scholarly journals Beyond Survival in AL amyloidosis: Identifying and Satisfying Patients’ Needs

Hemato ◽  
2022 ◽  
Vol 3 (1) ◽  
pp. 38-46
Author(s):  
Hamza Hassan ◽  
Vaishali Sanchorawala
Keyword(s):  
Cell Clone ◽  
Symptom Burden ◽  
Well Being ◽  
Future Research ◽  
Al Amyloidosis ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related ◽  
Delays In Diagnosis ◽  
The Impact

The survivorship needs of patients with light-chain (AL) amyloidosis are complex, as is the diagnosis and treatment itself. Early diagnosis is critical in improving patient outcomes; however, given the nonspecific nature of the symptoms, most patients with AL amyloidosis require evaluation by multiple specialists, resulting in significant delays in diagnosis of up to 3 years. An early and accurate diagnosis can help reduce the psychological toll of the patient’s journey to diagnosis. Given the high symptom burden and complex process of diagnosis, it is not surprising that patients with AL amyloidosis report worse health-related quality of life than the general population. Organ dysfunction associated with AL amyloidosis also may make the treatment directed towards plasma cell clone difficult to tolerate, leading to morbidity and mortality. Furthermore, supportive care requires an integrated, multidimensional and patient-centered approach to improve survival and feelings of well-being, as organ responses lag behind hematologic responses. The impact of AL amyloidosis is often devastating for the patient and may last beyond the effects of treatment. Future research is needed to study and assess the needs of survivors of AL amyloidosis utilizing valid, reliable and standardized measures.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

Using Social Media Listening to measure the impact of diseases and treatments on patients’ Health-Related Quality of Life (Preprint)

2021 ◽  
Author(s):  
Simon Renner ◽  
Tom Marty ◽  
Mickaïl Khadhar ◽  
Pierre Foulquié ◽  
Paméla Voillot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Health Related Quality ◽  
Web Crawler ◽  
Real World Data ◽  
Patient Centered ◽  
Related Quality ◽  
Health Related ◽  
The Impact

BACKGROUND Monitoring social media has been shown to be a useful mean to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life is a useful indicator of overall patients’ health that can be captured online. OBJECTIVE This study aims to describe a Social Media Listening system which is able to detect any impact of diseases or treatments on health-related quality of life as reported in social media and forum messages written by patients. METHODS Using a web crawler, 19 health-related forums in France were harvested and messages relating a patient’s experience with a disease or a treatment were specifically collected. The algorithm was based on the two clinically validated questionnaires SF-36 and EQ-5D. Models were trained using cross-validation (a machine learning technique which obtains the best combination between different data samples) and hyperparameter optimization. Over-sampling was used to increase the infrequent dimension: after annotation, SMOTE was used to balance the proportion of the dimension among messages. RESULTS The training set was composed of 1400 messages, randomly taken from a 20 000 batch of health-related messages coming from forums. The algorithm was able to detect a general impact on health-related quality of life (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70) and a financial impact (0.79 and 0.74). CONCLUSIONS Real-time assessment of patients’ health-related quality of life through the use of Social Media Listening is useful to a patient-centered medical care. Social media as a source of Real World Data are a complementary point of vue to understand patients’ concerns, unmet needs and how diseases and treatments can be a burden in their daily lives. Trial Registration: Not applicable (not a trial)

scholarly journals Health-related Quality of Life and Its Predictors in Korean Patients with Myocardial Infarction in the Acute Phase

2019 ◽  
pp. 105477381989469 ◽  
Author(s):  
Kyoungrim Kang ◽  
Leila Gholizadeh ◽  
Hae-Ra Han
Keyword(s):  
Quality Of Life ◽  
Myocardial Infarction ◽  
Acute Phase ◽  
Well Being ◽  
Health Related Quality ◽  
Korean Patients ◽  
Related Quality ◽  
Health Related ◽  
The Impact

This study aims to investigate health-related quality of life (HRQoL) of Korean patients in the acute phase of myocardial infarction (MI) and correlates of this important patient outcome. A total of 150 patients with recent MI were recruited. The Korean version of the MacNew Quality of Life after Myocardial Infarction Questionnaire was used to assess their HRQoL. Demographic, behavioural and disease-related factors were also assessed and the Depression, Anxiety and Stress Scale (DASS 21) was used for psychological well-being. Participants who had a higher education level and better financial status had better HRQoL. Diabetes, history of stroke, other heart disease and a higher score of the DASS 21 were adversely associated with HRQoL. The findings of this study help identify risk factors that are related to lower HRQoL after MI. Early psychological and financial support may help reduce the impact of MI on patients’ overall health and quality of life.

scholarly journals The impact of pregnancy on women’s oral health-related quality of life: a qualitative investigation

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Omid Fakheran ◽  
Mahmoud Keyvanara ◽  
Zahra Saied-Moallemi ◽  
Abbasali Khademi
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Pregnant Women ◽  
Social Life ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background Complex psychological and physiological changes occur in women’s body during pregnancy. These changes affect both oral health status and oral health-related quality of life (OHRQoL). In almost all of the previous cross-sectional design studies on pregnant women, generic OHRQoL instruments have been used to measure OHRQoL. While such instruments may be reliable, they may not be appropriate to evaluate the OHRQoL in special populations like pregnant women. The purpose of this study was to investigate the self-perceived factors affecting the OHRQoL among pregnant women. Methods In this qualitative descriptive study, twenty- seven pregnant women were recruited from four healthcare centers located in Isfahan city, Iran. The interpretative phenomenological analysis was used to collect and analyze the data. Four criteria of credibility, dependability, transferability, and confirmability were implemented through established procedures to confirm the study rigor. Results Three major themes and six sub-themes capturing the impacts of pregnancy on women’s OHRQoL were identified. They covered all areas of life, including daily life, psychological well-being, social life, physical impact, and also barriers to utilization of dental care services. Some new domains such as “dentists’ refusal to treat pregnant women”, “negative feelings about pregnancy” and “concerns about fetal health” were found as important factors which could influence the OHRQoL during pregnancy. Conclusion The findings help to better understand the oral health issues impacting women during pregnancy and to achieve person-centered care and improved oral health outcomes in pregnant women. The conceptual framework created based on the results of this study may help health care workers and policy makers for improving the health of pregnant women.

Improvements in Health-Related Quality of Life of Patients with DLBCL after Treatment with Yttrium-90 Ibritumomab Tiuxetan (90y-Zevalin).

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 4794-4794
Author(s):  
S. S. Thompson ◽  
S. Macran ◽  
J. Kalmus ◽  
F. Morschhauser
Keyword(s):  
Quality Of Life ◽  
B Cell Lymphoma ◽  
Well Being ◽  
Maximal Response ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Anxiety Depression ◽  
The Impact

Abstract PURPOSE: This health-related quality of life (HRQL) study aimed to evaluate the impact of 90y-Zevalin therapy on the HRQL of older patients with relapsed diffuse large B-cell lymphoma (DLBCL) not eligible for stem cell transplantation. Ppsychometric performance of the FACT-G and EQ-5D in the same patient sample was also evaluated. The study was conducted alongside a single arm, phase II clinical trial of 90Y-Zevalin radioimmunotherapy. METHODS: The FACT-G scale contains 27 questions, grouped according to 4 “dimensions” of HRQL relevant to patients with cancer: Physical, Functional, Social and Emotional well-being. The scale provides a total score for overall HRQL and subscale scores for each dimension. The EQ-5D is a generic measure of HRQL used in a range of diseases and comprises a descriptive classification based on 5 broad dimensions and a visual analogue scale. Data from the 2 measures were analyzed with descriptive statistics. Validity was assessed in terms of correlations between individual dimensions. Changes in the dimensions and total scores of the FACT-G and EQ-5D from baseline to wk 12 post-90Y-Zevalin therapy were assessed using paired t-tests. Wk 12 corresponded to the time of expected maximal response to 90Y-Zevalin therapy. RESULTS: Sixty-six of 104 patients enrolled in the clinical study completed the FACT-G and EQ-5D questionnaires at baseline and 35 completed the questionnaires at wk 12. Those who completed the questionnaires at both baseline and wk 12 were more likely to have responded to 90Y-Zevalin (80% were responders) although they were comparable in terms of age (median = 72 yrs) and gender (54% male) to those who only completed the questionnaires at baseline. At baseline, the dimensions of HRQL with the worst scores and therefore most affected by DLBCL, included areas related to energy, pain, anxiety and depression, which would be expected given the symptoms commonly associated with DLBCL such as fatigue. The percentage of patients reporting “some or extreme problems” on each of the EQ-5D dimensions at baseline are summarized in the table. Moderate correlations were observed between the Physical Well-being of the FACT-G and the Usual Activities (=0.60) and Pain/Discomfort (=0.70) dimensions of the EQ-5D. The Emotional Well-being dimension of the FACT-G was moderately correlated with the Anxiety/Depression on the EQ-5D (=0.66). These data suggest the FACT-G and the EQ-5D were measuring some common concepts to patients. All summary dimensions of the FACT-G and EQ-5D showed either a positive trend or little change after treatment with 90Y-Zevalin, with the Physical Well-being dimension of the FACT-G reaching statistical significance (P=0.03) and measuring a 10% improvement over baseline. The change in total score of the FACT-G almost reached significance (P=0.06), as did the emotional dimension of the FACT-G (P=0.10) and the mobility dimension of the EQ-5D (P=0.08). CONCLUSION: Although number of participating patients was small, the EQ-5D and the FACT-G have demonstrated validity for patients with DLBCL following treatment with 90Y-Zevalin. The greatest impact of 90Y-Zevalin therapy is an improvement in physical well-being, with an increased level of energy, reduced amount of pain and reduced level of “feeling ill”. EQ-5D dimension % of patients reporting “Some or extreme problems” at baseline Mobility 26 Self-care 12 Usual activities 29 Pain/discomfort 54 Anxiety/depression 58

Quality of life before and after cosmetic surgery

CNS Spectrums ◽  
2013 ◽  
Vol 19 (4) ◽  
pp. 282-292 ◽  
Author(s):  
Jean-Charles Bensoussan ◽  
Michael A. Bolton ◽  
Sarah Pi ◽  
Allycin L. Powell-Hicks ◽  
Anna Postolova ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cosmetic Surgery ◽  
Measurement Techniques ◽  
Future Research ◽  
Before And After ◽  
Related Quality ◽  
Health Related ◽  
Surgery Research ◽  
The Impact

This article reviews the literature regarding the impact of cosmetic surgery on health-related quality of life (QOL). Studies were identified through PubMed/Medline and PsycINFO searches from January 1960 to December 2011. Twenty-eight studies were included in this review, according to specific selection criteria.The procedures and tools employed in cosmetic surgery research studies were remarkably diverse, thus yielding difficulties with data analysis. However, data indicate that individuals undergoing cosmetic surgery began with lower values on aspects of QOL than control subjects, and experienced significant QOL improvement post-procedurally, an effect that appeared to plateau with time.Despite the complexity of measuring QOL in cosmetic surgery patients, most studies showed an improvement in QOL after cosmetic surgery procedures. However, this finding was clouded by measurement precision as well as heterogeneity of procedures and study populations. Future research needs to focus on refining measurement techniques, including developing cosmetic surgery–specific QOL measures.

Health-Related Quality of Life Under Six Months' Treatment of Migraine-An Open Clinic-Based Longitudinal Study

Cephalalgia ◽  
1995 ◽  
Vol 15 (5) ◽  
pp. 414-422 ◽  
Author(s):  
CGH Dahlöf
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Term Treatment ◽  
Health Related Quality ◽  
Short Term ◽  
Short Term Treatment ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Health-related quality of life (HQL) assessment in the clinical setting have distinguished subjective perceptions (e.g. well-being), signs/symptoms of the disease, and functional capacity as three major components. The impact of short-term treatment for migraine attacks on these variables was evaluated in an open prospective 6-month study at the Gothenburg Migraine Clinic. Socio-economic factors, subjective symptoms, and general well-being/quality of life were evaluated by self-administered questionnaires in 99 patients with migraine with or without aura in accordance with the classification of the International Headache Society. Short-term treatment comprising conventional therapy or subcutaneous sumatriptan reduced number of days per month with migraine and absenteeism from work, migraine-associated symptoms, but did not significantly improve general well-being between attacks. Future assessment of the patients' HQL in accordance with this approach would enable us to consider all the advantages and disadvantages of current therapies of particular interest in the field of migraine.

scholarly journals P248 Assessment of health-related quality of life of paediatric Inflammatory Bowel Disease patients through the IMPACT-III questionnaire

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S289-S289
Author(s):  
J A Vázquez Gómez ◽  
M Velasco Rodríguez-Belvís ◽  
L M Palomino Pérez ◽  
P Sánchez Llorente ◽  
C Aguilar Ladrón de Guevara ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Body Image ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Health-related quality of life (HRQOL) is a multi-dimensional concept used to examine the impact of health status on their global well-being. The IMPACT-III is a 35-item questionnaire specifically designed to evaluate the quality of life of patients with paediatric Inflammatory Bowel Disease (pIBD). This questionnaire had its origin in 1999 in Canada (Otley et al.) and, since then, it has been adapted to many languages. The objective of this study was to assess the quality of life of pIBD patients using the IMPACT-III questionnaire and to identify specific needs according to the patient’s profile. Methods An observational, descriptive, and retrospective study was carried out in November 2020, including the pIBD patients undergoing follow-up in a tertiary hospital that have previously completed the IMPACT-III questionnaire. Epidemiological and clinical data were anonymously retrieved from the electronic medical records. We established three blocks of IMPACT-III items according to physical, emotional and social well-being, or to the perception of body image. The results of each block and totals were compared according to gender, age, diagnosis, time of evolution, activity and treatment. To make the comparison, the Mann-Whitney U test for independent samples for 2 groups and the Kruskal-Wallis test for 3 or more independent groups were used. The statistical analysis was performed using SPSS software and the results were considered statistically significant when reaching a bilateral critical level (p) ≤ 0.05, with a 95% confidence interval. Results We included a total of 40 patients. There were no significant differences according to gender, type of IBD or type of treatment. The group of adolescents obtained a higher score in the body image block (p = 0.009). Patients with over two years of evolution of the disease obtained statistically significantly higher scores in the physical well-being block (p = 0.027). In patients who filled out the questionnaire during a flare, the scores on questions of physical well-being (p = 0.007), emotional and social (p = 0.037), as well as total (p = 0.012) were significantly higher. Overall, 31 patients (77.5%) answered that IBD had negatively affected their family. Conclusion Our data suggest that patients with a longer evolution time, adolescents and patients suffering an active flare seem to report a worst HRQOL. Patients with the mentioned characteristics constitute a vulnerable population with special care needs that should be addressed from an interdisciplinary point of view. Despite the limitations of the retrospective design and the scarce number of patients, our results indicate that family-centered care should be a priority.

scholarly journals Health-Related Quality of Life and Fatigue in Children and Adults with Pyruvate Kinase Deficiency

2021 ◽  
Author(s):  
Hanny Al-Samkari ◽  
Eduard J van Beers ◽  
D Holmes Morton ◽  
Stefan Eber ◽  
Satheesh Chonat ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pyruvate Kinase ◽  
Well Being ◽  
Health Related Quality ◽  
Specific Symptom ◽  
Pyruvate Kinase Deficiency ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Pyruvate kinase deficiency (PKD) is the most common cause of congenital non-spherocytic hemolytic anemia. Although recognition of the disease spectrum has recently expanded, data describing its impact on health-related quality of life (HRQoL) are limited. In this prospective international cohort of 254 patients (131 adults and 123 children) with PKD, we assessed the disease impact on HRQoL (EuroQL-5D, PedsQL, FACT-An) and fatigue (PROMIS Fatigue, PedsFACIT-F) using validated measures. Significant variability in HRQoL and fatigue was reported for both adults and children although individual scores were stable over a 2-year interval. While adults who were regularly transfused reported worse HRQoL and fatigue compared to those who were not regularly transfused (EQ-VAS 58 vs. 80, p=0.01), this difference was not seen in children. Regularly transfused adults reported lower physical, emotional, and functional well-being and more anemia symptoms. Both HRQoL and fatigue significantly differed in children by genotype with the worst scores in those with two severe PKLR mutations; this difference was not seen in adults. However, iron chelation was associated with significantly worse HRQoL scores in both children and adults. Pulmonary hypertension was also associated with significantly worse HRQoL. In PKD-specific symptom assessment, 59% of adults and 35% of children reported that their jaundice upset them, identifying this as an important symptom for consideration. While current treatments for PK deficiency are limited to supportive care, new therapies are currently in clinical trials. Understanding the impact of PKD on HRQoL is important to assess the utility of these treatments. (Clinicaltrials.gov number NCT02053480)

Sign in / Sign up

Export Citation Format

Share Document