Quality of Life in Adolescents and Adults with Thalassemia: A Report of the Thalassemia Longitudinal Cohort.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 556-556
Author(s):  
Amy Sobota ◽  
Robert Yamashita ◽  
Yan Xu ◽  
Felicia Trachtenberg ◽  
Dorothy A. Kleinert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conflicts Of Interest ◽  
Short Form ◽  
Well Being ◽  
Self Report ◽  
Functional Health ◽  
Longitudinal Cohort ◽  
The Us ◽  
Adolescents And Adults

Abstract Abstract 556 Background: Advances in the treatment of thalassemia have led to increased life expectancy, making outcomes such as health related quality of life (HRQOL) especially important in assessing interventions. However little has been published about the HRQOL of patients living with thalassemia. We report the baseline data from the Thalassemia Clinical Research Network's (TCRNs) Thalassemia Longitudinal Cohort (TLC) study. Patients and Methods: The TCRN is an NIH sponsored network of 16 major thalassemia centers in the US, Canada and London. This study is part of the TCRN's longitudinal cohort (TLC) study. HRQOL was measured by self-report with the Medical Outcomes Study 36-Item Short Form Health Survey version 2 (SF36v2), a generic measure of functional health status and well being with results reported as 8 subscale and two summary measures. It has been validated in numerous populations and diseases, and is considered the gold standard for measuring HRQOL. We report here the results from 245 patients over the age of 14 who completed baseline assessments. Comparisons within the study population and with US norms using t-test and linear regression were performed. Results: There were 245 patients [47% male; mean age 29 years (range 14-58)]. When compared to US norms, TLC patients had statistically significant (p<0.05) worse HRQOL on 5 of the 8 SF36v2 subscales (physical functioning, role-physical, general health, social functioning and role-emotional) and on both summary scales (physical component summary and mental component summary). As is also seen in the US population, women had worse HRQOL than men on all subscales except vitality, and on both component summary scores. HRQOL decreased with age in all scales, more so than expected compared to US norms. Conclusions: In general, adolescents and adults with thalassemia have worse HRQOL than the US population, despite contemporary therapy. Further investigation is needed to determine predictors of low HRQOL so that these may be better addressed by a multidisciplinary team. Disclosures: No relevant conflicts of interest to declare.

SF-36 quality of life questionaire evaluation in a large cohort of women with breast cancer treated with hormonotherapy

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 19657-19657
Author(s):  
E. L. Morgenfeld ◽  
B. Rolnik ◽  
L. Cassab ◽  
D. Gercovich ◽  
F. Negro ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Body Weight ◽  
Body Weight Gain ◽  
Short Form ◽  
Well Being ◽  
Menopausal Symptoms ◽  
Functional Health ◽  
Sf 36

19657 Background: Hormonotherapy (H) is the most widely used treatment against breast cancer (BC). The aim of this study is a prospective evaluation with an enriched the SF-36 questionnaire, of the QOL of BC patients (pt) treated with H at the IOHM. Specific questions regarding menopausal symptoms and body weight were added. Methods: Between Aug 2005 and Nov 2006, all pt that were undergoing H, were requested to fill out a SF-36 self-evaluation form. The SF-36 is a multi-purpose, short-form health survey, with 36 questions about functional health and well-being. The answers were tabulated. The pre-treatment and post-treatment body weight of each pt was registered. Results: Three Hundred and Twenty-six pt were invited to participate, and all of them accepted, and signed a consent form. Characteristics of the population: Diagnosis: DCIS: 36 pt; LCIS: 5 pt; IDC 250 pt; ILC: 35 pt. All cases expressed hormonal receptors. The H was adjuvant in 254 pt (78%) mostly treated with T and palliative in 72 pt (22%) mostly treated with AI. Median age was 62 years, however 63 pt (19%) were pre-menopausal. The median time under treatment was 33 months (range 1–71 m). The pt reported: General evaluation of Quality of life: Very good or excellent: 154 pt (47%) , Good: 134 pt (41%), Poor: 34 pt (11%). Severe limitations for demanding physical activities: 43 pt (13 %). A reduction of time spent on the job: 66 pt (22%). Severe pain during the last four weeks prior to answering the questionnaire: 24 pt (8 %). Weight increase perception: 153 pt (47%). Actual increase of weight: 192 pt (60%) (Median: 4 kg). Menopausal symptoms: Daily Hot Flushes: 132 pt (40%). Vaginal discharge 110 pt (33%) Decrease of libido: 98 pt (30%), Vaginal dryness 76 pt (23%), Nightly sweats: 40 pt (12%). Sixty pt (18%) suffered from and received treatment for menopausal symptoms. Conclusions: 1) The SF-36 is a useful tool to measure the BC patients’ quality of life 2) Although in our cohort most of the patients (88,3%) rated their general QOL as “good to very good”, a third of the pt presented severe menopausal symptoms, and 18% received non hormonal medication for symptoms relief 3) Sixty percent of the pt had a median body weight gain of 4 Kg. No significant financial relationships to disclose.

scholarly journals Long-term Outcomes in Adolescents and Adults with a Cleft Lip and/or palate: Esthetics, Employment and Functioning

2021 ◽  
Author(s):  
Cassandra Alighieri ◽  
Evelien D'haeseleer ◽  
Kim Bettens ◽  
Katrien Bonte ◽  
Hubert Vermeersch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Self Report ◽  
Control Group ◽  
Older Individuals ◽  
Significant Difference ◽  
Adolescents And Adults ◽  
The Impact

Abstract Background. To date, there seems to be no consensus on the long-term quality of life outcomes in patients living with a cleft of the lip and/or palate (CL/P) with regard to well-being and functioning. Some studies report a substantial influence of having a cleft while other studies report no influence of living with a cleft. The purpose of this study was to investigate the impact of living with a CL/P on esthetics, employment and functioning in Dutch-speaking adolescents and adults with a CL/P. Methods. 30 Patients with a CL/P (19 men and 11 women) were included in the study. The mean age of the participants was 26.93 years (SD = 11.688 years, range = 15 – 66 years). An age and gender matched control group was included consisting of 30 participants (19 men and 11 women) without a CL/P with a mean age of 26.87 years (SD = 11.729 years, range = 16-67 years). Esthetics, employment and functioning were assessed using different standardized self-report questionnaires. Results. No statistically significant difference in educational level, employment, monthly net income, marital status and having children was found between participants with and without a CL/P. In addition, the quality of life scores did not differ between the two groups. Within the group of individuals with a CL/P, the findings revealed that the proportion of participants who reported an influence of the CL/P on daily functioning, general well-being, social contacts, family life, applying for a job, work, education and leisure time differed by age. Older individuals experienced more influence of their CL/P compared to younger individuals. With regard to esthetics, the findings revealed that participants without a CL/P were less satisfied with the appearance of their jaws compared to participants with a CL/P. Conclusion. In general, the findings of our study revealed no significant differences between adolescents and adults with and without a CL/P with regard to employment and functioning. Considering age within the group of participants with a CL/P, however, the results demonstrated that older individuals were more likely to experience a negative impact of their cleft on well-being and functioning. These findings suggest that older individuals with a CL/P might benefit from additional socio-emotional support, for example peer contacts and support groups or psychological guidance. Longitudinal research on this topic is highly needed to determine possible fluctuations in the impact of living with a CL/P.

Quality of life of patients with Sjogren’s disease with ongoing therapy with diseasemodifying antirheumatic drugs

2020 ◽  
pp. 33-38
Author(s):  
E. Yu. Gan ◽  
L. P. Evstigneeva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Life Quality ◽  
Well Being ◽  
Disease Modifying Antirheumatic Drugs ◽  
Antirheumatic Drugs ◽  
Sf 36 ◽  
Disease Modifying ◽  
Sjögren’S Disease

Purpose of the study. Assessing the association between the life quality of patients with Sjogren’s Disease and ongoing therapy with various disease-modifying antirheumatic drugs.Material and methods. The study was conducted on the basis of the regional rheumatology center of the consultative diagnostic clinic of the Sverdlovsk Regional Clinical Hospital No. 1. This work is based on the results of a simultaneous study of 74 patients with primary Sjogren’s Disease (SD), distributed in three comparison groups receiving various disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine. The diagnosis of SD was carried out according to European-American criteria AECGC (2002) [18]. In order to analyze the quality of life of patients with SD, the 36-Item Short Form Health Survey (SF‑36) was used. Statistical data processing was carried out using Statistica 7.0 program.Results. Assessment of the quality of life of patients with SD, which is an integrative criterion of human health and well-being, revealed the absence of statistically significant differences (p > 0.05) on eight scales and two health components of the SF‑36 questionnaire in the analyzed groups that differ in the treatment of disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine.Conclusions. The obtained data indicate an equivalent quality of life in SD patients treated with different disease-modifying antirheumatic drugs methotrexate, chlorambucil and hydroxychloroquine, and therefore hydroxychloroquine can be considered as an alternative basic therapy in patients with SD with certain limitations and contraindications methotrexate and chlorambucil.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.

Mindfulness-based stress reduction for people with chronic diseases

2010 ◽  
Vol 16 (3) ◽  
pp. 200 ◽  
Author(s):  
Monika Merkes
Keyword(s):  
Quality Of Life ◽  
Chronic Diseases ◽  
Stress Reduction ◽  
Well Being ◽  
Multiple Chemical Sensitivity ◽  
Self Report ◽  
Original Research ◽  
Mindfulness Based Stress Reduction ◽  
The Impact

Mindfulness-based stress reduction (MBSR) is a structured group program that uses mindfulness meditation to improve well-being and alleviate suffering. This article reviews the impact of MBSR for people with chronic diseases. The review includes original research that was published in English and peer-reviewed and reported outcomes for adults with chronic diseases who had participated in an MBSR program. Fifteen studies were identified. Outcomes related to mental and physical health, well-being, and quality of life. The studies included different research designs, and used self-report and physiological outcome measures. Participants’ clinical diagnoses included fibromyalgia, chronic pain, rheumatoid arthritis, type 2 diabetes, chronic fatigue syndrome, multiple chemical sensitivity, and cardiovascular diagnoses. All 15 studies found that participation in an MBSR program resulted in improvements. No negative change was reported between baseline and follow up. Outcomes in regard to specific variables were difficult to compare and equivocal. Overall, positive change predominated. Chronic diseases are associated with a range of unwelcome psychological and physical consequences. Participation in an MBSR program is likely to result in coping better with symptoms, improved overall well-being and quality of life, and enhanced health outcomes. As an adjunct to standard care, MBSR has potential for much wider application in Australian primary care settings.

Quality of life outcomes in sarcoma patients receiving care at a tertiary center.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e23557-e23557
Author(s):  
Jonathan R. Day ◽  
Benjamin Miller ◽  
Sarah L. Mott ◽  
Bradley T. Loeffler ◽  
Munir Tanas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Radiation Treatment ◽  
Soft Tissue Sarcomas ◽  
Well Being ◽  
Self Report ◽  
University Of Iowa ◽  
Treatment Type ◽  
Tertiary Center ◽  
Multiple Domains

e23557 Background: Sarcomas are a diverse group of neoplasms that vary greatly in clinical presentation and responsiveness to treatment. Given the differences in the sites of involvement, rarity, and treatment modality, a multidisciplinary approach is required. Previous literature suggests patients with sarcoma suffer from poorer quality of life (QoL) especially physical and functional well-being. This study aims to understand if there is an association between treatment at a tertiary sarcoma center and a difference in QoL. Methods: De-identified data was obtained from the Sarcoma Tissue Repository at University of Iowa. Mixed effects regression models were utilized to evaluate the association between disease and treatment characteristics and QoL. QoL was assessed using the self-report FACT-G questionnaire at 12-, 24-, and 36-months post-diagnosis; overall scores and the 4 well-being subscales (Physical, Emotional, Social, Functional) were calculated. Results: 443 patients were identified. Soft tissue sarcomas were more prevalent (87.6%) than bone (12.4%). 53% of patients received chemotherapy and 38.6% got radiation therapy. Sarcomas were most frequently located in the lower extremities(ext.) (33.1%), followed by abdomen (20.9%), pelvic (13.6%), upper ext. (13.1%), thorax (11.3%), head & neck (7.8%). For ext. sarcoma; lower ext: 144 (71.3%), Upper ext: 58 (28.7%). Patients with extremity sarcoma; 133 had limb sparing and 48 had amputations. FACT-G Scores did not appreciably vary between 12, 24-, and 36-month for any QoL responses. Overall well-being had a mean score reported of 87.7 (sd = 15.7). Social well-being sores averaged 23.5 (5.0). Emotional well-being (EWB) 19.2 (4.1) and functional well-being (FWB) 21.3 (6.1), and physical well-being (PWB) 23.7 (4.6). There was no association between overall, PWB, EWB, or FWB with the histological subtype, radiation treatment, type of limb surgery, or any location in the same patients over time. Chemotherapy treatments were associated with lower well-being in multiple domains; PWB scores being 2.01 points lower, (p < 0.01), EWB scores being 1.27 points lower (p = 0.01) and FWB scores being 1.72 (p = 0.03), and 4.44 points lower overall (p = 0.03), on average, after adjusting for overall changes across time. Patients with ext. sarcoma only overall FACT-G scores differed 6.72 points higher for upper ext. than lower ext (p = 0.04). Conclusions: Overall QoL areas were similar to normative FACT-G scores both overall and specific areas. Having received chemotherapy was associated with lower well-being scores physically, emotionally, functionally, and overall. There were no clinically relevant differences reported in QoL scores between 12-,24-, and 36-months in the same patients. Further work is needed to describe QoL differences among patients with sarcoma at tertiary centers and examine what protective factors may influence patient well-being.

scholarly journals Symptom Experience and Quality of Life of Patients with Breast Cancer Receiving Chemotherapy in Bangladesh

2016 ◽  
Vol 15 (2) ◽  
pp. 201-206
Author(s):  
Mosammat Shamsun Naher Begum ◽  
Wongchan Petpichetchian ◽  
Luppana Kitrungrote
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Medical Science ◽  
Well Being ◽  
Significant Negative Correlation ◽  
Moderate Level ◽  
Self Report ◽  
Symptom Experience ◽  
Breast Cancer Patients

Background: The present study was aimed to the relationships between symptom severity and distress and quality of life (QoL) of patients receiving chemotherapy for breast cancer.Objectives and methodology: A total number of 132 patients, attending both In-patient and Out-patient department and fulfilling the recruitment criteria were included in the study. A self-report questionnaire was used to collect data from the eligible participants by the primary investigator. The data were analyzed by using descriptive and inferential statistical tools. Results: On average, the participants of the study experienced seventeen symptoms with moderate level. The level of QoL of the participants was at moderate level (M=2.02, SD=0.39). Among all the subscales, the physical well-being had the lowest score and social well-being had highest score. Symptom experience and quality of life showed significant negative correlation. Conclusion: The patients with breast cancer would experience high symptoms during a 7-day period after receiving chemotherapy of the previous cycle. Nurses need to perform full measurement of multiple symptoms when care for breast cancer patients after the administration of chemotherapy.Bangladesh Journal of Medical Science Vol.15(2) 2016 p.201-206

scholarly journals Fear of COVID-19 and work-quality of life among nurses: The mediating role of psychological well-being

2021 ◽  
pp. 1985-1990
Author(s):  
Ahmet Maslakçı ◽  
Lütfi Sürücü ◽  
Harun Sesen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Work Life ◽  
Self Report ◽  
Quality Of Work Life ◽  
Psychological Well Being ◽  
Work Quality ◽  
Quality Of Work ◽  
Quality Of Life Scale

This study was conducted in order to analyze the effect of the nurses’ quality of work life based on fear about COVID-19 and examine the psychological well-being as a moderating variable in this relationship. The survey questionnaire was administered among nurses between 1 November 2020 and 14 November 2020. The self-report survey comprised the nurse information survey, Fear of COVID-19 Scale, work quality of life scale, and psychological well-being scale as data collection tools. Data were obtained from 339 nurses. The findings show that fear of COVID-19 negatively affects nurses’ quality of work life. It has been determined that PWB plays a moderating role in this relationship. While the fear of COVID-19 negatively affects the quality of work life in nurses with low psychological well-being, there is not any kind of significant effect on the quality of work life in nurses with high psychological well-being. This result shows that as the psychological well-being of nurses’ increases, fear of COVID-19 effect on quality of work life decreases. The results of the study show that responses designed to enhance psychological well-being can enhance nurses' working conditions that could reduce the negative effects of the fear of COVID-19. There is an urgent need for clinical and policy strategies to help increase nurses’ PWB in order to increase the quality of work life by reducing fear and also anxiety among nurses fighting on the front line during COVID-19.

scholarly journals Health-Related Quality of Life in Exclusively Breastfed Filipino Mother-Infant Dyads (P11-059-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Elvira Estorninos ◽  
Rachel Lawenko ◽  
Katherine Buluran ◽  
Yipu Chen ◽  
Jowena Lebumfacil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Gastrointestinal Symptoms ◽  
Well Being ◽  
The Philippines ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Objectives Health-related quality of life (QoL) is an important component of overall wellbeing. The study aimed to describe the parent-perceived infant quality of life of exclusively breastfed infants along with their mother's physical and mental health in a Filipino cohort. Methods Healthy term infants, who were exclusively breastfed since birth and whose mothers had decided to exclusively breastfeed until 6 months (m) of age, were enrolled at 21–26 days of age from a single center in the Philippines. Parents completed the Infant Toddler Quality of Life Questionnaire (ITQoL) and the Short Form Health Survey (SF-36v2) (assessing maternal QoL) at enrollment and when infants were 2.5 m, 4 m, and 6 m of age. Infants’ anthropometrics were measured and parents completed gastrointestinal (GI) diaries and Infant Gastrointestinal Symptoms Questionnaire (IGSQ) throughout the study. Results Among 75 enrolled infants, 70 completed the study at age 6 m. Infant QoL mean scores were high throughout the study (range 0–100 for each concept; Table 1). Nonetheless, noticeable improvements were observed between enrollment and 2.5 m, especially in the infant-focused concept of Temperament and Moods as well as in all three parent-focused concepts (Emotional, Time, and Family Cohesion) which measure impact of child's health on parents. Between 2.5 and 6 m, the scores remained relatively stable. For maternal QoL mean scores (scores standardized to Mean = 50, SD = 10 for each scale; Table 1), noticeable improvements were observed between enrollment and 2.5 m, with Physical Health showing more pronounced improvements. The Role-Emotional scale, which measures role limitations due to emotional problems, showed the lowest scores. From enrollment to age 6 m, mean z-scores for weight-for-age, length-for-age and head circumference-for-age stably tracked WHO Growth Standards. Additionally, infant stool consistency became more formed, and incidences of spitting up/vomiting and flatulence decreased. The overall GI burden also decreased (IGSQ index score: range 13–65; 15.8 ± 3.2 at enrollment and 14.0 ± 1.2 at 6 m). Conclusions In a cohort of exclusively breastfed Filipino mother-infant dyads, parent-perceived infant health-related quality of life was high and comparable to that reported in literature1. Maternal quality of life, particularly their perceived state of emotional well-being, warrants further investigation. Funding Sources Nestec Ltd. Supporting Tables, Images and/or Graphs

scholarly journals Chronic Spontaneous Urticaria and Type 1 Diabetes Mellitus—Does Quality of Life Impairment Always Reflect Health Danger?

2020 ◽  
Vol 9 (8) ◽  
pp. 2505
Author(s):  
Zenon Brzoza ◽  
Katarzyna Nabrdalik ◽  
Lukasz Moos ◽  
Hanna Kwiendacz ◽  
Karina Badura-Brzoza ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetes Mellitus ◽  
Social Functioning ◽  
Short Form ◽  
Well Being ◽  
Chronic Spontaneous Urticaria ◽  
The Mean ◽  
Being There

Background and aims: Chronic spontaneous urticaria (CSU) and diabetes mellitus type 1 (T1DM) may compromise the quality of life (QoL). We decided to compare the QoL of T1DM patients to those suffering from CSU. Materials and methods: Sixty-six patients with well-controlled T1DM (male 52%) in the mean age of (SD) 36.3 (11.09) years and 51 patients with CSU (male 33%) in the mean age of (SD) 35.8 (8.53) years were enrolled in this observational study. All the participants completed a Short-Form 36 (SF-36) QoL. Results: The QoL related to social functioning was significantly worse among CSU patients. There were differences related to gender found in the group of patients with T1DM—where men tended to declare a better quality of life than women (p = 0.015)—especially in the area of energy/fatigue and pain. It appeared that due to physical and emotional problems occurring in married patients, the QoL is lower in T1DM group in comparison to the CSU one. Conclusions: The patients with CSU presented significantly worse social functioning compared to the ones with T1DM. This fact proves the QoL impairment level is not always related to the level of health danger. The differences in the QoL related to gender and marital status found among T1DM patients point to the necessity for further exploration in a larger group of patients. Due to the fact that optimal disease management should ensure patient’s good emotional well-being, there is a need for additional psychological and social care for patients from those two groups.

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