RESUMEN
STUDY OBJECTIVE: Lower urinary tract symptoms (LUTS) can have a pronounced impact on adolescent women's overall health and quality of life, both during adolescence and across the life course. Little research has examined adolescent women's knowledge, attitudes, and beliefs about bladder health and preventing LUTS. METHODS: This study combines data from two large multi-site focus group studies of individuals born female who identified as women conducted by the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium. The first study included data from 8 focus groups conducted in 2018 with 44 adolescents aged 11 through 17 years. The second consisted of data from 20 focus groups conducted in 2020 with 123 adolescents aged 13 through 17 years. We used directed content analysis, including deductive and inductive approaches, to explore textual data and identify emergent insights. We present themes that emerged from analyzing coded data related to knowledge, attitudes, and beliefs. RESULTS: Themes included: (1) lack of information about bladder function, leading to limited knowledge, (2) hydration as a healthy behavior, (3) distinguishing healthy versus unhealthy voiding, (4) social and environmental barriers to voiding, and (5) shame and stigma of bladder related behaviors. CONCLUSION: Our data suggests that adolescent women are aware of healthy and unhealthy behaviors related to bladder health, despite little exposure to formal education about the bladder. Social and environmental factors, including stigma, appear to be primary drivers of adolescents' behaviors around bladder health, suggesting that multi-level socio-ecological prevention interventions are needed to prevent LUTS in this population.
RESUMEN
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 9 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 (CI). Participants with no missing data for a given analysis were included (range of n=2564-3170). 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.
RESUMEN
Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches.. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia-including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.
RESUMEN
BACKGROUND: Cervical spinal cord injury (SCI) is a devastating injury. Restoring upper extremity function is a top priority, which can be accomplished by tendon transfer (TT) and nerve transfer (NT) surgeries. The purpose of this prospective comparative study was to assess long-term changes in UE function between surgical (TT or NT) and non-surgical groups through a comprehensive mixed methods approach. METHODS: This multicenter, cohort study compared data among three groups: those undergoing 1) no surgery 2) TT surgery, or 3) NT surgery. Quantitative data, the Spinal Cord Independence Measure (SCIM) and Short Form Health Survey (SF-36), was collected at baseline and long-term follow-up (6-24 months). Qualitative semi-structured interview data was also obtained from these participants and their identified caregivers at baseline, early follow-up (1 month), and long-term follow-up (6-24 months). RESULTS: Thirty-one participants had quantitative data across all timepoints: no surgery (n=14), TT (n=7), and NT (n=10). SCIM scores improved in TT and NT groups compared to the no surgery group (p<0.05). SF-36 scores did not differ among groups. Qualitative data analysis (n=168 interviews) corroborated SCIM findings: surgical participants and their caregivers reported improvement in transfers and ability to perform activities of daily living, including grooming and self-catheterization. Improved use of electronics and ability to operate a motor vehicle were also reported. Post-operative therapy was identified as a critical component of achieving gains. CONCLUSION: Both TT and NT surgery leads to quantitative and qualitative functional gains as compared to the no surgery group. This comparative information should be used to help surgeons discuss treatment options.
RESUMEN
BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.
Asunto(s)
Neoplasias de la Mama , Cuidadores , Humanos , Femenino , Cuidadores/psicología , Familia/psicología , Apoyo Social , Negro o Afroamericano , Investigación CualitativaRESUMEN
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.
Asunto(s)
Dolor Crónico , Cistitis Intersticial , Humanos , Femenino , Cistitis Intersticial/tratamiento farmacológico , Ansiedad , Grupos Focales , Investigación CualitativaRESUMEN
Background: Nerve transfer (NT) and tendon transfer (TT) surgeries can enhance upper extremity (UE) function and independence in individuals with cervical spinal cord injury (SCI). Caregivers are needed to make this surgery possible, yet caregivers experience their own set of challenges. Objectives: This comparative study explored the perioperative and nonoperative experiences of caregivers of individuals with cervical SCI, focusing on daily life activities, burden, and mental health. Methods: Caregivers of individuals with cervical SCI were recruited and grouped by treatment plan for the person with SCI: (1) no surgery (NS), (2) TT surgery, and (3) NT surgery. Semistructured interviews were conducted at baseline/preoperative, early follow-up/postoperative, and late follow-up/postoperative. Caregivers were asked about their daily life, mental health, and challenges related to caregiving. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Quantitative, single-item standardized burden score (0-100) data were collected at each timepoint. Results: Participants included 23 caregivers (18 family members, 4 friends, 1 hired professional). The surgeries often brought hope and motivation for caregivers. Caregivers reported increased burden immediately following surgery (less for the NT compared to TT subgroup) yet no long-term changes in the amount and type of care they provided. NS caregivers discussed social isolation, relationship dysfunction, and everyday challenges. Conclusion: Health care providers should consider the changing needs of SCI caregivers during perioperative rehabilitation. As part of the shared surgical decision-making approach, providers should educate caregivers about the postoperative process and the extent and potential variability of short- and long-term care needs.
Asunto(s)
Traumatismos de la Médula Espinal , Cirugía Plástica , Humanos , Traumatismos de la Médula Espinal/psicología , Estudios Prospectivos , Atención Perioperativa , Extremidad Superior/cirugíaRESUMEN
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.
Asunto(s)
Anemia de Células Falciformes , Manejo del Dolor , Humanos , Adulto , Manejo del Dolor/métodos , Registros Electrónicos de Salud , Dolor/tratamiento farmacológico , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/terapia , Servicio de Urgencia en HospitalRESUMEN
Objective: The purpose of this analysis was to explore adolescent and adult women's preferences for the content and delivery of public health messaging around bladder health. Materials and Methods: This was a directed content analysis of focus group data from the Study of Habits, Attitudes, Realities, and Experiences, which explored adolescent and adult women's experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. This article reports an analysis of the "Public Health Messaging" code, which includes participants' views on what information is needed about bladder health, attributes of messaging, and preferred locations and delivery methods. Results: Forty-four focus groups were conducted with 360 participants (ages 11-93 years) organized into six age groups. Across age groups, participants wanted messaging on maintaining bladder health and preventing bladder problems. They offered suggestions for a wide variety of methods to deliver bladder health information. Ideas for delivery methods fell into three broad categories: (1) traditional in-person modes of delivery, which included individual communication with providers in clinical settings and group-based methods in schools and other community settings where adolescent and adult women naturally gather; (2) internet-based website and social media delivery methods; and (3) static (noninteractive) modes of delivery such as pamphlets. Participants recommended the development of multiple delivery methods to be tailored for specific audiences. Conclusions: These findings can inform development of broad ranging public health messaging tailored to audiences of all ages with a goal of engaging adolescent and adult women across the bladder health risk spectrum.
Asunto(s)
Salud Pública , Vejiga Urinaria , Adulto , Femenino , Humanos , Adolescente , Grupos Focales , Comunicación , Instituciones Académicas , Investigación CualitativaRESUMEN
Cluster randomized trial design may raise financial concerns because the cost to recruit an additional cluster is much higher than to enroll an additional subject in subject-level randomized trials. Therefore, it is desirable to develop an optimal design. For local optimal designs, optimization means the minimum variance of the estimated treatment effect under the total budget. The local optimal design derived from the variance needs the input of an association parameter ρ in terms of a "working" correlation structure R(ρ) in the generalized estimating equation models. When the range of ρ instead of an exact value is available, the parameter space is defined as the range of ρ and the design space is defined as enrollment feasibility, for example, the number of clusters or cluster size. For any value ρ within the range, the optimal design and relative efficiency for each design in the design space is obtained. Then, for each design in the design space, the minimum relative efficiency within the parameter space is calculated. MaxiMin design is the optimal design that maximizes the minimum relative efficiency among all designs in the design space. Our contributions are threefold. First, for three common measures (risk difference, risk ratio, and odds ratio), we summarize all available local optimal designs and MaxiMin designs utilizing generalized estimating equation models when the group allocation proportion is predetermined for two-level and three-level parallel cluster randomized trials. We then propose the local optimal designs and MaxiMin designs using the same models when the group allocation proportion is undecided. Second, for partially nested designs, we develop the optimal designs for three common measures under the setting of equal number of subjects per cluster and exchangeable working correlation structure in the intervention group. Third, we create three new Statistical Analysis System (SAS) macros and update two existing SAS macros for all the optimal designs. We provide two examples to illustrate our methods.
Asunto(s)
Proyectos de Investigación , Humanos , Análisis por Conglomerados , Oportunidad Relativa , Ensayos Clínicos Controlados Aleatorios como Asunto , Tamaño de la MuestraRESUMEN
BACKGROUND: The Global Initiative for Asthma and National Asthma Education and Prevention Program recently made paradigm-shifting recommendations regarding inhaler management in asthma. The Global Initiative for Asthma now recommends that combination inhaled corticosteroid (ICS)-formoterol inhalers replace short-acting ß-agonists as the preferred reliever therapy at all steps of asthma management. Although the most recent guidelines of the National Asthma Education and Prevention Program did not review reliever ICS-formoterol usage in mild asthma, they similarly recommended single maintenance and reliever therapy (SMART) at steps 3 and 4 of asthma management. Despite these recommendations, many clinicians-particularly in the United States-are not prescribing new inhaler paradigms. Clinician-level reasons for this implementation gap remain largely unexplored. OBJECTIVE: To gain an in-depth understanding of the facilitators and barriers to prescribing reliever ICS-formoterol inhalers and SMART in the United States. METHODS: Community and academic primary care providers, pulmonologists, and allergists who reported regularly caring for adults with asthma were interviewed. Interviews were recorded, transcribed, qualitatively coded, and analyzed using the Consolidated Framework for Implementation Research. Interviews were continued until theme saturation. RESULTS: Among 20 interviewed clinicians, only 6 clinicians described regularly prescribing ICS-formoterol inhalers as a reliever inhaler (either alone or within SMART). Significant barriers to new inhaler approaches included concerns surrounding a lack of Food and Drug Administration labeling for ICS-formoterol as a reliever therapy, a lack of awareness regarding a patient's formulary-preferred ICS-long-acting ß-agonist choices, the high cost of combination inhalers, and time constraints. Facilitators to using new inhaler approaches included clinicians' beliefs that the latest inhaler recommendations are simpler and more congruent with real-world patients' behavior, and that a potential change in management strategy would offer a valuable opportunity for shared decision making. CONCLUSIONS: Although new guidelines exist in asthma, many clinicians described significant barriers to using them including medicolegal issues, pharmaceutical formulary confusion, and high drug costs. Nonetheless, most clinicians believed that the latest inhaler approaches would be more intuitive for their patients and would offer an opportunity for patient-centered collaboration and care. Stakeholders may find these results useful in future attempts to increase the real-world adoption of recent asthma recommendations.
Asunto(s)
Antiasmáticos , Asma , Adulto , Humanos , Estados Unidos/epidemiología , Budesonida/uso terapéutico , Antiasmáticos/uso terapéutico , Etanolaminas/uso terapéutico , Administración por Inhalación , Asma/tratamiento farmacológico , Combinación Budesonida y Fumarato de Formoterol/uso terapéutico , Fumarato de Formoterol/uso terapéutico , Nebulizadores y Vaporizadores , Corticoesteroides/uso terapéutico , Combinación de MedicamentosRESUMEN
Background: While technology advances have increased the popularity of remote interventions in underserved and rural cancer communities, less is understood about technology access and preferences for home-based physical activity programs in this cancer survivor population. Purpose: To determine access, preferences, and needs, for a home-based physical activity program in rural cancer survivors. Methods: A Qualtrics Research Panel was recruited to survey adults with cancer across the United States. Participants self-reported demographics, cancer characteristics, technology access and usage, and preferences for a home-based physical activity program. The Godin Leisure Time Exercise Questionnaire (GLTEQ) assessed current levels of physical activity. Descriptive statistics included means and standard deviations for continuous variables, and frequencies for categorical variables. Independent samples t-tests explored differences between rural and non-rural participants. Results: Participants (N=298; mean age=55.2 ± 16.5) had a history of cancer (mean age at diagnosis=46.5), with the most commonly reported cancer type being breast (25.5%), followed by prostate (16.1%). 74.2% resided in rural hometowns. 95% of participants reported accessing the internet daily. On a scale of 0-100, computer/laptop (M=63.4) and mobile phone (M=54.6) were the most preferred delivery modes for a home-based physical activity intervention, and most participants preferred balance/flexibility (72.2%) and aerobic (53.9%) exercises. Desired intervention elements included a frequency of 2-3 times a week (53.5%) for at least 20 minutes (75.7%). While there were notable rural disparities present (e.g., older age at diagnosis, lower levels of education; ps<.001), no differences emerged for technology access or environmental barriers (ps>.08). However, bias due to electronic delivery of the survey should not be discounted. Conclusion: These findings provide insights into the preferred physical activity intervention (e.g., computer delivery, balance/flexibility exercises) in rural cancer survivors, while highlighting the need for personalization. Future efforts should consider these preferences when designing and delivering home-based interventions in this population.
RESUMEN
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.
Asunto(s)
Laboratorios , Neoplasias , Humanos , Estudios Transversales , Atención a la Salud , ComunicaciónRESUMEN
Rural residents in underserved areas face many barriers to health services, including colonoscopies for colorectal cancer (CRC) screening, but rural healthcare providers may assist patients navigating these challenges due to familiarity with local contexts. In 2017 to 2018, we interviewed clinical practitioners and staff (n = 40) at 13 primary care and gastroenterology locations across rural Southern Illinois. We used a semi-structured interview guide that addressed system, provider, and patient levels including domains related to barriers, facilitators, and needs for intervention. This article focuses on 3 main elements related to distance and transportation that emerged from inductive coding. First, providers described long distance travel for care as normalized but not necessarily preferable. Second, they identified and described distance-related challenges specific to CRC screening, and third, providers discussed strategies, mostly related to transportation, they use to navigate those challenges. Finally, they suggested a variety of broader solutions to reduce distance and transportation barriers to screening. Overall, distance to care remains a challenge to increasing CRC screening and contributes to disparities in rural communities. To increase early detection and reduce rural cancer disparities, efforts to increase screening and follow-up must address ways to help patients and providers navigate this distance within their local communities and contexts.
Asunto(s)
Neoplasias Colorrectales , Accesibilidad a los Servicios de Salud , Humanos , Población Rural , Detección Precoz del Cáncer , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , IllinoisRESUMEN
Objective: The purpose of this analysis was to explore adolescent and adult women's interest in public health messaging around bladder health and perceptions of its usefulness. Materials and Methods: Directed content analysis of focus group data from the Study of Habits, Attitudes, Realities, and Experiences, which explored adolescent and adult women's experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health across the life course. This article reports an analysis of the "Public Health Messaging" code, which included participants' desire or need for information about bladder health and recommendations for appropriate priority audiences. Results: Forty-four focus groups were conducted with 360 participants organized into six age groups (11-93 years). There was consensus across age groups that more information about the bladder is wanted and needed throughout the life course, as there is currently a lack of reliable educational resources. Information on bladder health was seen as useful and important because it enables people to anticipate negative changes in bladder health and act to prevent these. Several priority audiences were identified based on their risk of developing symptoms, but participants also saw value in educating the general public regardless of risk status. They also recommended education for parents and teachers who are in positions to control bathroom access. Conclusions: Results indicate a uniform desire for information on women's bladder health and a need for more research to develop individual prevention strategies and public health messaging for women of all ages, as well as guidance for organizations with a role in supporting bladder health.
Asunto(s)
Salud Pública , Vejiga Urinaria , Adulto , Femenino , Adolescente , Humanos , Niño , Adulto Joven , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Salud de la Mujer , Grupos Focales , HábitosRESUMEN
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.
Asunto(s)
Participación de la Comunidad , Vejiga Urinaria , Humanos , Estudios Prospectivos , Participación de los Interesados , Proyectos de InvestigaciónRESUMEN
BACKGROUND: The adoption rate of point of care ultrasound (POCUS) for the confirmation of central venous catheter (CVC) positioning and exclusion of post procedure pneumothorax is low despite advantages in workflow compared to traditional chest X-ray (CXR). To explore why, we convened focus groups to address barriers and facilitators of implementation for POCUS guided CVC confirmation and de-implementation of post-procedure CXR. METHODS: We conducted focus groups with emergency medicine and critical care providers to discuss current practices in POCUS for CVC confirmation. The semi-structured focus group interview guide was informed by the Consolidated Framework for Implementation Research (CFIR). We performed qualitative content analysis of the resulting transcripts using a consensual qualitative research approach (NVivo software), aiming to identify priority categories that describe the barriers and facilitators of POCUS guided CVC confirmation. RESULTS: The coding dictionary of barriers and facilitators consisted of 21 codes from the focus group discussions. Our qualitative analysis revealed that 12 codes emerged spontaneously (inductively) within the focus group discussions and aligned directly to CFIR constructs. Common barriers included provider influences (e.g. knowledge and beliefs about POCUS for CVC confirmation), external network (e.g. societal guidelines, ancillary staff, and consultants), and inertia (habit or reflexive processes). Common facilitators included ultrasound protocol advantage and champions. Time and provider outcomes (cognitive offload, ownership, and independence) emerged as early barriers but late facilitators. CONCLUSION: Our qualitative analysis demonstrates real and perceived barriers against implementation of POCUS for CVC position confirmation and pneumothorax exclusion. Our findings discovered organizational and personal constructs that will inform development of multifaceted strategies toward implementation of POCUS after CVC insertion.
Asunto(s)
Cateterismo Venoso Central , Catéteres Venosos Centrales , Neumotórax , Humanos , Cateterismo Venoso Central/métodos , Ultrasonografía/métodos , Investigación CualitativaRESUMEN
BACKGROUND: There is variability in treatment strategies for patients with brachial plexus injury (BPI). We used qualitative research methods to better understand surgeons' rationale for treatment approaches. We hypothesized that distal nerve transfers would be preferred over exploration and nerve grafting of the brachial plexus. METHODS: We conducted semi-structured interviews with BPI surgeons to discuss 3 case vignettes: pan-plexus injury, upper trunk injury, and lower trunk injury. The interview guide included questions regarding overall treatment strategy, indications and utility of brachial plexus exploration, and the role of nerve grafting and/or nerve transfers. Interview transcripts were coded by 2 researchers. We performed inductive thematic analysis to collate these codes into themes, focusing on the role of brachial plexus exploration in the treatment of BPI. RESULTS: Most surgeons routinely explore the supraclavicular brachial plexus in situations of pan-plexus and upper trunk injuries. Reasons to explore included the importance of obtaining a definitive root level diagnosis, perceived availability of donor nerve roots, timing of anticipated recovery, plans for distal reconstruction, and the potential for neurolysis. Very few explore lower trunk injuries, citing concern with technical difficulty and unfavorable risk-benefit profile. CONCLUSIONS: Our analysis suggests that supraclavicular exploration remains a foundational component of surgical management of BPI, despite increasing utilization of distal nerve transfers. Availability of abundant donor axons and establishing an accurate diagnosis were cited as primary reasons in support of exploration. This analysis of surgeon interviews characterizes contemporary practices regarding the role of brachial plexus exploration in the treatment of BPI.
Asunto(s)
Neuropatías del Plexo Braquial , Plexo Braquial , Transferencia de Nervios , Humanos , Plexo Braquial/cirugía , Plexo Braquial/lesiones , Transferencia de Nervios/métodos , Neuropatías del Plexo Braquial/cirugía , Procedimientos Neuroquirúrgicos/métodosRESUMEN
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.
Asunto(s)
Neuropatías del Plexo Braquial , Plexo Braquial , Humanos , Participación del Paciente , Plexo Braquial/cirugía , Plexo Braquial/lesiones , Emociones , Satisfacción del Paciente , Neuropatías del Plexo Braquial/cirugíaRESUMEN
INTRODUCTION: People with cervical spinal cord injury (SCI) identify improving upper extremity (UE) function as a top priority. In addition to comprehensive rehabilitation, UE surgeries, including nerve and tendon transfers, enhance function. However, barriers exist to disseminating information about surgical options to enhance UE function. OBJECTIVE: To assess the experiences and preferences of people with cervical SCI and their caregivers in accessing information about surgery to enhance UE function. DESIGN: Prospective cohort study. Participants were followed up for 24 months and completed up to three interviews. SETTING: Tertiary care at academic and affiliated Veterans Administration Health Care Centers. PARTICIPANTS: Adults with cervical SCI (n = 35) ages 18 to 80 years with mid-cervical SCI American Spinal Injury Association Impairment Scale A, B, or C (at least 6 months post-injury) and their caregivers (n = 23) were eligible to participate. Participants were enrolled in three groups: nerve transfer, tendon transfer, or no UE reconstructive surgery. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Semi-structured interviews about surgical knowledge and experiences. RESULTS: Data were analyzed and three themes were identified. First, providing information about UE surgical options early post-injury was recommended. The acute or inpatient rehabilitation phases of recovery were the preferred times to receive surgical information. Second, challenges with information dissemination were identified. Participants learned about UE surgery through independent research, medical provider interactions, or peers. Third, peers were identified as valuable resources for SCI needs and surgical information. CONCLUSIONS: Following cervical SCI, information about UE reconstructive surgeries should be a standard component of education during rehabilitation. An increased understanding of the reconstructive options available to improve UE function is necessary to educate stakeholders. Future research is needed to support the development of strategies to effectively present surgical information to individuals with SCI and health care providers.