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1.
Pediatr Blood Cancer ; 71(6): e30958, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38572597

RESUMEN

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.

2.
BMC Womens Health ; 23(1): 221, 2023 05 03.
Artículo en Inglés | MEDLINE | ID: mdl-37138260

RESUMEN

OBJECTIVE: Early-stage breast cancer (BC) is the second most common malignancy in women, worldwide. Early-detection and treatment advances have led to 5-year survival rates of 90% for early-stage breast cancer. However, the long-term morbidity of breast cancer remains high, with a majority of survivors facing increased risk of cardiometabolic conditions as well as secondary cancers. In particular, African American women with breast cancer experience higher morbidity and mortality than other women. Metabolomics is the comprehensive study of metabolites in biological samples to elucidate the role of monosaccharides, amino acids, and their respective metabolic pathways. Although some studies have found differential metabolites in women with breast cancer compared to normal controls, there has been little study of women with breast cancer across time and the active treatment trajectory. This study examines and compares the serum metabolomic profile of women with BC, prior to initial chemotherapy and at 1 year after inception of chemotherapy. METHODS: This study examined serum metabolites through a secondary analysis of a longitudinal parent study (EPIGEN) of women diagnosed with early-stage BC. Participants were evaluated across 5 time points: prior to their receipt of chemotherapy (T1), at the time of their 4th chemotherapy treatment (T2), 6 months after the initiation of chemotherapy (T3), one year after the initiation of chemotherapy (T4) and two years after the initiation of chemotherapy (T5). This analysis focused on the metabolomic data from 70 participants from T1 to T4. Using ultra high-pressure liquid chromatography high resolution mass spectrometry (UHPLC-HRMS), we performed Friedman Rank Sum Test followed by Nemenyi post-hoc pairwise tests to identify which metabolite levels differed between time points, focusing on metabolites with a Benjamini-Hochberg false discovery rate (FDR) from the overall Friedman test < 0.05 and then specifically examined the p-values from the T1 vs. T4 pairwise comparison. RESULTS: The untargeted serum metabolomics yielded a total of 2,395 metabolites identified on the basis of the accurate mass and MS/MS fragmentation, 1,264 of which were significant after Friedman's test (FDR < 0.05). The analysis then focused on the levels of 124 metabolites from the T1 vs. T4 post-hoc comparison that had a combined FDR < 0.05 and fold change (FC) > 2.0. Metabolite set enrichment analysis (MSEA) as part of Metaboanalyst 3.0 was performed to identify pathways that were significantly altered. The known metabolites identified from the functional analysis were used to evaluate the up and down regulated pathways. The 40metabolites from the Functional Analysis were mainly attributed to amino acids (specifically lysine regulation), fatty acids (particularly unsaturated) and steroid hormone synthesis (lysophosphatidic acid). CONCLUSION: There were multiple significant changes in the serum metabolomic profile of women with breast cancer at one-year post inception of chemotherapy compared to pre-chemotherapy, most notably associated with lysine degradation, branched-chain amino acid synthesis, linoleic acid metabolism, tyrosine metabolism and biosynthesis of unsaturated fatty acids as the top 5 metabolic pathways. Some of these changes could be associated with metabolic perturbations that are consistent with heightened risk of cardiometabolic morbidity. Our results provide new insights into the mechanisms underlying potential heightened cardiovascular health risks in this population.


Asunto(s)
Neoplasias de la Mama , Enfermedades Cardiovasculares , Humanos , Femenino , Neoplasias de la Mama/tratamiento farmacológico , Espectrometría de Masas en Tándem , Lisina , Aminoácidos/metabolismo , Aminas
3.
J Med Internet Res ; 25: e45043, 2023 08 11.
Artículo en Inglés | MEDLINE | ID: mdl-37566456

RESUMEN

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.


Asunto(s)
Sistemas de Apoyo a Decisiones Clínicas , Enfermeras y Enfermeros , Adulto , Humanos , Internet , Proyectos Piloto , Estados Unidos
4.
J Cancer Educ ; 38(5): 1719-1727, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37452225

RESUMEN

African American communities are disproportionately impacted by prostate cancer (PCa) compared to other racial/ethnic groups. Whereas the incidence of PCa in Hispanic/Latino men is lower than the incidence in non-Hispanic/Latino White men, Hispanic/Latino men are more likely to be diagnosed with PCa in late stages, and less likely to be knowledgeable about PCa, resulting in significant disparities. We developed, culturally adapted, translated, implemented, and evaluated a PCa Cancer Advocacy Training in African American and Hispanic/Latino/a communities. Culturally and language specific content for African American and Hispanic/Latino/a patients on PCa causes, risk factors, epidemiology, detection, diagnosis, and treatment were delivered through a workshop and simultaneously broadcasted in Spanish in Los Angeles County (n = 29) and in English in Tallahassee, FL (n = 9). Pre- and posttest surveys assessed impact. Pre vs post differences were statistically significant in knowledge (5.0 ± 1.6 vs 6.3 ± 1.1) and advocacy intentions (3.9 ± 0.9 vs 4.3 ± 0.8), on correctly identifying warning signs for PCa (50% vs 87%), intent to inform and educate about PCa within the next 3 months (69% vs 95%), to ensure that high-quality research is sensitive to the priorities of patients (63% vs 84%), to help increase patient recruitment, compliance, and retention for clinical trials within the next month (62% vs 84%), intent to engage in PCa patient education within the next 3 months (67% vs 92%), and in engaging in PCa community outreach within the next 3 months (67% vs 94%). There were no significant differences due to race/ethnicity. The Cancer Advocacy Training led to increased knowledge, awareness, and intention to engage in advocacy regarding PCa in the next 3 months. Results suggest that delivering culturally and language specific educational information increases engagement of Hispanic/Latino/a and African American patient/community advocates.


Asunto(s)
Negro o Afroamericano , Neoplasias de la Próstata , Humanos , Masculino , Etnicidad , Hispánicos o Latinos , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/prevención & control , Neoplasias de la Próstata/epidemiología , Grupos Raciales , Servicios de Salud Comunitaria , Defensa del Paciente
5.
Comput Inform Nurs ; 41(5): 346-355, 2023 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-36067491

RESUMEN

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 Ⓡ . 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.


Asunto(s)
Algoritmos , Programas Informáticos , Adulto , Humanos , Estudios Transversales , Medición de Resultados Informados por el Paciente
6.
Appl Nurs Res ; 70: 151673, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36933901

RESUMEN

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.


Asunto(s)
Neoplasias Pulmonares , Toracotomía , Humanos , Masculino , Adulto , Persona de Mediana Edad , Anciano , Femenino , Estudios Longitudinales , Turquía , Dolor , Neoplasias Pulmonares/cirugía , Lenguaje , Reproducibilidad de los Resultados , Encuestas y Cuestionarios
7.
Palliat Support Care ; : 1-5, 2023 Aug 11.
Artículo en Inglés | MEDLINE | ID: mdl-37565429

RESUMEN

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.

8.
Cancer Control ; 29: 10732748221087054, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35414203

RESUMEN

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.


Asunto(s)
Fatiga , Neoplasias , Ejercicio Físico , Fatiga/complicaciones , Fatiga/terapia , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Calidad de Vida , Resultado del Tratamiento
9.
BMC Public Health ; 22(1): 2339, 2022 12 13.
Artículo en Inglés | MEDLINE | ID: mdl-36514047

RESUMEN

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.


Asunto(s)
COVID-19 , Comunicación en Salud , Humanos , Anciano , Pandemias , COVID-19/epidemiología , Infodemia , Conducta en la Búsqueda de Información , Encuestas y Cuestionarios
10.
J Genet Couns ; 31(3): 689-697, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-34826361

RESUMEN

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.


Asunto(s)
Anemia de Células Falciformes , Rasgo Drepanocítico , Adulto , Anemia de Células Falciformes/genética , Niño , Femenino , Asesoramiento Genético , Humanos , Masculino , Padres , Salud Reproductiva , Rasgo Drepanocítico/genética , Adulto Joven
11.
BMC Palliat Care ; 21(1): 8, 2022 Jan 11.
Artículo en Inglés | MEDLINE | ID: mdl-35016670

RESUMEN

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.


Asunto(s)
Neoplasias , Respeto , Anciano , Estudios Transversales , Femenino , Humanos , Pacientes Ambulatorios , Reproducibilidad de los Resultados
12.
Pain Manag Nurs ; 23(6): 693-702, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36261305

RESUMEN

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 PAINReportItⓇ. 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.


Asunto(s)
Dolor Agudo , Anemia de Células Falciformes , Dolor Crónico , Adulto , Humanos , Anemia de Células Falciformes/complicaciones , Dimensión del Dolor , Manejo del Dolor , Dolor Crónico/tratamiento farmacológico
13.
Pain Manag Nurs ; 23(4): 424-429, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35227646

RESUMEN

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.


Asunto(s)
Dolor en Cáncer , Neoplasias , Anciano , Cefalea/complicaciones , Hispánicos o Latinos , Humanos , Persona de Mediana Edad , Neoplasias/complicaciones , Dimensión del Dolor , Odontalgia , Estados Unidos
14.
Comput Inform Nurs ; 40(9): 633-640, 2022 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-35930415

RESUMEN

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.


Asunto(s)
Anemia de Células Falciformes , Rasgo Drepanocítico , Anemia de Células Falciformes/genética , Anemia de Células Falciformes/terapia , Niño , Educación en Salud , Humanos , Responsabilidad Parental , Rasgo Drepanocítico/genética , Encuestas y Cuestionarios , Adulto Joven
15.
Palliat Support Care ; 20(3): 321-327, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35713352

RESUMEN

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.


Asunto(s)
Empatía , Respeto , Anciano , Comunicación , Estudios de Factibilidad , Humanos , Persona de Mediana Edad , Reproducibilidad de los Resultados
16.
Palliat Support Care ; 20(2): 178-188, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34036932

RESUMEN

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.


Asunto(s)
Cuidados Paliativos , Respeto , Humanos , Cuidados Paliativos/métodos , Reproducibilidad de los Resultados
17.
Biol Blood Marrow Transplant ; 26(10): 1803-1810, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32592859

RESUMEN

Chronic graft-versus-host disease (cGVHD) remains a significant late effect issue for allogeneic hematopoietic cell transplantation (allo-HCT) survivors, contributing to morbidity and mortality. The etiology of cGVHD is not well elucidated. Owing to a lack of early diagnostic tests and pathophysiology ambiguity, targeted treatments remain limited. Biomarkers for prediction, control response, or prognostication have not yet been identified. Metabolomics, the quantification of metabolites, is a potential biomarker of cGVHD but has not been evaluated in this population. In this study, we examined global metabolites of stored plasma to identify differentially expressed metabolites of individuals discordant for cGVHD following allo-HCT. A descriptive, comparative, cross-sectional study design was used to examine differentially expressed metabolites of plasma samples obtained from 40 adult allo-HCT recipients (20 with cGVHD and 20 without cGVHD) from 2 parent studies. Metabolomics profiling was conducted at the University of Florida's Southeast Center for Integrative Metabolomics. Full experimental methods followed a previously published method. All statistical analyses were performed by a PhD-prepared, trained bioinformatics statistician. There were 10 differentially expressed metabolites between participants with cGVHD and those without cGVHD. Differential metabolites included those related to energy metabolism (n = 3), amino acid metabolism (n = 3), lipid metabolism (n = 2), caffeine metabolism (n = 1), and neurotransmission (n = 1). Serotonin had the greatest fold change (21.01). This study suggests that cGVHD may be associated with expanded cellular energy and potentially mitochondrial dysfunction. The differential metabolic profile between patients with and without cGVHD indicates metabolic perturbations that merit further exploration as potential biomarkers of cGVHD. These findings support the need for further examination using a larger, prospective study design to identify metabolomic risk factors that may signal the need for earlier preventive measures and earlier treatment to reduce cGVHD.


Asunto(s)
Enfermedad Injerto contra Huésped , Trasplante de Células Madre Hematopoyéticas , Adulto , Enfermedad Crónica , Estudios Transversales , Enfermedad Injerto contra Huésped/diagnóstico , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Humanos , Metabolómica , Estudios Prospectivos
18.
Clin Trials ; 17(5): 545-551, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32650673

RESUMEN

BACKGROUND: Clinical trial articles often lack detailed descriptions of the methods used to randomize participants, conceal allocation, and blind subjects and investigators to group assignment. We describe our systematic approach to implement and measure blinding success in a double-blind phase 2 randomized controlled trial testing the efficacy of acupuncture for the treatment of vulvodynia. METHODS: Randomization stratified by vulvodynia subtype is managed by Research Electronic Data Capture software's randomization module adapted to achieve complete masking of group allocation. Subject and acupuncturist blinding assessments are conducted multiple times to identify possible correlates of unblinding. RESULTS: At present, 48 subjects have been randomized and completed the protocol resulting in 87 subject and 206 acupuncturist blinding assessments. DISCUSSION: Our approach to blinding and blinding assessment has the potential to improve our understanding of unblinding over time in the presence of possible clinical improvement.


Asunto(s)
Terapia por Acupuntura/métodos , Ensayos Clínicos Fase II como Asunto/métodos , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , Vulvodinia/terapia , Distinciones y Premios , Método Doble Ciego , Femenino , Humanos , Modelos Estadísticos , Agujas , Proyectos de Investigación , Investigación Biomédica Traslacional
19.
Nurs Res ; 69(2): 116-126, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-31972847

RESUMEN

BACKGROUND: The presence of cognitive impairment (CI) among hospitalized older adults (aged 85 years and older) could interfere with the identification and treatment of other important symptoms experienced by these patients. Little is known, however, about the nursing care provided to this group. Contrasting the nursing care provided to patients with and without CI may reveal important insights about symptom treatment in the CI population. OBJECTIVE: The aim of this study was to examine the relationship of CI to nursing care provided and length of stay for hospitalized older adults using standardized nursing data retrieved from electronic health records. METHODS: We conducted a comparative secondary data analysis. A data set of standardized nursing plan of care data retrieved from electronic health record data of nine units at four hospitals was analyzed. The plan of care data for this study were previously transformed into one of eight categories (family, well-being, mental comfort, physical comfort, mental, safety, functional, and physiological care). Fisher exact tests were used to compare the differences in the nursing care for hospitalized older adults with and without CI. Mixed-effects models were used to examine associations of patient's cognitive status and nursing care, and cognitive status and length of stay. RESULTS: We identified 4,354 unique patients; 746 (17%) had CI. We observed that older adults with CI were less likely to receive physical comfort care than those without CI for seven of nine units. Older adults' cognitive status was associated with the delivery of mental comfort care. In addition, a worsening in cognitive status was associated with an increase in length of stay for older adults with CI. DISCUSSION: Older adults with CI appeared to be undertreated for symptoms of pain when compared to those without CI across units. There is a need for further research to improve symptom recognition and management for this population. The presence of CI was associated with variation in nursing care provided and length of stay. Future studies that include the analysis of nursing data merged with elements stored in the electronic health record representing the contributions of other health professions are expected to provide additional insights into this gap.


Asunto(s)
Disfunción Cognitiva/enfermería , Evaluación Geriátrica , Hospitalización , Tiempo de Internación/estadística & datos numéricos , Anciano de 80 o más Años , Atención Integral de Salud/normas , Registros Electrónicos de Salud , Femenino , Humanos , Masculino
20.
Pain Pract ; 20(2): 168-178, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31553824

RESUMEN

BACKGROUND: We sought to refine a screening measure for discriminating a sensitized or normal sensation pain phenotype among African American adults with sickle cell disease (SCD). OBJECTIVE: To develop scoring schemes based on sensory pain quality descriptors; evaluate their performance on classifying patients with SCD who had sensitization or normal sensation, and compare with scores on the Self-report Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) and the Neuropathic Pain Symptom Inventory (NPSI). METHODS: Participants completed PAINReportIt, quantitative sensory testing (QST), S-LANSS, and NPSI. Conventional binary logistic regression and least absolute shrinkage and selection operator (lasso) regression were used to obtain 2 sets of weights resulting in 2 scores: the PR-Logistic (PAINReportIt score weighted by conventional binary logistic regression coefficients) and PR-Lasso (PAINReportIt score weighted by lasso regression coefficients). Performance of the proposed scores and the existing scores were evaluated. RESULTS: Lasso regression resulted in a parsimonious model with non-zero weights assigned to 2 neuropathic descriptors, cold and spreading. We found positive correlations between the PR-Lasso and other scores: S-LANSS (r = 0.22, P < 0.01), NPSI (r = 0.22, P < 0.01), and PR-Logistic (r = 0.35, P < 0.01). The NPSI and PR-Lasso performed similarly at different levels of required specificity and outperformed the S-LANSS and PR-Logistic at the various specificity points. CONCLUSION: The PR-Lasso offers a way to discriminate a SCD pain phenotype.


Asunto(s)
Anemia de Células Falciformes/diagnóstico , Neuralgia/diagnóstico , Dimensión del Dolor/normas , Percepción del Dolor/fisiología , Fenotipo , Adulto , Negro o Afroamericano/psicología , Anciano , Anemia de Células Falciformes/epidemiología , Anemia de Células Falciformes/psicología , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neuralgia/epidemiología , Neuralgia/psicología , Dimensión del Dolor/métodos , Reproducibilidad de los Resultados , Autoinforme/normas , Autoevaluación (Psicología)
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