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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.
J Cancer Educ ; 39(4): 405-412, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38520478

RESUMEN

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.


Asunto(s)
COVID-19 , Tutoría , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Tutoría/métodos , Florida , Neoplasias , Investigadores/educación , Femenino , SARS-CoV-2 , Investigación Biomédica/educación , California , Masculino , Grupos Minoritarios/educación , Universidades , Educación a Distancia/métodos
3.
J Asthma ; 60(2): 277-287, 2023 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-35195484

RESUMEN

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.


Asunto(s)
Asma , Automanejo , Estado Asmático , Humanos , Adolescente , Asma/tratamiento farmacológico , Estado Asmático/tratamiento farmacológico , Familia , Grupos Minoritarios , Broncodilatadores/uso terapéutico
4.
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
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.
Geriatr Nurs ; 53: 78-84, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37454422

RESUMEN

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 (x̄= 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.


Asunto(s)
Personas con Discapacidad , Dolor de la Región Lumbar , Anciano , Humanos , Masculino , Envejecimiento , Estudios Transversales , Caminata
8.
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.

9.
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
10.
Cancer Control ; 29: 10732748221110897, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35758601

RESUMEN

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.


Asunto(s)
Participación de la Comunidad , Neoplasias , Florida , Humanos , Masculino , Neoplasias/epidemiología , Participación de los Interesados , Encuestas y Cuestionarios
11.
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
12.
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
13.
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
14.
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
15.
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
16.
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
17.
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
18.
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
19.
Support Care Cancer ; 29(2): 813-821, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32495033

RESUMEN

PURPOSE: The USA has observed a significant increase in the use of palliative care for patients diagnosed with advanced cancer. However, it is unknown how geographic variation affects patients' use of palliative care services. We examined temporal and demographic trends in receipt of and timing of palliative care by state and region. METHODS: A retrospective cohort study of the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Study sample included community-dwelling patients aged ≥ 65 years with metastatic lung cancer who were diagnosed between 2001 and 2015. Cochran-Armitage trend test was used to evaluate temporal trends in receipt of and timing of palliative care by states and census region. RESULTS: The proportion of metastatic lung cancer patients who received palliative care ranged from 16.4% in Washington and 16.3% in Connecticut to 6.4% in Louisiana. From 2001 to 2015, use of palliative care increased from 3.2 to 29.8% in the West region, from 3.3 to 31.9% in the Northeast region, from 3.8 to 36.2% in the Midwest region, and from 0.9 to 23.3% in the South region (all P < 0.001). The median time from the date of cancer diagnosis to the date of first palliative care visit varied geographically, from 44 days in Utah to 66 days in California. Hospital-based palliative care was most common in these states. CONCLUSION: The substantial geographic variation in the use of palliative care suggesting a need for additional research on geographic disparities in palliative care and strategies that might improve state-level palliative care delivery.


Asunto(s)
Neoplasias Pulmonares/terapia , Cuidados Paliativos/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Femenino , Humanos , Neoplasias Pulmonares/epidemiología , Neoplasias Pulmonares/patología , Masculino , Medicare/estadística & datos numéricos , Persona de Mediana Edad , Metástasis de la Neoplasia , Cuidados Paliativos/métodos , Estudios Retrospectivos , Estados Unidos/epidemiología
20.
Support Care Cancer ; 29(9): 5227-5235, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33646365

RESUMEN

PURPOSE: Collecting patients' pain features for congruent pain relief treatment is time-consuming. We sought to identify implementation issues and evaluate the efficacy of an electronic patient self-reporting pain device in community-based cancer clinics. METHODS: In a 2-phase descriptive pilot and randomized controlled trial (RCT) with pretest/posttest design, 178 cancer patients participated (n = 33 pilot phase; n = 145 in the RCT phase). Patients completed PAINReportIt®, an electronic version of the valid and reliable McGill Pain Questionnaire that comprehensively measures the multiple dimensions of pain. All pilot phase and RCT patients were asked to complete PAINReportIt® twice and received usual care. For RCT patients assigned to the experimental group, a copy of the PAINReportIt® Summary was placed in their clinic medical record before they visited their clinicians. Posttest measures were completed 3-7 days later. RESULTS: We identified three implementation barriers: system resistance to deposit of research data into the medical record, staff resistance to change, and patients' physical manipulation of the tablet. The time required to complete the tool did not differ significantly between groups but reduced significantly pre- to posttest in both RCT groups. Current pain intensity and pain quality but not worst pain scores decreased significantly pre- to posttest in the experimental group. None of the pain variables differed significantly between groups. CONCLUSION: Implementation of PAINReportIt® was feasible in community oncology clinic settings. Barriers identified were expected and were surmountable. The studied tool showed satisfactory time sparing for comprehensive pain assessment with data automatically recorded and easily accessed by the clinician in the form of a summary report. Findings support the need for additional research to demonstrate the clinical efficacy of tablet-based pain assessment on patient outcomes as well as clinical care processes such as pain documentation and analgesic prescriptions.


Asunto(s)
Neoplasias , Pacientes Ambulatorios , Dolor , Electrónica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/complicaciones , Neoplasias/terapia , Resultado del Tratamiento
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