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The pancreatic ductal adenocarcinoma (PDAC) tumor microenvironment is distinguished by a high degree of fibrosis and inflammation, known as desmoplasia. Desmoplasia increases the stromal deposition and extracellular matrix (ECM) stiffness observed in the tumor microenvironment, contributing to the dampened penetration of pharmacological agents. The molecular and biophysical composition of the ECM during the earliest cellular changes in the development of PDAC, i.e. acinar ductal metaplasia (ADM), has not been extensively explored. We report that the mRNA expression of key protein components of the ECM increases during ADM in p48Cre/+;LSL-KrasG12D (KC) mouse acinar organoids cultured in Matrigel. Treatment of the organoids with small molecular weight epigenetic modulating compounds that inhibit or reverse ADM (largazole, FK228 and chaetocin) dramatically reduced the tissue mRNA expression of collagens, hyaluronan synthase, laminin and fibronectin. The storage moduli, determined by video tracking of fluorescent nanoparticles embedded into the Matrigel, increased during ADM and was reduced following treatment with the epigenetic modulating compounds. We report that the ECM of mouse organoids stiffens during ADM and is further enhanced by the presence of mutant Kras. Moreover, select HDAC and HMT inhibitors reduced the mRNA expression of ECM components and ECM stiffness during inhibition and reversal of ADM, suggesting that these compounds may be useful as adjuvants to enhance the tumor penetration of agents used to treat PDAC.
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BACKGROUND: This study aimed to validate a Composite Pain Index (CPI) as a single pain outcome measure for sickle cell disease (SCD) across the lifespan from 8 years of age. PROCEDURE: This prospective, cross-sectional study included 55 participants with SCD who completed the PAINReportIt tool and Adolescent Pediatric Pain Tool (APPT) in random order during outpatient visits to derive respective CPI scores for comparison. RESULTS: Of the 55 participants with SCD, 46 (84%) had HgbSS, eight (15%) HgbSC, and one (2%) HgbSß0+. The mean age of all participants was 17.5 ± 2.6 years, and 28 (51%) were female, 52 (95%) were Black, 42 (98%) were non-Hispanic, and 39 (71%) had a ninth grade or higher education. Correlation analyses between the APPT and PAINReportIt revealed positive associations for the number of pain sites (r = .57, p < .001), pain intensity (r = .46, p < .001), pain quality (r = .74, p < .001), and pain pattern (r = .34, p = .01). Patients' mean CPI scores derived from the PAINReportIt was slightly higher than the APPT; 34.2 (SD = 14.7) and 30.0 (SD = 19.0), respectively. Regression analyses showed that the APPT CPI significantly predicted the PAINReportIt CPI (B = .497, t(53) = 6.051, p < .001). This finding holds true even when accounting for the order of measurement or patient's age. CONCLUSION: The initial validation of CPI as a single pain outcome measure represents a significant advancement in pain assessment for SCD. Further validation is warranted for the CPI as a measure is for both clinicians and researchers to enable longitudinal pain assessment from age 8 years across the lifespan as children age into adult care.
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In our previous publication, we reported a framework to develop an undergraduate cancer research training program at Florida A&M University (FAMU) under the umbrella of the Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center activity by harnessing the resources available at FAMU, the University of Florida (UF), and the University of Southern California (USC) Cancer Centers. The implementation of the CaRE2 face-to-face training platform was dramatically affected by the COVID-19 pandemic during the summer of 2020 and 2021 training periods. However, a concerted effort was made to restructure the face-to-face training model into virtual and hybrid training methods to maintain the continuity of the program during the pandemic. This article compared the three methods to identify the best platform for training URM students in cancer disparity research. The program's effectiveness was measured through motivation, experiences, and knowledge gained by trainees during and one year after the completion of the program. The results showed that the participants were highly positive in their feedback about the professional and academic values of the program. Although the virtual and hybrid methods experienced significant challenges during the pandemic, the hybrid training module offered an "above average" effectiveness in performance, like the face-to-face mentoring platform in mentoring URM students in cancer disparity research.
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COVID-19 , Tutoria , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Tutoria/métodos , Florida , Neoplasias , Pesquisadores/educação , Feminino , SARS-CoV-2 , Pesquisa Biomédica/educação , California , Masculino , Grupos Minoritários/educação , Universidades , Educação a Distância/métodosRESUMO
The relationship between adaptive pain-coping skills, such as John Henryism, and pain and function remains unclear in non-Hispanic Black populations. This cross-sectional, observational study included sixty older Black men with low back pain in Jacksonville, Florida. Key measures were: self-reported 0-10 pain intensity in the past 24 h, 13-item pain catastrophizing, functional performance from the Back Performance Scale, and the John Henryism Active Coping Scale. Structural equation modeling was applied to 57 complete cases for analysis using R v4.2.0. There was a significant association for both John Henryism (ß = -0.320, p = .038) and pain catastrophizing (ß = 0.388, p = .007) with pain intensity but not functional performance (ß = -0.095, p = .552; ß = 0.274, p = .068, respectively) in the older Black men. The study underscores the future importance of evaluating John Henryism using longitudinal methods to explore causality with complex structural equation models among Black Americans.
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Adaptação Psicológica , Negro ou Afro-Americano , Dor Lombar , Humanos , Masculino , Dor Lombar/psicologia , Dor Lombar/etnologia , Idoso , Estudos Transversais , Florida , Negro ou Afro-Americano/psicologia , Estresse Psicológico , Catastrofização/psicologia , Autorrelato , Medição da DorRESUMO
OBJECTIVE: To characterize adolescents' practical knowledge of asthma self-management and experiences during acute asthma episodes, and compare practical knowledge between minority and non-minority groups. METHODS: We conducted a secondary analysis using a qualitative descriptive design of textual data collected from 126 adolescents that participated in a randomized controlled trial of an asthma self-management program. Directed content analysis was conducted using four constructs of asthma self-management including symptom prevention, symptom monitoring, acute symptom management, and symptom communication. RESULTS: Most of the adolescents knew how to prevent exercised-induced bronchoconstriction, but had limited understanding about how to assess and monitor the severity of acute symptoms, appropriately use bronchodilators, seek timely medical help, and communicate acute symptoms to caregivers or healthcare providers during a slow-onset and rapid-onset asthma attack. More minority participants monitored asthma using peak expiratory flow than non-minority participants, who often relied on symptom-based monitoring. Minority adolescents more frequently mentioned bronchodilator use to manage asthma attacks, while non-minority adolescents often reported use of complementary and alternative approaches. Minority youth mentioned accessing healthcare services for acute episodes more often than their non-minority counterparts. Minority participants mentioned communicating acute symptoms to their providers, or family members less frequently than non-minority youth. CONCLUSIONS: Adolescents have insufficient practical knowledge about ways to prevent and manage acute asthma. Periodic assessment of learning needs related to asthma attacks should be considered a routine part of clinical visits for adolescents to provide targeted information support to address their identified needs.
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Asma , Autogestão , Estado Asmático , Humanos , Adolescente , Asma/tratamento farmacológico , Estado Asmático/tratamento farmacológico , Família , Grupos Minoritários , Broncodilatadores/uso terapêuticoRESUMO
BACKGROUND: The proliferation of health care data in electronic health records (EHRs) is fueling the need for clinical decision support (CDS) that ensures accuracy and reduces cognitive processing and documentation burden. The CDS format can play a key role in achieving the desired outcomes. Building on our laboratory-based pilot study with 60 registered nurses (RNs) from 1 Midwest US metropolitan area indicating the importance of graph literacy (GL), we conducted a fully powered, innovative, national, and web-based randomized controlled trial with 203 RNs. OBJECTIVE: This study aimed to compare care planning time (CPT) and the adoption of evidence-based CDS recommendations by RNs randomly assigned to 1 of 4 CDS format groups: text only (TO), text+table (TT), text+graph (TG), and tailored (based on the RN's GL score). We hypothesized that the tailored CDS group will have faster CPT (primary) and higher adoption rates (secondary) than the 3 nontailored CDS groups. METHODS: Eligible RNs employed in an adult hospital unit within the past 2 years were recruited randomly from 10 State Board of Nursing lists representing the 5 regions of the United States (Northeast, Southeast, Midwest, Southwest, and West) to participate in a randomized controlled trial. RNs were randomly assigned to 1 of 4 CDS format groups-TO, TT, TG, and tailored (based on the RN's GL score)-and interacted with the intervention on their PCs. Regression analysis was performed to estimate the effect of tailoring and the association between CPT and RN characteristics. RESULTS: The differences between the tailored (n=46) and nontailored (TO, n=55; TT, n=54; and TG, n=48) CDS groups were not significant for either the CPT or the CDS adoption rate. RNs with low GL had longer CPT interacting with the TG CDS format than the TO CDS format (P=.01). The CPT in the TG CDS format was associated with age (P=.02), GL (P=.02), and comfort with EHRs (P=.047). Comfort with EHRs was also associated with CPT in the TT CDS format (P<.001). CONCLUSIONS: Although tailoring based on GL did not improve CPT or adoption, the study reinforced previous pilot findings that low GL is associated with longer CPT when graphs were included in care planning CDS. Higher GL, younger age, and comfort with EHRs were associated with shorter CPT. These findings are robust based on our new innovative testing strategy in which a diverse national sample of RN participants (randomly derived from 10 State Board of Nursing lists) interacted on the web with the intervention on their PCs. Future studies applying our innovative methodology are recommended to cost-effectively enhance the understanding of how the RN's GL, combined with additional factors, can inform the development of efficient CDS for care planning and other EHR components before use in practice.
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Sistemas de Apoio a Decisões Clínicas , Enfermeiras e Enfermeiros , Adulto , Humanos , Internet , Projetos Piloto , Estados UnidosRESUMO
Patient-reported pain locations are critical for comprehensive pain assessment. Our study aim was to introduce an automated process for measuring the location and distribution of pain collected during a routine outpatient clinic visit. In a cross-sectional study, 116 adults with sickle cell disease-associated pain completed PAIN Report It â . This computer-based instrument includes a two-dimensional, digital body outline on which patients mark their pain location. Using the ImageJ software, we calculated the percentage of the body surface area marked as painful and summarized data with descriptive statistics and a pain frequency map. The painful body areas most frequently marked were the left leg-front (73%), right leg-front (72%), upper back (72%), and lower back (70%). The frequency of pain marks in each of the 48 body segments ranged from 3 to 79 (mean, 33.2 ± 21.9). The mean percentage of painful body surface area per segment was 10.8% ± 7.5% (ranging from 1.3% to 33.1%). Patient-reported pain locations can be easily analyzed from digital drawings using an algorithm created via the free ImageJ software. This method may enhance comprehensive pain assessment, facilitating research and personalized care over time for patients with various pain conditions.
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Algoritmos , Software , Adulto , Humanos , Estudos Transversais , Medidas de Resultados Relatados pelo PacienteRESUMO
BACKGROUND: Digital pain assessment is advantageous and timely for healthcare priorities in Turkey. However, a multi-dimensional, tablet-based pain assessment tool is not available in the Turkish language. PURPOSE: To validate the Turkish-PAINReportIt® as a multi-dimensional measure of post-thoracotomy pain. METHODS: In the first of a two-phased study, 32 Turkish patients (mean age 47.8 ± 15.6 years, 72 % male) participated in individual cognitive interviews as they completed the tablet-based Turkish-PAINReportIt® once during the first four days post-thoracotomy, and 8 clinicians participated in a focus group discussion of implementation barriers. In the second phase, 80 Turkish patients (mean age 59.0 ± 12.7 years, 80 % male) completed the Turkish-PAINReportIt® preoperatively, on postoperative days 1-4, and at the two-week post-operative follow-up visit. RESULTS: Patients generally interpreted accurately the Turkish-PAINReportIt® instructions and items. We eliminated some items unnecessary for daily assessment based on focus-group suggestions. In the second study phase, pain scores (intensity, quality, pattern) were low pre-thoracotomy for lung cancer and high postoperatively high on day 1, decreasing on days 2, 3 and 4, and back down to pre-surgical levels at 2-weeks. Over time, pain intensity decreased from post-operative day 1 to post-operative day 4 (p < .001) and from post-operative day 1 to post-operative week 2 (p < .001). CONCLUSIONS: The formative research supported proof of concept and informed the longitudinal study. Findings showed strong validity of the Turkish-PAINReportIt® to detect reduced pain over time as healing occurs after thoracotomy.
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Neoplasias Pulmonares , Toracotomia , Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Idoso , Feminino , Estudos Longitudinais , Turquia , Dor , Neoplasias Pulmonares/cirurgia , Idioma , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
The purpose of this paper is to describe physical function and performance scores and examine the relationships between measures of physical performance in older Black men with low back pain. The Mobility, Aging, Pain, and Disparities study used a cross-sectional, observational design to objectively measure physical performance on the Short Physical Performance Battery (SPPB), the Back Performance Scale (BPS), and the 400-meter Walk Test along with subjective ratings of pain intensity in the past 24 hours. Sixty community-based Black men aged 61-87 (xÌ= 70 ± 6) years had an average BPS score of 7.0 ± 4 and total score on the SPPB 8.5 ± 2.1. Average 400-meter Walk time was 6.3 ± 3.1 minutes. Men's average pain intensity in the past 24 hours was 5.7 ± 2, indicating moderate pain. In conclusion, older Black men with low back pain demonstrated low physical function scores and a higher level of disability.
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Pessoas com Deficiência , Dor Lombar , Idoso , Humanos , Masculino , Envelhecimento , Estudos Transversais , CaminhadaRESUMO
OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.
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AIM: Exercise can be an effective treatment for cancer-related fatigue, but exercise is not prescribed for many cancer patients. Our specific aim was to compare usual care and a tablet-based fatigue education and prescription program for effects on level of fatigue (primary outcome) and satisfaction with fatigue and amount of exercise (secondary outcomes). METHODS: In a four-week pretest/posttest randomized study, 279 patients with cancer completed a touch screen fatigue assessment and daily paper-based activity logs. The experimental group also had access to FatigueUCope, a tablet-based multimedia education intervention focused on exercise as therapy for fatigue. RESULTS: In total, 94% of intervention group accessed FatigueUCope. Controlling for baseline fatigue, compared to the usual-care group, the experimental group reported lower fatigue scores (P = .02). Neither satisfaction with fatigue nor exercise level was significantly different between groups, but not all activity logs were returned. None of the patients reported adverse effects. CONCLUSION: Objective indicators of exercise are warranted in future studies to examine whether exercise is indeed the mechanism of the FatigueUCope effect and determine the clinical utility of this intervention. This brief, engaging tablet-based multimedia education and prescription program has promise to help patients recognize the benefits of exercise to manage cancer-related fatigue.
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Fadiga , Neoplasias , Exercício Físico , Fadiga/complicações , Fadiga/terapia , Humanos , Neoplasias/complicações , Neoplasias/terapia , Qualidade de Vida , Resultado do TratamentoRESUMO
PURPOSE: Our specific aim was to develop and assess the consensus-based validity of common measures for understanding health behaviors and ancestry in Florida's population subgroups and establish the feasibility of wide-scale implementation of the measures and biospecimen collection within three cancer centers' catchment areas. METHODS: Using the National Cancer Institute's Grid-Enabled Measures web-based platform and an iterative process, we developed the Florida Health and Ancestry Survey (FHAS). We then used three sampling approaches to implement the FHAS: community-engaged, panel respondent, and random digit dialing (RDD). We asked a subset of participants to provide a saliva sample for future validation of subjective ancestry report with DNA-derived ancestry markers. RESULTS: This process supported the FHAS content validity. As an indicator of feasibility, the goals for completed surveys by sampling approach were met for two of the three cancer centers, yielding a total of 1438 completed surveys. The RDD approach produced the most representative sample. The panel sampling approach produced inadequate representation of older individuals and males. The community-engaged approach along with social media recruitment produced extreme underrepresentation only for males. Two of the cancer centers mailed biospecimen kits, whereas one did not due to resource constraints. On average, the community engaged approach was more productive in obtaining returned biospecimen samples (80%) than the panel approach (48%). CONCLUSIONS: We successfully developed and implemented the FHAS as a common measure to show its feasibility for understanding cancer health disparities in Florida. We identified sampling approach successes and challenges to obtaining biospecimens for ancestry research.
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Participação da Comunidade , Neoplasias , Florida , Humanos , Masculino , Neoplasias/epidemiologia , Participação dos Interessados , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The spread of unvetted scientific information about COVID-19 presents a significant challenge to public health, adding to the urgency for increased understanding of COVID-19 information-seeking preferences that will allow for the delivery of evidence-based health communication. This study examined factors associated with COVID-19 information-seeking behavior. METHODS: An online survey was conducted with US adults (N = 1800) to identify key interpersonal (e.g., friends, health care providers) and mediated (e.g., TV, social media) sources of COVID-19 information. Logistic regression models were fitted to explore correlates of information-seeking. RESULTS: Study findings show that the first sought and most trusted sources of COVID-19 information had different relationships with sociodemographic characteristics, perceived discrimination, and self-efficacy. Older adults had greater odds of seeking information from print materials (e.g., newspapers and magazines) and TV first. Participants with less educational attainment and greater self-efficacy preferred interpersonal sources first, with notably less preference for mass media compared to health care providers. Those with more experiences with discrimination were more likely to seek information from friends, relatives, and co-workers. Additionally, greater self-efficacy was related to increased trust in interpersonal sources. CONCLUSION: Study results have implications for tailoring health communication strategies to reach specific subgroups, including those more vulnerable to severe illness from COVID-19. A set of recommendations are provided to assist in campaign development.
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COVID-19 , Comunicação em Saúde , Humanos , Idoso , Pandemias , COVID-19/epidemiologia , Infodemia , Comportamento de Busca de Informação , Inquéritos e QuestionáriosRESUMO
Individuals with sickle cell disease (SCD) and individuals with sickle cell trait (SCT) have different health trajectories, but it is unknown whether sociodemographic and clinical characteristics are associated with their likelihood to be a parent. The purpose of this study was to examine the sociodemographic and clinical characteristics associated with perceived likelihood-to-parent among a cohort of young adults with SCD or SCT in the USA. The participants were 234 young adults (82 males, 152 females) who had either SCD (n = 138) or SCT (n = 96). The average age was 25.9 years (SD = 4.9), and most participants (87%) were single. Study participants completed the likelihood-to-parent item (0-4 scale) included in the valid and reliable Sickle Cell Reproductive Health Knowledge Parenting Intent and Behavior Questionnaire (SCKnowIQ). The mean likelihood-to-parent score was M = 2.3 (SD = 1.1) and 41% indicated that they were 'very' or 'extremely' likely to be a parent. Bivariate analysis showed that likelihood-to-parent was associated with the participant's sickle cell genotype (p = .03), age (p = .003), educational level (p = .04), income (p = .01), employment (p = .04), number of children (p < .001), health insurance (p = .02), and influenced by others (p < .001). In multiple regression analysis, participants reported higher likelihood-to-parent scores if they had at most 2 children (p = .03), higher income (p = .03), had no insurance (p = .01), and reported higher levels of being influenced by others (p = .001). Additional research is needed to confirm these findings in larger representative samples with more young adult males and to understand the likelihood to become parents over time by implementing longitudinal studies in the SCD and SCT populations. Such research is needed to guide appropriate education and genetic counseling for reproductive decision-making among young adults with SCD or SCT.
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Anemia Falciforme , Traço Falciforme , Adulto , Anemia Falciforme/genética , Criança , Feminino , Aconselhamento Genético , Humanos , Masculino , Pais , Saúde Reprodutiva , Traço Falciforme/genética , Adulto JovemRESUMO
OBJECTIVES: Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. METHODS: For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. RESULTS: Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92. CONCLUSIONS: Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.
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Neoplasias , Respeito , Idoso , Estudos Transversais , Feminino , Humanos , Pacientes Ambulatoriais , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Pain intensity remains a primary focus clinically for sickle cell disease pain assessment despite the fact that pain quality and pain location and distribution are critical for clinical diagnosis and treatment of its etiology. However, in part because of measurement issues, scant evidence is available about pain location or its relationship to intensity and quality in adults with SCD. AIM: Our study aim was to examine sickle cell disease pain location for relationships with pain quality and intensity measured in outpatient and inpatient settings. METHODS: We used an existing longitudinal dataset prospectively collected with the valid and reliable tablet-based PAINReportItâ. Adults with sickle cell disease (n = 99) reported pain location, intensity, and quality during a routine outpatient clinic visit and again during a subsequent hospitalization. From their digital body outline drawings and using the ImageJ software, we computed the pain-affected body surface area. With Pearson's correlations and paired t tests, we examined relationships between pain-affected body surface area and other pain variables across outpatient and inpatient visits. RESULTS: The mean pain-affected body surface area was 14.4% ± 15.0% of the total body surface area for outpatient visits (min-max: 0.0%-90.2%) and 13.5% ± 14.7% (min-max: 0.0%-73.0%) for inpatient stay. Pain-affected body surface area was positively correlated with pain quality scores for both visits but not significantly correlated with pain intensity at either visit. Compared with the outpatient visit, mean pain intensity for inpatient stay was higher (p < .001); pain quality (p = .12) and pain-affected body surface area (p = .60) did not differ significantly between visits. CONCLUSIONS: Unknown is the explanation for pain-affected body surface area association with SCD pain quality but not pain intensity at outpatient and inpatient visits. Additional research is warranted to explore these findings and examine the clinical utility of pain-affected body surface area for chronic sickle cell disease pain and acute sickle cell disease crisis pain.
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Dor Aguda , Anemia Falciforme , Dor Crônica , Adulto , Humanos , Anemia Falciforme/complicações , Medição da Dor , Manejo da Dor , Dor Crônica/tratamento farmacológicoRESUMO
AIMS: Patients with cancer have pain due to their cancer, the cancer treatment and other causes, and the pain intensity varies considerably between individuals. Additional research is needed to understand the factors associated with worst pain intensity. Our study aim was to determine the association between worst pain intensity and sociodemographics and cancerspecific factors among patients with cancer. DESIGN: A total of 1,280 patients with cancer recruited from multiple cancer centers over 25 years in the United States were asked to complete a questionnaire that collected respondents' demographic, chronic pain, and cancer-specific information. SETTINGS: Worst, least, and current pain intensities were captured using a modified McGill Pain Questionnaire (pain intensity measured on 0-10 scale). A generalized linear regression analysis was utilized to assess the associations between significant bivariate predictors and worst pain intensity scores.Our study sample was non-Hispanic White (64.5%), non-Hispanic Black (28.3%), and Hispanic (7.2%). On average, participants were 59.4 (standard deviation = 14.4) years old. The average worst pain intensity score was 6.6 (standard deviation = 2.50). After controlling for selected covariates, being Hispanic (ß = 0.6859), previous toothache pain (ß = 0.0960), headache pain (ß = 0.0549), and stomachache pain (ß = 0.0577) were positively associated with worse cancer pain. Notably, year of enrollment was not statistically associated with pain. CONCLUSIONS: Our study sample was non-Hispanic White (64.5%), non-Hispanic Black (28.3%), and Hispanic (7.2%). On average, participants were 59.4 (standard deviation = 14.4) years old. The average worst pain intensity score was 6.6 (standard deviation = 2.50). After controlling for selected covariates, being Hispanic (ß = 0.6859), previous toothache pain (ß = 0.0960), headache pain (ß = 0.0549), and stomachache pain (ß = 0.0577) were positively associated with worse cancer pain. Notably, year of enrollment was not statistically associated with pain. Findings identified being Hispanic and having previous severe toothache, stomachache, and headache pain as significant predictors of worst pain intensity among patients with cancer. After controlling for selected covariates, we did not note statistical differences in worst pain during a 25-year period. Therefore,studies focused on improving the management of pain among patients with cancer should target interventions for those with Hispanic heritage and those with past history of severe common pain.
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Dor do Câncer , Neoplasias , Idoso , Cefaleia/complicações , Hispânico ou Latino , Humanos , Pessoa de Meia-Idade , Neoplasias/complicações , Medição da Dor , Odontalgia , Estados UnidosRESUMO
Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable Internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire. We created a computerized algorithm that used participants' responses to generate tailored parenting plans based on their parenting preferences and partner's sickle cell status. Thirty-one different parenting plans were generated to meet the variety in the participants' preferences. The most frequently generated plan was for participants with sickle cell disease who had a partner with hemoglobin AA, who wanted to be a parent, was not likely to be pregnant, and wanted their child to be sickle cell disease free. More than half of the participants required alteration in their reproductive behavior to achieve their parenting goals. Findings provide insight into the variety and accuracy of computer algorithm-generated parenting plans, which could further guide refinement of the algorithm to produce patient-centered, tailored parenting plans supplemental to Internet-based genetic inheritance education.
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Anemia Falciforme , Traço Falciforme , Anemia Falciforme/genética , Anemia Falciforme/terapia , Criança , Educação em Saúde , Humanos , Poder Familiar , Traço Falciforme/genética , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions. METHODS: We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts. RESULTS: Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units. SIGNIFICANCE OF RESULTS: This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.
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Empatia , Respeito , Idoso , Comunicação , Estudos de Viabilidade , Humanos , Pessoa de Meia-Idade , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. OBJECTIVE: The objective of this article is to describe a detailed method for DT therapist training. METHOD: Chochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites. RESULTS: The DT experts' verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol. DISCUSSION: The DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.