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OBJECTIVE: We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND: Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS: Patients were recruited at 2 health care institutions as part of a larger prospective study. They were enrolled if they had a diagnosis of nonhepatocellular carcinoma ESLD, Sodium Model for End-Stage Liver Disease ≥15, and no prior history of liver transplantation. Uncertainty, coping, optimism, and pessimism were assessed using the Uncertainty in Illness Scale for Adults, Revised Ways of Coping Checklist, and Life Orientation Test-revised. AD documentation at the time of study enrollment was retrospectively extracted from patient medical records. RESULTS: In the sample [N = 181; median age = 57 y, 115 (64%) males], male sex [odds ratio (OR) = 4.66; 95% CI: 1.53, 14.17], being listed or under evaluation for liver transplantation (OR = 3.09; 95% CI: 1.10, 8.67), greater Sodium Model for End-Stage Liver Disease scores (OR = 1.10; 95% CI: 1.01, 1.20), and greater uncertainty (OR = 1.04; 95% CI: 1.01, 1.07) were positively associated with AD documentation. Higher coping avoidance was negatively associated with AD documentation (OR = 0.915; 95% CI: 0.840, 0.997). CONCLUSIONS: Clinicians should consider the role of uncertainty and coping measures to improve patient-specific advance care planning conversations and expand opportunities for all patients with ESLD to file an AD, especially women and patients not listed or under evaluation for transplantation.
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PURPOSE: Lung cancer is a disease with high mortality and morbidity, impacting both the patient and their closest contact, referred to in this paper as their care partner. There is limited evidence on how to support mental health and quality of life (QOL) for patient-care partner dyads during cancer treatment. This pilot study examines yoga as an intervention to improve well-being for the dyad. METHODS: A single-group, 12-week pilot trial of yoga for patients and their care partners recruited from two hospitals during cancer treatment (N = 23 patient-partner dyads or 46 individuals). Most care partners were spouses (70%), with the remainder being adult children (22%), a sibling (4%), or a friend (4%). Descriptive statistics, Cohen's d effect sizes, and paired t-tests for validated psychosocial measures were calculated at baseline and 12 weeks. RESULTS: Sixty-five percent of dyads (N = 13) completed the study, with withdrawals mostly due to disease progression. Among care partners, there was a decrease in depression symptomology on the PHQ-8 (p = 0.015, Cohen's d = 0.96) and improvement in QOL on the Caregiver QOL-Cancer scale (p = 0.001, Cohen's d = 0.61). Fifty percent of dyads experienced concordant improvement in depressive symptoms and 77% in QOL. CONCLUSION: Patient-partner yoga is a promising intervention for improving mental health and QOL for patient-partner dyads among lung cancer survivors. This study demonstrates yoga to be acceptable, feasible, and with high concordance within patient-partner dyads for improvements in QOL. Yoga shows promise for patients and care partners to alleviate the negative psychosocial impacts of lung cancer, though more research is needed to confirm effects. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03649737, 12/9/2020.
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Cuidadores , Neoplasias Pulmonares , Qualidade de Vida , Yoga , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , Depressão/etiologia , Depressão/terapia , Neoplasias Pulmonares/psicologia , Neoplasias Pulmonares/terapia , Projetos PilotoRESUMO
Parental chronic pain is associated with adverse outcomes in children, but the mechanisms of transmission are largely untested. Mothers with chronic pain (N = 400, Mage = 40.3 years, 90.5% White) and their children (Mage = 10.33 years, 83.3% White, 50.2% female) were recruited in 2016-2018 to test longitudinal pathways of risk transmission from maternal chronic pain to children's psychological symptoms, examining roles of parenting, maternal depression, and child distress tolerance. Maternal pain was associated with positive (ß = .28) and pain-specific (ß = .10) parenting behaviors. Maternal depression was associated with lower child distress tolerance (ß = -.03), which was associated with greater child psychological symptoms (ß = -.62). Parenting and maternal pain were not prospectively associated with child outcomes. When considering the dual-generational impacts of chronic pain, physical and psychological functioning should be examined.
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OBJECTIVE: This study aimed to characterize mobility patterns using wearable inertial sensors and serial assessment across autologous hematopoietic cell transplant (autoHCT) and investigate the relation between mobility and perceived function in patients with hematologic cancer. DESIGN: Prospective longitudinal study. SETTING: Hospital adult transplant clinic followed by discharge. PARTICIPANTS: 78 patients with hematological cancer receiving autoHCT. MAIN OUTCOME MEASURES: Mobility was measured across 3 clinical phases (pretransplant, pre-engraftment, and post-engraftment) in using inertial sensors worn during prescribed performance tests in the hospital. Perceived function was assessed using validated provider-reported (Eastern Cooperative Oncology Group [ECOG] Performance Status Scale) and patient-reported [European Organization for Research and Treatment of Cancer Quality of Life Questionnaire [EORTC QLQ-C30]) measures. Trajectories of 5 selected mobility characteristics (turn duration, gait speed, stride time variability, double support time, and heel strike angle) across the clinical phases were also evaluated using piecewise linear mixed-effects models. RESULTS: Using Principal Components Analysis, 4 mobility patterns were identified pretransplant: Gait Limitation, Sagittal Sway, Coronal Sway, and Balance Control. Gait Limitation measured pretransplant was significantly inversely associated with perceived function reported by the provider- (ß = -0.11; 95% CI: -0.19, -0.02) and patient- (ß = -4.85; 95% CI: -7.72, -1.99) post-engraftment in age-adjusted linear regression models. Mobility characteristics demonstrated immediate declines early pre-engraftment with stabilization by late pre-engraftment. CONCLUSION: Patients with hematological cancer experiencing gait limitations pretransplant are likely to have worse perceived function post-engraftment. Mobility declines in early phases post-transplant and may not fully recover, indicating an opportunity for timely rehabilitation referrals. Wearable inertial sensors can be used to identify early mobility problems and patients who may be at risk for future functional decline who may be candidates for early physical rehabilitation.
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Neoplasias Hematológicas , Transplante de Células-Tronco Hematopoéticas , Dispositivos Eletrônicos Vestíveis , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Prospectivos , Neoplasias Hematológicas/reabilitação , Estudos Longitudinais , Adulto , Transplante Autólogo , Equilíbrio Postural/fisiologia , Idoso , Limitação da Mobilidade , Qualidade de Vida , Velocidade de Caminhada/fisiologiaRESUMO
BACKGROUND: Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. OBJECTIVES: The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. METHODS: Care partners (aged >18 years) were recruited from two liver clinics within two tertiary healthcare systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. RESULTS: The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at a greater risk of worse well-being were younger and spouses and had poorer relationship quality with the patients. DISCUSSION: To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing the strain and symptoms has the potential to maintain or optimize care partners' ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients' disease progression and symptoms may affect family care partners' well-being and vice versa.
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Cuidadores , Doença Hepática Terminal , Qualidade de Vida , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Cuidadores/psicologia , Qualidade de Vida/psicologia , Estudos Transversais , Doença Hepática Terminal/psicologia , Doença Hepática Terminal/complicações , Adulto , Idoso , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Adverse childhood experiences (ACEs) and suboptimal sleep both negatively associate with cardiovascular health. Although an association between ACEs and suboptimal sleep in youth has been reported, there has been no investigation for differential effects among ACE subdomains. OBJECTIVE: We examined associations between total and subdomain ACEs and sleep duration, and age as a moderator. METHODS: Using the 2020-2021 National Survey of Children's Health and the American Heart Association Life's Essential 8 scoring algorithm, we created 3 sleep subgroups: (1) optimal, (2) suboptimal (≥1 to <2 hours below or ≥1 hour above optimal), and (3) very suboptimal (≥2 hours below optimal). We assessed association between ACEs (total and subdomains) and sleep duration using multinomial logistic regression, controlling for sex, age, race/ethnicity, caregiver's education, household income, habitual bedtime, and physical activity. We tested the interactions between ACEs and child's age. RESULTS: In children aged 6 to 17 years (N = 58 964), mean sleep duration score was 77.2 (95% confidence interval, 76.6-77.9). The mean number of ACEs was 0.89 (95% confidence interval, 0.87-0.91). Adjusting for covariates, each additional ACE increased the likelihood of falling into the suboptimal subgroup by 8% and the very suboptimal subgroup by 26%. There was an association between each subdomain of ACE and suboptimal sleep duration, with no significant interaction with age. CONCLUSIONS: Our findings show a dose-response relationship between ACEs and suboptimal sleep duration-a new cardiovascular health indicator in Life's Essential 8. Healthcare providers should screen for ACEs and suboptimal sleep in children to reduce future cardiovascular disease risk.
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Palliative Care (PC) is an interdisciplinary specialty focused on relieving symptoms and optimizing quality of life for people living with serious illnesses and their families. A great need for PC exists in Saudi Arabia due to its aging population and prevalence of cancer and other chronic diseases. Home healthcare can make PC more accessible to patients, but clinicians must be equipped with the PC knowledge and skills to perform their roles. This study was a descriptive, correlational examination of PC practices and knowledge of home care nurses recruited from military hospitals in Saudi Arabia. We surveyed participants using the Palliative Care Quiz for Nursing (PCQN) and the Modified Global Home Health Nursing Care Assessment Questionnaire. The mean PCQN score was 8.40, indicating low levels of PC knowledge. A nurses' demographic and physical, spiritual, religious, cultural, linguistic, ethical, and legal aspects of care revealed significant associations. Given the low levels of PC knowledge and skills, we recommend focusing on education, training, and research. Universities should review their curriculum to ensure PC content. Hospitals should provide training programs focused on all aspects of PC, specifically emotional and spiritual, without limiting training to physical aspects of care. Future research is also needed to inform policy in this area.
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Cuidados Paliativos , Humanos , Arábia Saudita , Estudos Transversais , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Conhecimentos, Atitudes e Prática em Saúde , Serviços de Assistência Domiciliar , Competência Clínica , Enfermagem DomiciliarRESUMO
The lack of sex-specific variables, such as reproductive system history (RSH), in cardiovascular research studies is a missed opportunity to address the cardiovascular disease (CVD) burden, especially among women who face sex-specific risks of developing CVD. Collecting RSH data from women enrolled in research studies is an important step towards improving women's cardiovascular health. In this paper, we describe two approaches to collecting RSH in CVD research: extracting RSH from the medical record and participant self-report of RSH. We provide specific examples from our own research and address common data management and statistical analysis problems when dealing with RSH data in research.
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Doenças Cardiovasculares , Enfermagem Cardiovascular , Pesquisa em Enfermagem , Masculino , Feminino , Humanos , Saúde da Mulher , Genitália , Saúde ReprodutivaRESUMO
Purpose: Individuals identified as high fall risk are expected to have high concern about falling. However, perception and individual factors that influence concern about falling have yet to be thoroughly studied. We aimed to understand factors that influence concern about falling among older adults with increased risk for falling. Patients and Methods: This was a secondary analysis of a clinical trial among community-dwelling older adults (age ≥65 years old) at high risk for falls (n = 178). Descriptive and regression analyses were used. We analyzed the relationship between participants' baseline concern about falling - categorized into three groups: low (7-8), moderate (9-13), and high (≥14) - and factors that may impact their concern. Exploratory factors included age, sex, self-reported health status and confidence to address fall risks, fall risk scores, and physical performance measures. Results: Among these individuals, 15.2% reported low concern about falling. On average, individuals in higher concern about falling groups had higher fall risk scores (low [5.7], moderate [6.4], and high [8.0]; p < 0.001). Our regression model showed that the odds of being in a higher concern group increased by 21% for every one unit increase in fall risk score and increased by 67% for every one unit increase toward poorer health rating. Conversely, for every one unit increase in self-reported confidence, the odds of being in a higher concern group decreased by 27.5%. Conclusion: Knowledge of older adults' fall risk, health status, and concerns about falling can be used to assist in the personalization of fall prevention interventions for a more holistic approach.
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Acidentes por Quedas , Nível de Saúde , Vida Independente , Autorrelato , Humanos , Acidentes por Quedas/prevenção & controle , Masculino , Idoso , Feminino , Idoso de 80 Anos ou mais , Fatores de Risco , Medição de Risco , Avaliação GeriátricaRESUMO
Background: Androgen deprivation therapy (ADT) increases the risk of frailty, falls, and, poor physical functioning in prostate cancer survivors. Detection of frailty is limited to self-report instruments and performance measures, so unbiased tools are needed. We investigated relationships between an unbiased measure - daily life mobility - and ADT history, frailty, falls, and functioning in ADT-treated prostate cancer survivors. Methods: ADT-treated prostate cancer survivors (N=99) were recruited from an exercise clinical trial, an academic medical center, and the community. Participants completed performance measures and surveys to assess frailty, fall history, and physical functioning, then wore instrumented socks to continuously monitor daily life mobility. We performed a principal component analysis on daily life mobility metrics and used regression analyses to investigate relationships between domains of daily life mobility and frailty, fall history, and physical functioning. Results: Daily life mobility metrics clustered into four domains: Gait Pace, Rhythm, Activity, and Balance. Worse scores on Rhythm and Activity were associated with increased odds of frailty (OR 1.59, 95% CI: 1.04, 2.49 and OR 1.81, 95% CI: 1.19, 2.83, respectively). A worse score on Rhythm was associated with increased odds of ≥1 falls in the previous year (OR 1.60, 95% CI: 1.05, 2.47). Worse scores on Gait Pace, Rhythm, and Activity were associated with worse physical functioning. Mobility metrics were similar between current and past users of ADT. Conclusions: Continuous passive monitoring of daily life mobility may identify prostate cancer survivors who have or are developing risk for frailty, falls, and declines in physical functioning.
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INTRODUCTION: Little has been reported about the clinical relevance and trajectories of symptoms in end-stage liver disease (ESLD). The purpose of this prospective study was to identify trajectories of change in symptom burden over the course of 12 months in adults with ESLD. METHODS: Patients were recruited from hepatology clinics at 2 healthcare systems. Validated measures were used to assess physical and psychological symptoms. Latent growth mixture modeling and survival and growth modeling were used to analyze the survey data. RESULTS: Data were available for 192 patients (mean age 56.5 ± 11.1 years, 64.1% male, mean Model for ESLD (MELD) 3.0 19.2 ± 5.1, ethyl alcohol as primary etiology 33.9%, ascites 88.5%, encephalopathy 70.8%); there were 38 deaths and 39 liver transplantations over 12 months. Two symptom trajectories were identified: 62 patients (32.3%) had high and unmitigated symptoms, and 130 (67.7%) had lower and improving symptoms. Patients with high and unmitigated symptoms had twice the hazard of all-cause mortality (subhazard ratio 2.53, 95% confidence interval: 1.32-4.83) and had worse physical ( P < 0.001) and mental quality of life ( P = 0.012) compared with patients with lower and improving symptoms. Symptom trajectories were not associated with MELD 3.0 scores ( P = 0.395). Female sex, social support, and level of religiosity were significant predictors of symptom trajectories ( P < 0.05 for all). DISCUSSION: There seems to be 2 distinct phenotypes of symptom experience in patients with ESLD that is independent of disease severity and associated with sex, social support, religiosity, and mortality. Identifying patients with high symptom burden can help optimize their care.
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OBJECTIVES: To describe changes in daily life mobility in prostate cancer survivors treated with androgen deprivation therapy (ADT) after a 6-month exercise intervention using novel instrumented socks and to identify characteristics of participants who exhibited changes in daily life mobility. METHODS: A subset of participants in a fall prevention exercise trial completed objective tests and patient-reported surveys of physical functioning, and wore instrumented socks for up to 7 days to measure daily life mobility. Changes in cadence, double support proportion, and pitch angle of the foot at toe-off were selected as measures of daily life mobility previously found to be different in men exposed to ADT for prostate cancer versus controls. Daily life mobility was compared from baseline to 6 months using paired t-tests. Characteristics of responders who improved their daily life mobility were compared to nonresponders using two-sample t-tests, Chi-squared proportion tests, or Fisher's Exact Tests. RESULTS: Our sample included 35 prostate cancer survivors (mean age 71.6 ± 7.8 years). Mean cadence, double support proportion, and pitch angle at toe-off did not change significantly over 6 months of exercise, but 14 participants (40%) improved in at least two of three daily life mobility measures ("responders"). Responders were characterized by lower physical functioning, lower cadence in daily life, fewer comorbidities, and better social and mental/emotional functioning. CONCLUSIONS: Certain daily life mobility measures potentially impacted by ADT could be measured with instrumented socks and improved by exercise. Men who start with lower physical functioning and better social and mental/emotional functioning appear most likely to benefit, possibly because they have more to gain from exercise and are able to engage in a 6-month intervention. IMPLICATIONS FOR NURSING PRACTICE: Technology-based approaches could provide nurses with an objective measure of daily life mobility for patients with chronic illness and detect who is responding to rehabilitation.
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Atividades Cotidianas , Antagonistas de Androgênios , Sobreviventes de Câncer , Terapia por Exercício , Neoplasias da Próstata , Humanos , Masculino , Neoplasias da Próstata/tratamento farmacológico , Idoso , Antagonistas de Androgênios/uso terapêutico , Terapia por Exercício/métodos , Pessoa de Meia-Idade , Qualidade de Vida , Idoso de 80 Anos ou maisRESUMO
PURPOSE: To determine whether strength training or tai ji quan can reduce frailty in older, postmenopausal women treated with chemotherapy for cancer. METHODS: We conducted a secondary data analysis from a 3-arm, single-blind, randomized controlled trial where older (50-75 years), postmenopausal women cancer survivors were randomized to supervised group exercise programs: tai ji quan, strength training, or stretching control for 6 months. We assessed frailty using a 4-criteria model consisting of weakness, fatigue, inactivity, and slowness. Using logistic regression, we determined whether the frailty phenotype (pre-frailty or frailty) decreased post-intervention, how many and which frailty criteria decreased, and what characteristics identified women most likely to reduce frailty. RESULTS: Data from 386 women who completed baseline and 6-month testing were used (mean age of 62.0 ± 6.4 years). The odds of reducing overall frailty over 6 months were significantly higher in the strength training group compared to controls (OR [95%CI] 1.86 [1.09, 3.17]) but not for tai ji quan (1.44 [0.84, 2.50]). Both strength training (OR 1.99 [1.10, 3.65]) and tai ji quan (OR 2.10 [1.16, 3.84]) led to significantly higher odds of reducing ≥ 1 frailty criterion compared to controls. Strength training led to a three-fold reduction in inactivity (p < 0.01) and tai ji quan to a two-fold reduction in fatigue (p = 0.08) versus control. Higher baseline BMI, comorbidity score, and frailty status characterized women were more likely to reduce frailty than other women. CONCLUSIONS: Strength training appears superior to tai ji quan and stretching with respect to reducing overall frailty phenotype among postmenopausal women treated with chemotherapy for cancer, but tai ji quan favorably reduced the number of frailty criteria. TRIAL REGISTRATION: ClinicalTrials.gov identifier: GET FIT was registered as a clinical trial in clinicaltrials.gov: NCT01635413. IMPLICATIONS FOR CANCER SURVIVORS: Supervised, group exercise training that emphasizes strength training and/or tai ji quan may help combat accelerated aging and reduce frailty after cancer treatment.