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1.
J Cutan Pathol ; 2024 May 24.
Artículo en Inglés | MEDLINE | ID: mdl-38783791

RESUMEN

BACKGROUND: Technology has revolutionized not only direct patient care but also diagnostic care processes. This study evaluates the transition from glass-slide microscopy to digital pathology (DP) at a multisite academic institution, using mixed methods to understand user perceptions of digitization and key productivity metrics of practice change. METHODS: Participants included dermatopathologists, pathology reporting specialists, and clinicians. Electronic surveys and individual or group interviews included questions related to technology comfort, trust in DP, and rationale for DP adoption. Case volumes and turnaround times were abstracted from the electronic health record from Qtr 4 2020 to Qtr 1 2023 (inclusive). Data were analyzed descriptively, while interviews were analyzed using methods of content analysis. RESULTS: Thirty-four staff completed surveys and 22 participated in an interview. Case volumes and diagnostic turnaround time did not differ across the institution during or after implementation timelines (p = 0.084; p = 0.133, respectively). 82.5% (28/34) of staff agreed that DP improved the sign-out experience, with accessibility, ergonomics, and annotation features described as key factors. Clinicians reported positive perspectives of DP impact on patient safety and interdisciplinary collaboration. CONCLUSIONS: Our study demonstrates that DP has a high acceptance rate, does not adversely impact productivity, and may improve patient safety and care collaboration.

2.
Support Care Cancer ; 31(9): 543, 2023 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-37646853

RESUMEN

BACKGROUND: Social determinants of health lead to better cancer care. This multi-site, single-institution study sought to capture data on social determinants of health data in Asian Americans with hepatocellular carcinoma; this group constitutes 60% of patients with this malignancy and are often undertreated or not treated at all. METHODS: This study took advantage of an institutional initiative designed to capture and integrate social determinants of health data into the electronic medical record for all patients. Medical records of Asian Americans with hepatocellular cancer were reviewed to acquire data on housing instability, lack of transportation, financial concerns, and social isolation; a score of 1 indicated poor social determinants of health. RESULTS: Of 112 adult Asian American patients with hepatocellular cancer, 22 (20%) were Southeast Asian, and 74 (67%) described English proficiency/preference. Total noncompletion per domain (no question answered within that domain) was observed in 90 patients (80%) for housing instability; 90 (80%) for lack of transportation; 92 (82%) for financial hardship; and 90 (80%) for social isolation. A score of 1 (highest risk) was observed in 1 patient (0.9%) for housing instability; 1 (0.9%) lack of transportation; no patient for financial hardship; and 1 (0.9%) for social isolation. Of note, institution-wide benchmark total noncompletion rates were 0.3%, 0.3%, 47%, and 39% for these respective domains. CONCLUSION: High total noncompletion rates make social determinants of health data challenging to interpret and underscore the need for evidence-based guidelines on how best to capture such data in underserved patients.


Asunto(s)
Carcinoma Hepatocelular , Neoplasias Hepáticas , Adulto , Humanos , Asiático , Determinantes Sociales de la Salud , Registros Electrónicos de Salud
3.
Support Care Cancer ; 31(12): 697, 2023 Nov 14.
Artículo en Inglés | MEDLINE | ID: mdl-37962699

RESUMEN

PURPOSE: Symptoms can negatively impact quality of life for patients with a history of cancer. Digital, electronic health record (EHR)-integrated approaches to routine symptom monitoring accompanied by evidence-based interventions for symptom management have been explored as a scalable way to improve symptom management, particularly between clinic visits. However, little research has evaluated barriers and facilitators to implementing these approaches in real-world settings, particularly during the pre-implementation phase. Pre-implementation assessment is critical for informing the selection and sequencing of implementation strategies and intervention adaptation. Thus, this study sought to understand pre-implementation perceptions of a remote cancer symptom monitoring and management intervention that uses electronic patient-reported outcome measures for symptom assessment. METHODS: We interviewed 20 clinical and administrative stakeholders from 4 geographic regions within an academic medical center and its affiliated health system during the months prior to initiation of a stepped-wedge, cluster randomized pragmatic trial. Transcripts were coded using the Consolidated Framework for Implementation Research [CFIR] 2.0. Two study team members reviewed coded transcripts to understand how determinants were relevant in the pre-implementation phase of the trial and prepared analytic memos to identify themes. RESULTS: Findings are summarized in four themes: (1) ability of the intervention to meet patient needs [recipient characteristics], (2) designing with care team needs in mind [innovation design and adaptability], (3) fit of the intervention with existing practice workflows [compatibility], and (4) engaging care teams early [engaging deliverers]. CONCLUSION: Attention to these aspects when planning intervention protocols can promote intervention compatibility with patients, providers, and practices thereby increasing implementation success.


Asunto(s)
Neoplasias , Calidad de Vida , Humanos , Centros Médicos Académicos , Atención Ambulatoria , Cognición , Neoplasias/terapia , Medición de Resultados Informados por el Paciente
4.
Qual Life Res ; 32(3): 841-852, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36322269

RESUMEN

PURPOSE: The purpose of this study is to evaluate potential gender-based differences in interpreting the Kansas City Cardiomyopathy Questionnaire (KCCQ-23) and to explore if there are aspects of health-related quality of life (HRQOL) not captured by the KCCQ-23 that are important to assess in men and/or women with heart failure (HF). METHODS: Patients ≥ 22 years of age with clinician-diagnosed HF and left ventricular ejection fraction ≤ 40% were recruited from two academic medical centers to participate in semi-structured concept elicitation and cognitive debriefing interviews. Enrollment was stratified by patient-identified gender (half women/half men). All interviews were conducted over the phone/web and audio recorded. Interviews were transcribed and descriptive qualitative content analysis was used to summarize findings overall and by gender. RESULTS: Twenty-five adults (56% women) diagnosed with HF participated. The average age was 67 years (range: 25-88). Women attributed a wider variety of symptoms to HF than men. Some participants had difficulty differentiating whether their experiences were due to HF, side effects of their medications, or age. We found very little evidence that participants interpreted KCCQ-23 items differently based on gender. CONCLUSIONS: Overall, our findings indicate that interpretation of the KCCQ-23 items were similar in men and women. However, some modifications to items may improve clarity of interpretation for a wide range of patients.


Asunto(s)
Cardiomiopatías , Insuficiencia Cardíaca , Masculino , Adulto , Humanos , Femenino , Anciano , Calidad de Vida/psicología , Estado de Salud , Volumen Sistólico , Kansas , Función Ventricular Izquierda , Insuficiencia Cardíaca/terapia , Encuestas y Cuestionarios
5.
Cancer ; 128(5): 1038-1047, 2022 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-34855208

RESUMEN

BACKGROUND: The objective of this randomized trial was to evaluate the short-term effect of bilingual written and interpersonal education regarding mammographic breast density (MBD). METHODS: Latinas aged 40 to 74 years who were presenting for screening mammography were recruited and randomized 1:1:1 to receive a letter with their mammogram and MBD results (usual care [UC]), a letter plus a brochure (enhanced care [ENH]), or a letter plus a brochure and telephonic promotora education (interpersonal care [INT]). Surveys were administered at enrollment (T0 ) and 2 weeks to 6 months after intervention delivery (T1 ). Differences were assessed with χ2 , Kruskal-Wallis, and McNemar tests and pairwise comparisons as appropriate. INT metrics and audio recordings were analyzed with descriptive statistics and qualitative content analysis. RESULTS: Between October 2016 and October 2019, 943 of 1108 Latina participants (85%) completed both surveys. At T1 , INT participants were more likely (P < .001) to report seeing their MBD results in the letter (70.2%) than UC (53.1%) or ENH participants (55.1%). The percentage of INT women who reported speaking with a provider about MBD (29.0%) was significantly greater (P < .001) than the percentage of UC (14.7%) or ENH participants (15.6%). All groups saw significant (P < .001) but nondifferential improvements in their knowledge of MBD as a masking and risk factor. In the INT group, the promotora delivered education to 77.1% of the 446 participants randomized to INT and answered questions at 28.3% of the encounters for an average of $4.70 per participant. CONCLUSIONS: Among Latinas in a low-resource setting, MBD knowledge may increase with written or interpersonal education, but with modest investment, interpersonal education may better improve MBD awareness and prompt patient-provider discussions.


Asunto(s)
Densidad de la Mama , Neoplasias de la Mama , Adulto , Anciano , Detección Precoz del Cáncer , Femenino , Hispánicos o Latinos , Humanos , Mamografía , Persona de Mediana Edad
6.
BMC Med Educ ; 21(1): 182, 2021 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-33766015

RESUMEN

BACKGROUND: The purpose of this study was to evaluate the extent to which a longitudinal student-run clinic (SRC) is meeting its stated learning objectives, including providing critical community services and developing physicians who more fully appreciate the social factors affecting their patients' health. METHODS: This was a mixed methods program evaluation of an SRC at Mayo Clinic Alix School of Medicine (MCASOM). A survey was conducted of medical students who had participated in the clinic and seven interviews and three focus groups were conducted with SRC patients, students, faculty, staff, and board members. Transcripts were coded for systematic themes and sub-themes. Major themes were reported. Survey and interview data were integrated by comparing findings and discussing areas of convergence or divergence in order to more fully understand program success and potential areas for improvement. RESULTS: Greater than 85% of student survey respondents (N = 90) agreed or strongly agreed that the SRC met each of its objectives: to provide a vital community service, to explore social determinants of health (SDH), to understand barriers to healthcare access and to practice patience-centered examination. Qualitative data revealed that the SRC contextualized authentic patient care experiences early in students' medical school careers, but the depth of learning was variable between students. Furthermore, exposure to SDH through the program did not necessarily translate to student understanding of the impact of these social factors on patient's health nor did it clearly influence students' future practice goals. CONCLUSIONS: The MCASOM SRC experience met core learning objectives, but opportunities to improve long-term impact on students were identified. Participation in the SRC enabled students to engage in patient care early in training that is representative of future practices. SRCs are an avenue by which students can gain exposure to real-world applications of SDH and barriers to healthcare access, but additional focus on faculty development and intentional reflection may be needed to translate this exposure to actionable student understanding of social factors that impact patient care.


Asunto(s)
Educación de Pregrado en Medicina , Estudiantes de Medicina , Instituciones de Atención Ambulatoria , Humanos , Aprendizaje , Atención al Paciente
7.
J Cancer Educ ; 36(4): 795-803, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-32052262

RESUMEN

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


Asunto(s)
Dominio Limitado del Inglés , Neoplasias , Barreras de Comunicación , Detección Precoz del Cáncer , Humanos , Lenguaje , Neoplasias/diagnóstico , Neoplasias/prevención & control
8.
Am J Obstet Gynecol ; 221(6): 638.e1-638.e8, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31228414

RESUMEN

BACKGROUND: Standard prenatal care, consisting of 12-14 visits per pregnancy, is expensive and resource intensive, with limited evidence supporting the structure, rhythm, or components of care. Some studies suggest a reduced-frequency prenatal care model is as safe as the standard model of care for low-risk pregnant women, but evidence is limited. We developed and evaluated an innovative, technology-enhanced, reduced prenatal visit model (OB Nest). OBJECTIVE: To evaluate the acceptability and effectiveness of OB Nest, a reduced-frequency prenatal care model enhanced with remote home monitoring devices and nursing support. STUDY DESIGN: A single-center randomized controlled trial, composed of pregnant women, aged 18-36 years, recruited from an outpatient obstetric tertiary academic center in the Midwest United States. OB Nest care consisted of 8 onsite appointments with an obstetric provider; 6 virtual visits consisting of phone or online communication with an assigned nurse, supplemented with fetal Doppler and sphygmomanometer home monitoring devices; and access to an online community of pregnant women. Usual care consisted of 12 prescheduled prenatal clinic appointments with obstetric providers. Acceptability of OB Nest was measured by validated surveys of patient satisfaction with care at 36 weeks; perception of stress at 14, 24, and 36 weeks; and perceived quality of care at 36 weeks of gestation. Effectiveness was analyzed by comparing adherence to the American College of Obstetricians and Gynecologists recommended routine prenatal and ancillary services, maternal and fetal safety outcomes, and healthcare utilization. RESULTS: Three hundred pregnant women at <13 weeks of gestation were recruited and randomized to OB Nest or usual care (150 in each arm) using a minimization algorithm. Demographic characteristics were similar between groups. Compared to usual care, patients in OB Nest had higher satisfaction on a 100-point validated modified Littlefield and Adams Satisfaction scale (OB Nest = 93.9% vs usual care = 78.9%, P < .01). Pregnancy-related stress, measured, on a 0-2 point PreNatal Maternal Stress validated scale, with higher scores indicating higher levels of stress, was lower among OB Nest participants at 14 weeks (OB Nest = 0.32 vs usual care = 0.41, P < .01) and at 36 weeks of gestation (OB Nest = 0.34 vs usual care = 0.40, P < .03). There was no statistical difference in perceived quality of care. Adherence to the provision of American College of Obstetricians and Gynecologists prenatal services was similar in both arms. Maternal and fetal clinical outcomes were similar between groups. Total reported nursing time was higher in OB Nest (OB Nest = 171.2 minutes vs usual care = 108.2 minutes, 95% confidence interval, 48.7-77.4). CONCLUSION: OB Nest is an innovative, acceptable, and effective reduced-frequency prenatal care model. Compared to routine prenatal care, OB Nest resulted in higher patient satisfaction and lower prenatal stress, while reducing the number of appointments with clinicians and maintaining care standards for pregnant women. This program is a step toward evidence-driven prenatal care that improves patient satisfaction.


Asunto(s)
Determinación de la Presión Sanguínea , Atención a la Salud/métodos , Frecuencia Cardíaca Fetal , Atención Prenatal/métodos , Autocuidado/métodos , Telemedicina/métodos , Adulto , Femenino , Humanos , Enfermería Obstétrica/métodos , Obstetricia/métodos , Aceptación de la Atención de Salud , Satisfacción del Paciente , Embarazo , Calidad de la Atención de Salud , Esfigmomanometros , Estrés Psicológico/psicología , Ultrasonografía Doppler
10.
Support Care Cancer ; 27(6): 2153-2158, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30284040

RESUMEN

PURPOSE: Smoking is a risk factor for poor outcomes following breast reconstructive surgery. This project aimed to design and implement an intervention to consistently refer all breast cancer patients to tobacco treatment services. METHODS: In formative work, a set of processes for providers to consistently refer patients to a tobacco treatment specialist at the Nicotine Dependence Center (NDC) was designed. Elements included consistent documentation of smoking status, provider advice specific to the benefits of quitting to cancer care, referral to NDC using an "opt-out" strategy that emphasized smoking cessation as a standard part of breast cancer treatment, and reinforcement of the importance of the referral by multiple personnel. The number of referrals to the NDC and number of patients who attended their scheduled NDC appointment were measured before and 1 year after implementation. Qualitative evaluation was performed using semi-structured interviews with participating providers and patients regarding acceptability. RESULTS: The proportion of smoking patients referred to the NDC increased from 29% (22/75) before the intervention to 74% (20/27) afterward. Among those referred, attendance at the consultation increased from 41% (9/22) to 75% (15/20). This occurred despite provider interviews revealing knowledge gaps about the referral process and evidence of provider adaptation to accommodate personal practice. Feasibility and acceptability of the intervention were high. CONCLUSION: These findings suggest that similar referral interventions for all cancer patients should be pursued with the aim of embedding tobacco dependence treatment seamlessly and consistently into the cancer treatment plan of every patient who smokes cigarettes.


Asunto(s)
Neoplasias de la Mama/terapia , Servicios de Salud/normas , Mejoramiento de la Calidad/normas , Cese del Hábito de Fumar/métodos , Nivel de Atención/normas , Neoplasias de la Mama/patología , Femenino , Humanos , Persona de Mediana Edad , Derivación y Consulta , Cese del Hábito de Fumar/psicología
11.
Support Care Cancer ; 27(1): 249-255, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-29938306

RESUMEN

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


Asunto(s)
Antieméticos/uso terapéutico , Antineoplásicos/efectos adversos , Quimioprevención , Náusea , Neoplasias/tratamiento farmacológico , Vómitos , Adulto , Anciano , Anciano de 80 o más Años , Quimioprevención/métodos , Quimioprevención/estadística & datos numéricos , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/epidemiología , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/prevención & control , Femenino , Humanos , Entrevistas como Asunto , Masculino , Cumplimiento de la Medicación/psicología , Cumplimiento de la Medicación/estadística & datos numéricos , Persona de Mediana Edad , Náusea/inducido químicamente , Náusea/epidemiología , Náusea/prevención & control , Neoplasias/epidemiología , Cuidados Paliativos/métodos , Cuidados Paliativos/estadística & datos numéricos , Investigación Cualitativa , Autoinforme/estadística & datos numéricos , Aislamiento Social/psicología , Insuficiencia del Tratamiento , Vómitos/inducido químicamente , Vómitos/epidemiología , Vómitos/prevención & control
13.
Health Expect ; 21(6): 981-989, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-29655265

RESUMEN

OBJECTIVE: This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients' clinical trial (CT) participation. The study also offers unique insights into how FMs view patients' decision making. METHODS: In-depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA). RESULTS: Patients' relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors' recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the "final say," indicating an individualistic autonomy. However, maintaining the "final say" in the decision-making process is constitutive of patients' relationships, emphasizing a relational approach to autonomy. FMs support patients' autonomy and they do so particularly when they believe the patient is capable of making the right choices. CONCLUSIONS: Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.


Asunto(s)
Conducta de Elección , Ensayos Clínicos como Asunto , Consentimiento Informado/ética , Neoplasias Ováricas/terapia , Participación del Paciente , Autonomía Personal , Toma de Decisiones/ética , Familia/psicología , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente , Investigación Cualitativa
14.
Teach Learn Med ; 30(4): 433-443, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29775080

RESUMEN

PROBLEM: Mindfulness training includes mindfulness meditation, which has been shown to improve both attention and self-awareness. Medical providers in the intensive care unit often deal with difficult situations with strong emotions, life-and-death decisions, and both interpersonal and interprofessional conflicts. The effect of mindfulness meditation training on healthcare providers during acute care tasks such as cardiopulmonary resuscitation remains unknown. Mindfulness meditation has the potential to improve provider well-being and reduce stress in individuals involved in resuscitation teams, which could then translate into better team communication and delivery of care under stress. A better understanding of this process could lead to more effective training approaches, improved team performance, and better patient outcomes. INTERVENTION: All participants were instructed to use a mindfulness meditation device (Muse™ headband) at home for 7 min twice a day or 14 min daily over the 4-week training period. This device uses brainwave sensors to monitor active versus relaxing brain activity and provides real-time feedback. CONTEXT: We conducted a single-group pretest-posttest convergent mixed-methods study. We enrolled 24 healthcare providers, comprising 4 interprofessional code teams, including physicians, nurses, respiratory therapists, and pharmacists. Each team participated in a simulation session immediately before and after the mindfulness training period. Each session consisted of two simulated cardiopulmonary arrest scenarios. Both quantitative and qualitative outcomes were assessed. OUTCOME: The median proportion of participants who used the device as prescribed was 85%. Emotional balance, as measured by the critical positivity ratio, improved significantly from pretraining to posttraining (p = .02). Qualitative findings showed that mindfulness meditation changed how participants responded to work-related stress, including stress in real-code situations. Participants described the value of time for self-guided practice with feedback from the device, which then helped them develop individual approaches to meditation not reliant on the technology. Time measures during the simulated scenarios improved, specifically, time to epinephrine in Scenario 1 (p = .03) and time to defibrillation in Scenario 2 (p = .02), improved. In addition, team performance, such as teamwork (p = .04), task management (p = .01), and overall performance (p = .04), improved significantly after mindfulness meditation training. Physiologic stress (skin conductance) improved but did not reach statistical significance (p = .11). LESSONS LEARNED: Mindfulness meditation practice may improve individual well-being and team function in high-stress clinical environments. Our results may represent a foundation to design larger confirmatory studies.


Asunto(s)
Reanimación Cardiopulmonar , Meditación , Atención Plena , Inteligencia Emocional , Femenino , Humanos , Unidades de Cuidados Intensivos , Comunicación Interdisciplinaria , Entrevistas como Asunto , Masculino , Evaluación de Resultado en la Atención de Salud , Proyectos Piloto , Investigación Cualitativa , Encuestas y Cuestionarios
15.
Qual Life Res ; 26(2): 489-503, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27566732

RESUMEN

PURPOSE: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS). METHODS: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. RESULTS: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). CONCLUSION: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.


Asunto(s)
Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Autocuidado/métodos , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
16.
Clin Trials ; 13(6): 660-664, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-27353282

RESUMEN

BACKGROUND/AIMS: Some of the most promising avenues of cancer clinical investigation center on immunotherapeutic approaches. These approaches have provided notable gains in cancer therapeutics with recent Food and Drug Administration approvals of agents of this class in several types of cancers, although gains for ovarian cancer lag behind. This study examined perceptions of therapeutic trials including immunotherapy and virotherapy among ovarian cancer patients and their family members. METHODS: A total of 72 semi-structured qualitative interviews were conducted with 33 patients and 39 family members at two National Cancer Institute-designated comprehensive cancer centers. Eligible patients were diagnosed with epithelial ovarian, primary peritoneal, or fallopian tube carcinoma and had experience with clinical trial conversations; family members were nominated by patients and interviewed separately. Applied thematic analysis was used to understand and interpret the data. RESULTS: More participants were aware of vaccine trials than virus trials, although more than half had heard of at least one of them. Initial reactions to vaccine trials were generally favorable. For many, childhood experience with vaccines lent a familiar frame of reference. Virus trials elicited more negative initial reactions, including the use of adjectives such as "scary" and "dreadful." Viruses seemed contagious or difficult to control. Increased receptivity to these trials occurred in the context of limited therapeutic options and cancer recurrence. Most participants, including those not immediately drawn to these types of trials, indicated openness to learning more. CONCLUSION: Although vaccine and viral trials are both immunologically based therapeutic approaches, patients who are offered these trials may perceive their potential benefit and safety quite differently. There is a need to consider terminology, solicit and address "gut reactions," and provide information that enables patients and their family members to better understand the science behind these trials.


Asunto(s)
Vacunas contra el Cáncer/uso terapéutico , Familia , Conocimientos, Actitudes y Práctica en Salud , Viroterapia Oncolítica/métodos , Neoplasias Ováricas/terapia , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Salud , Ensayos Clínicos como Asunto , Femenino , Humanos , Inmunoterapia , Masculino , Persona de Mediana Edad , Investigación Cualitativa
17.
J Gen Intern Med ; 30(9): 1251-8, 2015 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-26173517

RESUMEN

BACKGROUND: The stigma of obesity is a common and overt social bias. Negative attitudes and derogatory humor about overweight/obese individuals are commonplace among health care providers and medical students. As such, medical school may be particularly threatening for students who are overweight or obese. OBJECTIVE: The purpose of our study was to assess the frequency that obese/overweight students report being stigmatized, the degree to which stigma is internalized, and the impact of these factors on their well-being. DESIGN: We performed cross-sectional analysis of data from the Medical Student Cognitive Habits and Growth Evaluation Study (CHANGES) survey. PARTICIPANTS: A total of 4,687 first-year medical students (1,146 overweight/obese) from a stratified random sample of 49 medical schools participated in the study. MAIN MEASURES: Implicit and explicit self-stigma were measured with the Implicit Association Test and Anti-Fat Attitudes Questionnaire. Overall health, anxiety, depression, fatigue, self-esteem, sense of mastery, social support, loneliness, and use of alcohol/drugs to cope with stress were measured using previously validated scales. KEY RESULTS: Among obese and overweight students, perceived stigma was associated with each measured component of well-being, including anxiety (beta coefficient [b] = 0.18; standard error [SE] = 0.03; p < 0.001) and depression (b = 0.20; SE = 0.03; p < 0.001). Among the subscales of the explicit self-stigma measure, dislike of obese people was associated with several factors, including depression (b = 0.07; SE = .01; p < 0.001), a lower sense of mastery (b = -0.10; SE = 0.02; p < 0.001), and greater likelihood of using drugs or alcohol to cope with stress (b = .05; SE = 0.01; p < 0.001). Fear of becoming fat was associated with each measured component of well-being, including lower body esteem (b = -0.25; SE = 0.01; p < 0.001) and less social support (b = -0.06; SE = 0.01; p < 0.001). Implicit self-stigma was not consistently associated with well-being factors. Compared to normal-weight/underweight peers, overweight/obese medical students had worse overall health (b = -0.33; SE = 0.03; p < 0.001) and body esteem (b = -0.70; SE = 0.02; p < 0.001), and overweight/obese female students reported less social support (b = -0.12; SE = 0.03; p < 0.001) and more loneliness (b = 0.22; SE = 0.04; p < 0.001). CONCLUSIONS: Perceived and internalized weight stigma may contribute to worse well-being among overweight/obese medical students.


Asunto(s)
Obesidad/psicología , Sobrepeso/psicología , Autoimagen , Estigma Social , Estudiantes de Medicina/psicología , Ansiedad/psicología , Estudios Transversales , Depresión/psicología , Fatiga/psicología , Femenino , Humanos , Masculino , Apoyo Social , Encuestas y Cuestionarios , Estados Unidos , Adulto Joven
18.
BMC Pregnancy Childbirth ; 15: 323, 2015 Dec 02.
Artículo en Inglés | MEDLINE | ID: mdl-26631000

RESUMEN

BACKGROUND: Most low-risk pregnant women receive the standard model of prenatal care with frequent office visits. Research suggests that a reduced schedule of visits among low-risk women could be implemented without increasing adverse maternal or fetal outcomes, but patient satisfaction with these models varies. We aim to determine the effectiveness and feasibility of a new prenatal care model (OB Nest) that enhances a reduced visit model by adding virtual connections that improve continuity of care and patient-directed access to care. METHODS AND DESIGN: This mixed-methods study uses a hybrid effectiveness-implementation design in a single center randomized controlled trial (RCT). Embedding process evaluation in an experimental design like an RCT allows researchers to answer both "Did it work?" and "How or why did it work (or not work)?" when studying complex interventions, as well as providing knowledge for translation into practice after the study. The RE-AIM framework was used to ensure attention to evaluating program components in terms of sustainable adoption and implementation. Low-risk patients recruited from the Obstetrics Division at Mayo Clinic (Rochester, MN) will be randomized to OB Nest or usual care. OB Nest patients will be assigned to a dedicated nursing team, scheduled for 8 pre-planned office visits with a physician or midwife and 6 telephone or online nurse visits (compared to 12 pre-planned physician or midwife office visits in the usual care group), and provided fetal heart rate and blood pressure home monitoring equipment and information on joining an online care community. Quantitative methods will include patient surveys and medical record abstraction. The primary quantitative outcome is patient-reported satisfaction. Other outcomes include fidelity to items on the American Congress of Obstetricians and Gynecologists standards of care list, health care utilization (e.g. numbers of antenatal office visits), and maternal and fetal outcomes (e.g. gestational age at delivery), as well as validated patient-reported measures of pregnancy-related stress and perceived quality of care. Quantitative analysis will be performed according to the intention to treat principle. Qualitative methods will include interviews and focus groups with providers, staff, and patients, and will explore satisfaction, intervention adoption, and implementation feasibility. We will use methods of qualitative thematic analysis at three stages. Mixed methods analysis will involve the use of qualitative data to lend insight to quantitative findings. DISCUSSION: This study will make important contributions to the literature on reduced visit models by evaluating a novel prenatal care model with components to increase patient connectedness (even with fewer pre-scheduled office visits), as demonstrated on a range of patient-important outcomes. The use of a hybrid effectiveness-implementation approach, as well as attention to patient and provider perspectives on program components and implementation, may uncover important information that can inform long-term feasibility and potentially speed future translation. TRIAL REGISTRATION: Trial registration identifier: NCT02082275 Submitted: March 6, 2014.


Asunto(s)
Continuidad de la Atención al Paciente/normas , Visita a Consultorio Médico/estadística & datos numéricos , Atención Prenatal/normas , Proyectos de Investigación/normas , Adulto , Protocolos Clínicos , Femenino , Humanos , Aceptación de la Atención de Salud , Satisfacción del Paciente , Embarazo , Atención Prenatal/métodos , Atención Prenatal/psicología , Evaluación de Programas y Proyectos de Salud/métodos , Investigación Cualitativa
19.
BMC Public Health ; 15: 1311, 2015 Dec 29.
Artículo en Inglés | MEDLINE | ID: mdl-26715465

RESUMEN

BACKGROUND: Immigrants and refugees are affected by diabetes-related health disparities, with higher rates of incident diabetes and sub-optimal diabetes outcomes. Digital storytelling interventions for chronic diseases, such as diabetes may be especially powerful among immigrants because often limited English proficiency minimizes access to and affects the applicability of the existing health education opportunities. Community-based participatory research (CBPR), whereby community members and academia partner in an equitable relationship through all phases of the research, is an intuitive approach to develop these interventions. The main objective of this study was to develop a diabetes digital storytelling intervention with and for immigrant and refugee populations. METHODS: We used a CBPR approach to develop a diabetes digital storytelling intervention with and for immigrant and refugee Somali and Latino communities. Building on an established CBPR partnership, we conducted focus groups among community members with type II diabetes for a dual purpose: 1) to inform the intervention as it related to four domains of diabetes self-management (medication management, glucose self-monitoring, physical activity, and nutrition); 2) to identify champion storytellers for the intervention development. Eight participants attended a facilitated workshop for the creation of the digital stories. RESULTS: Each of the eight storytellers, from the Somali and Latino communities with diabetes (four from each group), created a powerful and compelling story about their struggles and accomplishments related to the four domains of diabetes self-management. CONCLUSIONS: This report is on a systematic, participatory process for the successful development of a diabetes storytelling intervention for Somali and Latino adults. Processes and products from this work may inform the work of other CBPR partnerships.


Asunto(s)
Diabetes Mellitus Tipo 2/terapia , Emigrantes e Inmigrantes , Narración , Refugiados , Autocuidado , Adulto , Comunicación , Investigación Participativa Basada en la Comunidad/métodos , Relaciones Comunidad-Institución , Diabetes Mellitus Tipo 2/etnología , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Minnesota , Características de la Residencia , Universidades
20.
Int J Behav Nutr Phys Act ; 11: 63, 2014 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-24886062

RESUMEN

BACKGROUND: Immigrants and refugees to the United States exhibit lower dietary quality than the general population, but reasons for this disparity are poorly understood. In this study, we describe the meanings of food, health and wellbeing through the reported dietary preferences, beliefs, and practices of adults and adolescents from four immigrant and refugee communities in the Midwestern United States. METHODS: Using a community based participatory research approach, we conducted a qualitative research study with 16 audio-recorded focus groups with adults and adolescents who self-identified as Mexican, Somali, Cambodian, and Sudanese. Focus group topics were eating patterns, perceptions of healthy eating in the country of origin and in the U.S., how food decisions are made and who in the family is involved in food preparation and decisions, barriers and facilitators to healthy eating, and gender and generational differences in eating practices. A team of investigators and community research partners analyzed all transcripts in full before reducing data to codes through consensus. Broader themes were created to encompass multiple codes. RESULTS: Results show that participants have similar perspectives about the barriers (personal, environmental, structural) and benefits of healthy eating (e.g., 'junk food is bad'). We identified four themes consistent across all four communities: Ways of Knowing about Healthy Eating ('Meanings;' 'Motivations;' 'Knowledge Sources'), Eating Practices ('Family Practices;' 'Americanized Eating Practices' 'Eating What's Easy'), Barriers ('Taste and Cravings;' 'Easy Access to Junk Food;' 'Role of Family;' Cultural Foods and Traditions;' 'Time;' 'Finances'), and Preferences for Intervention ('Family Counseling;' Community Education;' and 'Healthier Traditional Meals.'). Some generational (adult vs. adolescents) and gender differences were observed. CONCLUSIONS: Our study demonstrates how personal, structural, and societal/cultural factors influence meanings of food and dietary practices across immigrant and refugee populations. We conclude that cultural factors are not fixed variables that occur independently from the contexts in which they are embedded.


Asunto(s)
Conducta Alimentaria/etnología , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Adolescente , Adulto , Anciano , Niño , Conducta de Elección , Investigación Participativa Basada en la Comunidad , Cultura , Emigrantes e Inmigrantes , Femenino , Preferencias Alimentarias/etnología , Educación en Salud , Humanos , Masculino , Americanos Mexicanos , Persona de Mediana Edad , Refugiados , Características de la Residencia , Factores Socioeconómicos , Somalia , Estados Unidos , Adulto Joven
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