The impact of psychiatric and extraintestinal comorbidity on quality of life and bowel symptom burden in functional GI disorders

2014 ◽  
Vol 26 (9) ◽  
pp. 1323-1332 ◽  
Author(s):  
J. Vu ◽  
V. Kushnir ◽  
B. Cassell ◽  
C. P. Gyawali ◽  
G. S. Sayuk
Keyword(s):  
Quality Of Life ◽  
Symptom Burden ◽  
Bowel Symptom ◽  
Functional Gi Disorders ◽  
The Impact

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.

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 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 Quality of Life Among Long-Term Survivors of Non-Hodgkin Lymphoma: A Follow-Up Study

2013 ◽  
Vol 31 (2) ◽  
pp. 272-279 ◽  
Author(s):  
Sophia K. Smith ◽  
Deborah K. Mayer ◽  
Sheryl Zimmerman ◽  
Christianna S. Williams ◽  
Habtamu Benecha ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Hodgkin Lymphoma ◽  
Symptom Burden ◽  
Non Hodgkin Lymphoma ◽  
The Impact ◽  
Long Term Survivors ◽  
Over Time

Purpose Little is known about change in quality of life (QOL) among long-term cancer survivors. We examined change over time in QOL among long-term survivors of non-Hodgkin lymphoma and identified demographic, clinical, and psychosocial risk factors for poor outcomes. Methods Surveys were mailed to 682 lymphoma survivors who participated in a study 5 years earlier, when on average they were 10.4 years postdiagnosis. Standardized measures of QOL, perceptions of the impact of cancer, symptoms, medical history, and demographic variables were reported at both time points and examined using linear regression modeling to identify predictors of QOL over time. Results A total of 566 individuals participated (83% response rate) who were a mean of 15.3 years postdiagnosis; 52% were women, and 87% were white. One third of participants (32%) reported persistently high or improved QOL, yet a notable proportion (42%) reported persistently low or worsening QOL since the earlier survey. Participants who received only biologic systemic therapy reported improvement in physical health despite the passage of time. Older age, more comorbidity, and more or increasing negative and decreasing positive perceptions of cancer's impact were independent predictors of poor QOL. Lymphoma symptom burden, less social support, and having received a transplantation were related to negative perceptions of cancer's impact. Conclusion Moderate to severe symptom burden, limited social support, or having received a transplantation should alert the clinician to potential need for supportive services. Perceptions of cancer's impact are associated with QOL cross-sectionally and longitudinally; modifying these perceptions may thus provide a strategy for improving QOL.

scholarly journals Exercise-based cardiac rehabilitation improves exercise capacity and health-related quality of life in people with atrial fibrillation: a systematic review and meta-analysis of randomised and non-randomised trials

Open Heart ◽  
2018 ◽  
Vol 5 (2) ◽  
pp. e000880 ◽  
Author(s):  
Neil A Smart ◽  
Nicola King ◽  
Jeffrey D Lambert ◽  
Melissa J Pearson ◽  
John L Campbell ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Exercise Capacity ◽  
Symptom Burden ◽  
Health Related Quality ◽  
Randomised Trials ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact

ObjectiveThe aim of this study was to undertake a contemporary review of the impact of exercise-based cardiac rehabilitation (CR) targeted at patients with atrial fibrillation (AF).MethodsWe conducted searches of PubMED, EMBASE and the Cochrane Library of Controlled Trials (up until 30 November 2017) using key terms related to exercise-based CR and AF. Randomised and non-randomised controlled trials were included if they compared the effects of an exercise-based CR intervention to a no exercise or usual care control group. Meta-analyses of outcomes were conducted where appropriate.ResultsThe nine randomised trials included 959 (483 exercise-based CR vs 476 controls) patients with various types of AF. Compared with control, pooled analysis showed no difference in all-cause mortality (risk ratio (RR) 1.08, 95% CI 0.77 to 1.53, p=0.64) following exercise-based CR. However, there were improvements in health-related quality of life (mean SF-36 mental component score (MCS): 4.00, 95% CI 0.26 to 7.74; p=0.04 and mean SF-36 physical component score: 1.82, 95% CI 0.06 to 3.59; p=0.04) and exercise capacity (mean peak VO2: 1.59 ml/kg/min, 95% CI 0.11 to 3.08; p=0.04; mean 6 min walk test: 46.9 m, 95% CI 26.4 to 67.4; p<0.001) with exercise-based CR. Improvements were also seen in AF symptom burden and markers of cardiac function.ConclusionsExercise capacity, cardiac function, symptom burden and health-related quality of life were improved with exercise-based CR in the short term (up to 6 months) targeted at patients with AF. However, high-quality multicentre randomised trials are needed to clarify the impact of exercise-based CR on key patient and health system outcomes (including health-related quality of life, mortality, hospitalisation and costs) and how these effects may vary across AF subtypes.

Development of a functional assessment of side-effects to therapy (FAST) questionnaire to assess dermatology-related quality of life in patients treated with EGFR inhibitors (EGFRI): The FAST-EGFRI

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 19532-19532 ◽  
Author(s):  
L. Wagner ◽  
S. E. Lai ◽  
M. Aneja ◽  
P. Lorusso ◽  
R. Perez-Soler ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Life ◽  
Symptom Burden ◽  
Physical Symptoms ◽  
Self Report ◽  
Antitumor Effects ◽  
Related Quality ◽  
The Impact ◽  
Skin Pain

19532 Background: Despite their beneficial antitumor effects, 75–87% patients who undergo EGFRI therapy develop dermatological toxicities (derm tox), including rash, paronychia, hair alterations, and pruritus. The purpose of this study was to develop a patient (pts) self-report questionnaire based on pts and expert (exp) input and to identify the most significant skin tox health-related quality of life (HRQL) factors. Methods: To generate the questionnaire, 20 pts with derm tox to EGFRIs and 12 expert clinicians (>50 treated pts) were asked interview questions and rated 62 items to assess the most bothersome aspects of derm tox and the impact on pts’ skin-specific HRQL. The questionnaire included items from the Skindex-29, a validated skin disease-specific HRQL questionnaire. Items were rated from 0 (not at all important) to 3 (extremely important) (range = 0–3) based on the items’ significance to patients’ HRQL. Both groups were also asked to circle 20 of the most concerning HRQL factors. Results: Eighteen pts and 11 exp completed the questionnaire. Symptoms reported frequently by both pts and exp that affected patients’ HRQL included painful (mean score 2.29 (pts), 2.70, (exp), burning (2.41 (pts), 2.70 (exp)), itchy (2.00 (pts), 2.20 (exp) skin, pain in fingers/toes (2.00 (pts), 2.40 (exp)) increased facial hair (1.93(pts), 1.70 (exp)). Both pts and exp also frequently reported that the patient’s skin condition makes them feel depressed (1.88 (pts), 2.60 (exp)) and makes work or hobbies difficult (2.00 (pts), 2.20 (exp)). The top three most concerning HRQL factors for pts were skin pain, burning and stinging, and irritation, while exp reported depression, skin pain, and derm tox affecting pts’ social life. Conclusions: These results document the trajectory of symptom burden and derm tox HRQL in EGFRI treated pts. These findings underscore that in addition to the psychosocial discomfort, physical symptoms impact HRQL. Further studies to validate the FAST-EGFRI, so that effects on HRQL of interventions against derm tox and differences between agents can be assessed are underway. No significant financial relationships to disclose.

What is the health-related quality of life for women with metastatic breast cancer?

2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 70-70
Author(s):  
Deepa Lalla ◽  
Amye Tevaarwerk ◽  
Hans-Peter Goertz ◽  
Mary Lou Smith ◽  
Preeti S. Bajaj ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Symptom Burden ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

70 Background: Metastatic breast cancer (MBC) and its treatments can have a significant impact on patients’ health-related quality of life (HRQoL) and daily functioning. To better assess the impact of MBC on HRQoL, we conducted an online survey among women with MBC. Methods: We developed and administered a cross-sectional, web-based survey, and invited registered members of three advocacy groups currently living with MBC to participate. Respondents completed an informed consent and completed assessments on symptom burden using an overall QOL question (1 item), the MD Anderson Symptom Inventory Survey (MDASI), activities of daily living (ADLs, Rotterdam Scale), and impacts on work productivity. Results: We received 1285 complete responses to the survey. Over half the respondents were between 40-49yrs (37%) or 30-39 yrs (26%). The majority were white (87.7%), well-educated (70.7% had a bachelor’s degree or higher), and working at the time of the survey (55%), with private health insurance (63%). After diagnosis with MBC, most patients had received endocrine therapy (44.2% aromatase inhibitors, 27.3% fulvestrant). The most common chemotherapy agents received after diagnosis with MBC were capecitabine (30.1%) and docetaxel (26.9%). The overall mean HRQoL score was 74 (0-100, higher is better). Mean respondent-reported MDASI scores for symptom severity (SS) and symptom interference (SI) were 4.2 and 4.5 (0-10, higher is worse). Mean Rotterdam scale scores to assess ADLs were 23.7 (0-32, higher better). On average, working women with MBC missed 9.3 hours of work in the past 7 days due to their MBC. As symptom burden increased, respondents reported a lower ability to perform ADLs (p < 0.0001) and lower overall HRQoL (p < 0.0001). The ability to perform ADLs decreased with increase in the total number of agents received (p < 0.0001) and time since diagnosis (p < 0.0001). Conclusions: This survey provides valuable insights into health status, ability to perform ADLs, and lost productivity among patients with MBC. Future analyses will present results by tumor subtypes and drug treatments received.

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.

scholarly journals The Impact of Enzalutamide on the Prostate Cancer Patient Experience: A Summary Review of Health-Related Quality of Life across Pivotal Clinical Trials

Cancers ◽  
2021 ◽  
Vol 13 (23) ◽  
pp. 5872
Author(s):  
Bertrand Tombal ◽  
Arnulf Stenzl ◽  
David Cella ◽  
Yohann Loriot ◽  
Andrew J. Armstrong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Symptom Burden ◽  
Health Related Quality ◽  
Castration Resistant Prostate Cancer ◽  
Castration Resistant ◽  
Related Quality ◽  
Health Related ◽  
The Impact

This review examines the impact of treatment with enzalutamide on health-related quality of life (HRQoL) in prostate cancer patients across the disease continuum based on pivotal clinical trials. We assessed the effect of enzalutamide on pain, symptom burden and overall HRQoL from randomized controlled trials. Patient experience was evaluated in men with metastatic hormone-sensitive prostate cancer (mHSPC), non-metastatic castration-resistant prostate cancer (nmCRPC) and metastatic castration-resistant prostate cancer (mCRPC) (pre-chemotherapy and post-chemotherapy). Patients across the disease continuum reported a generally positive status at baseline, with relatively low levels of pain and impairment due to cancer-related symptoms and high HRQoL. For patients with earlier-state prostate cancer, pain and symptom-related burden were low at study entry and remained so, regardless of whether patients received enzalutamide or control treatment. Patients with more advanced disease reported mitigation in pain and symptom burden while receiving treatment with enzalutamide. Enzalutamide was observed to slow deterioration of overall HRQoL most for patients with nmCRPC or mCRPC (statistical significance for between-group difference in median time to deterioration: mHSPC (confirmed) p = 0.2998; nmCRPC (confirmed) p = 0.0044; mCRPC (unconfirmed) p < 0.0001). Across the prostate cancer continuum, enzalutamide is well-tolerated and delays the negative impact that disease progression has on quality of life.

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