Breast Density Knowledge and Awareness Among Latinas in a Low-Resource Setting.

PURPOSE: Latinas in low-resource settings face additional barriers to understanding mammographic breast density (MBD) implications. The authors compared MBD awareness and knowledge in Latinas from a safety-net clinic in Arizona with a national sample. METHODS: Latinas 40 to 74 years of age were recruited within a safety-net clinic during screening mammography appointments from 2016 to 2019 (AZ cohort) and from a nationally representative online panel in 2017 (NS cohort). Surveys completed in either English or Spanish assessed awareness and knowledge of MBD. Chi-square tests and logistic regression were used for comparisons. RESULTS: The NS cohort (n = 152) was older, more educated, more likely to have undergone prior mammography, and more likely to prefer English compared with the AZ cohort (n = 1,327) (P ≤ .03 for all) The NS cohort was more likely to be aware of MBD (32.6% versus 20.7%). Of those aware, the NS cohort was more likely to understand MBD's effect on masking (67.8% versus 37.0%) and breast cancer risk (72.2% versus 32.6%) compared with the AZ cohort (P ≤ .001 for all). Adjusting for age, education, screening history, and language, MBD awareness was similar between the two cohorts (adjusted odds ratio [ORadj], 0.95; P = .83), but knowledge of MBD as a masking factor (ORadj, 2.8; P = .03) and risk factor (ORadj, 7.2; P < .001) remained higher in the NS cohort compared with the AZ cohort. CONCLUSIONS: Differences in MBD awareness, but not knowledge, between Latinas in a low-resource setting compared with a national sample could be explained by age, education, screening history, and language preference, underscoring the need for tailored approaches to MBD education among Latinas.

Closing the Gap: Participatory Formative Evaluation to Reduce Cancer Screening Disparities among Patients with Limited English Proficiency.

Patients with limited English proficiency (LEP) have disproportionately lower rates of cancer screening than English-proficient patients. Given the multifactorial nature of screening disparities, strategies to improve screening rates must address barriers within and outside of the clinic setting. The objectives of this study were to understand local barriers from multiple stakeholder perspectives, to identify potential multilevel intervention approaches, and to mobilize community-engaged intervention decision making and planning. This participatory formative evaluation approach employed needs assessment and user engagement in order to enhance intervention usefulness and relevance. The study took place in several stages and involved clinic and community partners in a small metropolitan area of the Midwest USA. Interviews were conducted with LEP patients (n = 9) who had not completed three recommended screenings (breast, cervical, and colorectal), primary care providers (n = 5), medical interpreter (n = 5), and community members (n = 3). These highlighted multilevel barriers including limited patient understanding of preventive health, time and cost constraints, and variable roles of language interpreters. The literature was also reviewed to identify interventions used with similar populations. Findings from this review suggest that interventions are largely focused on single population groups or address single screening barriers. Finally, a community-academic summit (n = 48 participants) was held to review results and develop recommendations for community and clinic interventions. Findings from this study indicate that it is possible to engage a diverse group of stakeholders in strategies that are responsive to health care providers and patients, including LEP patients from heterogeneous backgrounds.

Patients' Perspectives and Advice on How to Discuss Sexual Orientation, Gender Identity, and Sexual Health in Oncology Clinics.

OBJECTIVE: This study sought to understand the patients' perspective of what contributes to an absence of discussions of sexual orientation (SO), gender identity (GI), and sexual health in cancer care. METHODS: Patients were recruited from oncology, gynecology, and a gender transition clinic to participate in semistructured interviews, which were analyzed with qualitative methods. RESULTS: A total of 25 patients were interviewed, shedding light on 2 themes. The first was that these conversations are important but infrequent. One patient explained, "…. we know people who have had sex changes…[they] would have appreciated that question." In response to whether sexual health was ever brought up, one patient responded, "No doctor ever has." Patients described unaddressed issues: "There have been times, you know, we've wondered if it was okay to make love." The second theme consisted of 4 pragmatic, patient-provided points to facilitate discussions: (1) implementation of a scale of 1 to 10 (with 10 being comfortable) to first gauge patients' comfort in talking about SO, GI, and sexual health; (2) having the health-care provider explore the topic again over-time; (3) making sure the health-care provider is comfortable, as such comfort appears to enhance the patient's comfort ("I have a doctor here, a female doctor, who just matter of fact will ask if I get erections and so on because of the medication she's giving me);" and (4) eliminating euphemisms (one patient stated, "I don't know what you mean by 'sexual health'."). CONCLUSION: Oncology health-care providers have a unique opportunity and responsibility to address SO, GI, and sexual health.

Querying Patients With Cancer About Sexual Health and Sexual and Gender Minority Status: A Qualitative Study of Health-Care Providers.

BACKGROUND: Although national organizations advocate that health-care providers ask patients about sexual health and sexual and gender minority status-to learn, for example, about side effects of treatment and to understand patients' social support-these conversations often do not occur. This study explored health-care providers' reasons for having/not having these conversations. METHODS: This single-institution study recruited health-care providers from medical oncology, hematology, radiation oncology, and gynecology. Face-to-face interviews were recorded, transcribed, and analyzed qualitatively. RESULTS: Three main themes emerged: (1) patient-centric reasons for discussing/not discussing sexual health and sexual and gender minority status ("So I think just the holistic viewpoint is important"); (2) health-care provider-centric reasons for discussing/not discussing these issues ("That's going to take more time to talk about and to deal with…" or "I was raised orthodox, so this is not something we talk about…"; and (3) reasons that appeared to straddle both of the above themes (eg, acknowledgment of the sometimes taboo nature of these topics). CONCLUSION: Although many health-care providers favor talking with patients with cancer about sexual health and sexual and gender minority status, limited time, personal reluctance, and the taboo nature of these topics appear at times to hamper the initiation of these conversations.

A qualitative study of healthcare-related experiences of non-smoking women with lung cancer.

PURPOSE: Lung cancer in non-smoking women is a distinct entity, but few studies have examined these patients' healthcare-related experiences. METHODS: Women with lung cancer and with no smoking history underwent a face-to-face semi-structured, audio-recorded interview that was analyzed with a qualitative inductive approach. RESULTS: Twenty-three patients were interviewed, and three themes emerged. The first theme centered on a delay in cancer diagnosis. One patient described, "The whole initial diagnostic process just fills me with rage… I didn't actually get my Tarceva® until the last week in April." Second, the diagnosis of lung cancer seemed especially challenging in view of patients' non-smoking history and otherwise good health; these factors seem to have contributed to the diagnostic delay. One patient explained, "Well, I was just so adamant that I didn't like smoking… maybe if I had been a smoker, they [the healthcare providers] would've been more resourceful." Finally, the stigma of a smoking-induced malignancy was clearly articulated, "Yeah. Because it's a stigma, and I had read that, too -- people go, 'Well, it's your own damn fault because you were a smoker.'" CONCLUSIONS: Non-smoking women with lung cancer appear to endure a long trajectory from symptoms to cancer diagnosis to the initiation of cancer therapy. An awareness and acknowledgement of this long trajectory might help healthcare providers render more compassionate cancer care to these patients.

Breast Density Awareness, Knowledge, and Attitudes Among US Women: National Survey Results Across 5 Years.

PURPOSE: To assess changes in breast density (BD) awareness, knowledge, and attitudes among US women over a period of 5 years. METHODS: Using a probability-based web panel representative of the US population, we administered an identical BD survey in 2012 and 2017 to women aged 40 to 74 years. RESULTS: In 2017, 65.8% had heard of BD (versus 57.5% in 2012; P = .0002). BD awareness in both 2012 and 2017 was significantly associated with race, income, and education. Among women aware of BD in 2017, 76.5% had knowledge of BD's relationship to masking (versus 71.5% in 2012; P = .04); 65.5% had knowledge of BD's relationship to cancer risk (versus 58.5%; P = .009); and 47.3% had discussed BD with a provider (versus 43.1% in 2012; P = .13). After multivariable adjustment, residence in a state with BD legislation was associated in 2017 with knowledge of BD's relationship to risk but not to masking. Most women wanted to know their BD (62.5% in 2017 versus 59.8% in 2012; P = .46); this information was anticipated to cause anxiety in 44.8% (versus 44.9% in 2012; P = .96); confusion in 35.9% (versus 43.0%; P = .002); and feeling informed in 89.7% (versus 90.4%; P = .64). Over three-quarters supported federal BD legislation in both surveys. Response rate to the 2017 survey was 55% (1,502 of 2,730) versus 65% (1,506 of 2,311) in 2012. CONCLUSION: Although BD awareness has increased, important disparities persist. Knowledge of BD's impact on risk has increased; knowledge about masking and BD discussions with providers have not. Most women want to know their BD, would not feel anxious or confused as a result of knowing, and would feel empowered to make decisions. The federal BD notification legislation presents an opportunity to improve awareness and knowledge and encourage BD conversations with providers.

Teaching Health-Care Providers to Query Patients With Cancer About Sexual and Gender Minority (SGM) Status and Sexual Health.

End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. In oncology clinics, where goals of care discussions about end of life are integral and frequent, querying patients about their SGM status and sexual health is of particular importance. The American Society of Clinical Oncology recently released a position statement that called for greater focus on SGM populations with the goal of reducing and eventually eliminating disparities in cancer care within this group. An important first step in addressing such disparities is learning how best to train cancer health-care providers to ask patients about their SGM status and about sexual health in general. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. This article also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.

What occurs in the other 20% of cancer patients with chemotherapy-induced nausea and vomiting (CINV)? A single-institution qualitative study.

PURPOSE: Despite recent advances in prophylaxis and management, 20% of patients who receive moderately to severely emetogenic chemotherapy continue to experience nausea and vomiting. Relying on patients' own words, this study sought to capture and characterize the lived experience with chemotherapy-induced nausea and vomiting (CINV) for this important subgroup of patients. METHODS: Solid tumor patients with a history of poorly controlled CINV provided informed consent and participated in a semi-structured interview, which was audio-recorded and transcribed. After data saturation, enrollment ceased, and inductive, qualitative analytic methods were employed. RESULTS: The median age of the 20 enrolled patients was 56 years (range 27-83) with an equal gender split; half had gastrointestinal cancers. Two themes emerged. First, CINV is severe and multidimensional: "It's like shredding your muscles… It's doing it over and over again." This symptom complex has psychosocial implications: "Isolation is a big thing." Financial toxicity is also implicated: "I use [an antiemetic] when I feel like it is absolutely necessary because it is so expensive I cannot afford it anyway." The second theme is underreporting of symptoms. Patients seemed to accept N/V as part of treatment and were therefore less forthcoming: "God, if you're pumping poison in your system, you gotta expect some side effects." CONCLUSIONS: These vivid data should motivate investigators to continue conducting clinical trials CINV and should remind healthcare providers about the importance of patient education on the availability of therapy for breakthrough symptomatology.

Racial Disparities in Breast Cancer Outcomes in the Metropolitan Atlanta Area: New Insights and Approaches for Health Equity.

BACKGROUND: Racial disparities in breast cancer (BC) outcomes persist where non-Hispanic black (NHB) women are more likely to die from BC than non-Hispanic white (NHW) women, and the extent of this disparity varies geographically. We evaluated tumor, treatment, and patient characteristics that contribute to racial differences in BC mortality in Atlanta, Georgia, where the disparity was previously characterized as especially large. METHODS: We identified 4943 NHW and 3580 NHB women in the Georgia Cancer Registry with stage I-IV BC diagnoses in Atlanta (2010-2014). We used Cox proportional hazard regression to calculate hazard ratios (HRs) and 95% confidence intervals (CIs) comparing NHB vs NHW BC mortality by tumor, treatment, and patient characteristics on the additive and multiplicative scales. We additionally estimated the mediating effects of these characteristics on the association between race and BC mortality. RESULTS: At diagnosis, NHB women were younger-with higher stage, node-positive, and triple-negative tumors relative to NHW women. In age-adjusted models, NHB women with luminal A disease had a 2.43 times higher rate of BC mortality compared to their NHW counterparts (95% CI = 1.99 to 2.97). High socioeconomic status (SES) NHB women had more than twice the mortality rates than their white counterparts (HR = 2.67, 95% CI = 1.65 to 4.33). Racial disparities among women without insurance, in the lowest SES index, or diagnosed with triple-negative BC were less pronounced. CONCLUSIONS: In Atlanta, the largest racial disparities are observed in luminal tumors and most pronounced among women of high SES. More research is needed to understand drivers of disparities within these treatable features.

Chemotherapy Acute Infusion Reactions: A Qualitative Report of the Perspectives of Patients With Cancer.

OBJECTIVE: A growing number of cancer antineoplastic agents can cause life-threatening acute infusion reactions. Because previous studies have not studied these reactions from the perspective of patients, this study was undertaken with that objective in mind. METHODS: Patients who had an acute infusion reaction were interviewed based on the Leventhal model. Once saturation of content was achieved, interviews were transcribed and analyzed with qualitative methodology. RESULTS: Twenty-one patients were enrolled. Most were women (n = 15); the median age was 58 years, and paclitaxel was the most common inciting agent. Three themes emerged. First, these reactions are frightening; patients made remarks such as "I was just thinking oh my God, I am dying." Second, prior education about these reactions seemed to mitigate this fear, "Basically everything the nurses told me potentially could happen, like happened. So, I was prepared." Third, when health-care providers were prompt and attentive during the reaction, patients described less fear with future chemotherapy, "So no, I'm really not fearful about going in tomorrow because I know they'll be there and they'll be watching me." CONCLUSION: These reactions evoke fear which can be mitigated with education prior to and with prompt responsiveness during the acute infusion reaction.

Adolescent-Parent Dyad Descriptions of the Decision to Start the HPV Vaccine Series.

STUDY OBJECTIVE: To examine how adolescent-parent dyads describe decision-making regarding initiation of the human papillomavirus (HPV) vaccine series, specifically who they viewed as making the final decision. DESIGN: Semistructured interviews with adolescent-parent dyads were audio-recorded and transcribed. Responses to the question: "How did you make a decision about whether or not to receive the HPV vaccine series?" were content-coded for each individual member of the dyad. SETTING: Adolescent medicine clinics of 2 large urban medical centers and through snowball sampling. PARTICIPANTS: Adolescents 14-17 years of age and a parent (N = 262). Qualitative analyses were conducted for those who agreed that they were offered and started the HPV vaccine series (n = 109). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Descriptions of the decision-making included 1 person (adolescent or parent) making the decision or joint decision-making by the adolescent and parent together. RESULTS: More than half of the dyads did not agree on who made the decision to start the vaccine. Most adolescents and parents described a similar account about when they were offered the HPV vaccine, although the interpretation of the event in terms of the decision-maker might have differed. More than half of adolescents and parents individually mentioned the health care provider in their description of the HPV vaccine decision-making process even though they were not queried about the role of the provider. CONCLUSION: Understanding the range of descriptions of these dyads is helpful to guide interventions to promote vaccine uptake in a manner that balances provider expertise, adolescent autonomy, and parental involvement.

Association of both consistency and strength of self-reported clinician recommendation for HPV vaccination and HPV vaccine uptake among 11- to 12-year-old children.

PURPOSE: We tested the hypotheses that consistency and strength of clinician recommendation of the human papillomavirus (HPV) vaccination would be associated with vaccine delivery rates. METHODS: From October 2015 through January 2016, we conducted a survey of primary care clinicians (n=227) in Southeastern Minnesota to evaluate clinician behaviors regarding HPV vaccination. The survey response rate was 41.0% (51 clinical sites). We used the Rochester Epidemiology Project, a clinical data linkage infrastructure, to ascertain clinical site-level HPV vaccination rates. We examined associations of clinician self-reports of both the consistency and strength of their recommendations for HPV vaccination for patients aged 11-12years (n=14,406) with site-level vaccination rates. RESULTS: The majority of clinicians reported consistently (always or usually) recommending the HPV vaccine to females (79.0%) and to males (62.2%); 71.9% of clinicians reported strongly recommending the vaccine to females while 58.6% reported strongly recommending to males. Consistency and strength of recommending the HPV vaccine was significantly higher among those practicing in pediatrics and board certified in pediatrics compared to family medicine. Higher rates of initiation (1 dose) [Incidence Rate Ratio (IRR)=1.05; 95% CI (1.01-1.09)] and completion (3 doses) [IRR=1.08; 95% CI (1.02-1.13)] were observed among clinical sites where, on average, clinicians more frequently reported always or usually recommending the vaccine for females compared to sites where, on average, clinicians reported recommending the vaccine less frequently. Similarly, higher rates of initiation [IRR=1.03; 95% CI (1.00-1.06)] and completion [IRR=1.04; CI (1.00, 1.08)] were observed among sites where clinicians reported strongly recommending the vaccine to females more frequently compared to sites where, on average, clinicians reported strongly recommending the HPV vaccine less frequently; similar associations were observed for male initiation [IRR=1.05; CI (1.02,1.08)] and completion [IRR=1.05; 95% CI (1.01, 1.09)]. CONCLUSIONS: Consistency and strength of HPV vaccination recommendation was associated with higher vaccination rates.

Prevalent Health Concerns Among African American Women Belonging to a National Volunteer Service Organization (The Links, Incorporated).

OBJECTIVE: African American women bear a disproportionate burden of cardiovascular disease (CVD) and cancer. The purpose of this study was to identify prevalent health concerns among African American women who are members of The Links, Incorporated (Links), a large national service organization with health programming for communities of color. METHODS: Survey data (n = 391) were collected during the 2012 Links National Assembly. Twenty-six health issues were presented within five groups: cancer, CVD, pulmonary disease, chronic conditions, and behavioral health. For each issue, women indicated if it was a concern for "you/your family" or "the African American community" via check-boxes. Differences in the proportions for "you/your family" and "the African American community" were evaluated using the McNemar test. RESULTS: Hypertension was the most frequently endorsed concern for you/your family (79 %); 73 % indicated this was a concern for the African American community. Sickle cell anemia was the most frequently endorsed concern for the African American community (77 %). Melanoma was the least endorsed health issue overall (15 % you/your family, 55 % community). Breast was the most frequently endorsed cancer concern, while lung was among the least. For 23 out of 26 health issues, the proportion concerned was greater for the "African American community" than for "you/your family" (all p < 0.05). CONCLUSION: CVD and breast cancer were salient concerns; both are topics for which national awareness campaigns and Links health programming exist. Comparatively lower concern was observed for melanoma, a cancer with known survival disparities, and for lung cancer, a leading cause of death in women.

I'm Still Me: Inspiration and Instruction from Individuals with Brain Cancer.

Individuals with brain cancer face many challenges, including threats to cognition, personality, and sensory and motor functioning. These can alter one's sense of identity and result in despair. Chaplain-led spiritual interviews were conducted with 19 patients with brain cancer as part of a larger spiritual legacy intervention called "Hear My Voice." The majority was female (58%), married (68%) and had aggressive/advanced tumors (63%). Participants were 22-68 years of age and expressed the following religious affiliations: Protestant (42%), Catholic (21%), Muslim (5%), and none (32%). Framework analysis was applied to reduce and understand the interview data. Primary codes were relationships with: God or the spiritual, others, and self. Brain cancer was reported to deepen and enrich patients' commitment to these relationships. Struggle and grief were also revealed. Results suggest the continued vitality, growth and generativity of these participants and provide insight for chaplains and others on the medical team.

Clinician knowledge, clinician barriers, and perceived parental barriers regarding human papillomavirus vaccination: Association with initiation and completion rates.

PURPOSE: We tested the hypothesis that clinician knowledge, clinician barriers, and perceived parental barriers relevant to the human papillomavirus (HPV) vaccination account for the variation in vaccine delivery at the practice-site level. METHODS: We conducted a survey from October 2015 through January 2016 among primary care clinicians (n=280) in a 27-county geographic region to assess clinician knowledge, clinician barriers, and perceived parental barriers regarding HPV vaccination. Primary care clinicians included family medicine physicians, general pediatricians, and family and pediatric nurse-practitioners. We also used the Rochester Epidemiology Project to measure HPV vaccination delivery. Specifically we used administrative data to measure receipt of at least one valid HPV vaccine dose (initiation) and receipt of three valid HPV vaccine doses (completion) among 9-18year old patients residing in the same 27-county geographic region. We assessed associations of clinician survey data with variation in vaccine delivery at the clinical site using administrative data on patients aged 9-18years (n=68,272). RESULTS: Consistent with our hypothesis, we found that greater knowledge of HPV and the HPV vaccination was associated with higher rates of HPV vaccination initiation (Incidence rate ratio [IRR]=1.05) and completion of three doses (IRR=1.28). We also found support for the hypothesis that greater perceived parental barriers to the HPV vaccination were associated with lower rates of initiation (IRR=0.94) and completion (IRR=0.90). These IRRs were statistically significant even after adjustment for site-level characteristics including percent white, percent female, percent ages 9-13, and percent with government insurance or self-pay at each site. CONCLUSIONS: Clinician knowledge and their report of the frequency of experiencing parental barriers are associated with HPV vaccine delivery rates-initiation and completion. Higher measures of knowledge correlated with higher rates. Fewer perceived occurrences of parental barriers correlated with lower rates. These data can guide efforts to improve HPV vaccine delivery in clinical settings.

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Vietnamese Health Care Providers' Preferences Regarding Recommendation of HPV Vaccines.

Physician recommendation is an important predictor of HPV vaccine acceptance; however, physician willingness and preferences regarding HPV vaccination may be influenced by factors including patient age, vaccine type, and cost. A cross-sectional survey was administered to a convenience sample of health care providers in Da Nang, Vietnam, to evaluate awareness, perceptions about HPV and HPV vaccines, and willingness to vaccinate a female patient. Willingness to vaccinate was evaluated using a full-factorial presentation of scenarios featuring the following factors: vaccine cost (free vs 1,000,000 VND), patient age (12, 16, or 22 years), and HPV vaccine type (bivalent vs quadrivalent). Responses from 244 providers were analyzed; providers had a mean age of 34±11.9 years; a majority were female, married, and had children of their own. Thirty-six percent specialized in obstetrics/gynecology and 24% were providers in family medicine. Of the three factors considered in conjoint analysis, vaccine cost was the most important factor in willingness to vaccinate, followed by patient age, and vaccine type. The most favorable scenario for vaccinating a female patient was when the vaccine was free, the patient was 22 years of age, and the HPV4 vaccine was described. In multivariable analysis, older age, being a physician, being married, and having children were all associated with increased willingness to recommend HPV vaccination (p<0.05). Provider willingness is an important aspect of successful HPV vaccination programs; identifying preferences and biases in recommendation patterns will highlight potential areas for education and intervention.

A Chaplain-led Spiritual Life Review Pilot Study for Patients with Brain Cancers and Other Degenerative Neurologic Diseases.

OBJECTIVE: This pilot study was designed to describe changes in spiritual well-being (SWB), spiritual coping, and quality of life (QOL) in patients with brain cancer or other neurodegenerative diseases participating in a chaplain-led spiritual life review interview and development of a spiritual legacy document (SLD). METHODS: Eligible participants were enrolled and completed baseline questionnaires. They were interviewed by a board-certified chaplain about spiritual influences, beliefs, practices, values, and spiritual struggles. An SLD was prepared for each participant, and one month follow-up questionnaires were completed. Two cases are summarized, and spiritual development themes are illustrated within a spiritual development framework. RESULTS: A total of 27 patients completed baseline questionnaires and the interview; 24 completed the SLD, and 15 completed the follow-up questionnaire. Increases in SWB, religious coping, and QOL were detected. The majority maintained the highest (best) scores of negative religious coping, demonstrating minimal spiritual struggle. CONCLUSIONS: Despite the challenges of brain cancers and other neurodegenerative diseases, participants demonstrated improvements in SWB, positive religious coping, and QOL. Patient comments indicate that benefit is related to the opportunity to reflect on and integrate spiritual experiences and to preserve them for others. Research with a larger, more diverse sample is needed, as well as clinical applications for those too vulnerable to participate in longitudinal follow-up.

Comparison of medical service use and human papillomavirus vaccination rates among Somali and white/non-Hispanic girls.

OBJECTIVE: This study aimed to determine if there is a relationship between medical use patterns and human papillomavirus (HPV) vaccination rates among a previously studied population of Somali and white/non-Hispanic girls in Rochester, MN. MATERIALS AND METHODS: With the use of a previously identified group of Somali and white/non-Hispanic girls with known HPV vaccination status, the number, type, and age at provider visits were abstracted. Abstraction was blinded to vaccination status and ethnic designation. χ and Student t tests were performed for descriptive analysis of parametric data. For nonparametric data, Wilcoxon rank sum test was performed. RESULTS: Somali girls had fewer provider visits (median = 7, interquartile range [IQR] = 3-12.25) compared with white/non-Hispanic girls (median = 12, IQR = 6-18) (p < .001). Among those who completed the HPV vaccine series, Somali girls had more well-child visits (median = 2, IQR = 1-2) compared with the white/non-Hispanic group (median = 1, IQR = 1-2) (p = .028). There was no difference in the number of emergency department visits or inpatient hospitalization between groups. CONCLUSIONS: White/non-Hispanic girls had higher HPV vaccine completion rates and more provider visits. However, this increase in number of encounters is due to an increase in specialty visits. This is unlikely to account for the increase in HPV vaccination completion rates. Community-based research will likely provide greater insight into the cause(s) of reduced vaccine rates among Somali adolescent girls.

The feasibility and educational value of Hear My Voice, a chaplain-led spiritual life review process for patients with brain cancers and progressive neurologic conditions.

Research continues to establish the importance of spirituality for many persons with medical illnesses. This paper describes a pilot study titled, "Hear My Voice," designed to provide an opportunity for persons with progressive neurologic illnesses, including brain tumors and other neurodegenerative diseases, to review and discuss their spirituality with a board-certified chaplain, and to prepare a spiritual legacy document (SLD). First, we provide background information that underscores the importance of such a project for this patient population that is particularly vulnerable to cognitive impairment and communication difficulties. Second, we provide detailed methodology, including the semi-structured interview format used, the development of the SLD, and an overview of responses from participants and investigators. We also describe the quantitative and qualitative approaches to analysis taken with the aim of developing scientific validation in support of the Hear My Voice project.