Background--Although current guidelines emphasize the importance of social support to the success of left ventricular assist device (LVAD) therapy, few studies examine the influence of the caregiver on patient outcomes or quantify the impact of LVAD caregiving on caregiver outcomes. The purpose of this analysis was to identify patient and caregiver determinants of patient quality of life (QOL) and caregiver strain in response to LVAD therapy. Methods and Results--Data on patients receiving LVAD therapy and their caregivers (n=50 dyads) were prospectively collected pre-implantation and 1, 3, and 6 months post-implantation. Growth curve modeling was used to describe change in patient QOL (Kansas City Cardiomyopathy Questionnaire) and caregiver strain (Multidimensional Caregiver Strain Index). Patient QOL improved most in the first month (β=23.22±3.76, P < 0.001), followed by gradual gains over 6 months (β=1.90±0.64, P<0.01). Caregivers experienced worsening of strain in the first month (β=4.30±1.42, P < 0.01), followed by gradual resolution to pre-implantation levels by 6 months (β=-0.71±0.23, P < 0.01). Worse pre-implantation patient symptoms were associated with greater improvement in patient QOL (β=0.53±0.19, P < 0.01) but worsening caregiver strain (β=0.15±0.07, P=0.04). Better relationship quality was associated with greater improvement in patient QOL (β=14.39±5.85, P=0.01) and less pre-implantation caregiver strain (β=-9.31±2.28, P < 0.001). Nonspousal caregivers experienced less pre-implantation strain (β=-8.60±3.10, P=0.01), and patients with nonspousal caregivers had less improvement in QOL (β=-3.70±1.62, P=0.02). Conclusions--A combination of patient and caregiver characteristics predicts patient and caregiver response to LVAD therapy. Including caregiver factors in future studies may be helpful in developing interventions that improve patient and caregiver outcomes, together.
Aim: Preliminary content validity testing of a UK Patient Reported Outcome Measure (PROM) for use in cardiac arrhythmia patients undergoing ablation treatment. Methods: Twenty five patients diagnosed with symptomatic cardiac arrhythmias participated in qualitative interviews to obtain their perspective of a draft PROM. As part of the process to establish preliminary content validity, patients were asked to complete the questionnaires and to identify missing and redundant items within the PROM, while also reviewing the instructions and formatting. The questionnaires were updated iteratively to reflect patient feedback. Results: Recurring themes were identified during qualitative interviews leading to improvements to the tool. Following modification of the PROM, based on patient feedback, subjects reported that the tool was fully inclusive and easy to comprehend. Patients found the instructions and layout of the tool acceptable and easy to use. Conclusion: Qualitative patient interviews are an important part of PROM tool development. In the case of this cardiac ablation PROM, it enabled end users to assess the tool for inclusivity and accessibility, and to ensure that it addressed concerns important to the patient. Cognitive interviews were able to obtain patients' perspectives to establish face validity and content validity of the PROM. This is part of a process which will ensure that this disease-specific PROM measures cardiac arrhythmia patient symptoms and impact on patients' lives accurately and sensitively. The next study will use the PROM prospectively in over 450 arrhythmia patients to prospectively validate the tool. Condensed abstract: Patients diagnosed with symptomatic cardiac arrhythmias provided feedback through cognitive interviews to facilitate improvements in a new disease specific PROM establishing preliminary face and content validity.
by
Lori N. Eidson;
George T. Kannarkat;
Christopher J. Barnum;
Jianjun Chang;
Jaegwon Chung;
Chelsea Caspell-Garcia;
Peggy Taylor;
Brit Mollenhauer;
Michael G. Schlossmacher;
Larry Ereshefsky;
Mark Yen;
Catherine Kopil;
Mark Frasier;
Kenneth Marek;
Vicki Hertzberg;
MariadeLourdes Tansey
Background: Efforts to identify fluid biomarkers of Parkinson's disease (PD) have intensified in the last decade. As the role of inflammation in PD pathophysiology becomes increasingly recognized, investigators aim to define inflammatory signatures to help elucidate underlying mechanisms of disease pathogenesis and aid in identification of patients with inflammatory endophenotypes that could benefit from immunomodulatory interventions. However, discordant results in the literature and a lack of information regarding the stability of inflammatory factors over a 24-h period have hampered progress. Methods: Here, we measured inflammatory proteins in serum and CSF of a small cohort of PD (n=12) and age-matched healthy control (HC) subjects (n=6) at 11 time points across 24h to (1) identify potential diurnal variation, (2) reveal differences in PD vs HC, and (3) to correlate with CSF levels of amyloid β (Aβ) and α-synuclein in an effort to generate data-driven hypotheses regarding candidate biomarkers of PD. Results: Despite significant variability in other factors, a repeated measures two-way analysis of variance by time and disease state for each analyte revealed that serum IFNγ, TNF, and neutrophil gelatinase-associated lipocalin (NGAL) were stable across 24h and different between HC and PD. Regression analysis revealed that C-reactive protein (CRP) was the only factor with a strong linear relationship between CSF and serum. PD and HC subjects showed significantly different relationships between CSF Aβ proteins and α-synuclein and specific inflammatory factors, and CSF IFNγ and serum IL-8 positively correlated with clinical measures of PD. Finally, linear discriminant analysis revealed that serum TNF and CSF α-synuclein discriminated between PD and HC with a minimum of 82% sensitivity and 83% specificity. Conclusions: Our findings identify a panel of inflammatory factors in serum and CSF that can be reliably measured, distinguish between PD and HC, and monitor inflammation as disease progresses or in response to interventional therapies. This panel may aid in generating hypotheses and feasible experimental designs towards identifying biomarkers of neurodegenerative disease by focusing on analytes that remain stable regardless of time of sample collection.
Autism spectrum disorder (ASD) refers to a lifelong condition that usually appears in late infancy or early childhood, and is characterized by social and communication deficits that impede optimal functioning. Despite widespread research and greater public awareness, ASD has an unclear etiology and no known cure, making it difficult to acquire accurate and timely diagnoses. In addition, once an ASD diagnosis is made, parents find it challenging to navigate the healthcare system and determine which interventions are most effective and appropriate for their child. A growing body of evidence supports the value of early diagnosis and treatment with evidence-based interventions, which can significantly improve the quality of life of individuals with ASD as well as of their carers and families. Particularly noteworthy are early interventions that occur in natural surroundings and can be modified to address age-related goals throughout the lifespan. Therefore, the purpose of this review is to: 1) provide readers with a brief background related to ASD; 2) describe commonly used screening instruments and tools for early diagnosis; 3) describe early interventions that have empirical support; and 4) discuss how the parent–child and family relationships can be affected through this process. This information can provide professionals with information they can use to assist families who make critical and potentially life-changing decisions for children with ASD.
This article highlights challenges in recruitment, retention, attrition, data collection, and analysis when studying dyads in cardiovascular research. Including family members in studies is particularly important because family members often have a major role in treatment of patients with cardiovascular illness. The partnership of a patient–family member is referred to as a dyad and may include the cardiovascular patient and another relative, such as an adult child, sibling, spouse, son-in-law or daughter-in-law, or unmarried partner. Insights gained from previous research may facilitate and improve rigor when reviewing and conducting studies involving dyads with cardiovascular and other chronic diseases. Including patients and partners in descriptive and intervention studies will allow researchers to more fully explore family factors that may be salient in health outcomes.
Objective: (i) To compare the prevalence and severity of depressive symptoms between men and women enrolled in a large heart failure (HF) registry. (ii) To determine gender differences in predictors of depressive symptoms from demographic, behavioral, clinical, and psychosocial factors in HF patients. Methods: In 622 HF patients (70% male, 61 ± 13 years, 59% NYHA class III/IV), depressive symptoms were assessed by the Patient Health Questionnaire (PHQ-9). Potential correlates were age, ethnicity, education, marital and financial status, smoking, exercise, body mass index (BMI), HF etiology, NYHA class, comorbidities, functional capacity, anxiety, and perceived control. To identify gender-specific correlates of depressive symptoms, separate logistic regression models were built by gender. Results: Correlates of depressive symptoms in men were financial status (p = 0.027), NYHA (p = 0.001); functional capacity (p < 0.001); health perception (p = 0.043); perceived control (p = 0.002) and anxiety (p < 0.001). Correlates of depressive symptoms in women were BMI (p = 0.003); perceived control (p = 0.013) and anxiety (p < 0.001). Conclusions: In HF patients, lowering depressive symptoms may require gender-specific interventions focusing on weight management in women and improving perceived functional capacity in men. Both men and women with HF may benefit from anxiety reduction and increased control.
Vascular endothelial dysfunction is associated with increased risk for adverse cardiovascular (CV) events. However, less is known about sex differences in the endothelial function of untreated hypertensive individuals. The purpose of this study was to assess endothelial function in women and men with untreated hypertension. Ninety participants (35 women, 55 men), aged 40 to 60years (mean age, 46.1±8.2years), with untreated stage 1 hypertension (systolic blood pressure 140-159mmHg and/or diastolic blood pressure 90-99mmHg) underwent brachial artery endothelial-dependent flow-mediated dilation and endothelial-independent glyceryl trinitrate dilation. Women had a smaller flow-mediated dilation response than men (adjusted mean±standard error of the mean [SEM]; 1.8±0.6% vs 3.9±0.4%, P=.036), adjusting for baseline arterial diameter (P=.004), age (P=.596), ethnicity (P=.496), log shear stress ratio (P<.001), body mass index (P=.009), 24-hour diastolic blood pressure (P=.169), high-density lipoprotein (P=.225), log creatinine (P=.927), and log physical activity (P=.682). Glyceryl trinitrate dilation did not differ by sex in adjusted models. Women between the ages of 40 and 60years with untreated stage 1 hypertension exhibited a greater impairment of endothelial function compared with their male counterparts. These findings raise the possibility that female sex may impart a greater risk of CV events in patients with untreated stage 1 hypertension potentially due to poorer endothelial function.
Background:Gender-based clinical differences are increasingly being identified as having significant influence on the outcomes of patients with cardiovascular disease (CVD), including atrial fibrillation (AF).Objective:To perform detailed clinical phenotyping on a cohort of hospitalised patients with chronic forms of AF to understand if gender-based differences exist in the clinical presentation, thrombo-embolic risk and therapeutic management of high risk patients hospitalised with chronic AF.Methods:We are undertaking the Standard versus Atrial Fibrillation spEcific managemenT studY (SAFETY) - a multi-centre, randomised controlled trial of an AF-specific management intervention versus usual care. Extensive baseline profiling of recruited patients was undertaken to identify gender-specific differences for risk delineation.Results:We screened 2,438 patients with AF and recruited 335 into SAFETY. Of these, 48.1% were women who were, on average, 5 years older than their male counterparts. Women and men displayed divergent antecedent profiles, with women having a higher thrombo-embolic risk but being prescribed similar treatment regimens. More women than men presented to hospital with co-morbid thyroid dysfunction, depression, renal impairment and obesity. In contrast, more men presented with coronary artery disease (CAD) and/or chronic obstructive pulmonary disease (COPD). Even when data was age-adjusted, women were more likely to live alone (odds ratio [OR] 2.33; 95% confidence interval [CI] 1.47 to 3.69), have non-tertiary education (OR 2.69; 95% CI 1.61 to 4.48) and be symptomatic (OR 1.93; 95% CI 1.06 to 3.52).Conclusion:Health care providers should be cognisant of gender-specific differences in an attempt to individualise and, hence, optimise the management of patients with chronic AF and reduce potential morbidity and mortality.
by
Judith White;
Kathleen L. Withers;
Mauro Lencioni;
Grace Carolan-Rees;
Antony R. Wilkes;
Kathryn Wood;
Hammah Patrick;
David Cunningham;
Michael Griffith
Purpose: To formally test and validate a patient-reported outcome measure (PROM) for patients with cardiac arrhythmias undergoing catheter ablation procedures in the UK [Cardiff Cardiac Ablation PROM (C-CAP)]. Methods: A multicentre, prospective, observational cohort study with consecutive patient enrolment from three UK sites was conducted. Patients were sent C-CAP questionnaires before and after an ablation procedure. Pre-ablation C-CAP1 (17 items) comprised four domains: patient expectations; condition and symptoms; restricted activity and healthcare visits; medication and general health. Post-ablation C-CAP2 (19 items) comprised five domains including change in symptoms and procedural complications. Both questionnaires also included the generic EQ-5D-5L tool (EuroQol). Reliability, validity, and responsiveness measures were calculated. Results: A total of 517 valid pre-ablation and 434 post-ablation responses were received; questionnaires showed good feasibility and item acceptability. Internal consistency was good (Cronbach’s alpha > 0.7) and test–retest reliability was acceptable for all scales. C-CAP scales showed high responsiveness (effect size > 0.8). Patients improved significantly (p < 0.001) following ablation across all disease-specific and global scales. Minimal clinically important difference was calculated. Improvement beyond the smallest detectable change of 9 points (symptom severi ty scale), 3 points (frequency and duration of symptoms scale), and 8 points (impact on life scale) indicates an important change. Amendments to the C-CAP questionnaires were identified through the validation process and made to produce the final tools. Conclusions: The final C-CAP questionnaires are valid, reliable, and responsive tools for measuring symptom change, impact, and expectations in patients undergoing ablation for cardiac arrhythmias. C-CAP questionnaires provide a tool with disease-specific and generic domains to explore how cardiac ablation procedures in the UK impact upon patients’ lives.