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1.
Trials ; 22(1): 734, 2021 Oct 23.
Artigo em Inglês | MEDLINE | ID: mdl-34688297

RESUMO

BACKGROUND: The public health crises that emerged in the COVID-19 pandemic significantly impacted the provision of medical care and placed sudden restrictions on ongoing clinical research. Patient-facing clinical research confronted unique challenges in which recruitment and study protocols were halted and then adapted to meet safety procedures during the pandemic. Our study protocol included the use of a Lung Cancer Screening Decision Tool (LCSDecTool) in the context of a primary care visit and was considerably impacted by the pandemic. We describe our experience adapting a multi-site clinical trial of the LCSDecTool within the Department of Veterans Affairs Health Care System. We conducted a randomized controlled trial (RCT) comparing the LCSDecTool to a control intervention. Outcomes included lung cancer screening (LCS) knowledge, shared decision-making, and uptake and adherence to LCS protocol. We identified three strategies that led to the successful adaptation of the study design during the pandemic: (1) multi-level coordination and communication across the organization and study sites, (2) flexibility and adaptability in research during a time of uncertainty and changes in regulation, and (3) leveraging technology to deliver the intervention and conduct study visits, which raised issues concerning equity and internal and external validity. CONCLUSION: Our experience highlights strategies successfully employed to adapt an intervention and behavioral research study protocol during the COVID-19 pandemic. This experience will inform clinical research moving forward both during and subsequent to the constraints placed on research and clinical care during the COVID-19 pandemic.


Assuntos
COVID-19 , Pandemias , Humanos , Internet , Estudos Longitudinais , SARS-CoV-2
2.
JCO Oncol Pract ; : OP2100312, 2021 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-34524837

RESUMO

PURPOSE: Patients weigh competing priorities when deciding whether to travel to a cellular therapy center for treatment. We conducted a choice-based conjoint analysis to determine the relative value they place on clinical factors, oncologist continuity, and travel time under different post-treatment follow-up arrangements. We also evaluated for differences in preferences by sociodemographic factors. METHODS: We administered a survey in which patients with diffuse large B-cell lymphoma selected treatment plans between pairs of hypothetical options that varied in travel time, follow-up arrangement, oncologist continuity, 2-year overall survival, and intensive care unit admission rate. We determined importance weights (which represent attributes' value to participants) using generalized estimating equations. RESULTS: Three hundred and two patients (62%) responded. When all follow-up care was at the center providing treatment, plans requiring longer travel times were less attractive (v 30 minutes, importance weights [95% CI] of -0.54 [-0.80 to -0.27], -0.57 [-0.84 to -0.29], and -0.17 [-0.49 to 0.14] for 60, 90, and 120 minutes). However, the negative impact of travel on treatment plan choice was mitigated by offering shared follow-up (importance weights [95% CI] of 0.63 [0.33 to 0.93], 0.32 [0.08 to 0.57], and 0.26 [0.04 to 0.47] at 60, 90, and 120 minutes). Black participants were less likely to choose plans requiring longer travel, regardless of follow-up arrangement, as indicated by lower value importance weights for longer travel times. CONCLUSION: Reducing travel burden through shared follow-up may increase patients' willingness to travel to receive cellular therapies, but additional measures are required to facilitate equitable access.

3.
JAMA Netw Open ; 4(7): e2118801, 2021 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-34323984

RESUMO

Importance: Although racial disparities in acute pain control are well established, the role of patient analgesic preference and the factors associated with these disparities remain unclear. Objective: To characterize racial disparities in opioid prescribing for acute pain after accounting for patient preference and to test the hypothesis that racial disparities may be mitigated by giving clinicians additional information about their patients' treatment preferences and risk of opioid misuse. Design, Setting, and Participants: This study is a secondary analysis of data collected from Life STORRIED (Life Stories for Opioid Risk Reduction in the ED), a multicenter randomized clinical trial conducted between June 2017 and August 2019 in the emergency departments (EDs) of 4 academic medical centers. Participants included 1302 patients aged 18 to 70 years who presented to the ED with ureter colic or musculoskeletal back and/or neck pain. Interventions: The treatment arm was randomized to receive a patient-facing intervention (not examined in this secondary analysis) and a clinician-facing intervention that consisted of a form containing information about each patient's analgesic treatment preference and risk of opioid misuse. Main Outcomes and Measures: Concordance between patient preference for opioid-containing treatment (assessed before ED discharge) and receipt of an opioid prescription at ED discharge. Results: Among 1302 participants in the Life STORRIED clinical trial, 1012 patients had complete demographic and treatment preference data available and were included in this secondary analysis. Of those, 563 patients (55.6%) self-identified as female, with a mean (SD) age of 40.8 (14.1) years. A total of 455 patients (45.0%) identified as White, 384 patients (37.9%) identified as Black, and 173 patients (17.1%) identified as other races. After controlling for demographic characteristics and clinical features, Black patients had lower odds than White patients of receiving a prescription for opioid medication at ED discharge (odds ratio [OR], 0.42; 95% CI, 0.27-0.65). When patients who did and did not prefer opioids were considered separately, Black patients continued to have lower odds of being discharged with a prescription for opioids compared with White patients (among those who preferred opioids: OR, 0.43 [95% CI, 0.24-0.77]; among those who did not prefer opioids: OR, 0.45 [95% CI, 0.23-0.89]). These disparities were not eliminated in the treatment arm, in which clinicians were given additional data about their patients' treatment preferences and risk of opioid misuse. Conclusions and Relevance: In this secondary analysis of data from a randomized clinical trial, Black patients received different acute pain management than White patients after patient preference was accounted for. These disparities remained after clinicians were given additional patient-level data, suggesting that a lack of patient information may not be associated with opioid prescribing disparities. Trial Registration: ClinicalTrials.gov Identifier: NCT03134092.

4.
JMIR Form Res ; 5(7): e22510, 2021 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-34259162

RESUMO

BACKGROUND: Many newly diagnosed cancers are associated with modifiable lifestyle behaviors, such as diet, exercise, smoking cessation, and maintaining a healthy weight. However, primary care providers rarely discuss cancer prevention behaviors with their patients. OBJECTIVE: This study aims to assess the usability, acceptability, and user engagement of the Healthier Together mobile app, which is designed to promote cancer prevention behaviors among non-Hispanic Black primary care patients, by using social networks and goal-setting theories of behavior change. METHODS: In an 8-week pilot study, we enrolled primary care patients (N=41) and provided them with a cancer prevention mobile app that allowed them to select, track, and share progress on cancer prevention goals with other users. App usability was assessed using the System Usability Scale. We assessed the app's acceptability by qualitatively analyzing open-ended responses regarding participants' overall experience with the app. We assessed participants' engagement by analyzing the built-in data capture device, which included the number of times participants checked in (out of a maximum of 8) during the study. RESULTS: The mean age of the 41 participants was 51 years (SD 12), and 76% (31/41) were women. App use data were captured from all participants, and 83% (34/41) completed the exit survey and interview. The mean System Usability Scale score was 87 (SD 12; median 90; IQR 78-95). The analysis of open-ended responses revealed several key themes, and participants complemented the app's ease of use and health behavior-promoting features while also commenting on the need for more feedback and social interactions through the app. On average, participants checked in 5.7 times (SD 2.7) out of 8 possible opportunities. Of the 41 participants, 76% (31/41) checked in during at least 4 of the 8 weeks. Secondary analyses revealed that participants often accomplished their set goals (mean 5.1, SD 2.7) for each week. The qualitative analysis of comments given by participants within the app after each weekly check-in revealed several themes on how the app assisted participants in behavioral change, highlighting that some participants created exercise programs, ate healthier foods, lost a significant amount of weight, and stopped smoking during this study. CONCLUSIONS: The implementation of a mobile cancer prevention goal-setting app in a primary care setting was feasible, and the app achieved high usability, acceptability, and engagement among participants. User feedback revealed an influence on health behaviors. These findings suggest the promise of the Healthier Together app in facilitating behavioral change to reduce cancer risk among non-Hispanic Black primary care patients.

5.
J Cancer Educ ; 2021 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-33904119

RESUMO

Patient-physician concordance about topics discussed in a clinic visit is essential for effective communication but may be difficult to achieve in cancer care. We conducted a multicenter, observational study at two Midwestern oncology clinics. A sample of 48 English-speaking or Spanish-speaking women with newly diagnosed stage 0-3 breast cancer completed surveys before and after a visit with an oncologist. Patient-physician dyads were coded as concordant if both patient and physician follow-up self-reports agreed whether (or not) specific treatments were discussed (i.e., treatment option concordance; mastectomy, lumpectomy, hormone therapy, neoadjuvant, and adjuvant chemotherapy) and whether risk was described using certain quantitative formats (i.e., quantitative format concordance; percentages, proportions out of 100 and 1000, graphs, pictures, evidence from clinical studies, cancer stage). Agreement was determined using percent agreement and prevalence-adjusted bias-adjusted kappa (PABAK). Pearson's correlations were used to determine relationships between anxiety and each measure concordance. Percent concordance was higher for treatment concordance (73.3%) compared to quantitative format concordance (64.5%), and PABAK scores tended to be higher for treatment options (PABAK = .21-.78). Both treatment and quantitative format concordance were negatively associated with pre-visit state anxiety, but only treatment concordance was statistically significant (treatment: r = - .504, p = .001; quantitative format: r = - .096, p = .523). Our study indicates moderate patient-physician concordance in early breast cancer care communication and that patient anxiety may impact the ability for patients and physicians to agree on the content communicated in a clinic visit.

6.
Med Decis Making ; 41(3): 317-328, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33554740

RESUMO

BACKGROUND: A shared decision-making (SDM) process for lung cancer screening (LCS) includes a discussion between clinicians and patients about benefits and potential harms. Expert-driven taxonomies consider mortality reduction a benefit and consider false-positives, incidental findings, overdiagnosis, overtreatment, radiation exposure, and direct and indirect costs of LCS as potential harms. OBJECTIVE: To explore whether patients conceptualize the attributes of LCS differently from expert-driven taxonomies. DESIGN: Cross-sectional study with semistructured interviews and a card-sort activity. PARTICIPANTS: Twenty-three Veterans receiving primary care at a Veterans Affairs Medical Center, 55 to 73 y of age with 30 or more pack-years of smoking. Sixty-one percent were non-Hispanic African American or Black, 35% were non-Hispanic White, 4% were Hispanic, and 9% were female. APPROACH: Semistructured interviews with thematic coding. MAIN MEASURES: The proportion of participants categorizing each attribute as a benefit or harm and emergent themes that informed this categorization. KEY RESULTS: In addition to categorizing reduced lung cancer deaths as a benefit (22/23), most also categorized the following as benefits: routine annual screening (8/9), significant incidental findings (20/23), follow-up in a nodule clinic (20/23), and invasive procedures (16/23). Four attributes were classified by most participants as a harm: false-positive (13/22), overdiagnosis (13/23), overtreatment (6/9), and radiation exposure (20/22). Themes regarding the evaluation of LCS outcomes were 1) the value of knowledge about body and health, 2) anticipated positive and negative emotions, 3) lack of clarity in terminology, 4) underlying beliefs about cancer, and 5) risk assessment and tolerance for uncertainty. CONCLUSIONS: Anticipating discordance between patient- and expert-driven taxonomies of the benefits and harms of LCS can inform the development and interpretation of value elicitation and SDM discussions.


Assuntos
Detecção Precoce de Câncer , Neoplasias Pulmonares , Adulto , Estudos Transversais , Tomada de Decisões , Feminino , Humanos , Neoplasias Pulmonares/diagnóstico por imagem , Programas de Rastreamento
8.
Gynecol Oncol ; 160(1): 3-9, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33243442

RESUMO

OBJECTIVE: To assess whether the number of practice sites per gynecologic oncologist (GO) and geographic access to GOs has changed over time. METHODS: This is a retrospective repeated cross-sectional study using the 2015-2019 Physician Compare National File. All GOs in the 50 United States and Washington, DC, who had completed at least one year of practice were included in the study. All practice sites with complete addresses were included. Linear regression analyses estimated trends in GOs' number of practice sites and geographic dispersion of practice sites. Secondary analyses assessed temporal trends in the number of geographic areas served by at least one GO. RESULTS: Although there was no significant change in the number of GOs from 2015 to 2019 (n = 1328), there was a significant increase in the number of practice sites (881 to 1416, p = 0.03), zip codes (642 to 984, p = 0.03), HSAs (404 to 536, p = 0.04), and HRRs (218 to 230, p = 0.03) containing a GO practice. The mean number of practice sites (1.64 versus 2.13, p < 0.001) and dispersion of practice sites (0.03 versus 0.43 miles, p = 0.049) per GO increased significantly. CONCLUSIONS: Between 2015 and 2019, an increasing number of GOs have multi-site practices, and more geographic regions contain a GO practice. Improvements in geographic access to GOs may represent improved access to care for many women in the US, but its effect on patients, physicians, and geographic disparities is unknown.


Assuntos
Atenção à Saúde/organização & administração , Atenção à Saúde/estatística & dados numéricos , Neoplasias dos Genitais Femininos/terapia , Ginecologia/organização & administração , Oncologia/organização & administração , Padrões de Prática Médica/estatística & dados numéricos , Estudos Transversais , Feminino , Ginecologia/estatística & dados numéricos , Acesso aos Serviços de Saúde/estatística & dados numéricos , Humanos , Oncologia/estatística & dados numéricos , Padrões de Prática Médica/organização & administração , Estudos Retrospectivos , Estados Unidos
9.
J Hosp Med ; 16(6): 326-332, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33357321

RESUMO

BACKGROUND: A critical task of the inpatient interprofessional team is readying patients for discharge. Assessment of shared mental model (SMM) convergence can determine how much team members agree about patient discharge readiness and how their mental models align with the patient's self-assessment. OBJECTIVE: Determine the convergence of interprofessional team SMMs of hospital discharge readiness and identify factors associated with these assessments. DESIGN: We surveyed interprofessional discharging teams and each team's patient at time of hospital discharge using validated tools to capture their SMMs. PARTICIPANTS: Discharge events (N = 64) from a single hospital consisting of the patient and their team (nurse, coordinator, physician). MEASURES: Clinician and patient versions of the validated Readiness for Hospital Discharge Scales/Short Form (RHDS/SF). We measured team convergence by comparing the individual clinicians' scores on the RHDS/SF, and we measured team-patient convergence as the absolute difference between the Patient-RHDS/SF score and the team average score on the Clinician-RHDS/SF. RESULTS: Discharging teams assessed patients as having high readiness for hospital discharge (mean score, 8.5 out of 10; SD, 0.91). The majority of teams had convergent SMMs with high to very high interrater agreement on discharge readiness (mean r*wg(J), 0.90; SD, 0.10). However, team-patient SMM convergence was low: Teams overestimated the patient's self-assessment of readiness for discharge in 48.4% of events. We found that teams reporting higher-quality teamwork (P = .004) and bachelor's level-trained nurses (P < .001) had more convergent SMMs with the patient. CONCLUSION: Measuring discharge teams' SMM of patient discharge readiness may represent an innovative assessment tool and potential lever to improve the quality of care transitions.


Assuntos
Hospitais , Alta do Paciente , Humanos , Modelos Psicológicos , Equipe de Assistência ao Paciente , Autoavaliação (Psicologia) , Inquéritos e Questionários
10.
JMIR Res Protoc ; 9(9): e19496, 2020 Sep 24.
Artigo em Inglês | MEDLINE | ID: mdl-32969832

RESUMO

BACKGROUND: Prescription opioid misuse in the United States is a devastating public health crisis; many chronic opioid users were originally prescribed this class of medication for acute pain. Video narrative-enhanced risk communication may improve patient outcomes, such as knowledge of opioid risk and opioid use behaviors after an episode of acute pain. OBJECTIVE: Our objective is to assess the effect of probabilistic and narrative-enhanced opioid risk communication on patient-reported outcomes, including knowledge, opioid use, and patient preferences, for patients who present to emergency departments with back pain and kidney stone pain. METHODS: This is a multisite randomized controlled trial. Patients presenting to the acute care facilities of four geographically and ethnically diverse US hospital centers with acute renal colic pain or musculoskeletal back and/or neck pain are eligible for this randomized controlled trial. A control group of patients receiving general risk information is compared to two intervention groups: one receiving the risk information sheet plus an individualized, visual probabilistic Opioid Risk Tool (ORT) and another receiving the risk information sheet plus a video narrative-enhanced probabilistic ORT. We will study the effect of probabilistic and narrative-enhanced opioid risk communication on the following: risk awareness and recall at 14 days postenrollment, reduced use or preferences for opioids after the emergency department episode, and alignment with patient preference and provider prescription. To assess these outcomes, we administer baseline patient surveys during acute care admission and follow-up surveys at predetermined times during the 3 months after discharge. RESULTS: A total of 1302 patients were enrolled over 24 months. The mean age of the participants was 40 years (SD 14), 692 out of 1302 (53.15%) were female, 556 out of 1302 (42.70%) were White, 498 out of 1302 (38.25%) were Black, 1002 out of 1302 (76.96%) had back pain, and 334 out of 1302 (25.65%) were at medium or high risk. Demographics and ORT scores were equally distributed across arms. CONCLUSIONS: This study seeks to assess the potential clinical role of narrative-enhanced, risk-informed communication for acute pain management in acute care settings. This paper outlines the protocol used to implement the study and highlights crucial methodological, statistical, and stakeholder involvement as well as dissemination considerations. TRIAL REGISTRATION: ClinicalTrials.gov NCT03134092; https://clinicaltrials.gov/ct2/show/NCT03134092. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/19496.

11.
Med Decis Making ; 40(5): 633-643, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32532169

RESUMO

Background. Patients may find clinical prediction models more useful if those models accounted for preferences for false-positive and false-negative predictive errors and for other model characteristics. Methods. We conducted a discrete choice experiment to compare preferences for characteristics of a hypothetical mortality prediction model among community-dwelling patients with chronic lung disease recruited from 3 clinics in Philadelphia. This design was chosen to allow us to quantify "exchange rates" between different characteristics of a prediction model. We provided previously validated educational modules to explain model attributes of sensitivity, specificity, confidence intervals (CI), and time horizons. Patients reported their interest in using prediction models themselves or having their physicians use them. Patients then chose between 2 hypothetical prediction models each containing varying levels of the 4 attributes across 12 tasks. Results. We completed interviews with 200 patients, among whom 95% correctly chose a strictly dominant model in an internal validity check. Patients' interest in predictive information was high for use by themselves (n = 169, 85%) and by their physicians (n = 184, 92%). Interest in maximizing sensitivity and specificity were similar (0.88 percentage points of specificity equivalent to 1 point of sensitivity, 95% CI 0.72 to 1.05). Patients were willing to accept a reduction of 6.10 months (95% CI 3.66 to 8.54) in the predictive time horizon for a 1% increase in specificity. Discussion. Patients with chronic lung disease can articulate their preferences for the characteristics of hypothetical mortality prediction models and are highly interested in using such models as part of their care. Just as clinical care should become more patient centered, so should the characteristics of predictive models used to guide that care.


Assuntos
Comportamento de Escolha , Comportamento do Consumidor , Doenças Respiratórias/psicologia , Adulto , Doença Crônica/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças Respiratórias/complicações , Inquéritos e Questionários
12.
Policy Polit Nurs Pract ; 21(3): 140-150, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32397804

RESUMO

The 2012 implementation of the Patient Protection and Affordable Care Act (ACA) contraceptive coverage mandate removed financial barriers to contraception access for many insured women. Since that time, increases in sexually transmitted disease (STD) rates have been noted, particularly among Black adolescent and young adult women aged 15 to 24 years. It is unclear whether changes in dual-method contraception use (simultaneous use of nonbarrier contraceptive methods and condoms) are associated with the increase in STD rates. A repeated cross-sectional analysis was conducted among adolescent and young adult women to compare pre-ACA data from the 2006-2010 cohort and post-ACA data from the 2013-2015 cohort of the National Survey for Family Growth. A significant decrease in short-acting reversible contraception use (SARC; 78.2% vs. 67.5%; p < .01) and a significant increase in long-acting reversible contraception use (LARC; 8.9% vs. 21.8%; p < .01) were found, but no significant change in dual-method contraception use was found among pre- versus post-ACA SARC users and SARC nonusers (odds ratio [OR]: 1.88, 95% confidence interval [CI]: 0.64-5.46, p = .25), LARC users and LARC nonusers (adjusted odds ratio [AOR]: 1.62, 95% CI: 0.42-6.18, p = .48), or White and Black women (AOR: 1.45, 95% CI: 0.66-3.18, p = .35). There was no direct association between changes in contraception use and decreased condom use and therefore no indirect association between changes in contraception use and increased STD rates. Health care providers should continue promoting consistent condom use. Additional research is needed to understand recent increases in STD rates among Black women in the post-ACA era.


Assuntos
Preservativos/estatística & dados numéricos , Comportamento Contraceptivo/psicologia , Comportamento Contraceptivo/estatística & dados numéricos , Anticoncepção/estatística & dados numéricos , Cobertura do Seguro/estatística & dados numéricos , Contracepção Reversível de Longo Prazo/estatística & dados numéricos , Patient Protection and Affordable Care Act/estatística & dados numéricos , Adolescente , Adulto , Preservativos/economia , Anticoncepção/economia , Estudos Transversais , Feminino , Humanos , Cobertura do Seguro/economia , Contracepção Reversível de Longo Prazo/economia , Masculino , Patient Protection and Affordable Care Act/economia , Estados Unidos , Adulto Jovem
13.
Cancer ; 126(15): 3471-3482, 2020 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-32453441

RESUMO

BACKGROUND: Approximately 50% of children with cancer in the United States who are aged <15 years receive primary treatment on a therapeutic clinical trial. To the authors' knowledge, it remains unknown whether trial enrollment has a clinical benefit compared with the best alternative standard therapy and/or off trial (ie, clinical trial effect). The authors conducted a retrospective matched cohort study to compare the morbidity and mortality of pediatric patients with cancer who are treated on a phase 3 clinical trial compared with those receiving standard therapy and/or off trial. METHODS: Subjects were aged birth to 19 years; were diagnosed between 2000 and 2010 with acute lymphocytic leukemia (ALL), acute myeloid leukemia (AML), rhabdomyosarcoma, or neuroblastoma; and had received initial treatment at the Children's Hospital of Philadelphia. On-trial and off-trial subjects were matched based on age, race, ethnicity, a diagnosis of Down syndrome (for patients with ALL or AML), prognostic risk level, date of diagnosis, and tumor type. RESULTS: A total of 428 participants were matched in 214 pairs (152 pairs for ALL, 24 pairs for AML, 32 pairs for rhabdomyosarcoma, and 6 pairs for neuroblastoma). The 5-year survival rate did not differ between those treated on trial versus those treated with standard therapy and/or off trial (86.9% vs 82.2%; P = .093). On-trial patients had a 32% lower odds of having worse (higher) mortality-morbidity composite scores, although this did not reach statistical significance (odds ratio, 0.68; 95% confidence interval, 0.45-1.03 [P = .070]). CONCLUSIONS: There was no statistically significant difference in outcomes noted between those patients treated on trial and those treated with standard therapy and/or off trial. However, in partial support of the clinical trial effect, the results of the current study indicate a trend toward more favorable outcomes in children treated on trial compared with those treated with standard therapy and/or off trial. These findings can support decision making regarding enrollment in pediatric phase 3 clinical trials.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Neoplasias/tratamento farmacológico , Pediatria , Prognóstico , Adolescente , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Criança , Pré-Escolar , Estudos de Coortes , Intervalo Livre de Doença , Feminino , Humanos , Lactente , Leucemia Mieloide Aguda/tratamento farmacológico , Leucemia Mieloide Aguda/epidemiologia , Leucemia Mieloide Aguda/patologia , Masculino , Neoplasias/epidemiologia , Neoplasias/patologia , Neuroblastoma/tratamento farmacológico , Neuroblastoma/epidemiologia , Neuroblastoma/patologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/patologia , Estudos Retrospectivos , Rabdomiossarcoma/tratamento farmacológico , Rabdomiossarcoma/epidemiologia , Rabdomiossarcoma/patologia , Resultado do Tratamento , Estados Unidos/epidemiologia , Adulto Jovem
14.
BMC Health Serv Res ; 20(1): 178, 2020 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-32143649

RESUMO

BACKGROUND: Patients' understanding of the hemoglobin A1c (HbA1c) has been linked to better diabetes care outcomes (glycemic control, self-care). This is concerning given low documented rates of HbA1c understanding. In this non-blinded, randomized trial, we compared two formats for communicating the HbA1c, selected based on input from people with diabetes, to standard presentation to assess their impact on participants' glycemic control and diabetes-related perceptions. METHODS: To design the tested formats, we interviewed 25 patients with diabetes and reviewed a range of possible formats, including color-based scales and graphs. The interviews were recorded, transcribed, and subjected to thematic analysis. Synthesizing interviewees' feedback, we selected two formats, one using a combination of words and colors (Words) and one using a color-coded graph (Graph), for further evaluation. We then randomized adults with poorly controlled diabetes to receive mailed information on their current diabetes control in one of three ways: 1) standard lab report (control), 2) Words format, or 3) Graph format. The primary outcome was HbA1c change at 6 months. Also examined were changes in participants' diabetes-related perceptions and choice of participation incentive. RESULTS: Of the 234 enrolled participants, 76.9% were Black, and their median baseline HbA1c was 9.1% (interquartile range 8.4-10.4). There were no between-arm differences in HbA1c change (- 1.04% [SD 2.2] Control vs. -0.59% [SD 2.0] Words vs. -0.54% [SD 2.1] Graph, p > 0.05 for all comparisons). Participants in the Words arm had an increase in the accuracy of their perceptions of diabetes seriousness (p = 0.04) and in the number of participants reporting a diabetes management goal (p = 0.01). CONCLUSIONS: The two patient-informed communication formats did not differentially impact glycemic control among adults with inadequately controlled diabetes. However, a significant proportion of participants in the Words arm had an increase in the accuracy of their perception of diabetes seriousness, a potential mediating factor in positive diabetes-related behavioral changes. With increasing use of patient-facing online portals, thoughtfully designed approaches for visually communicating essential, but poorly understood, information like the HbA1c to patients have the potential to facilitate interpretation and support self-management. CLINICAL TRIAL REGISTRATION: Prospectively registered as NCT01886170.


Assuntos
Visualização de Dados , Diabetes Mellitus/terapia , Hemoglobina A Glicada/análise , Educação de Pacientes como Assunto/métodos , Idoso , Comunicação , Diabetes Mellitus/sangue , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Portais do Paciente , Relações Médico-Paciente , Pesquisa Qualitativa
15.
Pediatr Blood Cancer ; 67(5): e28227, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32065500

RESUMO

BACKGROUND: Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy associated with morbidity and mortality. We sought to understand family planning intentions of parents of young children with SCD including the awareness of three reproductive options (adoption, in vitro fertilization with egg/sperm donation [IVFD], in vitro fertilization [IVF] with preimplantation genetic testing [IVF/PGT]) to decrease the risk of having a child with SCD. PROCEDURE: Qualitative, semistructured, one-on-one interviews with 18 female parents of young children with SCD at an urban, tertiary care pediatric hospital. RESULTS: Half of the parents knew their hemoglobinopathy status or their partner's status before pregnancy. Eight parents chose to have no further children because of fear of SCD in another child. Awareness of reproductive options prior to study enrollment was limited. After brief introduction, 7 parents would consider adoption, 2 IVFD, and 10 IVF/PGT. Desire for a biological child, fear of parental jealousy, ethical or religious considerations, and cost affected the acceptability of these options. Participants universally wanted information about reproductive options available to others prior to pregnancy. CONCLUSIONS: There is limited awareness and variable acceptability of alternative reproductive options available to decrease the risk of a future child having SCD. Participants universally endorsed the need for education regarding hemoglobinopathy status, SCD, and reproductive options prior to pregnancy because for many participants having a child with SCD affected their reproductive intentions. Educational interventions to ensure informed reproductive decision making should be sensitive to desires for a biological child, and ethical and financial considerations.


Assuntos
Anemia Falciforme , Testes Genéticos , Intenção , Mães , Reprodução , Adulto , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino
16.
J Hum Lact ; 36(1): 64-73, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31770049

RESUMO

BACKGROUND: Although breastfeeding is a major public health priority and provides numerous benefits, women veterans encounter many barriers to initiating and sustaining breastfeeding. Women veterans are a growing population with unique health care needs related to exposures and injuries experienced during military service. These military experiences are linked to health diagnoses known to impact postpartum health behaviors, such as breastfeeding. RESEARCH AIM: The aim of this study was to identify factors associated with breastfeeding at 4 weeks postpartum among women veterans. METHODS: We used 2016-to-2018 survey data from women veterans (N = 420), interviewed before and after delivery, who were enrolled in maternity care coordination at a national sample of Veterans Health Administration facilities. Using the social ecological model, logistic regression was employed to explore the relationship between breastfeeding at least 4 weeks and postpartum and maternal/infant characteristics, interpersonal dynamics, community influences, and system factors. RESULTS: The rate of breastfeeding at 4 weeks postpartum was 78.6% among this sample of veterans. Self-employed participants were 2.8 times more likely to breastfeed than those who were employed outside the home. Participants who had been deployed at any point in their military career were twice as likely to breastfeed compared with those who never deployed. In this study sample, race independently predicted lower rates of breastfeeding, with African American participants being 48% less likely to breastfeed as compared with white participants. CONCLUSION: Our analysis suggests significant racial disparities in breastfeeding within veteran populations utilizing Veterans Health Administration, despite access to multiple sources of support from both the Veterans Health Administration and the community.


Assuntos
Aleitamento Materno/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Veteranos/estatística & dados numéricos , Adulto , Aleitamento Materno/métodos , Estudos Transversais , Feminino , Humanos , Cuidado Pós-Natal/estatística & dados numéricos , Estados Unidos , United States Department of Veterans Affairs/organização & administração , United States Department of Veterans Affairs/estatística & dados numéricos
18.
J Natl Cancer Inst ; 112(3): 238-246, 2020 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-31292633

RESUMO

BACKGROUND: Cancer screening is a complex process encompassing risk assessment, the initial screening examination, diagnostic evaluation, and treatment of cancer precursors or early cancers. Metrics that enable comparisons across different screening targets are needed. We present population-based screening metrics for breast, cervical, and colorectal cancers for nine sites participating in the Population-based Research Optimizing Screening through Personalized Regimens consortium. METHODS: We describe how selected metrics map to a trans-organ conceptual model of the screening process. For each cancer type, we calculated calendar year 2013 metrics for the screen-eligible target population (breast: ages 40-74 years; cervical: ages 21-64 years; colorectal: ages 50-75 years). Metrics for screening participation, timely diagnostic evaluation, and diagnosed cancers in the screened and total populations are presented for the total eligible population and stratified by age group and cancer type. RESULTS: The overall screening-eligible populations in 2013 were 305 568 participants for breast, 3 160 128 for cervical, and 2 363 922 for colorectal cancer screening. Being up-to-date for testing was common for all three cancer types: breast (63.5%), cervical (84.6%), and colorectal (77.5%). The percentage of abnormal screens ranged from 10.7% for breast, 4.4% for cervical, and 4.5% for colorectal cancer screening. Abnormal breast screens were followed up diagnostically in almost all (96.8%) cases, and cervical and colorectal were similar (76.2% and 76.3%, respectively). Cancer rates per 1000 screens were 5.66, 0.17, and 1.46 for breast, cervical, and colorectal cancer, respectively. CONCLUSIONS: Comprehensive assessment of metrics by the Population-based Research Optimizing Screening through Personalized Regimens consortium enabled systematic identification of screening process steps in need of improvement. We encourage widespread use of common metrics to allow interventions to be tested across cancer types and health-care settings.


Assuntos
Neoplasias da Mama/diagnóstico , Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/estatística & dados numéricos , Neoplasias do Colo do Útero/diagnóstico , Adulto , Idoso , Neoplasias da Mama/epidemiologia , Neoplasias Colorretais/epidemiologia , Detecção Precoce de Câncer/métodos , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Estados Unidos/epidemiologia , Neoplasias do Colo do Útero/epidemiologia , Adulto Jovem
19.
Popul Health Manag ; 23(3): 243-255, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31660789

RESUMO

Collaboration among diverse stakeholders involved in the value transformation of health care requires consistent use of terminology. The objective of this study was to reach consensus definitions for the terms value-based care, value-based payment, and population health. A modified Delphi process was conducted from February 2017 to July 2017. An in-person panel meeting was followed by 3 rounds of surveys. Panelists anonymously rated individual components of definitions and full definitions on a 9-point Likert scale. Definitions were modified in an iterative process based on results of each survey round. Participants were a panel of 18 national leaders representing population health, health care delivery, academic medicine, payers, patient advocacy, and health care foundations. Main measures were survey ratings of definition components and definitions. At the conclusion of round 3, consensus was reached on the following definition for value-based payment, with 13 of 18 panelists (72.2%) assigning a high rating (7- 9) and 1 of 18 (5.6%) assigning a low rating (1-3): "Value-based payment aligns reimbursement with achievement of value-based care (health outcomes/cost) in a defined population with providers held accountable for achieving financial goals and health outcomes. Value-based payment encourages optimal care delivery, including coordination across healthcare disciplines and between the health care system and community resources, to improve health outcomes, for both individuals and populations." The iterative process elucidated specific areas of agreement and disagreement for value-based care and population health but did not reach consensus. Policy makers cannot assume uniform interpretation of other concepts underlying health care reform efforts.


Assuntos
Consenso , Atenção à Saúde , Terminologia como Assunto , Aquisição Baseada em Valor , Técnica Delfos , Reforma dos Serviços de Saúde , Política de Saúde , Humanos
20.
MDM Policy Pract ; 4(2): 2381468319881651, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31696154

RESUMO

Background. Communication in the breast cancer treatment consultation is complex. Language barriers may increase the challenge of achieving patient-centered communication and effective shared decision making. Design. We conducted a prospective cohort study among Spanish- and English-speaking women with stage 0 to 3 breast cancer in two urban medical centers in the Midwestern United States. Patient centeredness of care and decisional conflict were compared between Spanish- and English-speaking participants using the Interpersonal Processes of Care (IPC) and Decision Conflict Scale (DCS), respectively. Clinician behaviors of shared decision making were assessed from consultation audio-recordings using the 12-item Observing Patient Involvement in Decision Making (OPTION) scale. Multivariate regression analyses were conducted to control for differences in baseline characteristics and clinician specialty. Results. Fifteen Spanish-speaking and 35 English-speaking patients were enrolled in the study. IPC scores (median, interquartile range [IQR]) were higher (less patient centered) in Spanish- versus English-speaking participants in the domains of lack of clarity (2.5, 1-3 v. 1.5, 1-2), P = 0.028; perceived discrimination (1.1, 1-1 v. 1.0, 1-1), P = 0.047; and disrespectful office staff (1.25, 1-2 v. 1.0, 1-1), P < 0.0005 (Wilcoxon rank-sum test). OPTION scores (median, IQR) were lower in Spanish- versus English-speaking participants (21.9, 17.7-27.1 v. 31.3, 26.6-39.6), P = 0.001 (Wilcoxon rank-sum test). In multivariate analysis, statistically significant differences persisted in the IPC lack of clarity and disrespectful office staff between Spanish- and English-speaking groups. Conclusions. Our findings highlight challenges in cancer communication for Spanish-speaking patients, particularly with respect to perceived patient centeredness of communication. Further cross-cultural studies are needed to ensure effective communication and shared decision making in the cancer consultation.

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