scholarly journals Importance and Assessment of Quality of Life in Symptomatic Permanent Atrial Fibrillation: Patient Focus Groups from the RATE-AF Trial

Cardiology ◽  
2020 ◽  
Vol 145 (10) ◽  
pp. 666-675 ◽  
Author(s):  
Jacqueline Jones ◽  
Mary Stanbury ◽  
Sandra Haynes ◽  
Karina V. Bunting ◽  
Trudie Lobban ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Focus Groups ◽  
Atrial Fibrillation Patient ◽  
Beta Blockers ◽  
Nyha Class ◽  
Symptom Burden ◽  
Routine Practice ◽  
The Impact

Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

scholarly journals Importance and assessment of quality of life in symptomatic permanent atrial fibrillation: Patient focus groups from the RATE-AF trial

2020 ◽  
Author(s):  
Jacqueline Jones ◽  
Mary Stanbury ◽  
Sandra Haynes ◽  
Karina V Bunting ◽  
Trudie Lobban ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Focus Groups ◽  
Atrial Fibrillation Patient ◽  
Beta Blockers ◽  
Nyha Class ◽  
Symptom Burden ◽  
Routine Practice ◽  
The Impact

Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61-87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

The Impact of Symptom Burden on Patient Quality of Life in Chronic Myeloid Leukemia

Oncology ◽  
2014 ◽  
Vol 87 (3) ◽  
pp. 133-147 ◽  
Author(s):  
David Cella ◽  
Cindy J. Nowinski ◽  
Olga Frankfurt
Keyword(s):  
Quality Of Life ◽  
Chronic Myeloid Leukemia ◽  
Myeloid Leukemia ◽  
Symptom Burden ◽  
The Impact

Living with an MPN in Ireland: patients' and caregivers' perspectives

2021 ◽  
Vol 30 (17) ◽  
pp. S24-S30
Author(s):  
Geraldine Walpole ◽  
Mary Kelly ◽  
Joy Lewis ◽  
Avril Gleeson ◽  
Ann-Marie Cullen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Negative Impact ◽  
Peer Group ◽  
Myeloproliferative Neoplasms ◽  
Symptom Burden ◽  
Emotional Wellbeing ◽  
The Republic ◽  
The Impact

Myeloproliferative neoplasms (MPNs) are associated with a high disease burden, reduced quality of life and shortened survival. The aim of this questionnaire was to gain patients' and caregivers' perspectives on the impact of living with an MPN in the Republic of Ireland. An Irish adaptation of the ‘Global MPN Landmark survey’ was conducted. Fifty-one patients and 44 caregivers completed the questionnaire. Patients reported a wide variety of symptoms at the time of questionnaire completion; fatigue, bone pain and pruritus being most frequently reported. Approximately one-third of respondents from each of the groups (patients and caregivers) reported a negative impact of MPNs on their emotional wellbeing and daily lives. The study findings revealed that, despite treatment, symptom burden remains high, and several unmet needs exist, including educational, emotional and peer group support. Interventions that focus on reducing symptom burden and addressing these unmet needs, may improve the quality of life for patients with MPNs and their caregivers.

Abstract 147: Impact of Risk Factor Modification in Improving Quality of Life and Arrhythmia Symptoms in Patients With Atrial Fibrillation

2018 ◽  
Vol 11 (suppl_1) ◽  
Author(s):  
Amaryah Yaeger ◽  
Nancy R Cash ◽  
Tara Parham ◽  
Rajeev Pathak ◽  
David S Frankel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Risk Factor ◽  
Improve Quality ◽  
Risk Factor Modification ◽  
Obstructive Sleep ◽  
Sf 36 ◽  
The Impact ◽  
Factor Modification

Objective: The desired goal of atrial fibrillation (AF) management is maintenance of sinus rhythm in order to improve quality of life (QoL) and arrhythmia symptoms (AS). Although obesity and obstructive sleep apnea (OSA) are known risk factors for development of AF, these remain inadequately treated. We report the impact of prospectively modifying these risk factors on QoL and AS in AF patients (pts). Methods: AF pts with obesity (body mass index (BMI) ≥30kg/m 2 ) and/or the need for OSA management (high-risk as per Berlin Questionnaire or untreated OSA) were voluntarily enrolled in a nurse-led risk factor modification (RFM) program at their arrhythmia clinic visit. RFM entailed patient education, lifestyle modification counseling, coordination of care with appropriate specialists, and longitudinal care management. Progress with weight loss (WL) and OSA treatment was monitored via monthly follow-up calls and/or downloads from continuous positive airway pressure (CPAP) units for up to 12 months. QoL and AS were determined with the SF-36 and AF Severity Scale (AFSS) respectively, and were assessed at baseline, 6 months, and 12 months. Student t-test and chi-square tests were used to compare continuous and dichotomous variables. Results: From 11/1/16 to 10/31/17, 252 pts (age 63±11 years; male=179; paroxysmal AF=126) were enrolled as follows: 189 for obesity and 93 for OSA. The mean WL was 2.7±3.8% from baseline and 78% (n=126 of 162 pts with available data) of enrolled obese patients achieved WL. Among 93 pts at risk for OSA, 70 completed sleep studies and 50 were identified with OSA. Majority of these patients (76%; n=38 of 50) started CPAP therapy and have remained full (57%; n=17 of 30 pts with available CPAP data) and partial (13%; n=4 of 30) users. Table shows that SF-36 and AFSS scores improved for most measures of QoL and AS from baseline to 6 months. Conclusion: Participation in a risk factor modification program targeting obesity and obstructive sleep apnea can improve quality of life and arrhythmia symptoms in patients with atrial fibrillation. The impact of this strategy on long-term maintenance of sinus rhythm remains to be determined.

scholarly journals P1062EXPANDED DIALYSIS (HDX): IS THERE AN IMPACT ON PATIENT REPORTED SYMPTOM?

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Jarrin Penny ◽  
Fabio R Salerno ◽  
Lisa Hur ◽  
Christopher McIntyre
Keyword(s):  
Quality Of Life ◽  
Clinical Outcomes ◽  
Symptom Burden ◽  
Well Being ◽  
Response To Therapy ◽  
High Flux ◽  
Patient Reported ◽  
Dialysis Membranes ◽  
The Impact

Abstract Background and Aims High flux dialysis membranes sufficiently remove smaller sized uremic toxins however, the accumulation and retention of larger middle molecular weight toxins, which are associated with chronic inflammation, cardiovascular disease and suboptimal outcomes are poorly cleared. The recent advent of medium-cut-off dialysis membranes, labelled “expanded dialysis” (HDx) are permeable to molecules of larger size responsible for poor clinical outcomes. However, it remains unclear if HDx can directly impact the symptoms associated with hemodialysis (HD). Symptom burden plays a significant role in quality of life (QOL) and mortality rates in the HD population. The London Evaluation of Illness (LEVIL), an application-based platform has been developed to measure patient reported outcomes (PROM). In comparison to cross-sectional PROM’s, LEVIL more accurately represents the fluctuations in daily symptoms and the impact of intervention. LEVIL evaluates general well-being, energy, sleep, appetite, pain and breathing, all of which are outcomes of interest on symptom burden in chronic kidney disease. Our aim was to determine if HDx therapy had any effect on symtoms/QOL domains using LEVIL. Method 28 patients from two dialysis centers in London Ontario were consented to participate. Patients were required to be over 18 years of age and on conventional thrice weekly maintenance HD for at least three months. 23 participants completed study and analyzed (five lost for various reasons). Baseline (BL) symptom characteristics were obtained while using high flux membrane for two weeks. Symptoms continued to be measured throughout the 12 weeks of HDx therapy two-three times weekly using LEVIL. Laboratory biomarkers including beta-2 microglobulin and free-light chains were collected at baseline and after 12 weeks of HDx therapy. Results Patients were stratified into tertiles (high/middle/low) using mean values of BL symptoms scores in each domain (wellbeing, energy, sleep, appetite, pain, breathing). Those in the high BL group were labeled as “control”. Low and middle BL measures were further stratified into responders vs. non-responders (responders were considered to have a 50% increase in any symptom domain by ≥50%). Of those domains which responded to HDx, 76% also had low BL scores with 27% having middle BL scores. General wellbeing, energy and sleep were domains with the greatest response reaching statistical significance after eight weeks of therapy. HDx had limited effect on appetite, pain and breathing. Although stratification was per domain, overall, 74% of the population studied did respond in at least one domain, with some responding in as many as five. Conclusion HDx using Theranova (Baxter) shows the most benefit in domains with low BL measures. Additionally, not everyone who had low BL scores responded after 12 weeks of therapy, leaving us to question whether HDx may have a latent effect in some individuals/populations. Those who had no response to therapy in certain domains also had greater baseline quality of life respectively. This information may assist in decision making/rationale for the utilization and implementation of such therapy. Although more work is required to further stratify symptoms in relation to demographic/biochemical finding and clinical outcomes. It is evident that HDx improves patient reported symptoms and QOL.

scholarly journals P101: Quality of life in patients discharged from the emergency department with atrial fibrillation or flutter (AF/AFL): a prospective cohort study

CJEM ◽  
2017 ◽  
Vol 19 (S1) ◽  
pp. S112
Author(s):  
S. Patrick ◽  
P. Duke ◽  
K. Lobay ◽  
M. Haager ◽  
B. Deane ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Emergency Department ◽  
Short Form ◽  
Bodily Pain ◽  
Emergency Physicians ◽  
Health Related Qol ◽  
Health Related ◽  
The Impact

Introduction: Following an emergency department (ED) presentation for acute atrial fibrillation and/or flutter (AF/AFL), patients often experience anxiety, depression and impaired health-related quality of life (QoL). Emergency physicians may prescribe appropriate thrombo-embolic (TE) prophylaxis upon discharge; however, the QoL of these patients is unclear. This study measured the QoL of patients with AF/AFL following discharge to determine the factors associated with QoL. Methods: Patients ≥18 years of age identified by the attending physician as having a diagnosis of acute AF/AFL confirmed by ECG were prospectively enrolled from three Edmonton, AB EDs. Using standardized enrollment forms, trained research assistants collected data on patient demographics factors and management both in the ED and at discharge. Patients’ health-related QoL was assessed up to 20 days after their initial ED visit by a telephone interview based on six domains of the short-form 8 health survey. Results: From a total of 196 enrolled patients, 121 (62%) were male and the mean age was 63 years (standard deviation ±14). Most patients had previous history of AF/AFL (71%), and emergency physicians had the opportunity to treat or revise TE prevention therapy in 19% of the patients. The majority (89%) were discharged with prescriptions for antiplatelet or anticoagulant agents, and 188 (96%) were contacted by telephone at a median of 7 days. Most patients rated their overall health between good and excellent (70%); however, 30% assessed their health as fair or very poor. Many also reported having physical limitations (54%), difficulties completing their daily work (42%), bodily pain (32%) and limitations in social activities (32%). Finally, some patients reported having low energy (25%). At follow up, patients receiving adequate TE prevention rated their health to be similar to those without adequate TE prevention (30% vs 23%; p=0.534). Conclusion: Overall, patients with acute, symptomatic AF/AFL seen in the ED have impairments in health-related QoL following discharge from the ED. Many factors contribute to this impairment; however, providing patients with appropriate TE prophylaxis at discharge did not explain these findings. Further research is required to explore the impact of AF/AFL on patient’s health-related QoL after discharge from the ED.

scholarly journals Timolol 0.1% in Glaucomatous Patients: Efficacy, Tolerance, and Quality of Life

2019 ◽  
Vol 2019 ◽  
pp. 1-12 ◽  
Author(s):  
Letizia Negri ◽  
Antonio Ferreras ◽  
Michele Iester
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Beta Blockers ◽  
The Other ◽  
Visual Field Defects ◽  
Market Beta ◽  
Systemic Side Effects ◽  
The Impact ◽  
Preservative Free

Glaucoma is a progressive, chronic optic neuropathy characterized by a typical visual field defects. Four main classes of topical medication are actually available on the market: beta-blockers, prostaglandins, alpha2-agonists, and topical carbonic anhydrase inhibitor to treat intraocular pressure (IOP). The aim of this review is to outline the efficacy of timolol and to evaluate the impact of this treatment on patients’ quality of life. Among beta-blockers, timolol is most used at three different concentrations: 0.1%, 0.25%, and 0.5%. While the first one is a gel, the other two products are solution. Timolol has few topical side effects, while it has some important systemic side effects on the cardiac and respiratory systems. The balance between efficacy and safety is always the main aspect to care patients. Because of the less efficacy of timolol 0.1% solution, the possibility to use carbomers as vehicle in the gel drops helped timolol 0.1 to be used in clinics, extending the time contact between the active ingredient and the surface of the cornea. Using preservative-free timolol 0.1 for treatment, IOP was at the same level of the other beta-blockers at higher concentration, but it was better tolerated. Preservative-free treatment improved the quality of life reducing dry-eye like symptoms; furthermore, the presence of an artificial tear in the medication bottle could help adherence. The once daily dosing improves compliance.

Are There Gender Differences in Outcomes after the Cox-Maze Procedure for Atrial Fibrillation?

2013 ◽  
Vol 8 (3) ◽  
pp. 190-198 ◽  
Author(s):  
Linda Henry ◽  
Sharon Hunt ◽  
Sari D. Holmes ◽  
Lisa M. Martin ◽  
Niv Ad
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
General Health ◽  
Symptom Burden ◽  
Maze Procedure ◽  
Health Related Quality ◽  
Surgical Ablation ◽  
Related Quality ◽  
Health Related

Objective Atrial fibrillation (AF) management suggests that women do not tolerate medication rhythm control strategies as well as men do; however, AF percutaneous catheter ablation has been found to be favorable. The study purpose was to compare the sex-based outcomes for patients who undergo the Cox-Maze procedure for AF. Methods Data were collected through our AF surgical ablation registry. Rhythm was verified by electrocardiogram and 24-hour holter at 6 and 12 months. General health-related quality of life (Short-Form 12) and specific AF symptom burden (Atrial Fibrillation Symptom Checklist: Frequency and Severity, version 3) were obtained at baseline and 12 months. Results Since 2005, a total of 540 patients have undergone a Cox-Maze procedure (34% were women). The women presented with higher operative risk [additive European System for Cardiac Operative Risk Evaluation (EuroSCORE), 6.71 ± 2.61 vs 5.25 ± 2.80, t = 5.85, P < 0.001], higher rates of congestive heart failure (49% vs 32%, P < 0.001), and more concomitant mitral valve procedures (32% vs 19%, P = 0.001). Perioperative outcomes were similar. Return to sinus rhythm off antiarrhythmics were not different at 6 and 12 months (78% vs 75%, P = 0.53, and 81% vs 80%, P = 1.00, respectively). Cumulative 2-year survival (93.9% for the men and 89.3% for the women) was not different for all-cause mortality (hazard ratio, 1.47; confidence interval, 0.68–3.21; P = 0.33) and cardiac-related mortality [women: 10/14 (71%) vs men 7/11 (64%), P = 1.00]. Health-related quality of life showed significant improvement; AF symptoms significantly decreased across the sexes. Conclusions Outcomes after the Cox-Maze procedure are similar across sex. Atrial fibrillation surgical ablation should be considered a treatment option for women—it is safe and effective, improves general health-related quality of life, and reduces AF symptom burden.

The Importance of the Patient-Physician Relationship in Myelodysplastic Syndromes.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1340-1340 ◽  
Author(s):  
Mary L. Thomas ◽  
Kathleen Heptinstall ◽  
Audrey Hassan
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Myelodysplastic Syndromes ◽  
Treatment Options ◽  
The United States ◽  
Significant Finding ◽  
Physician Relationship ◽  
The Impact ◽  
The Relationship

Abstract Most physicians presume their relationship with the patient is a crucial component when managing chronic illness, such as myelodysplastic syndromes (MDS). This assumption was validated in a convenience sample of 70 adults with MDS who participated in five focus groups throughout the United States. The primary purpose of this qualitative study was to explore the impact of MDS on patients’ quality of life (QOL). The groups were facilitated by an advanced practice nurse with clinical expertise in MDS and qualitative research experience. Given the exploratory nature of the study design, discussions proceeded in differing directions; however, core questions were asked at each session (based on Ferrell’s work exploring QOL in patients with cancer (Oncology Nursing Forum, 1996). Sessions were audio-taped and professionally transcribed. Transcripts were coded and emerging themes identified using thematic analysis methods aided by the qualitative analysis program N5 (QSR International). The sample was 93% Caucasian, 51% male, with a mean age of 69 ± 9 years; 26% lived alone. Known MDS subtype was: 19 RA, 19 RARS, 11 RAEB, 3 5q-, 2 other (16 unknown); median time since diagnosis was 26 months (3 - 276). 73% received growth factors, 61% transfusions, 19% azacitidine, 16% thalidomide, 14% iron chelation; 29% all other; many patients received multiple (often concurrent) therapies. A significant finding from the focus groups revealed a detailed depiction of the patient-physician relationship from the patient’s perspective (discussed by 46 of the 62 patients who actively participated). Patients acknowledged many barriers that interfered with the relationship. These barriers were system related (e.g., extreme time constraints for physicians, priority to others who were more ill) or treatment related (e.g., lack of cure, limited treatment options). In addition, patients identified physician attributes that adversely impacted the relationship, including seeming indifference to the patient’s concerns, displays of arrogance, limited knowledge about MDS and its treatment, and especially, lack of confidence in managing the illness. In contrast, positive physician attributes that enhanced the relationship included: providing comprehensible explanations, willingness to seek assistance or opinions from MDS experts when the physician was unsure of the best treatment approach, and displays of compassion and concern. Patients identified displaying respect and interest in them as individuals as essential elements in establishing and maintaining a therapeutic relationship. Patients reacted to a difficult patient-physician relationship in various ways. Those patients who ascribed to the view that a physician had a revered position and was not to be challenged tended to suffer in silence, and remained anxious or depressed. Other patients described a more proactive position, where they continually sought new information about the disease and managing side effects and even felt responsible to explore other treatment options. However, this approach required much work and energy, and did not consistently alleviate the patient’s anxiety. MDS is a complex disease, where advances in understanding its pathology and identifying new treatments are beginning to have an impact in routine clinical practice. Data from this study suggest that physicians need to be aware of the barriers present in the patient-physician relationship and strive to ameliorate them. In so doing, patient’s anxiety, depression, and hyper-vigilance may be diminished, and quality of life enhanced.

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