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1.
J Healthc Qual ; 46(1): 1-11, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37788425

RESUMO

OBJECTIVE: To explore the perceived effects of COVID-19 on MARQUIS toolkit implementation and sustainability, challenges faced by hospitals in sustaining medication reconciliation efforts, and the strategies used to mitigate the negative effects of the pandemic. DATA SOURCES AND STUDY SETTINGS: Primary qualitative data were extracted from a Web-based survey. Data were collected from hospitals that participated in MARQUIS2 ( n = 18) and the MARQUIS Collaborative ( n = 5). STUDY DESIGN: A qualitative, cross-sectional study was conducted. DATA COLLECTION/DATA EXTRACTION: Qualitative data were extracted from a Research Electronic Data Capture survey databased and uploaded into an Excel data analysis template. Two coders independently coded the data with a third coder resolving discrepancies. PRINCIPAL FINDINGS: Thirty-one team members participated, including pharmacists ( n = 20; 65%), physicians ( n = 9; 29%), or quality-improvement (QI) specialists ( n = 2; 6%) with expertise in medication reconciliation (MedRec) (14; 45%) or QI (10; 32%). Organizational resources were limited, including funding, staffing, and access to pharmacy students. To support program continuation, hospitals reallocated staff and used new MedRec order sets. Telemedicine, workflow adaptations, leadership support, QI team involvement, and ongoing audits and feedback promoted toolkit sustainability. CONCLUSIONS: COVID-19 affected the capacity of hospitals to sustain the MARQUIS toolkit. However, hospitals adapted various strategies to sustain the toolkit.


Assuntos
COVID-19 , Pandemias , Humanos , Estudos Transversais , Hospitais , Inquéritos e Questionários
2.
J Neurosci Nurs ; 56(1): 12-19, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-37815296

RESUMO

ABSTRACT: Background: Delirium is a common and distressing manifestation of acute brain dysfunction that is associated with poor outcomes in various critically ill patient populations. Although patients with acute stroke experience delirium, understanding of delirium in this population is limited. The purpose of this scoping review is to describe existing evidence about delirium and associations with posthospital outcomes after acute stroke. Methods: Arksey and O'Malley's 5-stage framework was used to perform a scoping review. PubMed, CINAHL, and EMBASE electronic databases were searched. Outcome domains of interest included mortality, cognitive function, physical function, mental health, and quality of life. Full-text, peer-reviewed articles with adult stroke sample populations (acute ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage) were included. Results: Nineteen articles, involving 5611 unique patients, were included. Most sample populations included patients with either acute ischemic stroke or intracerebral hemorrhage. Heterogeneous research aims, methods, and outcome measures limit the ability to compare specific findings across studies. However, included studies suggest higher mortality at 12 months, worse cognition, and greater functional impairment in patients who have experienced acute stroke and delirium. Limited information regarding associations of delirium with posthospital mental health outcomes and quality of life precluded the ability to analyze these relationships and warrants further investigation. Conclusion: This review suggests concerning findings about associations of delirium to posthospital outcomes after acute stroke. Better characterization of delirium after acute stroke and analysis of its impact on long-term outcomes are needed.


Assuntos
Delírio , AVC Isquêmico , Acidente Vascular Cerebral , Adulto , Humanos , AVC Isquêmico/complicações , Qualidade de Vida , Acidente Vascular Cerebral/complicações , Acidente Vascular Cerebral/psicologia , Hemorragia Cerebral/complicações
3.
Nurse Educ ; 2023 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-37782939

RESUMO

BACKGROUND: There is a critical need to prepare a diverse nursing workforce and address issues of structural racism and health inequities. PROBLEM: A shortage of underrepresented nurse faculty exacerbates the lack of diversity in nursing education. Microaggressions and discrimination experienced by underrepresented nursing students hinder their personal and professional growth. Evaluating diversity, equity, and inclusion (DEI) and belonging within a school of nursing is crucial for progress. APPROACH: An alumni survey and a faculty/staff survey were conducted to assess DEI perceptions, which informed the development of a strategic plan. Goals focused on monitoring the cultural climate, increasing diversity and inclusivity, and enhancing faculty competencies. Educational offerings and initiatives were implemented to support these goals. OUTCOMES: Ongoing evaluation is essential to sustain progress in this critical area. CONCLUSION: These efforts are necessary for sustainable progress and equitable care provision.

4.
BMC Med Inform Decis Mak ; 23(1): 149, 2023 08 03.
Artigo em Inglês | MEDLINE | ID: mdl-37537577

RESUMO

BACKGROUND: Prediction calculators can help set outcomes expectations following orthopaedic surgery, however effective implementation strategies for these tools are unknown. This study evaluated provider and patient perspectives on clinical implementation of web-based prediction calculators developed using national prospective spine surgery registry data from the Quality Outcomes Database. METHODS: We conducted semi-structured interviews in two health systems, Vanderbilt University Medical Center (VUMC) and Duke University Health System (DUHS) of orthopedic and neurosurgery health care providers (VUMC: n = 19; DUHS: n = 6), health care administrators (VUMC: n = 9; DUHS: n = 9), and patients undergoing elective spine surgery (VUMC: n = 16). Qualitative template analysis was used to analyze interview data, with a focus on end-user perspectives regarding clinical implementation of web-based prediction tools. RESULTS: Health care providers, administrators and patients overwhelmingly supported the use of the calculators to help set realistic expectations for surgical outcomes. Some clinicians had questions about the validity and applicability of the calculators in their patient population. A consensus was that the calculators needed seamless integration into clinical workflows, but there was little agreement on best methods for selecting which patients to complete the calculators, timing, and mode of completion. Many interviewees expressed concerns that calculator results could influence payers, or expose risk of liability. Few patients expressed concerns over additional survey burden if they understood that the information would directly inform their care. CONCLUSIONS: Interviewees had a largely positive opinion of the calculators, believing they could aid in discussions about expectations for pain and functional recovery after spine surgery. No single implementation strategy is likely to be successful, and strategies vary, even within the same healthcare system. Patients should be well-informed of how responses will be used to deliver better care, and concerns over how the calculators could impact payment and liability should be addressed prior to use. Future research is necessary to determine whether use of calculators improves management and outcomes for people seeking a surgical consult for spine pain.


Assuntos
Vértebras Lombares , Motivação , Humanos , Estudos Prospectivos , Vértebras Lombares/cirurgia , Dor , Internet
5.
J Gerontol Nurs ; 49(2): 27-35, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36719659

RESUMO

As older adults live longer, individual and societal efforts must be directed toward strategies to promote healthy and successful aging. Planning for aging and frailty offers an opportunity for older adults to optimize their well-being and proactively prepare across their aging trajectory. The current study evaluated the relationship between contextual factors (functional status, frailty, health status, social support) that influence older adults' readiness to engage in planning in five domains of aging (communication, environmental, financial, physical care, cognitive) through the transtheoretical stages of change. Results showed that factors influencing active planning include older age, vulnerability, living situation, and social support. These results add to the discourse on future care planning through a comprehensive approach to planning across a life course perspective, while highlighting the importance of future research at individual and societal levels. Gerontological nurses are well-positioned to lead planning efforts for older adults that promote well-being, patient-centered care, and healthy aging. [Journal of Gerontological Nursing, 49(2), 27-35.].


Assuntos
Fragilidade , Enfermagem Geriátrica , Geriatria , Humanos , Idoso , Envelhecimento , Nível de Saúde
6.
Geriatr Nurs ; 47: 164-170, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35914494

RESUMO

OBJECTIVES: Many older adults want to age in place but do not make plans. Understanding how and under what conditions adults prepare/plan ahead is vital given population aging and increasing frailty. This study examines the stages of change and experiences (personal/others) related to readiness to plan for aging and frailty. METHODS: Descriptive cross-sectional. SETTING: Community-dwelling. PARTICIPANTS: Adults aged 50-80(N = 252). DATA COLLECTION: demographics, other characteristics, stages of change, experiences (personal/others) was assessed with survey questions. DATA ANALYSIS: frequencies/percentages, McNemar test, Chi-square. RESULTS: Among domains, participants' percentages in action/maintenance stages ranged from 28.2% (cognitive) to 68.7% (financial). Participants had increased experience with others across domains rather than self. Older participants (≥ 70) vs. younger (50-69) reported statistically significant greater planning in action/maintenance stages for all domains (p < .05) with the exception of cognitive. DISCUSSION: Examining the concept of planning for aging and frailty provides a foundation for future work to develop/test interventions aimed at increasing readiness for aging.


Assuntos
Fragilidade , Idoso , Envelhecimento/psicologia , Estudos Transversais , Idoso Fragilizado/psicologia , Avaliação Geriátrica , Humanos , Vida Independente/psicologia , Inquéritos e Questionários
7.
West J Nurs Res ; 44(2): 141-150, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33543680

RESUMO

Neuropsychiatric symptoms in Huntington disease (HD) are commonly encountered, but their effects on functional status are poorly understood. In this qualitative study guided by the Theory of Unpleasant Symptoms, 15 HD patients and caregivers completed semi-structured interviews regarding perceived effects of neuropsychiatric symptoms on functional status. Physical, cognitive, and social functional effects were reported, with negative effects on daily activities and social withdrawal being reported by the greatest number of subjects. Participants also reported improved function with intervention for neuropsychiatric symptoms. This study provides a novel description of the lived experiences of HD patients with neuropsychiatric symptoms.


Assuntos
Doença de Huntington , Cuidadores , Estado Funcional , Humanos , Doença de Huntington/complicações , Doença de Huntington/psicologia
8.
J Homosex ; 69(6): 1030-1041, 2022 May 12.
Artigo em Inglês | MEDLINE | ID: mdl-33905307

RESUMO

This paper describes the development and implementation of a robust lesbian, gay, bisexual, transgender, and queer (LGBTQ) cultural competence curriculum for training health and human service providers across New York State. Between 2013-2018, The National LGBT Cancer Network developed and published Best Practices in Creating and Delivering LGBTQ Cultural Competency Trainings for Health and Social Service Agencies and designed a training curriculum. They also conducted Train the Trainer sessions, and evaluated pre- and post- curriculum knowledge, attitudes, self-efficacy and intentions of individuals who attended educational sessions conducted by the certified trainers. Most respondents improved from pretest to posttest, with significant improvements in knowledge, attitudes, self-efficacy and intentions. An increase in self-efficacy was significantly associated with pre- to posttest improvement in respondent intention. Future research should focus on what components specifically bolster self-efficacy and intention. Increasing the number of health and human service providers who are trained to address the needs of this population is an important step toward providing culturally competent care.


Assuntos
Competência Cultural , Minorias Sexuais e de Gênero , Atitude do Pessoal de Saúde , Competência Cultural/educação , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Intenção , Autoeficácia
9.
Clin Nurs Res ; 31(2): 239-250, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34229475

RESUMO

This RCT and mixed-methods study examined the difference between two groups receiving the following interventions: (1) brief manual standardized stress acupuncture (MSSA) combined with an abbreviated Cognitive Behavioral Therapy (ACBT) versus (2) ACBT alone. Three study aims: Aim (1): Insomnia Severity Index (ISI) and Pittsburg Sleep Quality Index (PSQI) scores were analyzed using descriptive summaries, linear regression, and reliable change index (RCI). Aim (2): Journal entries were analyzed using content analysis. Aim (3): Acupuncture Expectancy Scale (AES) scores were analyzed using paired t-test and RCI. Aim (1): Both groups demonstrated similar improvements in the ISI scores (p = .480). Aim (2): The ACBT/MSSA group reported greater benefits in sleep and in other life areas including mental, physical, and social functioning. Aim (3): The AES showed that 21.6% had a clinically meaningful increase in expectations in the effect of acupuncture for stress (p = .965). The study was registered in ClinicalTrials.gov (NCT04031365) at https://clinicaltrials.gov/ct2/show/NCT04031365 on July 24, 2019.


Assuntos
Terapia por Acupuntura , Militares , Distúrbios do Início e da Manutenção do Sono , Transtornos do Sono-Vigília , Terapia por Acupuntura/métodos , Humanos , Militares/psicologia , Sono , Distúrbios do Início e da Manutenção do Sono/terapia , Transtornos do Sono-Vigília/terapia , Resultado do Tratamento
10.
Front Psychol ; 12: 794038, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34956022

RESUMO

Objective: The Inventory to Measure and Assess imaGe disturbance - Head and Neck (IMAGE-HN) is a validated patient-reported outcome measure of head and neck cancer-related body image-related distress (BID). However, the IMAGE-HN score corresponding to clinically relevant BID is unknown. The study objective is to determine the IMAGE-HN cutoff score that identifies head and neck cancer patients with clinically relevant BID. Methods: We conducted a cross-sectional study at six academic medical centers. Individuals ≥18 years old with a history of head and neck cancer treated with definitive intent were included. The primary outcome measure was the IMAGE-HN. A Receiver Operating Characteristic curve analysis was performed to identify the IMAGE-HN score that maximized sensitivity and specificity relative to a Body Image Scale score of ≥10 (which indicates clinically relevant BID in a general oncology population). To confirm the validity of the IMAGE-HN cutoff score, we compared the severity of depressive [Patient Health Questionnaire-9 (PHQ-9)] and anxiety symptoms [Generalized Anxiety Disorder-7 (GAD-7)], and quality of life [University of Washington-QOL (UW-QOL)] in patients with IMAGE-HN scores above and below the cutoff. Results: Of the 250 patients, 70.4% were male and the mean age was 62.3 years. An IMAGE-HN score of ≥22 was the optimal cutoff score relative to a Body Image Scale score of ≥10 and represents a clinically relevant level of head and neck cancer-related BID. Relative to those with an IMAGE-HN score of <22, patients with IMAGE-HN scores of ≥22 had a clinically meaningful increase in symptoms of depression (mean PHQ-9 score difference = 5.8) and anxiety (mean GAD-7 score difference = 4.1) as well as worse physical (mean UW-QOL score difference = 18.9) and social-emotional QOL (mean UW-QOL score difference = 21.5). Using an IMAGE-HN cutoff score ≥22, 28% of patients had clinically relevant BID. Conclusion: An IMAGE-HN score of ≥22 identifies patients with clinically relevant head and neck cancer-related BID. This score may be used to detect patients who could benefit from strategies to manage their distress, select patients for studies evaluating interventions to manage head and neck cancer-related BID, and improve our understanding of the underlying epidemiology of the disorder.

11.
JAMA Otolaryngol Head Neck Surg ; 147(12): 1019-1026, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-34236423

RESUMO

Importance: Body image-related distress (BID) is common among head and neck cancer (HNC) survivors and associated with significant morbidity. Risk factors for HNC-related BID remain poorly characterized because prior research has used outcome measures that fail to fully capture BID as experienced by HNC survivors. Objective: To assess the association of demographic and oncologic characteristics with HNC-related BID using the Inventory to Measure and Assess imaGe disturbancE-Head & Neck (IMAGE-HN), a validated, multidomain, patient-reported outcome measure of HNC-related BID. Design, Setting, and Participants: This cross-sectional study assessed 301 adult survivors of surgically managed HNC at 4 academic medical centers. Main Outcomes and Measures: The primary outcome measure was IMAGE-HN scores, for which higher scores reflect more severe HNC-related BID. Multivariable linear regression analyses were performed to evaluate the association of patient characteristics with IMAGE-HN global and 4 subdomain (other-oriented appearance concerns, personal dissatisfaction with appearance, distress with functional impairments, and social avoidance) scores. Results: Of the 301 participants (212 [70.4%] male; mean [SD] age, 65.3 [11.7] years), 181 (60.1%) underwent free flap reconstruction. Graduation from college (ß = -9.6; 95% CI, -17.5 to -1.7) or graduate school (ß = -12.6; 95% CI, -21.2 to -3.8) was associated with lower IMAGE-HN social avoidance scores compared with less than a high school education. Compared with paid work, unemployment was associated with higher IMAGE-HN other-oriented appearance (ß = 10.7; 95% CI, 2.0-19.3), personal dissatisfaction with appearance (ß = 12.5; 95% CI, 1.2-23.7), and global (ß = 8.0; 95% CI, 0.6-15.4) scores. Compared with no reconstruction, free flap reconstruction was associated with higher IMAGE-HN global scores (ß = 11.5; 95% CI, 7.9-15.0) and all subdomain scores (other-oriented appearance: ß = 13.1; 95% CI, 8.6-17.6; personal dissatisfaction with appearance: ß = 15.4; 95% CI, 10.0-20.7; distress with functional impairment: ß = 12.8; 95% CI, 8.1-17.4; and social avoidance and isolation: ß = 10.2; 95% CI, 5.8-14.6). Higher IMAGE-HN distress with functional impairment scores were found in those who received surgery and adjuvant radiation (ß = 7.8; 95% CI, 2.9-12.7) or chemoradiotherapy (ß = 6.5; 95% CI, 1.8-11.3) compared with surgery alone. The multivariable regression model accounted for a modest proportion of variance in IMAGE-HN global (R2 = 0.18) and subdomain scores (R2 = 0.20 for other-oriented appearance, 0.14 for personal dissatisfaction with appearance, 0.21 for distress with functional impairment, and 0.13 for social avoidance and isolation). Conclusions and Relevance: In this cross-sectional study, factors associated with risk of HNC-related BID included free flap reconstruction, lower educational attainment, unemployment, and multiple treatment modalities. These characteristics explain a modest proportion of variance in IMAGE-HN scores, suggesting that other characteristics may be the major risk factors for HNC-related BID and should be explored in future studies.


Assuntos
Insatisfação Corporal/psicologia , Sobreviventes de Câncer/psicologia , Neoplasias de Cabeça e Pescoço/psicologia , Neoplasias de Cabeça e Pescoço/terapia , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Quimiorradioterapia Adjuvante , Estudos Transversais , Feminino , Retalhos de Tecido Biológico , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Procedimentos de Cirurgia Plástica/psicologia , Fatores de Risco , Autorrelato , Fatores Socioeconômicos , Adulto Jovem
12.
J Clin Sleep Med ; 17(8): 1533-1543, 2021 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-33687323

RESUMO

STUDY OBJECTIVES: The purpose of this study was to describe the perceived benefits of manual standardized stress acupuncture (MSSA) for sleep disturbances in service members with deployment exposure. METHODS: This qualitative study was embedded in a 2-arm randomized controlled trial using mixed-methods research that evaluated the effect of weekly MSSA for 4 weeks as an adjunct treatment with abbreviated cognitive-behavioral therapy for insomnia (CBTi) for sleep disturbances in service members. Participants were randomized to either the experimental group (CBTi and MSSA) or the control group (CBTi only). The CBTi consisted of 1 group psychotherapy session for 60 minutes, follow-up telephone therapy for 30 minutes, and an additional four 30-minute follow-up sessions via telephone. Participants provided written journal entries by answering 5 open-ended questions about their treatment experiences at week 5 during the posttreatment assessment. Journal log entries were transcribed verbatim using the Dedoose software. A content analysis method was used to code emerging themes. RESULTS: Three overarching categories were found from the qualitative data: personal challenges in implementing the CBTi sleep strategies, no perception of improvement from treatment, and perceived benefits of treatment. The CBTi/MSSA group reported greater benefits in sleep and in other life areas including mental, physical, and social functioning using content analysis. CONCLUSIONS: Findings of this study showed greater improvements in participants' sleep, mood, physical health, and occupational and social functioning after receiving the combination of CBTi and MSSA. Future research that investigates the long-term effects of CBTi and MSSA may be beneficial among postdeployment service members. CLINICAL TRIAL REGISTRATION: Registry: ClinicalTrials.gov; Name: Jane J. Abanes; URL: https://clinicaltrials.gov/ct2/show/NCT04031365; Identifier: NCT04031365. CITATION: Abanes J, Ridner SH, Rhoten B. Perceived benefits of brief acupuncture for sleep disturbances in postdeployment military service members. J Clin Sleep Med. 2021;17(8):1533-1543.


Assuntos
Terapia por Acupuntura , Terapia Cognitivo-Comportamental , Militares , Transtornos do Sono-Vigília , Humanos , Sono , Transtornos do Sono-Vigília/terapia
13.
Support Care Cancer ; 29(1): 377-385, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32377842

RESUMO

PURPOSE: Patients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC. METHODS: Individuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data. RESULTS: Participants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions. CONCLUSIONS: Although patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.


Assuntos
Tomada de Decisões , Neoplasias de Cabeça e Pescoço/psicologia , Neoplasias de Cabeça e Pescoço/terapia , Recidiva Local de Neoplasia/terapia , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
14.
J Palliat Med ; 24(5): 680-688, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-32996842

RESUMO

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adolescente , Adulto , Ansiedade , Criança , Humanos , Cuidados Paliativos , Qualidade de Vida
15.
Mov Disord ; 36(3): 757-761, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33108688

RESUMO

BACKGROUND: Neuropsychiatric and cognitive symptoms account for substantial morbidity in Huntington's disease (HD), but their impact on functional status may not be captured using the Total Functional Capacity (TFC) scale. The objective of this study was to assess the impact of motor, cognitive, and neuropsychiatric symptoms on functional status in persons with HD, comparing two instruments. METHODS: Multiple regression analyses assessed the relationship between neuropsychiatric, cognitive, and motor symptoms and functional status as measured using TFC and Adult Functional Adaptive Behavior (AFAB) scales. RESULTS: Greater burden of neuropsychiatric (P = 0.017), cognitive (P = 0.001), and motor (P = 0.001) symptoms was associated with greater impairments to functional status as measured by the AFAB scale. Only motor symptoms were associated with TFC scores (P = 0.002). The 3 symptom domains explained more of the variance in AFAB than TFC scores (P = 0.016). CONCLUSIONS: TFC may have limited applicability, particularly in early-stage HD patients, as a measure of functional status. The AFAB scale can be used in HD studies as a more holistic measure of functional status. © 2020 International Parkinson and Movement Disorder Society.


Assuntos
Doença de Huntington , Transtornos dos Movimentos , Adulto , Estado Funcional , Humanos , Doença de Huntington/complicações
16.
Cancers (Basel) ; 12(12)2020 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-33266011

RESUMO

Shared-decision making for head and neck squamous cell carcinoma (HNSCC) is challenged by the difficulty to integrate the patient perception of value within the framework of a multidisciplinary team approach. The aim of this study was to develop a questionnaire to assess the preferences of HNSCC patients with respect to the disease trajectory, expected treatment, and toxicities. In accordance with the standardized EORTC Quality of Life Group's methodology for the development of quality of life modules, a phase 1-2 study was envisaged. Following a systematic review of the literature, a consolidated list of 28 issues was administered through a semi-structured interview to 111 patients from 7 institutions in 5 countries. Overall, "cure of disease", "survival", and "trusting in health care professionals" were the 3 most common priorities, being chosen by 87.3%, 73.6% and 59.1% of patients, respectively. When assessing the correlation with the treatment subgroup, the issue of "being thoroughly and sincerely informed about treatments' efficacy and survival expectation" was highly prevalent in an independent manner (71.4%, 75% and 90% of patients in the follow-up, palliative and curative subgroups, respectively). Based on prespecified scoring criteria, a 24-item list was generated. Pending clinical applicability, further testing and validation of the questionnaire are warranted.

17.
Pain Manag Nurs ; 21(6): 502-509, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32475696

RESUMO

BACKGROUND: There is currently no gold standard instrument for assessing pain in severely cognitively impaired adults who are unable to provide self-report. AIMS: To determine interrater reliability of the PACSLAC and PAINAD in assessing pain behaviors in patients with the same pain stimulus, determine the consistency of the reliable changes between and within the instruments and assess nurse preference for either instrument. DESIGN: A single-group, within-subjects repeated-measures design was implemented. SETTING: The study took place in a small suburban hospital. PARTICIPANTS/SUBJECTS: Pain levels were observed at 24, 48, and 72 hours postsurgery using two instruments: Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and Pain Assessment in Advanced Dementia Scale (PAINAD). These instruments were selected because they are among the most commonly recommended tools for clinical use. Interrater reliability was analyzed along with reliable changes in pain for each period, and the study concluded with the nurse raters completing a preference survey. METHODS: A convenience sample of 30 patients was used with a diagnosis of severe dementia rendering the patient unable to reliably express pain, 60+ years of age, recovering from hip fracture surgery. RESULTS: Greater interrater reliability was found for the PACSLAC, with reliable change potentially affected by the type and level of pain medication. The nurses' preference for the tool was split. CONCLUSIONS: The results of this study indicate that the PACSLAC may be the more reliable tool over the PAINAD; however, rater training and familiarity with the tool is critical.


Assuntos
Barreiras de Comunicação , Demência/complicações , Medição da Dor/normas , Dor Pós-Operatória/etiologia , Psicometria/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Demência/fisiopatologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medição da Dor/métodos , Medição da Dor/estatística & dados numéricos , Dor Pós-Operatória/fisiopatologia , Psicometria/instrumentação , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários
18.
J Sex Med ; 17(8): 1529-1537, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32417203

RESUMO

BACKGROUND: Head and neck cancer and its treatment can cause impairment in survivors' sexuality. Previous studies show a need for education and psychological support. AIM: To examine patients' priorities and preferences for discussing and receiving information about sexuality and to examine patient perceptions of existing self-report measures used in research. METHODS: This descriptive, cross-sectional, Web-based study recruited adults with a current or previous diagnosis of head and neck cancer. Participants answered questions about their priority and preference for receiving information about sexuality and reviewed 4 self-report measures commonly used in the research of this population. RESULTS: More than 80% (n = 61) of participants reported that it was important to receive information about sexual issues. Participants chose "at the time of diagnosis" as the most frequent answer for preferred time to receive this information. Half of the participants (n = 35) indicated that they prefer discussing sexual issues with a health-care provider. The most frequent answer for the method of receiving information was through discussions. Participants endorsed 4 themes not addressed by self-report surveys: (i) elicitation of important information, (ii) symptom burden issues, (iii) psychological issues, and (iv) physical barriers. CLINICAL IMPLICATIONS: Providers, regardless of specialty, must attempt or facilitate discussions around these issues at various times within the treatment and recovery phases. STRENGTHS & LIMITATIONS: Although limited by sample representation and cross-sectional design, this study addresses an important patient-centered issue that is a critical aspect of quality of life. CONCLUSIONS: Patients prefer to discuss sexual issues in person with their health-care providers at the time of diagnosis. Participants reacted positively to the self-report measures, but they felt that important issues faced by patients with head and neck cancer were not fully addressed. Rhoten BA, Davis AJ, Baraff BN, et al. Priorities and Preferences of Patients With Head and Neck Cancer for Discussing and Receiving Information About Sexuality and Perception of Self-Report Measures. J Sex Med 2020;17:1529-1537.


Assuntos
Neoplasias de Cabeça e Pescoço , Qualidade de Vida , Adulto , Estudos Transversais , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Percepção , Autorrelato , Sexualidade , Inquéritos e Questionários
19.
Mil Med ; 185(1-2): e17-e22, 2020 02 13.
Artigo em Inglês | MEDLINE | ID: mdl-31247110

RESUMO

INTRODUCTION: Given the role of perceived stress in disability and suicidality in the military, intervening early before service members become at risk for severe injuries, hospitalizations, and chronic disability could improve health outcomes. The purpose of this study was to explore the feasibility and acceptability of a standardized stress acupuncture (SSA) approach on perceived stress in U.S. military personnel. This study had the following aims: examine feasibility of recruitment for SSA and implementation of study procedures in preparation for a methodologically rigorous study; examine acceptability of SSA treatment in a sample of military personnel with perceived stress; and examine change in perceived stress and general health before and after SSA. MATERIALS AND METHODS: This was a single-arm, single-site study protocol which assessed the feasibility of SSA in 16 patients with perceived stress. Upon IRB approval and written informed consent, the participants received 4 weekly sessions of SSA which consisted of 6 acupuncture points. RESULTS: This study showed that recruitment and implementation of SSA is feasible in service members. Service members found SSA to be acceptable. Statistically significant increases were found on the energy/fatigue, well-being, and social functioning components of the Short Form Health Survey (SF 36) (reliable change: 50%, 56%, and 25% respectively, Cohen's d = 0.72-0.78, all p < 0.05). A statistically significant decrease in perceived stress based was found on the Perceived Stress Scale (PSS) (reliable change 63%, Cohen's d = 1.03, p = 0.001). CONCLUSION: These results suggest that SSA is a feasible and acceptable treatment for perceived stress in military personnel. Preliminary findings suggest that SSA may be useful in improving energy/fatigue, social functioning, and perceived stress of service members.


Assuntos
Terapia por Acupuntura , Militares , Estresse Psicológico , Fadiga/terapia , Estudos de Viabilidade , Humanos , Estresse Psicológico/terapia
20.
Lymphat Res Biol ; 17(6): 661-670, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31381475

RESUMO

Background: Symptoms associated with midline lymphedema are not fully understood and it is unclear if symptoms associated with swelling in the head and neck are similar to those associated with swelling in the truncal region of the body. Objectives: Describe symptoms experienced by those with head and neck and truncal lymphedema. Compare symptom presence, intensity, and distress among those two groups and participants with no lymphedema. Methods: Cross-sectional descriptive study administered by online survey. Results: Nonlymphedema participants were younger than the lymphedema groups. Those with truncal lymphedema took more diuretic medications than the other groups. Participants with truncal lymphedema experienced a greater number of symptoms than the other groups (p < 0.001). These symptoms were also more severe and intense (p < 0.001). Fourteen symptoms distinguished the truncal group from the other two groups (p < 0.001). Nine symptoms differentiated the head and neck group from the other groups (p < 0.001). Conclusion: These preliminary findings support that symptom profiles differ among those with lymphedema and those without lymphedema. The number, type, severity, and intensity of symptoms vary based upon the location of lymphedema. The need to use two lymphedema anatomical classifications (head and neck and truncal) instead of one classification (midline) when assessing lymphedema-related symptoms is also supported.


Assuntos
Cabeça/patologia , Linfedema/diagnóstico , Pescoço/patologia , Adulto , Estudos de Casos e Controles , Estudos Transversais , Feminino , Humanos , Linfedema/etiologia , Pessoa de Meia-Idade , Tamanho do Órgão , Avaliação de Sintomas
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