at 1 week and 3 months post-intervention. We also evaluated patients’ deaths and surrogates’ end-of-life decision making to assess surrogates’ perceptions of benefits and limitations of the SPIRIT while facing end-of-life decisions. We found that SPIRIT promoted communication between patients and their surrogates and was effective and well received by the participants.
end-stage renal disease (ESRD); African American; end-of-life care; decision making; representational intervention
The incidence of end-stage renal disease (ESRD) in the US is rising at an alarming rate, with the largest increase among African-American populations. The key risk factors for kidney disease are hypertension and diabetes, which are both becoming more prevalent in the US, and particularly in African Americans. Although African Americans make up 12.6% of the US population, the incidence of diabetes-related ESRD is four times higher than for whites, and the prevalence of ESRD due to hypertension is twice that of white patients. Approximately 30 to 40% of all patients with diabetes will develop nephropathy and many will progress to ESRD, necessitating dialysis or kidney transplantation. Recent studies in patients with type 2 diabetes indicate a significant delay in progression or development of diabetic nephropathy following blockade of the renin-angiotensin-aldosterone system with the use of angiotensin receptor antagonists. Early intervention in patients with hypertension is necessary to prevent kidney damage, and data from the African American Study of Kidney Disease and Hypertension suggest that angiotensin-converting enzyme inhibitors are effective in this population. Although African-American patients receiving hemodialysis appear to have increased survival compared with whites, racial factors and poor access to medical care contribute to the increased risk of kidney disease in minorities. A concerted effort is necessary to raise awareness in minority populations and provide strategies for prevention and early treatment thereby attenuating the increasing prevalence of kidney failure in these groups.
One way of developing culturally relevant health communication in the African American church setting is to develop spiritually based interventions, in which the health message is framed by relevant spiritual themes and scripture. In this article we describe the development of a community health advisor (CHA)-led intervention aimed at increasing informed decision making (IDM) for prostate cancer screening among church-attending African American men. Full-color print educational booklets were developed and pilot tested with extensive community participation of church-attending African American men age-eligible for screening. The intervention development phase consisted of ideas solicited from an advisory panel of African American men (N = 10), who identified core content and developed the spiritual themes. In the intervention pilot testing phase, prototypes of the intervention materials were pilot tested for graphic appeal in two focus groups (N = 16), and content was tested for acceptability and comprehension using individual cognitive response interviews (N = 10). Recommendations were made for project branding and logo and for use of graphics of real people in the educational materials. Significant feedback was obtained from the focus groups, on the graphics, colors, fonts, continuity, titles, and booklet size/shape. The importance of working closely with the community when developing interventions is discussed, as well as the importance of pilot testing of educational materials.
Numerous studies have documented the presence of racial disparities among Americans in health outcomes with respect to cardiovascular disease, infant mortality, cancer, and kidney disease. With regard to kidney diseases, these disparities are more dramatic. African, Hispanic, and Native Americans have the highest risks of end-stage renal disease (ESRD). The incidence of ESRD is four times higher in African Americans than in whites. Diseases causing chronic kidney failure, such as diabetes mellitus, hypertension, systemic lupus erythematosus, and human immunodeficiency virus-associated nephropathy, are particularly prevalent among African-American patients. In addition to the higher prevalence, the morbidity associated with kidney complications of these diseases appears worse in African-American patients. African Americans also have worse outcomes and a relatively reduced access to kidney transplantation--the best therapy for ESRD. It is highly likely that social and environmental factors play a very significant role in the persistence of these disparities. A detailed understanding of these socioeconomic and environmental factors will be critical in formulating rational public health strategies to redress these disparities. This paper reviews the social, economic and environmental factors that impact on the incidence of ESRD in minority groups.
Prostate cancer is the second leading cause of cancer deaths in African American men. African Americans are at increased risk over other groups and have higher mortality. Since prostate cancer is highly variable among men, medical organizations are not in agreement whether men should be screened or the appropriate ages to screen. Many of these organizations recommend discussion with patients about the benefits and limitations of screening. Some of these groups support informed decision-making (IDM). Through IDM, the patient obtains all of the information about prostate cancer including risk, to make an informed choice regarding screening. Due to several factors including lowered engagement of African American men in the healthcare system, disparities in treatment, increased risk in developing and dying from the disease, as well as other cultural and structural constraints, IDM is examined and proposed as an appropriate tool for African American men. The use of IDM is discussed, along with several challenges and cautions. We conclude with recommendations and suggestions to the provider and patient to facilitate discussions regarding prostate cancer.
This study investigates how shared decision-making (SDM) is defined by African-American patients with diabetes, and compares patients’ conceptualization of SDM with the Charles model.
We utilized race-concordant interviewers/moderators to conduct in-depth interviews and focus groups among a purposeful sample of African-American patients with diabetes. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was done using an iterative process and each transcription was independently coded by two members of the research team.
Although the conceptual domains were similar, patient definitions of what it means to “share” in the decision-making process differed significantly from the Charles model of SDM. Patients stressed the value of being able to “tell their story and be heard” by physicians, emphasized the importance of information sharing rather than decision-making sharing, and included an acceptable role for non-adherence as a mechanism to express control and act on treatment preferences.
Current instruments may not accurately measure decision-making preferences of African-American patients with diabetes.
Future research should develop instruments to effectively measure decision-making preferences within this population. Emphasizing information-sharing that validates patients’ experiences may be particularly meaningful to African-Americans with diabetes.
shared decision-making; patient-provider communication; diabetes; African-American
Shared decision-making (SDM) is an important component of patient-centered healthcare and is positively associated with improved health outcomes (e.g. diabetes and hypertension control). In shared decision-making, patients and physicians engage in bidirectional dialogue about patients' symptoms and treatment options, and select treatment plans that address patient preferences. Existing research shows that African-Americans experience SDM less often than whites, a fact which may contribute to racial disparities in diabetes outcomes. Yet little is known about the reasons for racial disparities in shared decision-making. We explored patient perceptions of how race may influence SDM between African-American patients and their physicians. We conducted in-depth interviews (n=24) and five focus groups (n= 27) among a purposeful sample of African-American diabetes patients aged over 21 years, at an urban academic medical center in Chicago. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted iteratively; each transcription was independently coded by two research team members. Although there was heterogeneity in patients' perceptions about the influence of race on SDM, in each of the SDM domains (information-sharing, deliberation/physician recommendations, and decision-making), participants identified a range of race-related issues that may influence SDM. Participants identified physician bias/discrimination and/or cultural discordance as issues that may influence physician-related SDM behaviors (e.g. less likely to share information such as test results and more likely to be domineering with African-American patients). They identified mistrust of white physicians, negative attitudes and internalized racism as patient-related issues that may influence African-American patients' SDM behaviors (e.g. less forthcoming with physicians about health information, more deference to physicians, less likely to adhere to treatment regimens). This study suggests that race-related patient and physician-related barriers may serve as significant barriers to shared decision-making between African-American patients and their physicians. Finding innovative ways to address such communication barriers is an important area of future research.
USA; shared decision-making; patient/provider communication; diabetes; race; African-Americans; health disparities; physicians
High-quality cancer information resources are available but underutilized by the public. Despite greater awareness of the National Cancer Institute's Cancer Information Service among low-income African Americans and Hispanics compared with Caucasians, actual Cancer Information Service usage is lower than expected, paralleling excess cancer-related morbidity and mortality for these subgroups. The proposed research examines how to connect the Cancer Information Service to low-income African-American and Hispanic women and their health care providers. The study will examine whether targeted physician mailing to women scheduled for colposcopy to follow up an abnormal Pap test can increase calls to the Cancer Information Service, enhance appropriate medical follow-up, and improve satisfaction with provider-patient communication.
The study will be conducted in two clinics in ethnically diverse low-income communities in Chicago. During the formative phase, patients and providers will provide input regarding materials planned for use in the experimental phase of the study. The experimental phase will use a two-group prospective randomized controlled trial design. African American and Hispanic women with an abnormal Pap test will be randomized to Usual Care (routine colposcopy reminder letter) or Intervention (reminder plus provider recommendation to call the Cancer Information Service and sample questions to ask). Primary outcomes will be: 1) calls to the Cancer Information Service; 2) timely medical follow-up, operationalized by whether the patient keeps her colposcopy appointment within six months of the abnormal Pap; and 3) patient satisfaction with provider-patient communication at follow-up.
The study examines the effectiveness of a feasible, sustainable, and culturally sensitive strategy to increase awareness and use of the Cancer Information Service among an underserved population. The goal of linking a public service (the Cancer Information Service) with real-life settings of practice (the clinics), and considering input from patients, providers, and Cancer Information Service staff, is to ensure that the intervention, if proven effective, can be incorporated into existing care systems and sustained. The approach to study design and planning is aimed at bridging the gap between research and practice/service.
Live kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown.
We report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans.
The TALK Study rigorously developed and is currently testing the effectiveness of culturally sensitive interventions to improve patients' and families' consideration of LKT. Results from TALK will provide needed evidence on ways to enhance consideration of this optimal treatment for patients with end stage renal disease.
ClinicalTrials.gov number, NCT00932334
Ipsilateral breast tumor recurrence (IBTR) is the most common failure event after lumpectomy for ductal carcinoma in situ (DCIS). We evaluated invasive IBTR (I-IBTR) and its influence on survival among participants in two National Surgical Adjuvant Breast and Bowel Project (NSABP) randomized trials for DCIS.
In the NSABP B-17 trial (accrual period: October 1, 1985, to December 31, 1990), patients with localized DCIS were randomly assigned to the lumpectomy only (LO, n = 403) group or to the lumpectomy followed by radiotherapy (LRT, n = 410) group. In the NSABP B-24 double-blinded, placebo-controlled trial (accrual period: May 9, 1991, to April 13, 1994), all accrued patients were randomly assigned to LRT+ placebo, (n=900) or LRT + tamoxifen (LRT + TAM, n = 899). Endpoints included I-IBTR, DCIS-IBTR, contralateral breast cancers (CBC), overall and breast cancer–specific survival, and survival after I-IBTR. Median follow-up was 207 months for the B-17 trial (N = 813 patients) and 163 months for the B-24 trial (N = 1799 patients).
Of 490 IBTR events, 263 (53.7%) were invasive. Radiation reduced I-IBTR by 52% in the LRT group compared with LO (B-17, hazard ratio [HR] of risk of I-IBTR = 0.48, 95% confidence interval [CI] = 0.33 to 0.69, P < .001). LRT + TAM reduced I-IBTR by 32% compared with LRT + placebo (B-24, HR of risk of I-IBTR = 0.68, 95% CI = 0.49 to 0.95, P = .025). The 15-year cumulative incidence of I-IBTR was 19.4% for LO, 8.9% for LRT (B-17), 10.0% for LRT + placebo (B-24), and 8.5% for LRT + TAM. The 15-year cumulative incidence of all contralateral breast cancers was 10.3% for LO, 10.2% for LRT (B-17), 10.8% for LRT + placebo (B-24), and 7.3% for LRT + TAM. I-IBTR was associated with increased mortality risk (HR of death = 1.75, 95% CI = 1.45 to 2.96, P < .001), whereas recurrence of DCIS was not. Twenty-two of 39 deaths after I-IBTR were attributed to breast cancer. Among all patients (with or without I-IBTR), the 15-year cumulative incidence of breast cancer death was 3.1% for LO, 4.7% for LRT (B-17), 2.7% for LRT + placebo (B-24), and 2.3% for LRT + TAM.
Although I-IBTR increased the risk for breast cancer–related death, radiation therapy and tamoxifen reduced I-IBTR, and long-term prognosis remained excellent after breast-conserving surgery for DCIS.
There are few data on the epidemiology, consequences and treatment of depression in African-American patients with kidney disease in the US, even though such patients disproportionately bear the burden of this illness. This paper reviews data on the diagnosis and pathogenesis of depression and its consequences in patients with and without kidney disease, in addition to work on the epidemiology of depression in the African-American population and in the US End-stage Renal Disease (ESRD) program. African Americans are thought to have similar susceptibility to the development of depression as other populations in the US, but diminished access to care for this group of patients may be associated with differential outcomes. Data are presented from longitudinal studies of psychosocial outcomes in a population comprising primarily African-American patients with ESRD, and is reviewed the treatment of depression in patients with and without kidney disease. There are few studies of the management of depression that focus on minority populations. The authors agree with recommendations that treatment trials should include minority patients, patients with medical comorbidities, and the elderly, and assess function and quality of life as outcomes. The relationships between age, marital status and satisfaction, ethnicity, and perception of quality of life and depressive affect level and diagnosis of depression, and medical outcomes have not been determined in ESRD patients, or in African-American patients with ESRD. There are few studies of drugs for the treatment of depression in ESRD patients, and only one small randomized controlled trial. These have shown that therapy with selective serotonin reuptake inhibitors appears to be a safe treatment option for patients with ESRD. The long-term effectiveness of therapy, and its association with clinically important outcomes such as perception of quality of life, compliance, and survival have not been evaluated in ESRD patients. Also, therapeutic effectiveness and outcomes have not been assessed in minority populations with ESRD. These issues need to be addressed to optimize the management of depression in African Americans with kidney disease.
The National HIV Telephone Consultion Service (Warmline) at San Francisco General Hospital is a free clinical consultation service that provides expert medical and clinical pharmacy guidance to clinicians caring for patients with HIV/AIDS. Consultation can be especially useful when making critically important decisions about antiretroviral therapy and opportunistic infections. The Warmline has served an essential role for the many clinicians who are not AIDS experts but play key roles In HIV care, but do not have ready access to expert consultation. In addition, the Warmline serves a a medical and clinical pharmacy resource to other AID experts. Because the AIDS epidemic in the US profoundly affects African-Americans, the Warmline can be a valuable resource for African-American physicans and clinicians caring for African-American patients.
Underrepresentation of HIV-infected Hispanics and African Americans in clinical trials seriously limits our understanding of the benefits and risks of treatment in these populations. This qualitative study examined factors that racial/ethnic minority patients consider when making decisions regarding research participation. Thirty-five HIV-infected Hispanic and African American patients enrolled in clinical research protocols at the National Institutes of Health were recruited to participate in focus groups and in-depth interviews. The sample of mostly men (n = 22), had a mean age of 45, nearly equal representation of race/ethnicity, and diagnosed 2 to 22 years ago. Baseline questionnaires included demographics and measures of social support and acculturation. Interviewers had similar racial/ethnic, cultural, and linguistic backgrounds as the participants. Four major themes around participants’ decisions to enroll in clinical trials emerged: Enhancers, Barriers, Beliefs, and Psychosocial Context. Results may help researchers develop strategies to facilitate inclusion of HIV-infected Hispanics and African Americans into clinical trials.
African American/Black; clinical research; decision-making; health disparities; Hispanic/Latino; HIV
Shared decision-making (SDM) between patients and their physicians is associated with improved diabetes health outcomes. African-Americans have less SDM than Whites, which may contribute to diabetes racial disparities. To date, there has been little research on SDM among African-Americans.
We explored the barriers and facilitators to SDM among African-Americans with diabetes.
Qualitative research design with a phenomenological methodology using in-depth interviews (n = 24) and five focus groups (n = 27). Each interview/focus group was audio-taped and transcribed verbatim, and coding was conducted using an iterative process. Participants: We utilized a purposeful sample of African-American adult patients with diabetes. All patients had insurance and received their care at an academic medical center.
Patients identified multiple SDM barriers/facilitators, including the patient/provider power imbalance that was perceived to be exacerbated by race. Patient-related factors included health literacy, fear/denial, family experiences and self-efficacy. Reported physician-related barriers/facilitators include patient education, validating patient experiences, medical knowledge, accessibility and availability, and interpersonal skills.
Barriers/facilitators of SDM exist among African-Americans with diabetes, which can be effectively addressed in the outpatient setting. Primary care physicians, particularly academic internists, may be uniquely situated to address these barriers/facilitators and train future physicians to do so as well.
shared decision-making; patient-provider communication; diabetes; African-Americans
Importance of the field
Human immunodeficiency virus (HIV) infection is associated with the development of a wide spectrum of kidney diseases. HIV-associated nephropathy (HIVAN) is the most common cause of chronic kidney disease (CKD) in HIV-infected individuals and predominantly affects patients of African ancestry. HIVAN is a leading cause of end-stage renal disease (ESRD) among African-Americans.
Areas covered in this review
an overview of the spectrum of kidney disease in patients with HIV; current pharmacologic interventions to treat kidney disease in HIV.
What the reader will gain
Knowledge regarding the most common causes of kidney disease in HIV-infected patients and principals related to pharmacotherapy in HIV-infected patients with kidney disease.
Take home message
Kidney disease is an important cause of morbidity and mortality in HIV-infected patients and the most common cause of chronic kidney disease in this population is HIV-associated nephropathy, which is caused by viral infection of the renal epithelium. Several medications that are commonly used in HIV-infected patients can have adverse effects on the kidneys and the doses of many antiretroviral medications need to be adjusted in patients with impaired renal function.
HIV associated nephropathy; HIVAN; collapsing glomerulopathy; FSGS; antiretroviral therapy
Chronic kidney disease (CKD) is a serious threat to African-American public health. In this population CKD progresses to end-stage renal disease (ESRD) at quadruple the rate in Caucasians. Factors fueling progression to ESRD include diabetes and hypertension, which show high prevalences and accelerated renal damage in African- Americans, as well as possible nutritional, socioeconomic, and genetic factors. Anemia, a common and deleterious complication of CKD, is more prevalent and severe in African-American than Caucasian patients at each stage of the disease. Proactive management of diabetes, hypertension, anemia, and other complications throughout the course of CKD can prevent or delay disease progression and alleviate the burden of ESRD for the African-American community. Currently, African-Americans with CKD are less likely than Caucasian patients to receive anemia treatment before and after the onset of dialysis. Although African-Americans often require higher doses of erythropoiesis-stimulating agents, this may result from late treatment initiation, lower hemoglobin levels, or the presence of comorbidities such as diabetes and inflammation, although racial differences in response cannot be excluded. This review explores racial-specific challenges and potential solutions in renal anemia management to improve outcomes in African-American patients.
Anemia management; Diabetes mellitus; Hypertension; Chronic kidney disease; Dialysis
Recruitment of diverse populations into clinical trials remains challenging but is needed to fully understand disease processes and benefit the general public. Greater knowledge of key factors among minority populations associated with the decision to participate in clinical trials may facilitate recruitment and enhance the generalizibility of study results. Therefore, during the recruitment phase of the African American Study of Kidney Disease and Hypertension (AASK) trial, we conducted a telephone survey, using validated questions, to explore potential facilitators and barriers of research participation among eligible candidates residing in seven U.S. locations. Survey responses included a range of characteristics and perceptions among participants and non-participants and were compared using bivariate and step-wise logistic regression analyses.
One-hundred forty-one respondents (70 trial participants and 71 non-participants) completed the survey. Trial participants and non-participants were similar in multiple demographic characteristics and shared similar views on discrimination, physician mistrust, and research integrity. Key group differences were related to their perceptions of the impact of their participation. Participants associated enrollment with personal and societal health benefits, while non-participants were influenced by the health risks. In a step-wise linear regression analysis, significant positive predictors of participation were acknowledgement of health status as important in the enrollment decision (OR=4.54, p=0.006), employment (OR=3.12, p=0.05) and healthcare satisfaction (OR=2.12, p<0.01). Racially-based mistrust did not emerge as a negative predictor and subjects’ decisions were not influenced by the race of the research staff.
In conclusion, these results suggest that health-related factors, and not psychosocial perceptions, have predominant influence on research participation among African Americans.
African Americans; subject recruitment; willingness to participate; clinical trials
BACKGROUND: This study was a randomized trial to test the impact of an informed decision-making intervention on prostate cancer screening use. METHODS: The study population included 242 African-American men from three primary care practices who were 40-69 years of age and had no history of prostate cancer. Participants completed a baseline survey questionnaire and were randomly assigned either to a Standard Intervention (SI) group (N=121) or an Enhanced Intervention (EI) group (N=121). An informational booklet was mailed to both groups. EI group men were also offered a screening decision education session. Two outcomes were considered: (1) complete screening (i.e., having a digital rectal exam (DRE) and prostate specific antigen (PSA) testing), and (2) complete or partial screening (i.e., having a PSA test with or without DRE). An endpoint chart audit was performed six months after initial intervention contact. The data were analyzed via exact logistic regression. RESULTS: Overall, screening use was low among study participants. EI group men had a screening frequency two times greater than that of SI group men, but the difference was not statistically significant: 8% vs. 4 % (OR = 1.94) fo rcomplete screening, and 19% vs. 10% (OR = 2.08) for complete or partial screening. Multivariable analyses showed that being in the EI group and primary care practice were significant predictors of complete or partial screening (OR = 3.9 and OR = 5.64, respectively). CONCLUSION: Prostate cancer screening use may be influenced by exposure to decision education and the influence of screening-related primary care practice factors.
Over the cancer disease trajectory, from diagnosis and treatment to remission or end of life, patients and their families face difficult decisions. The provision of information and support when most relevant can optimize cancer decision making and coping. An interactive health communication system (IHCS) offers the potential to bridge the communication gaps that occur among patients, family, and clinicians and to empower each to actively engage in cancer care and shared decision making. This is a report of the authors' experience (with a discussion of relevant literature) in developing and testing a Web-based IHCS—the Comprehensive Health Enhancement Support System (CHESS)—for patients with advanced lung cancer and their family caregivers. CHESS provides information, communication, and coaching resources as well as a symptom tracking system that reports health status to the clinical team. Development of an IHCS includes a needs assessment of the target audience and applied theory informed by continued stakeholder involvement in early testing. Critical issues of IHCS implementation include 1) need for interventions that accommodate a variety of format preferences and technology comfort ranges; 2) IHCS user training, 3) clinician investment in IHCS promotion, and 4) IHCS integration with existing medical systems. In creating such comprehensive systems, development strategies need to be grounded in population needs with appropriate use of technology that serves the target users, including the patient/family, clinical team, and health care organization. Implementation strategies should address timing, personnel, and environmental factors to facilitate continued use and benefit from IHCS.
An interactive health communication system (IHCS) offers one platform for providing the information, communication, and coaching resources that cancer patients and their families need to understand the disease, find support, and develop decision-making and coping skills. One such IHCS—the Comprehensive Health Enhancement Support System (CHESS)—has evolved over the past 20 years. Based on our recent experience creating and testing a new version of CHESS—“Coping with Lung Cancer: A Network of Support”—this article outlines the issues faced in developing and implementing such a system within the cancer context.
oncology; outcomes research; quality of care
African-American men are approximately 2.4 times more likely to die of prostate cancer when compared to Caucasian men. Since prostate cancer screening is controversial, there lies a greater need to understand the decision-making factors for screening.
Cancer patients and patients at high risk for cancer face difficult decisions in choosing what is most appropriate for them and how to access resources. The purpose of this study was to examine how rural African-American men decide whether or not to have a prostate cancer screening.
A qualitative research design was used to examine rural African-American men’s experiences in decision making as it relates to prostate cancer screening. A hermeneutic phenomenological approach was used to analyze data. This approach focuses on the lived experiences of participants, as well as the meanings of their experiences.
Seventeen rural African-American men were interviewed about whether or not to have a prostate cancer screening. Three themes emerged from the findings: 1) family and friend involvement is important, 2) trust in the doctor is necessary, and 3) knowing a friend or family member with prostate cancer impacts decision making. The involvement of family and friends in the decision-making process for prostate cancer screening became prominent among the participants.
Opinions of family and friends were highly valued and had a great impact on the participants’ decision-making process. A combination of informal and formal support resources influenced the men’s decision for prostate cancer screening.
Prostate cancer screening; African American; family involvement; decision making; health disparities
Although the higher risk of prostate cancer for African-American men is well known in the medical community, it is not clear how prevalent this knowledge is among African-American men themselves. Both the side effects of treatment and the lack of a demonstrated mortality benefit of routine screening with the prostate-specific antigen test among men in the general population have increased the focus on patient participation in decision making about prostate cancer screening.
Data on 1075 male respondents to the 2003 Health Information National Trends Study were collected from October 2002 to April 2003 and analyzed in 2008 to examine the associations among race/ethnicity, demographic characteristics, and the perception of the risk of developing prostate cancer for African-American, Hispanic, and non-Hispanic white men aged ≥45 years without a history of prostate cancer.
Nearly 50% of African-American men, 47.4% of Hispanic men, and 43.3% of non-Hispanic white men perceived their likelihood of getting prostate cancer as somewhat or very low. Nearly 18% of African-American men, 21.6% of Hispanic men, and 12.9% of non-Hispanic white men perceived themselves to be more likely to get prostate cancer than the average man of the same age.
Despite statistics to the contrary, few African-American men perceived themselves to have a higher-than-average risk of prostate cancer, while a higher percentage of Hispanic men perceived their risk to be higher than that of the average man of the same age. These findings suggest that all men, but particularly African-American and Hispanic men, could benefit from information regarding their specific risk of developing prostate cancer before making a decision about prostate cancer screening.
Applying evidence is one of the most challenging steps of evidence-based clinical practice. Healthcare professionals have difficulty interpreting evidence and translating it to patients. Decision boxes are summaries of the most important benefits and harms of diagnostic, therapeutic, and preventive health interventions provided to healthcare professionals before they meet the patient. Our hypothesis is that Decision boxes will prepare clinicians to help patients make informed value-based decisions. By acting as primers, the boxes will enhance the application of evidence-based practices and increase shared decision making during the clinical encounter. The objectives of this study are to provide a framework for developing Decision boxes and testing their value to users.
We will begin by developing Decision box prototypes for 10 clinical conditions or topics based on a review of the research on risk communication. We will present two prototypes to purposeful samples of 16 family physicians distributed in two focus groups, and 32 patients distributed in four focus groups. We will use the User Experience Model framework to explore users' perceptions of the content and format of each prototype. All discussions will be transcribed, and two researchers will independently perform a hybrid deductive/inductive thematic qualitative analysis of the data. The coding scheme will be developed a priori from the User Experience Model's seven themes (valuable, usable, credible, useful, desirable, accessible and findable), and will include new themes suggested by the data (inductive analysis). Key findings will be triangulated using additional publications on the design of tools to improve risk communication. All 10 Decision boxes will be modified in light of our findings.
This study will produce a robust framework for developing and testing Decision boxes that will serve healthcare professionals and patients alike. It is the first step in the development and implementation of a new tool that should facilitate decision making in clinical practice.
Because shared decision making has been recommended for screening mammography by women under age 50, we studied women's decision-making process regarding the procedure.
Qualitative research design using in-depth semi-structured interviews.
Sixteen white and African-American women aged 38 to 45 receiving care at a large New England medical practice.
MEASUREMENTS AND MAIN RESULTS
We identified the following content areas in women's decision-making process: intentions for screening, motivating factors to undergo screening, attitudes toward screening mammography, attitudes toward breast cancer, and preferences for information and shared decision making. In our sample, all women had or intended to have a screening mammogram before age 50. They were motivated by the awareness of the recommendation to begin screening at age 40, knowing others with breast cancer, and a sense of personal responsibility for their health. Participants feared breast cancer and thought the benefits of screening mammography far outweighed its risks. Women's preferences for involvement in decision making varied from wanting full responsibility for screening decisions to deferring to their medical providers. All preferred the primary care provider to be the main source of information, yet the participants stated that their own providers played a limited role in educating them about the risks and benefits of screening and the mammography procedure itself. Most of their information was derived from the media.
The women in this study demonstrated little ambivalence in their desire for mammography screening prior to age 50. They reported minimal communication with their medical providers about the risks and benefits of screening. Better information flow regarding mammography screening is necessary. Given the lack of uncertainty among women's perceptions regarding screening mammography, shared decision making in this area may be difficult to achieve.
breast cancer; screening; mammography; decision making