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AIMS: High-dose methotrexate (HDMTX) is an essential part of the treatment of several adult and paediatric malignancies. Despite meticulous supportive care during HDMTX administration, severe toxicities, including acute kidney injury (AKI), may occur contributing to patient morbidity. Population pharmacokinetics provide a powerful tool to predict time to clear HDMTX and adjust subsequent doses. We sought to develop and validate pharmacokinetic models for HDMTX in adults with diverse malignancies and to relate systemic exposure with the occurrence of severe toxicity.METHODS: Anonymized, de-identified data were provided from 101 US oncology practices that participate in the Guardian Research Network, a non-profit clinical research consortium. Modelled variables included clinical, laboratory, demographic and pharmacological data. Population pharmacokinetic analysis was performed by means of nonlinear mixed effects modelling using MonolixSuite.RESULTS: A total of 693 HDMTX courses from 243 adults were analysed, of which 62 courses (8.8%) were associated with stage 2/3 acute kidney injury (43 stage 2, 19 stage 3). A three-compartment model adequately fitted the data. Time-dependent serum creatinine, baseline serum albumin and allometrically scaled bodyweight were clinically significant covariates related to methotrexate clearance. External evaluation confirmed a satisfactory predictive performance of the model in adults receiving HDMTX. Dose-normalized methotrexate concentration at 24 and 48 hours correlated with AKI incidence.CONCLUSION: We developed a population pharmacometric model that considers weight, albumin and time-dependent creatinine that can be used to guide supportive care in adult patients with delayed HDMTX elimination.

Low pre-exposure prophylaxis (PrEP; medication to reduce HIV risk among HIV-negative people) awareness may be partially responsible for racial/ethnic differences in treatment uptake. Little research has examined PrEP awareness among African Americans with diverse HIV risk profiles. Audio computer-assisted self-interviews were distributed to 204 African American young adults (age 18-29) demonstrating heightened HIV vulnerability. Chi square analysis and logistic regressions were conducted to determine factors associated with PrEP awareness. While unadjusted logistic regression indicates that age 18-21 years (plt;.01), heterosexuality (plt;.05), lower education (plt;.05), less frequent HIV testing (plt;.01), STI diagnosis history (plt;.05), not having casual sex (plt;.05), and not having a one night stand (plt;.01) were associated with decreased PrEP awareness, only heterosexuality (plt;.05), lower education (plt;.05), and less HIV testing (plt;.01) remained significant in adjusted analysis. PrEP-focused education efforts should include outreach across education gradients and sexual orientations. Counselling efforts included with HIV testing may be responsible for accelerating PrEP knowledge among testers.

OBJECTIVE: To illustrate Black youth’s perceptions of police violence in West Louisville, Kentucky, how they make sense of it, and their responses to it. METHOD: The study used qualitative interviews with youth ages 10 to 24 residing in West Louisville. The interviews did not specifically inquire about experiences with police, but the theme emerged so strongly from the overall analysis that the current study was warranted. The research team employed a constructivist analytic approach. RESULTS: The analysis yielded two overarching themes, each with several subthemes. The first theme was Black youth experience profiling and harassment by police, with subthemes focused on youth feeling targeted, youth recognizing policing as a tactic to remove them from their community, and youth being acutely aware of police-involved violence. The second theme was Black youth’s experiences with the police cultivates mistrust and unsafety, with subthemes including police seen as more likely to harm than help, police not resolving injustices against Black people, and police presence escalating conflict in Black communities. CONCLUSIONS: Youth’s narratives regarding their experiences with police highlight the physical and psychological violence enacted by police who come into their community, supported by the law enforcement and criminal justice systems. Youth recognize systemic racism in these systems and how it affects officers’ perceptions of them. The long-term implications of persistent structural violence these youth endure has implications on their physical and mental health and wellbeing. Solutions must focus on transforming structures and systems.

Background Across the U.S., large inequities in asthma prevalence and outcomes persist, disproportionately affecting low-income, minoritized children. West Louisville is particularly impacted by these inequities due to a complex interplay of socioeconomic, historical, and industrial processes. Additionally, low health literacy and mistrust in healthcare exacerbate poor asthma self-management. Objective To engage community members and health professionals to address childhood asthma management in a marginalized community experiencing significant health inequities. Patient Involvement Although prior asthma knowledge was not required, the majority of our community advisory council (CAC) members either had asthma or cared for children/grandchildren with asthma. Through facilitated decision-making using the Boot Camp Translation approach, the CAC chose to focus on improving asthma self-management in their community through enhancing the design and utilization of asthma action plans (AAPs). Methods Upon adding inhaler images to a user-friendly AAP, the CAC developed and implemented a provider incentive program and a health communication campaign to promote the Tool’s utilization. Evaluation of the intervention consisted of a short questionnaire measuring relevant patient demographics and campaign knowledge, and phone interviews with providers to gather feedback on the incentive and Tool design. Results Over the short two-month intervention, a total of 8 practices with 28 providers used 153 Tools to provide asthma self-management counseling. The majority of providers preferred the enhanced Tool to other AAPs they had used. Inhaler images facilitating improved communication regarding asthma medications. Discussion Using a participatory approach, a community preferred intervention targeting barriers to effective asthma control increased provider utilization and community awareness of AAPs and bridged a communication gap between patients and providers. Practical Value Leveraging community members’ (including patients/caregivers) and health professionals’ expertise led to the development of an enhanced patient-education tool and an effective provider incentive program with the potential to improve childhood asthma management in marginalized populations.

Purpose A provider's ability to translate knowledge about transgender health to affirming patient care is key to addressing disparities. However, standardized patient (SP) programs have little published guidance for gender-affirming care or addressing disparities experienced by transgender and nonbinary patients. Method Between 2018 and 2019, we invited all 208 accredited US and Canadian medical schools to participate in a study to determine how gender minorities are represented in SP encounters. Responding programs (n = 59, response rate = 28%) that represented patients with diverse gender identities were invited to complete semistructured interviews about SP case content, impact, and barriers to this work. Discussions were analyzed using a modified grounded theory method. Results Fifty nine of 208 eligible programs (response rate = 28.3%) completed our survey and 24 completed interviews. More than half of programs used gender minority SPs (n = 35, 59.3%). More than half of the programs also reported portraying gender minority cases (n = 31, 52.5%). Interviewees described how effective SP simulation required purposeful case development, engaging subject matter experts with lived experience, and ensuring psychological safety of gender minority SPs. Barriers included recruitment, fear of disrespecting gender minority communities, and transphobia. Engaging gender minorities throughout case development, training, and implementation of SP encounters was perceived to reduce bias and stereotyping, but respondents unanimously desired guidance on best practices on SP methodology regarding gender identity. Conclusions Many programs have established or are developing SP activities that portray gender minority patients. Effective SP simulation hinges on authenticity, but the decisions around case development and casting vary. Specifically, programs lack consensus about who should portray gender minority patients. This research suggests that input from gender minority communities both to inform best practices at the macro level and in an ongoing advisory capacity at the program level will be essential to teach gender-affirming care.

Primary central nervous system lymphoma (PCNSL) is a highly aggressive non-Hodgkin lymphoma that is confined within the CNS. Due to its ability to cross the blood–brain barrier, high-dose methotrexate (HDMTX) is the backbone for induction chemotherapy. This systematic review was conducted to observe outcomes among different HDMTX doses (low

Pre-exposure prophylaxis (PrEP), a potent medication for HIV prevention, shows promise for reducing HIV disparities. However, PrEP is not equitably utilized by all races and ethnicities in the USA. Its uptake is especially low among African Americans, who are disproportionately impacted by HIV. Understanding factors influencing low PrEP uptake among diverse priority groups of African American young adults beyond gender and sexual minority groups (e.g., cisgender heterosexual people) may increase PrEP uptake. Data were from the Afya project, a study examining the use of PrEP for HIV prevention among multiple priority groups of African American young adults at heightened HIV risk, using Theory of Reasoned Action/Theory of Planned Behavior (TRA/TPB) as a theoretical framework. Eleven focus groups (N = 63) were conducted in Louisville, Kentucky from June to November 2018 with African American young adult priority groups (18-29 years old): men who have sex with men, transgender women, and cisgender heterosexual men and women demonstrating heightened sexual risk. Data were analyzed using constructivist grounded theory techniques. PrEP awareness, knowledge, perceived HIV risk and perceived need for PrEP (behavioral beliefs) and adherence beliefs (control beliefs), opinions of others (subjective norms), and confidence in ability to adhere to PrEP (perceived behavior controls) influenced acceptability of PrEP (participants' attitudes) and, in turn, influenced intention to use PrEP either negatively or positively. Thus, understanding factors that create reticence to PrEP use provides useful insight for tailoring outreach interventions towards African American young adults to improve PrEP uptake.

Many professional chaplaincy organizations in the United States have board certified healthcare chaplains since the 1920s and documented how they have adapted their process as the profession has grown. In 2019, the Association of Professional Chaplains and the National Association of Catholic Chaplains sought the perspectives of key stakeholders about professional chaplaincy board certification. This study reports the results from 50 semi-structured interviews with certification candidates, certification committee members, and chaplaincy managers in the United States. Participants discussed the preparation of the certification application, the certification interview, the ease and difficulty of certification competencies, and the evolving workforce. This study demonstrated divergent views on many aspects of board certification, but participants predominately respected and valued the process. Chaplains with varying levels of experience discussed how board certification strengthens multidisciplinary respect and collaboration. Participants reported difficulties with competencies that required translating between theory and practice.

Background Depression is the leading cause of disability in the United States. African Americans are disproportionately affected owing to systemic and sociocultural factors. Stigma, denial, and inadequate knowledge on depression are significant barriers to mental help seeking. Addressing mental health literacy can improve mental health knowledge, management, and outcomes. West Louisville, a predominantly African American community, is of particular interest regarding mental health literacy given existing socioeconomic and health disparities. Boot Camp Translation (BCT), a community-based participatory research (CBPR) approach, enables the translation of medical guidelines into culturally relevant messages. Objectives To describe the use of the BCT approach in developing and implementing a culturally tailored health communication campaign designed to measurably increase referral to, and use of, services for depression in West Louisville. Methods Using the BCT approach, a group of academics, community members, and health/public health professionals convened over 6 months to develop and implement a health communication campaign on depression. Process and outcome evaluations were conducted using quantitative and qualitative methods. Results Our BCT was effective in engaging stakeholders, activating community members, and designing culturally informed health communication materials on depression. Although limited, our evaluation data suggest a modest increase in the evaluation and treatment of depression in West Louisville. Conclusions BCT offers a structured process for engaging stakeholders in developing culturally tailored health communication campaigns.

Pre-exposure prophylaxis (PrEP) is a biomedical HIV prevention strategy with potential to reduce racial HIV disparities. However, African-Americans have not received the benefits of PrEP to the same extent as other groups. The theory of planned behavior (TPB) was employed to explain intentions to use PrEP among a sample of African-Americans (age 18–29) in Louisville, Kentucky. Data were derived from the Afya Project, a study examining PrEP-focused HIV prevention for African-American young adults. The sample was developed through respondent-driven sampling and participants (N = 181) completed audio computer-assisted self-interviews assessing demographics and TPB variables. Analysis of variance was used to examine relationships between demographics and PrEP intentions. Linear regressions determined associations between control beliefs, attitudes, norms, and PrEP use intentions. Confidence in using PrEP (p ≤ .0001), perceived HIV risk (p ≤ 0.05), perceived likelihood of acquiring HIV (p ≤ 0.05), and positive norms around PrEP (p ≤ 0.05) were significantly associated with PrEP use intentions. Findings can inform interventions to advance PrEP as a HIV prevention option for African-American populations at higher risk of contracting HIV.

Black children are twice as likely as non-Hispanic white children to have asthma due to an interplay of socioeconomic, historical, and industrial factors. The underlying socio-economic and structural inequities result in poor adherence to recommended asthma management treatments. National guidelines suggest asthma action plans (AAPs) as a tool for patient self-management, yet they remain underutilized. Boot Camp Translation (BCT), rooted in community-based participatory research, provides a method for engaging communities to improve health literacy. This article describes the successful use of BCT to develop a culturally relevant AAP promotion campaign in West Louisville, a predominantly Black community that experiences social and health disparities.

Phenomenon: Disparities in health and healthcare for gender minorities (GMs) such as transgender people are significant, and medical educators have a responsibility to ensure trainees master the cl...

Pre-exposure prophylaxis (PrEP) for HIV prevention can help reduce racial/ethnic HIV disparities in the USA. However, the benefits of PrEP have not been equally distributed across races. Community-informed, culturally tailored media has the potential to increase PrEP awareness and acceptability among vulnerable African-American populations. More research is needed to identify media preferences around PrEP for these groups in order to optimize effectiveness of health messaging. This study details the development of a community-informed multimedia (print, digital, Internet radio, website, social media) campaign to increase PrEP awareness among African-American young adults (age 18–29 years). Eleven focus groups with African-American young adults and a community advisory board informed the intervention. Focus group participants expressed concerns with PrEP safety, efficacy, accessibility, the universality of HIV vulnerability, and representation. Campaign elements were then developed based on this feedback. Future studies should examine the effectiveness of culturally tailored multimedia PrEP campaigns.

Health insurance and health systems literacy needs are evolving with changes to the U.S. healthcare system. Following the implementation of the Affordable Care Act, many residents in West Louisville, Kentucky, a predominantly African American community, gained health insurance coverage for the first time. A qualitative study was conducted to assess residents' health insurance and health systems needs and to identify ways of assisting residents with navigating the healthcare system and utilizing their health insurance coverage. Twelve focus groups were conducted with a total of eighty-seven residents. Round one explored participants' experiences with health insurance, and round two examined their health information delivery preferences. An inductive thematic analysis was performed. Participants revealed the complexity of the health insurance system, many citing difficulty understanding health insurance concepts and finding suitable healthcare providers. High costs, mistrust in the healthcare system, and perceived public-private disparities were barriers to effective health insurance utilization. Health insurance materials in their current form have limited value in translating health insurance and health systems information to the West Louisville population. Alternative forms of information delivery, such as locally accessible and culturally competent community health workers may be better received and more successfully utilized by the community.

17 Background: In Sri Lanka, children with acute lymphoblastic leukemia are treated on the UKALL 2011 protocol, which includes high-dose methotrexate (HDMTX) in high risk patients. Safe delivery of HDMTX is challenging in low resource settings, where deviation from accepted guidelines can occur frequently and result in toxicity, subsequent treatment delays, and in extreme cases, death. The goal of this study was to compare current practices to the treatment and supportive care details described in the protocol to identify the incidence and impact of guideline-discordant care to deliver HDMTX more safely children with cancer in Sri Lanka. Methods: We reviewed medical records to assess guideline concordance in 4 critical aspects of HDMTX delivery: 2 consecutive alkaline urine pH readings in the 2-hour period before starting HDMTX, 24-hour duration of MTX infusion (as opposed to early stop), the first dose of folinic acid administered later than 36 hours from start of HDMTX infusion (no inappropriately early rescue), and the administration of at least 3 folinic acid doses per course (appropriate duration of rescue). We analyzed how each deviation influenced AKI (creatinine increase of 0.3 mg/dL or more), infection, and treatment delays (defined as recovery delayed 7 days or longer from the 14 days expected between courses of HDMTX). Results: We analyzed 309 HDMTX courses in 91 patients younger than 20 years, including 105 girls (34%). In 83 courses (27%) alkaline urine was not documented prior to the start of MTX. Infusion time was less than 24 hours in 239 courses (77%), most of which finished 20-21 hours. In 37 courses (12%), the first folinic acid dose was given inappropriately early, and in 25 courses (8%) less than 3 doses of folinic acid were given. There were 2 episodes of AKI, 43 infections, 11 treatment delays and one death. None of the 4 guideline deviations were significantly associated with AKI or treatment delays. Patient sex was also not associated with any difference in guideline discordance or outcome (p>0.1 in all cases). Conclusions: Significant deviations from HDMTX administration guidelines were common, especially early completion of infusion. However, outcomes were not impacted so quality standards may require adjustment to focus only on extreme deviations likely to impact patient outcomes.

Context In many low- and middle-income countries (LMICs), there are barriers to delivery of chemotherapy based on international protocols. For higher-risk Acute Lymphoblastic Leukemia (ALL) in children and adolescents, most protocols mandate four courses of high-dose methotrexate (HDMTX) at 5 g/m2. However, because of the risk of toxicity, many patients in LMICs receive lower doses. Design We retrospectively reviewed management and outcomes of patients treated for ALL using HDMTX (2 or 5 g/m2) as a 24-hour infusion to determine whether the higher dose had unacceptable toxicity. Setting At the National Cancer Institute Sri Lanka, delivery of HDMTX is challenging due to shortage of nurses, large numbers of patients, crowded conditions, and inability to measure methotrexate levels. Our team disagrees about the optimal dose of HDMTX, with some physicians using 2 and others 5 g/m2. Patients Ninety-three consecutive patients with ALL treated on protocols containing HDMTX. Intervention Two doses of HDMTX were used, based on clinician preference. Each clinician used a uniform strategy for all her/his patients; toxicity risk was not used to determine the dose. Main outcome measures We compared methotrexate toxicities, including acute kidney injury, mucositis, infections, hemorrhage, hospital length-of-stay and delay of subsequent treatment cycles. Patient outcomes were also assessed, but with the short follow-up time, no difference in survival would be expected unless toxicities were extreme. Results Toxicities were uncommon in all patients (age 3 months to 19 years) who received 330 courses of HDMTX (103 courses of 2 g/m2 and 227 courses of 5 g/m2). There was one death in the 5 g/m2 arm due to severe mucositis. Mucositis in 5 g/m2 was 6/227 (2.6%) and in 2 g/m2 was 1/103 (0.97%) (p=0.34). Two courses were complicated by acute kidney injury (1 in each group, p=1.0), and infections occurred in 32/227 (14.1%) higherdose courses versus 8/103 (7.7%) lower-dose courses (p=0.1). Length of stay was 4.8 days in both groups (p=0.88). Conclusions HDMTX up to 5 g/m2 can be safely delivered, even in a limited-resource setting and no access to methotrexate levels. One death with severe mucositis suggests that monitoring methotrexate levels could improve safety even more.

e14008 Background: Primary central nervous system lymphoma (PCNSL) can often be cured, especially in younger patients, but requires intense chemotherapy with high-dose methotrexate (HDMTX) and rituximab to optimize outcomes. Toxicities can lead to dose reduction or omission that may increase relapse risk, or lead clinicians to select less effective regimens that do not contain HDMTX. Methods: Anonymized, de-identified data of patients from 110 community oncology practices of the Guardian Research Network (GRN, www.GuardianResearch.org ) was analyzed to determine treatments, toxicities, and outcomes of adults with PCNSL. All data from the medical record is available from GRN (diagnoses, demographics, labs, medicines, toxicities, radiology, pathology, procedures, and encounters), so each patient’s journey can be fully characterized. Results: Of 533805 adults with cancer, 49 were treated for PCNSL with HDMTX-containing regimens (n = 35), other chemotherapy regimens (n = 3), or radiation therapy (RT) alone (n = 11). HDMTX patients received HDMTX only in 8 cases, HDMTX plus rituximab in 23 cases, addition of RT in 11 cases, and HDMTX with other chemotherapy but no rituximab in 3 cases. Survival at 5 years was 53% (standard error [SE] 8.6%) for patients treated with HDMTX versus 33% (SE 13%) for those treated with other therapies. Of those treated with HDMTX, survival was 0% for patients who experienced early toxicity that required cessation of HDMTX prior to receiving 3 doses and having response evaluated versus 62% (SE 9.1%) for patients who received 3 or more courses of HDMTX (p < 0.001). In a multivariable Cox proportional hazards model including completion of at least 3 doses of HDMTX, age, race, and sex, only lack of HDMTX toxicity was associated with survival (hazard ratio 0.22, 95% confidence interval 0.07 to 0.70, p = 0.01). Conclusions: Use of HDMTX and prevention of toxicity improves outcomes for PCNSL patients treated in the community.

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain ‘hidden carers’. We aimed to explore how carers of people with common long‐term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term ‘carer’ or access for support. We conducted semi‐structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared‐for person. The data were interpreted in terms of types of ‘work’ undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring ‘work’. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self‐management of LTCs in the community must be complemented by recognition of this group as potentially ‘hidden carers’, who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

Phenomenon: Transgender patients experience discrimination, limited access to care, and inadequate provider knowledge in healthcare settings. Medical education to address transgender-specific disparities is lacking. Research that engages transgender community members may help address health disparities by empowering patients, increasing trust, and informing medical curricula to increase competence.A 2015 Community Forum on Transgender Health Care was hosted at the University of Louisville School of Medicine, which included healthcare professionals and transgender community members to facilitate dialogue among mixed-participant groups using a World Café model. Fifty-nine participants discussed the status of transgender healthcare and made recommendations for local improvements. A follow-up survey was administered to 100 individuals, including forum participants and their referrals. The forum discussion and survey responses were analyzed to determine common perceptions of transgender healthcare, priorities for improvement interventions, and themes to inform curriculum.The community forum discussion showed that local transgender care is overwhelmingly underdeveloped and unresponsive to the needs of the transgender community. The follow-up survey revealed that priorities to improve transgender care included a multidisciplinary clinic for lesbian, gay, bisexual, and transgender (LGBT) patients, an LGBT-friendly network of physicians, and more training for providers and support staff. This mutually constructive engagement experience influenced reform in undergraduate curricula and continuing education opportunities. Insights: Community engagement in healthcare disparities research can cultivate improbable discussions, yield innovative insight from marginalized populations, and build relationships with community members for future collaborations and interventions. Societal acceptance of transgender identities, which could be promoted through healthcare providers, could stimulate significant progress in transgender healthcare. Supplemental educational interventions for practicing physicians will improve the current conditions of transgender healthcare, but a comprehensive medical school curriculum specifically for transgender health that includes interactions between the transgender community and medical students could be particularly impactful.

Background: Individuals who are lesbian, gay, bisexual, transgender (LGBT), gender nonconforming, and/or born with differences of sex development have specific health needs and significant health disparities exacerbated by a lack of training among health professionals. The University of Louisville LGBT Health Certificate Program used an interdisciplinary approach to increase training, potentially enabling future physicians to provide quality healthcare to LGBT patients. Methods: A pretest-post-test design was used to investigate medical students' (n = 39) attitude and knowledge outcomes after program participation. Attitudinal items with Likert-type responses were analyzed using the Wilcoxon signed-rank test. Baseline frequency and percentage of correct responses were tabulated for knowledge questions. At both pre- and post-test, the 11 knowledge items were summed to establish a total knowledge score, creating two total scores. The paired sample t-test was used to evaluate the pre- and post-change, and Cohen's D was used to assess effect size. All P values were two-tailed. Statistical significance was set by convention at P < 0.05. Results: Students correctly answered 69% or less of the knowledge questions at baseline. Total correct knowledge scores significantly increased post intervention with the effect size being large (Cohen's D = 0.90, P < 0.001). Attitudes significantly increased post intervention on two items (P = 0.019 and P = 0.037). Some attitude items decreased post intervention: students felt it is more challenging to conduct a patient history with a LGB patient (pre-mean agreement = 2.44; post-mean agreement = 2.97, P = 0.018). Conclusions: Medical educators can play a critical role in decreasing LGBT healthcare disparities. The University of Louisville LGBT Health Certificate Program played an important first step in increasing medical students' knowledge and improving certain attitudes about LGBT patients.

Little research has explored the views of patients referred to specialist genetic eye clinics. Future service development must be informed by the perspectives of patients to ensure services are accessible and meet their needs. Semi-structured telephone interviews were undertaken with patients referred to the Genetic Eye Clinic in Manchester, UK. Participants were interviewed before their first appointment. The interview transcripts were analysed using Interpretative Phenomenological Analysis (IPA). Nine interviews took place. Five participants were adults with sight loss and 4 were the parent/carer of a child patient. The major themes identified were: expectations of a medical-genetic focus to the clinic, psychological adjustment to the diagnosis of an eye condition impacting on counselling and support needs, lack of preparation and restricted expectations due to unfamiliarity with the service and positive attitudes towards genetic research and testing. Key motivating factors for patients attending specialist ophthalmic genetic services are medical-genetic orientated, including accurate diagnostic and prognostic information, participation in research and clarification of recurrence risks. Some barriers to patients accessing and fully engaging with services were identified. There is a need to raise awareness of the specialist service amongst the public, patient organisations and professionals. Facilitating patient preparation for clinic could improve patient outcomes, and the need for integrated services is reinforced. The results feed into the development of a best practice model for the delivery of specialist ophthalmic genetic services.

Background Technological advances present an opportunity for more people with, or at risk of, developing retinitis pigmentosa (RP) to be offered genetic testing. Valuation of these tests using current evaluative frameworks is problematic since benefits may be derived from diagnostic information rather than improvements in health. This pilot study aimed to explore if contingent valuation method (CVM) can be used to value the benefits of genetic testing for RP. Methods CVM was used to elicit willingness-to-pay (WTP) values for (1) genetic counselling and (2) genetic counselling with genetic testing. Telephone and face-to-face interviews with a purposive sample of individuals with (n=25), and without (n=27), prior experience of RP were used to explore the feasibility and validity of CVM in this context. Results Faced with a hypothetical scenario, the majority of participants stated that they would seek genetic counselling and testing in the context of RP. Between participant groups, respondents offered similar justifications for stated WTP values. Overall stated WTP was higher for genetic counselling plus testing (median=£524.00) compared with counselling alone (median=£224.50). Between-group differences in stated WTP were statistically significant; participants with prior knowledge of the condition were willing to pay more for genetic ophthalmology services. Conclusions Participants were able to attach a monetary value to the perceived potential benefit that genetic testing offered regardless of prior experience of the condition. This exploratory work represents an important step towards evaluating these services using formal cost–benefit analysis.

Background UK genetic ophthalmology services for patients with retinal dystrophy (RD) are variable. Little research exists to define service requirements, or expectations, of patients and their families. This study aimed to explore the views and perceived benefits of genetic ophthalmology services among members of families with RD. Methods Twenty participants with known RD mutations were recruited through UK genetic ophthalmic clinics. Semistructured qualitative interviews explored interviewees’ perceptions of the role of these services. Interviews were transcribed verbatim and analysed using inductive thematic analysis. Results Interviewees’ expectations and requirements of genetic ophthalmology services were wide-ranging and often perceived to be unmet. Participant expectations were classified in three groups: (1) Medical expectations included obtaining a diagnosis and information about disease/prognosis, genetic risks and research (2) Psychosocial expectations related to participants’ need for support in adjusting to RD (3) Practical expectations included the desire for information about welfare and support. Conclusions Expectations of RD families for clinical services are complex, encompassing a range of healthcare specialties. Services that align to these expectations will need to reach beyond the diagnostic arena and provide practical and psychosocial support. The identification of measurable outcomes will facilitate future development and evaluation of service delivery models. Many of the expectations identified here map to an existing, previously validated, outcomes framework for clinical genetic services. However, an additional outcome domain, labelled ‘Independence’ was also identified; this could either be specific to vision loss or relate generally to disability caused by genetic conditions.

Residents’ experiences provide rich insight into the factors that drive widening social and health disparities, and those experiences are not homogeneous. Only through attending to people’s lived experiences will society begin to see these as issues of the entire community, and only by engaging residents in the process of community change can the kinds of change that are needed ever be achieved. Photovoice is a participatory qualitative research method that gives voice to participants’ experiences and perspectives while simultaneously facilitating critical consciousness-raising for social action and social change. This study employed a Photovoice process to explore experiences and perspectives of residents and people working in organizations that serve West Louisville, and to facilitate dialogue and action leading to social change. Forty-three individuals across eight groups completed the Photovoice project, representing youth, older adults, LGBTQ people, faith leaders, educators, activists, and two groups of Black men. Analysis of photos and group dialogue within and across the eight groups identified several common themes that pointed at the historical and present structural racism in the community, the city’s lack of concern for the Black community, the importance of Black history, and the need for collective community action. The public Photovoice exhibit helped inform the subsequent agenda for the city’s Center for Health Equity.

Political representation in the UK continues to be dominated by white, middle-aged, middle-class men, but several equalities groups now have an established presence in national political institutions. This article draws on research with stakeholder organisations, lobby groups for under-represented groups within political parties, former, current and unsuccessful candidates and sitting and former elected politicians conducted prior to the 2010 General Election. It finds that where aspiring candidates from under-represented groups have been selected, it was because they were 'acceptably different' conforming to aspects of the 'archetypal candidate'. We argue that increasingly dominant professionalised 'pathways' into national politics have allowed greater diversity, but remain narrow and exclusionary. Progress is less a reflection of a more open political system, instead representing accommodation of still under-represented groups to, and by, the existing system. Copyright © The Author [2012].

When examining the medical and social position of gender variant people, it is important to consider the divergent understandings of sex, gender, gender identity, and, to some extent, sexuality, and the ways in which these beliefs influence health practice. Doctors and policy makers rely upon evolving, ambiguous notions of gender to make decisions about who to treat when approached by gender variant people. This chapter discusses how gender variant experiences, such as those of trans and intersex people, are conceptualized differently in social science and medical literature.1 In addition, it explores how social, biological, medical, and discursive constructions of gender affect treatment. I do not attempt to give definitive definitions of sex, gender, gender identity, or gender dysphoria; instead, I highlight the etiological and definitional ambiguity found in the literature and the problems posed by this inconsistency.2