scholarly journals Health-related quality of life in patients with hemoglobinopathies

Hematology ◽  
2012 ◽  
Vol 2012 (1) ◽  
pp. 284-289 ◽  
Author(s):  
Julie A. Panepinto
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Patients Experience ◽  
The Impact ◽  
Health And Well Being

Abstract The use of patient-reported outcomes to measure the health and well-being of patients from their perspective has become an acceptable method to determine the impact of a disease and its treatment on patients. In patients with hemoglobinopathies, prior work has demonstrated that patients experience significant impairment in health-related quality of life (HRQL, a type of patient-reported outcome). This work has provided a better understanding of the burden that these patients experience and the factors that are associated with worse HRQL. The recent development of disease-specific HRQL instruments in sickle cell disease heralds new opportunities to explore the impact of the disease and its treatment on patients. The standards necessary to incorporate the measurement of HRQL into clinical trials are now well outlined by regulatory agencies. Measuring HRQL within a clinical practice setting and outside of the healthcare setting while the patient is at home are now possible and present new opportunities to understand the health and well-being of patients with hemoglobinopathies.

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.

Health-Related Quality of Life Measurement in Public Health

2021 ◽  
Vol 43 (1) ◽  
Author(s):  
Robert M. Kaplan ◽  
Ron D. Hays
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Publication Date ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Patient-reported outcomes are recognized as essential for the evaluation of medical and public health interventions. Over the last 50 years, health-related quality of life (HRQoL) research has grown exponentially from 0 to more than 17,000 papers published annually. We provide an overview of generic HRQoL measures used widely in epidemiological studies, health services research, population studies, and randomized clinical trials [e.g., Medical Outcomes Study SF-36 and the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29]. In addition, we review methods used for economic analysis and calculation of the quality-adjusted life year (QALY). These include the EQ-5D, the Health Utilities Index (HUI), the self-administered Quality of Well-being Scale (QWB-SA), and the Health and Activities Limitation Index (HALex). Furthermore, we consider hybrid measures such as the SF-6D and the PROMIS-Preference (PROPr). The plethora of HRQoL measures has impeded cumulative science because incomparable measures have been used in different studies. Linking among different measures and consensus on standard HRQoL measurement should now be prioritized. In addition, enabling widespread access to common measures is necessary to accelerate future progress. Expected final online publication date for the Annual Review of Public Health, Volume 43 is April 2022. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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

Relationship between financial toxicity and health-related quality of life in patients with advanced solid tumors.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 31-31
Author(s):  
Jonas A. De Souza ◽  
Bonnie J. Yap
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Tumor Type ◽  
Financial Toxicity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Cost

31 Background: Financial toxicity is an important Patient-Reported Outcome (PRO). Its relationship with health-related quality of life (HRQOL) has not been previously described. Therefore, we report the relationship between financial toxicity and health-related quality of life (HRQOL) in patients with advanced cancers. Methods: The global HRQOL was measured by the Functional Assessment of Cancer Therapy-General (FACT-G) and its subscales Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB) and Functional Well-Being (FWB). Financial toxicity was assessed by the COST (COmprehensive Score for financial Toxicity), a PRO measure previously developed in 155 patients with advanced cancers. Correlations were calculated using Spearman's correlation. Subject data on tumor type, age, gender, race, income, insurance type and educational level were collected. Results: Fifty patients were assessed. All participants were diagnosed with advanced cancers, were receiving treatment at the time of participation, and had received treatment for at least 3 months. The median COST was 22 (range 0-44), and mean 22.51 (s.d. ±10.80). A negative correlation existed between the COST and HRQOL as measured by the FACT-G (r = -0.47, P <.001), and its subscales: PWB (r=-0.35, p < 0.05), SWB (r=-0.33, p < 0.05), EWB (r=-0.32, p < 0.05) and FWB (r=-0.41, p < 0.01). In this small sample, there were no correlations between the COST and sociodemographic characteristics. Conclusions: Results demonstrate an inverse relationship between patient-reported HRQOL and financial toxicity, suggesting that higher financial toxicity is associated with worse HRQOL. A larger study is in progress to identify cancer patients at higher risk of financial toxicity.

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.

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