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OBJECTIVE: Financial strain and unmet social needs are associated with greater risk for lower urinary tract symptoms. Little research has examined financial strain and unmet social needs in relation to the more holistic concept of bladder health. This study utilizes baseline data from RISE FOR HEALTH: A U.S. Study of Bladder Health to examine whether financial strain, unmet social needs, and meeting specific federal poverty level threshold levels are associated with lower urinary tract symptoms and poorer perceived bladder health, well-being, and function. STUDY DESIGN: Participants were 18 years or older, born female or currently identified as a woman, and from the civilian, noninstitutionalized population residing in 50 counties in the United States that included or surrounded nine recruitment centers. Data were collected through mailed or internet-based surveys. To address research questions, the 10-item Lower Urinary Tract Dysfunction Research Network Symptom Index and selected Prevention of Lower Urinary Tract Symptoms Research Consortium bladder health scores were separately regressed on each financial strain, unmet social need, and federal poverty level variable, using linear regression adjusting for covariates (age, race/ethnicity, education, and vaginal parity) and robust variance estimation for confidence intervals. Participants with no missing data for a given analysis were included (range of n=2,564 to 3,170). In separate sensitivity analyses, body mass index, hypertension, and diabetes were added as covariates and missing data were imputed. RESULTS: The mean age of participants was 51.5 years (standard deviation=18.4). Not having enough money to make ends meet, housing insecurity, food insecurity, unreliable transportation, and percent federal poverty levels of 300% or less were consistently associated with more reported lower urinary tract symptoms and poorer perceived bladder health. For example, compared to food secure participants, women who worried that their food would run out at the end of the month had a Lower Urinary Tract Dysfunction Research Network - Symptom Index score that was 3.4 points higher (95% CI: 2.5, 4.3), on average. They also had lower mean scores across different bladder health measures, each assessed using a 100-point scale: global bladder health (-8.2, 95% CI: -10.8,-5.7), frequency (-10.2, 95% CI: -13.8,-6.7), sensation (-11.6, 95% CI: -15.1,-8.2), continence (-13.3, 95% CI: -16.7,-9.9), and emotional impact of bladder health status (-13.2, 95% CI: -16.5,-9.9). Across analyses, associations largely remained significant after additional adjustment for body mass index, hypertension, and diabetes. The pattern of results when imputing missing data was similar to that observed with complete case analysis; all significant associations remained significant with imputation. CONCLUSION: Financial strain and unmet social needs are associated with worse LUTS and poorer bladder health. Longitudinal research is needed to examine whether financial strain and unmet social needs influence the development, maintenance, and worsening of lower urinary tract symptoms; different mechanisms by which financial strain and unmet social needs may impact symptoms; and the degree to which symptoms contribute to financial strain. If supported by etiologic research, prevention research can be implemented to determine whether the amelioration of financial strain and social needs, including enhanced access to preventative care, may promote bladder health across the life course.
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INTRODUCTION AND HYPOTHESIS: Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters. METHODS: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. RESULTS: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. CONCLUSIONS: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
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Dor Crônica , Cistite Intersticial , Humanos , Feminino , Cistite Intersticial/tratamento farmacológico , Ansiedade , Grupos Focais , Pesquisa QualitativaRESUMO
INTRODUCTION: Community engagement is increasingly recognized as a critical component of research, but few studies provide details on how to successfully incorporate community perspectives in urological research. This manuscript describes the community engagement strategy used by the Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS) to design RISE FOR HEALTH (RISE), a multicenter, population-based, prospective cohort study to promote bladder health. METHODS AND RESULTS: The PLUS Community Engagement Subcommittee, guided by a set of antiracist community engagement principles and practices, organized, implemented, and communicated findings for all RISE community engagement activities. Community engagement was conducted through a diverse network of community partners at PLUS clinical research centers called Rapid Assessment Partners (RAPs). Via online surveys (4), virtual discussion groups (14), and one-on-one interviews (12), RAPs provided input on RISE processes and materials, including in-person visit procedures, specimen collection instructions, survey data collection instruments, recruitment materials, the study website, and the study name. This process resulted in significant changes to these aspects of the study design with reciprocal benefits for the community partners. DISCUSSION: Meaningful community engagement improved the design and implementation of RISE. PLUS will continue to engage community partners to interpret the RISE study results, disseminate RISE findings, and inform other PLUS studies toward the development of interventions to promote bladder health. Future urological studies would also benefit from community participation in determining priority research questions to address.
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Participação da Comunidade , Bexiga Urinária , Humanos , Estudos Prospectivos , Participação dos Interessados , Projetos de PesquisaRESUMO
BACKGROUND: In 2019-2020, with National Cancer Institute funding, seven implementation laboratory (I-Lab) partnerships between scientists and stakeholders in 'real-world' settings working to implement evidence-based interventions were developed within the Implementation Science Centers in Cancer Control (ISC3) consortium. This paper describes and compares approaches to the initial development of seven I-Labs in order to gain an understanding of the development of research partnerships representing various implementation science designs. METHODS: In April-June 2021, members of the ISC3 Implementation Laboratories workgroup interviewed research teams involved in I-Lab development in each center. This cross-sectional study used semi-structured interviews and case-study-based methods to collect and analyze data about I-Lab designs and activities. Interview notes were analyzed to identify a set of comparable domains across sites. These domains served as the framework for seven case descriptions summarizing design decisions and partnership elements across sites. RESULTS: Domains identified from interviews as comparable across sites included engagement of community and clinical I-Lab members in research activities, data sources, engagement methods, dissemination strategies, and health equity. The I-Labs use a variety of research partnership designs to support engagement including participatory research, community-engaged research, and learning health systems of embedded research. Regarding data, I-Labs in which members use common electronic health records (EHRs) leverage these both as a data source and a digital implementation strategy. I-Labs without a shared EHR among partners also leverage other sources for research or surveillance, most commonly qualitative data, surveys, and public health data systems. All seven I-Labs use advisory boards or partnership meetings to engage with members; six use stakeholder interviews and regular communications. Most (70%) tools or methods used to engage I-Lab members such as advisory groups, coalitions, or regular communications, were pre-existing. Think tanks, which two I-Labs developed, represented novel engagement approaches. To disseminate research results, all centers developed web-based products, and most (n = 6) use publications, learning collaboratives, and community forums. Important variations emerged in approaches to health equity, ranging from partnering with members serving historically marginalized populations to the development of novel methods. CONCLUSIONS: The development of the ISC3 implementation laboratories, which represented a variety of research partnership designs, offers the opportunity to advance understanding of how researchers developed and built partnerships to effectively engage stakeholders throughout the cancer control research lifecycle. In future years, we will be able to share lessons learned for the development and sustainment of implementation laboratories.
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Laboratórios , Neoplasias , Humanos , Estudos Transversais , Atenção à Saúde , ComunicaçãoRESUMO
BACKGROUND: This study aimed to capture the implementation process of the ALIGN Study, (An individualized Pain Plan with Patient and Provider Access for Emergency Department care of Sickle Cell Disease). ALIGN aimed to embed Individualized Pain Plans in the electronic health record (E-IPP) and provide access to the plan for both adult patients with sickle cell disease (SCD) and emergency department providers when a person with SCD comes to the emergency department in vaso-occlusive crises. METHODS: Semi-structured interviews were conducted with research teams from the 8 participating sites from the ALIGN study. Seventeen participants (principal investigators and study coordinators) shared their perspectives about the implementation of ALIGN in their sites. Data were analyzed in three phases using open coding steps adapted from grounded theory and qualitative content analysis. RESULTS: A total of seven overarching themes were identified: (1) the E-IPP structure (location and upkeep) and collaboration with the informatics team, (2) the role of ED champion, (3) the role of research coordinators, (4) research team communication, and communication between research team and clinical team, (5) challenges with the study protocol, (6) provider feedback: addressing over-utilizers, patient mistrust, and the positive feedback about the intervention, and (7) COVID-19 and its effects on study implementation. CONCLUSIONS: Findings from this study contribute to learning how to implement E-IPPs for adult patients with SCD in ED. The study findings highlight the importance of early engagement with different team members, a champion from the emergency department, study coordinators with different skills and enhancement of communication and trust among team members. Further recommendations are outlined for hospitals aiming to implement E-IPP for patients with SCD in ED.
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Anemia Falciforme , Manejo da Dor , Humanos , Adulto , Manejo da Dor/métodos , Registros Eletrônicos de Saúde , Dor/tratamento farmacológico , Anemia Falciforme/complicações , Anemia Falciforme/terapia , Serviço Hospitalar de EmergênciaRESUMO
BACKGROUND: Given the modest functional outcomes seen after surgical reconstruction and subsequent therapy, increasing attention is being directed to patient satisfaction and psychological aspects of recovery after brachial plexus injury (BPI). PURPOSE: To better understand the recovery course after surgical reconstruction for BPI, we used qualitative interviews and focused on common points of frustration for patients. STUDY DESIGN: Qualitative, interpretive description study METHODS: We conducted semi-structured interviews with BPI patients who were 6+ months post-surgical reconstruction. The interview focused on the patients' experience with BPI, focusing on emotional aspects of recovery. Interviews were transcribed and independently coded by 2 researchers. We used inductive and deductive analysis to organize codes into themes. Once thematic saturation was reached, no additional interviews were conducted. RESULTS: We interviewed 15 BPI patients at median 13 months after surgery (range: 6-43 months). Our analysis revealed: (1) BPI patients expressed variable degrees of participation during recovery, with the indeterminate state of function making it difficult to adjust to life after BPI. (2) The uncertainty while waiting for improved function is frustrating to BPI patients, with many patients expressing concern for activities and moments they are missing due to injury. (3) While many BPI patients feel left out of decision-making, those who felt engaged in the process expressed less frustration and more acceptance of their status. CONCLUSION: Traumatic BPI patients those who felt engaged in decision-making were more receptive to adjustment to their new state of function. When coordinating multidisciplinary care, measures to encourage patients to feel agency over their outcome and to develop self-management skills have the potential to improve patient satisfaction.
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Neuropatias do Plexo Braquial , Plexo Braquial , Humanos , Participação do Paciente , Plexo Braquial/cirurgia , Plexo Braquial/lesões , Emoções , Satisfação do Paciente , Neuropatias do Plexo Braquial/cirurgiaRESUMO
BACKGROUND: Tobacco cessation after a cancer diagnosis can extend patient survival by improving outcomes for primary cancer and preventing secondary cancers. However, smoking is often unaddressed in cancer care, highlighting the need for strategies to increase treatment reach and cessation. This study examined a low-burden, point-of-care tobacco treatment program (ELEVATE) featuring an electronic health record-enabled smoking module and decision support tools to increase the reach and effectiveness of evidence-based smoking cessation treatment. METHODS: This study included adult outpatient tobacco smokers (n=13,651) in medical oncology, internal medicine, and surgical oncology clinics from a large midwestern healthcare system. We examined reach and effectiveness of ELEVATE with 2 comparisons: (1) preimplementation versus postimplementation of ELEVATE and (2) ELEVATE versus usual care. Data were evaluated during 2 time periods: preimplementation (January through May 2018) and postimplementation (June through December 2018), with smoking cessation assessed at the last follow-up outpatient encounter during the 6 months after these periods. RESULTS: The proportion of current tobacco smokers receiving cessation treatment increased from pre-ELEVATE to post-ELEVATE (1.6%-27.9%; difference, 26.3%; relative risk, 16.9 [95% CI, 9.8-29.2]; P<.001). Compared with 27.9% treatment reach with ELEVATE in the postimplementation time period, reach within usual care clinics ranged from 11.8% to 12.0% during this same period. The proportion of tobacco smokers who subsequently achieved cessation increased significantly from pre-ELEVATE to post-ELEVATE (12.0% vs 17.2%; difference, 5.2%; relative risk, 1.3 [95% CI, 1.1-1.5]; P=.002). Compared with 17.2% smoking cessation with ELEVATE in the postimplementation time period, achievement of cessation within usual care clinics ranged from 8.2% to 9.9% during this same period. CONCLUSIONS: A low-burden, point-of-care tobacco treatment strategy increased tobacco treatment and cessation, thereby improving access to and the impact of evidence-based cessation treatment. Using implementation strategies to embed tobacco treatment in every healthcare encounter promises to engage more smokers in evidence-based treatment and facilitate smoking cessation, thereby improving care cancer for patients who smoke.
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Neoplasias , Abandono do Hábito de Fumar , Adulto , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Sistemas Automatizados de Assistência Junto ao Leito , Nicotiana , Uso de TabacoRESUMO
AIMS: This analysis explored and characterized the ideas adult women have about how the bladder works, the assumptions guiding their bladder-related behaviors, and the beliefs they hold about how their behaviors affect bladder health. METHODS: This was a directed content analysis of qualitative data from the Study of Habits, Attitudes, Realities, and Experiences, a focus group study conducted at seven United States research centers (July 2017 to April 2018). Participants were 316 adult women organized by four age categories (age range: 18-93 years). Analysis and interpretation focused on the "bladder assumptions and beliefs" code using a transdisciplinary lens and inductive approach. RESULTS: During their focus group discourse, participants exhibited a speculative mode of thinking about bladder health and function characterized by uncertainty about how the bladder works. They described the bladder as a mechanism for cleansing the body of impurities, viewing it as part of a larger interconnected bodily system to enable the body to stay healthy. They saw it as susceptible to anatomical changes, such as those related to pregnancy and aging. The women also postulated perceived relationships between bladder function and several health behaviors, including eating healthy foods, staying hydrated, engaging in physical activity and exercise, and adopting specific toileting and hygiene practices. CONCLUSIONS: The findings underscore the importance of guidance from healthcare professionals and systematic community based educational programs for promoting women's understanding about bladder health and empowering them to exert agency to engage in healthy bladder behaviors.
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Comportamentos Relacionados com a Saúde , Bexiga Urinária , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Hábitos , Pessoal de Saúde , Humanos , Pessoa de Meia-Idade , Gravidez , Pesquisa Qualitativa , Saúde da Mulher , Adulto JovemRESUMO
INTRODUCTION: There has been a sparse exploration of the lived experience of men with urologic chronic pelvic pain syndrome (UCPPS), and none with the goal of Investigating the experience of "flares" as part of this chronic pain syndrome in men. METHODS: We conducted three focus groups of male UCPPS patients at two sites of the MAPP Research Network (n = 16 total participants) to explore the full spectrum of flares and their impact on men's lives. RESULTS: Flare experiences were common and specific symptom components varied widely. Men reported nonpelvic symptoms (e.g., diarrhea), and variability in symptom intensity (mild to severe), duration (minutes to days), and frequency of flares. Flares episodes, and the threat of flares, were disruptive to their lives, social roles, and relationships. Distinct long-term impacts were reported, such as decreased sexual activity, decreased travel, and potential loss of employment or career. The themes included social isolation and the need for a sense of control and understanding over their unpredictable symptoms. CONCLUSIONS: Given their negative impact, future research with men and UCPPS should focus on approaches to prevent flares, and should consider a multimodal approach to reducing the frequency, severity, and/or duration. Quality of life may be improved by providing men with a sense of control over their symptoms and offering them multimodal treatment options, consistent with the recommendations for further research for women with UCPPS.
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Dor Crônica , Dor Pélvica , Doenças Urológicas , Dor Crônica/complicações , Humanos , Masculino , Dor Pélvica/complicações , Pesquisa Qualitativa , Qualidade de Vida , Síndrome , Doenças Urológicas/complicaçõesRESUMO
BACKGROUND: Sickle cell disease (SCD), an inherited red blood cell disorder, primarily affects African Americans in the United States. Adolescents and young adults with SCD (AYA-SCD) are at risk of high morbidity and mortality when transitioning from pediatric to adult care. The goal of this qualitative study was to understand factors associated with optimal implementation of the AYA-SCD transition. METHODS: Participants were recruited from a large hospital system and the community. Interview guides included topics on access to primary and specialized care, beliefs and practices related to pain control, transition from pediatric to adult care, and patient experiences in the emergency department. Data were coded and analyzed using an inductive thematic coding approach in combination with a deductive coding approach using domains from the Consolidated Framework for Implementation Research (CFIR). RESULTS: Fifty-nine participants, including 21 AYA-SCD from both the pediatric and adult clinics, 17 caregivers, 9 pediatric SCD providers, 6 adult SCD providers, and 6 emergency department providers, completed 11 focus groups and 5 semistructured interviews. Results identified multiple factors within the domains of CFIR including the outer setting, inner setting, individual characteristics, and intervention characteristics. Results were incorporated into a transition framework to inform local practice improvement. CONCLUSION: Our study highlights the importance of multilevel barriers and facilitators for AYA-SCD transition from pediatric to adult care. Future studies could use implementation science frameworks to understand local context and identify strategies and intervention characteristics to improve transition programming. These efforts will ultimately reduce health disparities and ensure health equity.
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Anemia Falciforme , Transição para Assistência do Adulto , Adolescente , Anemia Falciforme/epidemiologia , Anemia Falciforme/terapia , Criança , Grupos Focais , Humanos , Manejo da Dor , Pesquisa Qualitativa , Estados Unidos/epidemiologia , Adulto JovemRESUMO
Gestational diabetes mellitus (GDM) increases type 2 diabetes risk; however, postpartum diabetes screening rates are low. Using semi-structured interviews and focus groups, this study investigates the understanding of GDM and its relationship to future diabetes risk and diabetes prevention among patients with public or no insurance (n = 36), health care providers (n = 21), and clinic staff (n = 9) from Federally Qualified Health Centers. Five main themes emerged: 1) general understanding of GDM diagnosis with focus on neonatal complications; 2) variable recall of diet, exercise, and weight recommendations; 3) overwhelming medication and self-monitoring routines; 4) short-term focus of type 2 diabetes risk and screening; and 5) limited understanding of all options for diabetes prevention. The results may inform diabetes screening and prevention interventions in primary care settings.
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INTRODUCTION: Few studies have examined the effects of racial segregation on colorectal cancer (CRC) outcomes, and none has determined whether rurality moderates the effect of racial segregation on CRC mortality. We examined whether the effect of segregation on CRC mortality varied by rurality in the Mississippi Delta Region, an economically distressed and historically segregated region of the United States. METHODS: We used data from the US Census Bureau and the 1999-2018 Surveillance, Epidemiology, and End Results (SEER) program to estimate mixed linear regression models in which CRC mortality rates among Black and White residents in Delta Region counties (N = 252) were stratified by rurality and regressed on White-Black residential segregation indices and 4 socioeconomic control variables. RESULTS: Among Black residents, CRC mortality rates in urban counties were a function of a squared segregation term (b = 162.78, P = .01), indicating that the relationship between segregation and CRC mortality was U-shaped. Among White residents, main effects of annual household income (b = 29.01, P = .04) and educational attainment (b = 34.58, P = .03) were associated with CRC mortality rates in urban counties, whereas only annual household income (b = 19.44, P = .04) was associated with CRC mortality rates in rural counties. Racial segregation was not associated with CRC mortality rates among White residents. CONCLUSION: Our county-level analysis suggests that health outcomes related to racial segregation vary by racial, contextual, and community factors. Segregated rural Black communities may feature stronger social bonds among residents than urban communities, thus increasing interpersonal support for cancer prevention and control. Future research should explore the effect of individual-level factors on colorectal cancer mortality.
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Neoplasias Colorretais , Segregação Social , Negro ou Afro-Americano , Humanos , Grupos Raciais , Características de Residência , Estados Unidos/epidemiologia , População Urbana , População BrancaRESUMO
Little is known about social processes shaping adolescent and adult women's toileting behaviors. The "Study of Habits, Attitudes, Realities, and Experiences" (SHARE) examines adolescent and adult women's experiences related to bladder health across the life course. Forty-four focus groups with 360 participants organized by six age groups were conducted across seven sites. A transdisciplinary team used social cognitive theory as an interpretive lens across a five-stage analysis. The act of observing was identified as the overarching social process informing women's toileting behaviors in three ways: (a) observing others' toileting behavior, (b) being aware that one's own toileting behaviors are monitored by others, and (c) observing oneself relative to others. We found that underlying processes of toileting behaviors, seemingly private are, in fact, highly social. We suggest, given this social embeddedness that health promotion efforts should leverage interpersonal networks for "social norming" interventions and policies to promote healthy toileting behaviors.
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Comportamentos Relacionados com a Saúde , Autocuidado , Adolescente , Adulto , Feminino , Grupos Focais , Promoção da Saúde , Humanos , Teoria PsicológicaRESUMO
Health researchers are increasingly turning to qualitative research for a nuanced understanding of complex health phenomena. The quality and rigor of qualitative research relies on individual data collector skills, yet few guidelines exist for training multidisciplinary, multi-institution qualitative research teams. Specific guidance is needed on qualitative research practices that ensure scientific rigor by optimizing diverse experience and expertise across research centers. We describe our systematic approach to training a cohort of 15 focus group moderators from seven universities in the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium's Study of Habits, Attitudes, Realities, and Experiences (SHARE). SHARE's aim was to explore women and girls' experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. Drawing on adult education and action-learning best practices, a three-phase curriculum was designed to maximize moderator proficiency and qualitative research expertise. The phases involved online, interactive web-based education, in-person didactic training with experiential components, and tailored supplemental online training. Evaluative feedback was collected before, during, and after the training. Feedback was used to identify emergent training needs. This training approach may be used by transdisciplinary research teams conducting multisite research to assure qualitative research credibility and trustworthiness.
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Currículo , Pesquisa Interdisciplinar , Adulto , Feminino , Grupos Focais , Humanos , Pesquisa Qualitativa , UniversidadesRESUMO
BACKGROUND: Many cancer survivors struggle to choose a health insurance plan that meets their needs because of high costs, limited health insurance literacy, and lack of decision support. We developed a web-based decision aid, Improving Cancer Patients' Insurance Choices (I Can PIC), and evaluated it in a randomized trial. MATERIALS AND METHODS: Eligible individuals (18-64 years, diagnosed with cancer for ≤5 years, English-speaking, not Medicaid or Medicare eligible) were randomized to I Can PIC or an attention control health insurance worksheet. Primary outcomes included health insurance knowledge, decisional conflict, and decision self-efficacy after completing I Can PIC or the control. Secondary outcomes included knowledge, decisional conflict, decision self-efficacy, health insurance literacy, financial toxicity, and delayed care at a 3-6-month follow-up. RESULTS: A total of 263 of 335 eligible participants (79%) consented and were randomized; 206 (73%) completed the initial survey (106 in I Can PIC; 100 in the control), and 180 (87%) completed a 3-6 month follow-up. After viewing I Can PIC or the control, health insurance knowledge and a health insurance literacy item assessing confidence understanding health insurance were higher in the I Can PIC group. At follow-up, the I Can PIC group retained higher knowledge than the control; confidence understanding health insurance was not reassessed. There were no significant differences between groups in other outcomes. Results did not change when controlling for health literacy and employment. Both groups reported having limited health insurance options. CONCLUSION: I Can PIC can improve cancer survivors' health insurance knowledge and confidence using health insurance. System-level interventions are needed to lower financial toxicity and help patients manage care costs. IMPLICATIONS FOR PRACTICE: Inadequate health insurance compromises cancer treatment and impacts overall and cancer-specific mortality. Uninsured or underinsured survivors report fewer recommended cancer screenings and may delay or avoid needed follow-up cancer care because of costs. Even those with adequate insurance report difficulty managing care costs. Health insurance decision support and resources to help manage care costs are thus paramount to cancer survivors' health and care management. We developed a web-based decision aid, Improving Cancer Patients' Insurance Choices (I Can PIC), and evaluated it in a randomized trial. I Can PIC provides health insurance information, supports patients through managing care costs, offers a list of financial and emotional support resources, and provides a personalized cost estimate of annual health care expenses across plan types.
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Letramento em Saúde , Neoplasias , Idoso , Técnicas de Apoio para a Decisão , Humanos , Seguro Saúde , Pessoas sem Cobertura de Seguro de Saúde , Medicare , Neoplasias/terapia , Estados UnidosRESUMO
AIMS: Prior research on lower urinary tract symptoms (LUTS) has focused on the treatment and management of these conditions with scant attention to prevention. The Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium was formed to address the complexities of preventing LUTS and promoting bladder health. METHODS: Herein, we describe challenges faced and strategies used to develop the PLUS Research Consortium into an engaged and productive transdisciplinary scientific team. We apply four previously defined team science phases (development, conceptualization, implementation, and translation) to frame our progress. RESULTS: Strategies to progress through the development phase included the generation of a shared mission, and valuing of other disciplinary perspectives. The conceptualization phase included generating a shared language and developing a team transdisciplinary orientation. During the implementation phase, the group developed roles and procedures and focused on conflict management. The translation phase includes continued refinement of the mission and goals, implementation of research protocols, and robust dissemination of the scientific work products related to bladder health. CONCLUSION: A diverse group has matured into a productive transdisciplinary team science consortium. Achieving this outcome required dedicated effort for each member to engage in activities that often required more time than single discipline research activities. Provision of the necessary time and tools has fostered a transdisciplinary team science culture and rich research agenda that reflects the complexity of the health issue to be addressed. Our experience may be useful for others embarking on team science projects.
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Promoção da Saúde , Pesquisa Interdisciplinar , Sintomas do Trato Urinário Inferior/prevenção & controle , HumanosRESUMO
AIMS: This analysis explored and characterized adolescent and adult women's lay language and discourse related to bladder health/function. METHODS: Forty-four focus groups were conducted across seven United States research centers with 360 adolescents and adult women, organized by six age categories. Multilevel content analyses classified emergent themes. A transdisciplinary lens and inductive approach guided data interpretation. Interpretive insights were validated by a community engagement panel. RESULTS: A repertoire of bladder function terms emerged, including explicit functional terms, formal and polite euphemistic terms, and informal familiar terms, as well as cultural and regional metaphors and idioms. Terminology usage was historically grounded, developmental, and cumulative across the life course. Lay discourse was contextual and affectively valent, suggesting unspoken, commonly understood, situation-based "rules" for talking about bladder function. Discourse appeared to be siloed within family and friendship circles. Adolescents and adult women often described, rather than named, bladder sensations or problems. Terminology for bladder issues tended to minimize severity and frequency, with medical language only relevant to extreme examples and not applicable to mild episodes. CONCLUSIONS: A definitional discordance between medical and lay views of bladder problems was identified, signifying a need to clarify the meaning of medical terms for lay persons. Adolescents and adult women do not have or use standardized precise terminology for bladder health and function, relying instead on social convention and interpersonal context. Findings can be used to foster shared understandings between lay persons and health professionals, informing development of clinical, research, and public health initiatives to promote bladder health.
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Conhecimentos, Atitudes e Prática em Saúde , Terminologia como Assunto , Transtornos Urinários , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Idioma , Pessoa de Meia-Idade , Saúde Pública , Pesquisa Qualitativa , Bexiga Urinária , Adulto JovemRESUMO
INTRODUCTION: Low-dose computed tomography (LDCT) lung cancer screening is recommended for current and former smokers who meet eligibility criteria. Few studies have quantitatively examined disparities in access to LDCT screening. The objective of this study was to examine relationships between 1) rurality, sociodemographic characteristics, and access to LDCT lung cancer screening and 2) screening access and lung cancer mortality. METHODS: We used census block group and county-level data from Missouri and Illinois. We defined access to screening as presence of an accredited screening center within 30 miles of residence as of May 2019. We used mixed-effects logistic models for screening access and county-level multiple linear regression models for lung cancer mortality. RESULTS: Approximately 97.6% of metropolitan residents had access to screening, compared with 41.0% of nonmetropolitan residents. After controlling for sociodemographic characteristics, the odds of having access to screening in rural areas were 17% of the odds in metropolitan areas (95% CI, 12%-26%). We observed no association between screening access and lung cancer mortality. Southeastern Missouri, a rural and impoverished area, had low levels of screening access, high smoking prevalence, and high lung cancer mortality. CONCLUSION: Although access to LDCT is lower in rural areas than in urban areas, lung cancer mortality in rural residents is multifactorial and cannot be explained by access alone. Targeted efforts to implement rural LDCT screening could reduce geographic disparities in access, although further research is needed to understand how increased access to screening could affect uptake and rural disparities in lung cancer mortality.
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Detecção Precoce de Câncer/métodos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Neoplasias Pulmonares/mortalidade , Fumar/epidemiologia , Idoso , Feminino , Humanos , Illinois/epidemiologia , Neoplasias Pulmonares/diagnóstico por imagem , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Missouri/epidemiologia , Prevalência , População Rural/estatística & dados numéricos , Tomografia Computadorizada por Raios X , População Urbana/estatística & dados numéricosRESUMO
This secondary analysis studied 50 transcripts of women who shared day-to-day experiences of lower urinary tract symptoms (LUTS) and characterized temporal (time-associated) features of living with LUTS. Findings revealed two overarching time-associated themes: The Complexity of LUTS and The Quest for Empowerment over LUTS. Findings suggest that the temporal burden of LUTS is the accumulated impact of symptoms and symptom management on women's daily lives within multiple contexts across the life course. Increasing nurses' knowledge of the temporal context of LUTS may heighten awareness and improve symptom detection and management.
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AIM: The study purpose is to explore adolescent and adult women's experiences, perceptions, beliefs, knowledge and behaviors related to bladder health across the life course using a socioecological perspective. Lower urinary tract symptoms affect between 20-40% of young adult to middle-aged women, with symptoms increasing in incidence and severity with aging. There is limited evidence to address bladder health promotion and prevention of dysfunction. This first study of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium is designed to address gaps in existing qualitative research in this area. DESIGN: This focus group study will be implemented across seven geographically diverse United States research centers using a semi-structured focus group guide informed by a conceptual framework based on the socioecological model. METHODS: The study was approved in July 2017. A total of 44 focus groups composed of 6-8 participants representing six different age categories (ranging from 11 to over 65 years) will be completed. We aim to recruit participants with diverse demographic and personal characteristics including race, ethnicity, education, socioeconomic status, urban/rural residence, physical/health conditions and urinary symptom experience. Up to 10 of these focus groups will be conducted in Spanish. Focus group transcripts will undergo content analysis and data interpretation to identify and classify themes and articulate emerging themes. DISCUSSION: This foundational qualitative study seeks to develop an evidence base to inform future research on bladder health promotion in adolescent and adult women. IMPACT: This study has the potential to provide new insights and understanding into adolescent and adult women's lived experience of bladder health, the experience of lower urinary symptoms and knowledge and beliefs across the life course. This article is protected by copyright. All rights reserved.