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 MELASMA;

2017 ◽  
Vol 24 (12) ◽  
pp. 1899-1903
Author(s):  
Wajid Ali Akhunzada ◽  
Naima Luqman ◽  
Asima Luqman ◽  
Muhammad Khalid ◽  
Sultana Jam
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Life Quality ◽  
Severity Index ◽  
The Body ◽  
Emotional Wellbeing ◽  
Dermatology Department ◽  
Social And Emotional ◽  
The Impact

Introduction: Melasma is an acquired, chronic, recurrent symmetricalhypermelanosis which is characterized by brown patches of variable darkness on sun exposedareas of the body primarily on the face.1,2 Melasma is more common in Asians and in peoplewho live in locations that receive high intensity UV radiation.3,4 Melasma is a skin disease thatsignificantly affects social and emotional wellbeing of the patients as well as their Quality of Life(QoL). Objectives: To find out the impact of melasmaon quality of life of the patients. StudyDesign: It is a descriptive study and the sample (patients), were selected through convenientsampling. Place and Duration of study: The study was conducted in the department ofpsychiatry & Dermatology department of Bahawal Vicortoria Hospital, Bahawalpur from July toDecember 2016. Material and Methods: Hundred patients having melasma including 11 malesand 89 females from both departments were included in the study. Two questionnaires wereapplied for measuring target variables, these were (i) Dermatology Life Quality Index to assessthe effect of melasma on quality of life (DLQI) and (ii) Melasma Area Severity Index (MASI) todetermine the severity of melasma. Results: The study included 100 patients of which 89 werefemales while 11 were males. Mean age of the patients was 27+6. Regarding the educationalstatus of patients, the majority (36%) were graduates and 16% had a Masters degree. Of thesepatients, 53% were unmarried while 47% were married. Mean DLQI was slightly higher forfemale patients (13.48) as compared to male patients (12.82). Mean MASI was also higherin females (15.26) as compared to males which was (14.39). Conclusions: Melasma causessignificant negative impact on quality of life especially in women.

scholarly journals COVID-19 Pandemic and Quality of Life among Romanian Athletes

2021 ◽  
Vol 18 (8) ◽  
pp. 4065
Author(s):  
Germina-Alina Cosma ◽  
Alina Chiracu ◽  
Amalia Raluca Stepan ◽  
Marian Alexandru Cosma ◽  
Marian Costin Nanu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Trait Anxiety ◽  
Negative Impact ◽  
Well Being ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Personality Item ◽  
The Impact ◽  
The Relationship

The aim of this study was to analyze athletes’ quality of life during the COVID-19 pandemic. The study involved 249 athletes between 15 and 35 of age, M = 21.22, SD = 5.12. The sample was composed of eight Olympic Games medalists, three European medalists, 67 international medalists, and 63 national medalists. The instruments used were: (1) COVID-19 Anxiety Scale, (2) Athlete Quality of Life Scale, (3) Impact of Pandemic on Athletes Questionnaire, and (4) International Personality Item Pool (IPIP Anxiety, Depression, and Vulnerability Scales). The results indicate significant differences in COVID-19 anxiety depending on the sport practiced, F (9239) = 3.81, p < 0.01, showing that there were significant differences between sports. The negative impact of the COVID-19 pandemic mediates the relationship between trait anxiety and the athletes’ quality of life. The percentage of mediation was 33.9%, and the indirect effect was −0.11, CI 95% (−0.18, −0.03), Z = −2.82, p < 0.01. Trait anxiety has an increasing effect on the intensity of the negative impact of the COVID-19 pandemic, 0.23, CI 95% (.10, 0.35), Z = 3.56, p < 0.01, and the negative impact of the COVID-19 pandemic has a decreasing effect on quality of life, −0.47, CI 95% (−0.67, −0.27), Z = −4.62, p < 0.01. Gender and age did not moderate the relationship between the negative impact of COVID-19 and athletes’ quality of life. The results of the study highlighted the impact that social isolation and quarantine have on athletes’ affective well-being.

scholarly journals Tobacco use in the Myeloproliferative neoplasms: symptom burden, patient opinions, and care

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah F. Christensen ◽  
Robyn M. Scherber ◽  
Gina L. Mazza ◽  
Amylou C. Dueck ◽  
Nana Brochmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tobacco Use ◽  
Myeloproliferative Neoplasms ◽  
Myeloproliferative Neoplasm ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Cross Sectional ◽  
Former Smokers ◽  
Never Smokers

Abstract Background Patients with Philadelphia-negative Myeloproliferative Neoplasms (MPN) suffer from numerous symptoms and decreased quality of life. Smoking is associated with an increased symptom burden in several malignancies. The aim of this study was to analyze the association between smoking and MPN-related symptom burden and explore MPN patients’ opinions on smoking. Methods A total of 435 patients with MPN participated in a cross-sectional internet-based survey developed by the Mayo Clinic and the Myeloproliferative Neoplasm Quality of Life Group. Patients reported their demographics, disease characteristics, tobacco use, and opinions on tobacco use. In addition, MPN-related symptoms were reported via the validated 10-item version of the Myeloproliferative Neoplasms Symptom Assessment Form. Results Current/former smokers reported worse fatigue (mean severity 5.6 vs. 5.0, p = 0.02) and inactivity (mean severity 4.0 vs. 3.4, p = 0.03) than never smokers. Moreover, current/former smokers more frequently experienced early satiety (68.5% vs. 58.3%, p = 0.03), inactivity (79.9% vs. 71.1%, p = 0.04), and concentration difficulties (82.1% vs. 73.1%, p = 0.04). Although not significant, a higher total symptom burden was observed for current/former smokers (mean 30.4 vs. 27.0, p = 0.07). Accordingly, overall quality of life was significantly better among never smokers than current/former smokers (mean 3.5 vs. 3.9, p = 0.03). Only 43.2% of the current/former smokers reported having discussed tobacco use with their physician, and 17.5% did not believe smoking increased the risk of thrombosis. Conclusion The current study suggests that smoking may be associated with increased prevalence and severity of MPN symptoms and underscores the need to enhance patient education and address tobacco use in the care of MPN patients.

scholarly journals A139 IMPROVED QUALITY OF LIFE AFTER ENDOSCOPIC THERAPY FOR BARRETT’S ESOPHAGUS AND EARLY ESOPHAGEAL CANCER IN SOUTHERN ALBERTA

2021 ◽  
Vol 4 (Supplement_1) ◽  
pp. 125-126
Author(s):  
T Jeyalingam ◽  
M Woo ◽  
S E Congly ◽  
J David ◽  
P J Belletrutti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Linear Regression ◽  
Multiple Linear Regression ◽  
Barrett’S Esophagus ◽  
Barrett's Esophagus ◽  
Endoscopic Therapy ◽  
Negative Impact ◽  
Older Age ◽  
The Impact

Abstract Background In patients with Barrett’s esophagus (BE), endoscopic therapy reduces the risk of progression to invasive esophageal adenocarcinoma (EAC). Data on the impact of endoscopic therapy on patient quality of life (QoL) is limited. Aims We aimed to assess: (1) change in QoL during the course of endoscopic therapy for BE, (2) factors which predict this change, (3) whether achieving complete remission of dysplasia (CRD) or intestinal metaplasia (CRIM) affect the degree of change. Methods We conducted a retrospective observational study using a prospectively maintained database of BE patients treated in Calgary, Alberta from 2013–2020 containing data on demographics, BE disease characteristics and therapeutics, QoL, and follow-up. QoL was determined prior to initiation of therapy and after each treatment session using a validated questionnaire. Descriptive statistics were calculated and change in QoL was compared using a Wilcoxon signed ranks test. Backwards multiple linear regression analysis was performed to determine predictors of change in QoL. Results Of 130 BE patients, 112 (86.1%) were male and 104 (80%) had dysplastic histology or intramucosal carcinoma on index endoscopy. Mean (SD) age was 65.6 (12.0) years. At time of analysis, 76 patients (58.5%) had completed endoscopic therapy, of whom 69 (90.8%) achieved CRIM; 54 patients (41.5%) were still undergoing treatment. There was significant improvement in all QoL measures during the treatment course except for “depression” (Table 1). Patients with CRIM or CRD had reductions in “sleep difficulty” and “negative impact on life” to a significantly greater degree vs patients not achieving CRIM (Δ sleep -0.45 vs 0.0, P=0.002; Δ negative impact -0.4 vs -0.05, P=0.014) or CRD (Δ sleep -0.40 vs +0.60, P=0.002; Δ negative impact -0.40 vs +0.20, P=0.04). Multiple linear regression revealed older age (B=-0.03, P=0.008) and fewer number of EMR sessions (B=0.254, P=0.008) were correlated with greater improvement in QoL. Conclusions Endoscopic therapy improves QoL in BE patients, especially in those achieving CRIM/CRD. Older age and fewer EMRs are correlated with greater improvement in QoL. These results further reinforce the role of endoscopic therapy as the first line treatment of BE and early EAC. Funding Agencies None

scholarly journals Effect of Instructing Care Program Through Group Discussion on the Quality of Life of the Parents of the Children Afflicted With Leukemia

2015 ◽  
Vol 8 (5) ◽  
pp. 197 ◽  
Author(s):  
Fariba Asadi Noughabi ◽  
Daryoush Iranpoor ◽  
Hadi Yousefi ◽  
Hakimeh Abrakht ◽  
Fatemeh Ghani Dehkordi
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Emotional Health ◽  
Group Discussion ◽  
Bodily Pain ◽  
Care Program ◽  
Role Of Parents ◽  
The Impact ◽  
Taking Care

<p><strong>PURPOSE</strong><strong>:</strong> Children long-term involvement with cancer may have a negative impact on the quality of life their parents. Design and implementation of training programs for parents whose children have been diagnosed with leukemia, as the primary caregivers of children, will have a special significance and can contribute to better taking care of such children. The main purpose of the present study was to examine the impact of conducting group discussion, as care program training, on the quality of life parents whose children were suffering from leukemia.</p><p><strong>METHODS: </strong>This quasi-experimental before-after intervention study encompassed two groups of parents (in total 41) of leukemia children. To collect data, a demographic questionnaire and the shortened version of SF-36 questionnaire were used to determine the quality of life of parents. Both groups completed the quality of life questionnaires before and two months after the intervention.</p><p><strong>RESULTS: </strong>Comparison of the parents’ quality of life mean scores, obtained before and two months after training, showed that promotion in 6 domains of bodily pain, general health, emotional health, role limitation due to emotional problems, social functioning, and vitality were occurred. (P &lt;0.05)</p><p><strong>CONCLUSIONS: </strong>Considering the important role of parents in taking care of children suffering from leukemia, introduction of care program training can be a positive step to help these parents and empower them to manage their children’s problems more systematically and will ultimately lead to improved quality of life of parents.</p>

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

Quality of Life in People Living With HIV: An Exploratory Cross-Sectional Survey in Belgium

2021 ◽  
Vol 33 (3) ◽  
pp. 249-264
Author(s):  
Gert Scheerder ◽  
Sandra Van den Eynde ◽  
Patrick Reyntiens ◽  
Ria Koeck ◽  
Jessika Deblonde ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Sexual Life ◽  
People Living With Hiv ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Related Stigma ◽  
Living With Hiv ◽  
The Impact

This cross-sectional survey explored the quality of life in 505 people living with HIV in Belgium. Several domains of quality of life were impaired: 26% had been diagnosed with depression and 43% had weak social support. HIV-related stigma is still widespread, with 49% believing most people with HIV are rejected and 65% having experienced discrimination due to HIV. The impact of HIV was limited on professional life, but 40% experienced a negative impact on life satisfaction and 41% a negative impact on sexual life. For several domains, people with a recent diagnosis of HIV and long-term survivors had significantly worse scores. This survey also uncovered strengths of people living with HIV, such as positive coping and HIV self-image. Expanding the scope of quality of life in people living with HIV may provide a more complete picture of relevant life domains that may be impacted by living with HIV, but this needs further validation.

scholarly journals Social isolation and quarantine in the COVID-19 pandemic: impacts on mental health and quality of population life

2021 ◽  
Vol 10 (2) ◽  
pp. e30510212535
Author(s):  
Gabriel Kiaro Leite Nunes ◽  
Karinne Alice Santos de Araújo ◽  
Thais Ranielle Souza de Oliveira ◽  
Marcelina da Conceição Botelho Teixeira ◽  
Ieler Ferreira Ribeiro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Social Isolation ◽  
Negative Impact ◽  
Definitive Treatment ◽  
World Population ◽  
The World ◽  
The Face ◽  
The Impact

The COVID-19 pandemic brought about major changes in the lifestyle of the world population. Due to the lack of vaccines or a definitive treatment for disease, governments around the world have adopted social isolation and quarantine as methods to control the spread of the virus. Objective: Thus, the objective of this study was to discuss how social isolation and quarantine periods affected people's mental health and quality of life during the COVID-19 pandemic. Methods: An integrative literature review was carried out during the COVID-19 pandemic between March and September 2020, establishing the following guiding question: How did social isolation and quarantine affect the mental health and quality of life of the population in the COVID-19 pandemic? Results: The final sample consisted of nineteen (19) articles, two (2) addressed depression during the pandemic period, three (3) presented the pandemic and the relationship with sociodemographic aspects, five (5) analyzed mental health in the pandemic, four (4) reported the impact of COVID-19 on the population's style and quality of life and the last five (5) demonstrated the quality of human relationships and emotional aspects in the face of the pandemic. Conclusion: It was demonstrated that isolation and the quarantine period had a negative impact on the population's quality of life and long-term mental health.

scholarly journals THE IMPACT OF THE PERSONALITY TYPE OF ADOLESCENTS ON QUALITY INDICES OF THEIR LIFE

2019 ◽  
Vol 21 (2) ◽  
pp. 93-96
Author(s):  
Elena G. Vikhareva ◽  
A. A. Baranov ◽  
I. V. Vinyarskaya ◽  
T. V. Tretyakova ◽  
V. V. Chernikov
Keyword(s):  
Quality Of Life ◽  
School Performance ◽  
Personality Type ◽  
Quality Indices ◽  
Adaptive Technique ◽  
Integral Characteristics ◽  
Regional Centers ◽  
The Republic ◽  
The Impact

Currently, the assessment of the quality of life is one of the most important criteria, describing integral characteristics of the children’s health. The article presents an analysis of the results of the research of the influence of personality type indices on the quality of life. PedsQL was calculated for each child’s physical, emotional, social spheres, as well as school performance and overall score accordingly to the questionnaire data. The study involved 2292 children aged from 13 to 18 years: 1164 girls and 1128 boys. The survey was executed by interviewing teenagers in the Izhevsk schools and 24 regional centers of the Republic of Udmurtia. To determine the type of the person of teenagers there was used an adaptive technique by K. Ung. As a result, 3 groups were formed. The first group was formed by 960 students with a predominance of personality traits of an introvert, the second group included 1258 extrovert cases. The same group of children (n = 74) was allocated among teenagers having symptoms as well extroverts as introverts (group “intro-extrovert”). As a result of the comparison, the quality of life and the type of the person of teenagers were found to be related to each other. According to the values of the “total score”, “social functioning” and “emotional functioning” the most harmonious quality of life indices were identified in children from the mixed group appeared to be a part of the personality of the best qualities of extroverts and introverts.

scholarly journals A Standardized Equation Model of Quality of Life in Myeloproliferative Neoplasms

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2181-2181
Author(s):  
Robyn M. Scherber ◽  
Martin M. Goros ◽  
Jonathan Gelfond ◽  
Amylou C. Dueck ◽  
Sarah F Christensen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Research Funding ◽  
Structural Equation ◽  
Online Survey ◽  
Myeloproliferative Neoplasms ◽  
Linear Regression Analysis ◽  
Symptom Burden ◽  
Equation Model ◽  
Nccn Guidelines

Background: Quality of life (QOL) is predictive of survival in many malignancy types, including myeloproliferative neoplasms (MPNs; Scherber 2017, Sloan 2012, Montazeri 2009, Nilsson 2017). We have previously characterized that an association exists between symptom burden and QOL among MPN patients, but due to the disease specificity of symptoms, symptoms rather than QOL remains a key therapeutic endpoint (Scherber 2017, NCCN Guidelines). Despite these advancements, our understanding of the extent that different patient and disease characteristics, including symptoms, contribute to overall QOL has remained elusive. In this analysis, we utilized information from a large survey of MPN patients to develop a model of QOL that establishes the degree that individual variables contribute to QOL, including psychosocial variables, comorbidities, and MPN disease symptoms. Methods: The FATIGUE survey of MPN patients (Scherber 2016) investigated self-reported symptoms using the MPN10 (Scherber 2012), depression utilizing the Profile of Mood States-Brief (POMS-B, McNair 1971), Patient Health Questionnaire (PHQ-2, Kroenke 2003) and Mental Health Inventory (MHI-5, Berwick 1991), and QOL utilizing a single numeric analog scale (range 0-10) regarding overall quality of life. Linear regression analysis was utilized to establish the relationship between individual symptoms and QOL, and a structural equation model (SEM) was used to identify complex relationships among patient demographics, behavioral factors, comorbidities, and QOL. Results: A total of 914 patients from the online survey lived in the USA and provided data for this analysis. Average age was 62 with 67% of patients being female and the mean BMI was 25. Education varied across middle school or high school education (22%), undergraduate or college degree (44%), masters (26%), to doctorate (8%). 43% of respondents were employed. Fatigue (β coefficient 0.23, p<0.001), inactivity (β 0.21, p<0.001), concentration difficulties (β 0.13, p<0.001), sad mood (β 0.18, p<0.001), and night sweats (β 0.05, p=0.03) showed statistically significant impact on QOL. SEM Model: We developed the SEM model in Figure 1. Out of all variables analyzed, MPN total symptom burden demonstrated the strongest association with (β 0.89) with QOL, followed by depression (β 0.76). Comorbidities, including COPD and renal issues, age, and body mass index abnormalities had some impact on symptoms (all β <0.40), but did not demonstrate a significant impact on QOL. Comparative Fit Index (CFI) was 0.905 and root mean square error of approximation (RMSEA) was 0.051 (0.048, 0.054) indicating good fit. Conclusions: Previous clinical trials of JAK inhibition have targeted improvement in symptoms as a key endpoint, and ultimately demonstrated improvements in overall survival. The mechanism of this survival benefit has not been fully explored. This analysis suggests that symptoms and mood are strongly associated and potentially a major contributor to QOL among MPN patients, whereas other major comorbidities and age are not as strongly correlated. Efforts are underway to analyze more comprehensive datasets to better understand the role of other variables, including marriage status and financial concerns, on QOL. Disclosures Scherber: Blueprint: Other: Ad board; Incyte: Consultancy; Gilead: Consultancy. Hasselbalch:Novartis: Research Funding; AOP Orphan Pharmaceuticals: Other: Data monitoring board. Mesa:Baxalta: Consultancy; LaJolla: Consultancy; Genentech: Consultancy; Celgene Corporation: Research Funding; Samus: Research Funding; AbbVie: Research Funding; NS Pharma: Research Funding; Novartis: Consultancy, Honoraria, Other: travel, accommodations, expenses; CTI: Research Funding; Galena Biopharma: Consultancy; Pfizer: Research Funding; Incyte: Other: travel, accommodations, expenses, Research Funding; Genotech: Research Funding; AOP Orphan Pharmaceuticals: Honoraria, Other: travel, accommodations, expenses; PharmaEssentia: Research Funding; Gilead Sciences: Research Funding; Promedior: Research Funding; Shire: Honoraria; Sierra Oncology: Consultancy.

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