scholarly journals ‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum

2020 ◽  
Author(s):  
Melanie Sloan ◽  
Michael Bosley ◽  
Moira Blane ◽  
Lynn Holloway ◽  
Colette Barrere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Negative Impact ◽  
Online Forum ◽  
Autoimmune Rheumatic Disease ◽  
Effective Care ◽  
Care And Support ◽  
Life Threatening ◽  
Physical Impact ◽  
Delays In Diagnosis

Abstract Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients’ perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members’ lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.

Impact of the onset of fixed appliance therapy on adolescents’ quality of life using a specific condition questionnaire: A cross-sectional comparison between male and female individuals

2019 ◽  
Vol 46 (3) ◽  
pp. 195-204 ◽  
Author(s):  
Larissa Corradi-Dias ◽  
Saul Martins Paiva ◽  
Henrique Pretti ◽  
Isabela Almeida Pordeus ◽  
Lucas Guimarães Abreu
Keyword(s):  
Quality Of Life ◽  
Orthodontic Treatment ◽  
Social Impact ◽  
Negative Impact ◽  
Cross Sectional ◽  
Fixed Appliance ◽  
Fixed Appliances ◽  
Physical Impact ◽  
The Impact

Objective: To evaluate the impact of the first six months of orthodontic treatment with fixed appliances on the oral health-related quality of life (OHRQoL) of adolescents, comparing boys and girls, using a specific condition questionnaire. Design: Cross-sectional. Setting: School of Dentistry of the Federal University of Minas Gerais, Belo Horizonte, Brazil Participants: Adolescents aged 10–17 years. Methods: Forty-six adolescents participated in this study. Adolescents’ OHRQoL was evaluated using the Brazilian version of the questionnaire Impact of Fixed Appliances Measure. This questionnaire comprises 43 questions distributed across nine domains: aesthetics; functional limitation; dietary impact; oral hygiene impact; maintenance impact; physical impact; social impact; time constraints; and travel/cost/inconvenience implications. The answer options follow the Likert scale, in the range of 1–5. A higher score indicates a more negative impact on the OHRQoL. Adolescents’ malocclusion was assessed using the Dental Aesthetic Index. Information on family income, adolescents’ age and tooth extraction was also collected. A directed acyclic graph was used to identify potential confounders. Statistical analysis involved the chi-square test, the Student’s t test and the analysis of covariance. The minimal clinically important difference was also calculated. Results: Of the 46 participants, 25 were girls and 21 were boys. The female adolescents presented a more negative impact from the orthodontic treatment on the quality of life when compared to the male adolescents ( P < 0.001), regardless of the influence of the confounding variables. The most negative repercussions were identified in the domains of oral hygiene ( P = 0.002), physical impact ( P < 0.001) and social impact ( P < 0.001). Conclusion: The impact of the first six months of orthodontic treatment on OHRQoL is more negative in female individuals than in male individuals. The results of this study may be useful for the oral healthcare provider during the counselling of adolescents undergoing fixed appliance therapy.

Resveratrol: A new potential therapeutic agent for melanoma?

2019 ◽  
Vol 26 ◽  
Author(s):  
Mohamad Hossein Pourhanifeh ◽  
Kazem Abbaszadeh-Goudarzi ◽  
Mohammad Goodarzi ◽  
Sara G.M. Piccirillo ◽  
Alimohammad Shafiee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Therapeutic Agent ◽  
Current Knowledge ◽  
Treatment Resistance ◽  
Anti Cancer ◽  
Apoptosis Inducer ◽  
Life Threatening ◽  
First Time

: Melanoma is the most life-threatening and aggressive class of skin malignancies. The incidence of melanoma has steadily increased. Metastatic melanoma is greatly resistant to standard anti-melanomatreatments such as chemotherapy, and 5-year survival rate of cases with melanoma who have metastatic form of disease is less than 10%. The contributing role of apoptosis, angiogenesis and autophagy in the pathophysiology of melanoma has been previously demonstrated. Thus, it is extremely urgent to search for complementary therapeutic approachesthat couldenhance the quality of life of subjects and reduce treatment resistance and adverse effects. Resveratrol, known as a polyphenol component present in grapes and some plants, has anti-cancer properties due to its function as an apoptosis inducer in tumor cells, and anti-angiogenic agent to prevent metastasis. However, more clinical trials should be conducted to prove resveratrol efficacy. : Herein, for first time, we summarize current knowledge of anti-cancerous activities of resveratrol in melanoma.

scholarly journals More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire – Expanded

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
S. Robin Cohen ◽  
Lara B. Russell ◽  
Anne Leis ◽  
Javad Shahidi ◽  
Pat Porterfield ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Second Order ◽  
Model Fit ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Healthcare Environment ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Order Factor

Abstract Background Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) – Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL – Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. Methods Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. Results Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). Conclusions MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Proton Pump Inhibitors in 2021: Pros, Cons, and Everything in Between

2021 ◽  
pp. 263451612110217
Author(s):  
Joshua A. Sloan ◽  
Philip O. Katz
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Adverse Events ◽  
Proton Pump Inhibitors ◽  
Proton Pump ◽  
Drug Class ◽  
Life Threatening

The medical and lay literature has exploded with reports of adverse events associated with proton pump inhibitors over the last 10 to 15 years. The dissemination of these reports to patients and clinicians have created substantial concerns regarding what has been an exceptionally valuable drug class, dramatically improving patient quality of life, and in many cases preventing life threatening side effects of other medication. Patients are more frequently seeking to avoid these medications, and practitioners are reducing or discontinuing them to the patient’s detriment due to a misunderstanding of the data. This review will discuss the data regarding the most commonly publicized adverse events and attempt to put them in perspective.

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.

Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review

2021 ◽  
pp. 136749352110129
Author(s):  
Alice S Schamong ◽  
Hannah Liebermann-Jordanidis ◽  
Konrad Brockmeier ◽  
Elisabeth Sticker ◽  
Elke Kalbe
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Associated Factors ◽  
Congenital Heart ◽  
Negative Impact ◽  
Well Being

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

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 Sleep Disorders in Adults with Down Syndrome

2021 ◽  
Vol 10 (14) ◽  
pp. 3012
Author(s):  
Sandra Giménez ◽  
Miren Altuna ◽  
Esther Blessing ◽  
Ricardo M. Osorio ◽  
Juan Fortea
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Down Syndrome ◽  
Sleep Disorders ◽  
Negative Impact ◽  
Current Knowledge ◽  
Sleep Disruption ◽  
Physical And Mental Health ◽  
Future Directions

Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinical sleep guidelines. Untreated sleep disorders have a negative impact on physical and mental health, behavior, and cognitive performance. Growing evidence suggests that sleep disruption may also accelerate the progression to symptomatic Alzheimer’s disease (AD) in this population. It is therefore imperative to have a better understanding of the sleep disorders associated with DS in order to treat them, and in doing so, improve cognition and quality of life, and prevent related comorbidities. This paper reviews the current knowledge of the main sleep disorders in adults with DS, including evaluation and management. It highlights the existing gaps in knowledge and discusses future directions to achieve earlier diagnosis and better treatment of sleep disorders most frequently found in this population.

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